LindaGromkoMDkidneycare

Day of Remembrance Offers Poignant Support

2011-12-03T15:33:00.000-08:00

I've been in health care as a nurse or as a physician for nearly forty years. I've seen people live and die with all sorts of illnesses. But never any disease as relentless or as complex as End Stage Renal Failure. Thankfully, we have transplant and dialysis - but these aren't exactly a walk in the park.

With dialysis, you must affirm your decision to live every day - or at least, you affirm your decision to try not to die.

"Civilians" don't always do that - and maybe we should.

Today, in a Ceremony of Remembrance held at the SeaTac Kidney Center, a harp played as folks gathered. Then, a chaplain lead readings about grief and loss.

At one point, everyone was given the opportunity to place a colorful stone in a bowl of water at the front of the room. The bowl sat on what looked something like an altar, flanked by a floral arrangement and flickering candles. We then took another stone with us to keep as a remembrance.

Person after person stood, approached the table, and picked up their polished stones.

"For my husband, Steve Williams," I said, as I deposited the stone with the others in the bowl of water.

"For my little brother, Steve Williams," said Carole.

And on and on, each person remembering a spouse, a parent, or worse - a child. Some of the losses were very recent. The Kidney Center organizers had been considerate in leaving a small packet of Kleenex on every other chair.

Everybody in that room - at least everybody who had lost someone - knew about kidney disease in a way the rest of the world simply cannot.

As we left, we noticed that wall defining our hallway was shared by an active dialysis center - with treatments going on, even as we remembered our lost loved ones. We saw the overhead television monitors; we couldn't see the patients, of course.

But we knew that somebody there was likely having fistula challenges. Somebody was forgetting to take their phosphate binders. Somebody was having muscle cramps at the end of their treatment. Somebody was waiting for a transplant. Somebody was watching football to pass the time, and somebody was simply bored.

End Stage Renal Failure is a condition you want to prevent at all costs. Remember, the most common causes are high blood pressure and diabetes - often preventable, always modifiable.

On a day of remembrance, we remember the people we've lost. But, we remember what the disease was like also.

Take care,
Linda Gromko, MD

Ceremony of Remembrance Set for Saturday, December 3, 2011

2011-11-08T10:39:00.000-08:00

The Northwest Kidney Centers' annual Ceremony of Remembrance is scheduled for Saturday, December 3rd at the SeaTac Pavilion (17900 International Boulevard South; SeaTac, WA 98188). The ceremony will be held from 10-11 a.m. Attendees are invited to bring a memento of their loved one for the Memory Table.

So, what to put on the Memory Table? There's certainly no one thing that captures the essence of my late husband, Steve Williams.

Maybe the grey knit stocking cap and matching gloves I'd put on Steve when we'd go on our dates during the last few months of his life. Dates via Access Bus that allowed us to take in a movie and a meal, dates that gave us a few wonderful hours of fantasy-normalcy each week.

"Linda Jo," Steve would say referencing his marginal appearance, "Let's go out and sell us some pencils!"

Or maybe it will be the "Life is Good" brand T-shirt I bought for Steve when we went to San Diego for the IHRSA Convention (a convention for those in the fitness industry). We went with dialysis machine and all - dialyzing him in the hotel in the evenings. Steve wore that shirt constantly. Maybe it was the salmon on the front; maybe it was the caption: "Good Catch." He was a great catch!

I'm glad there's a ceremony. People we love slip away too fast, and the world moves on - as it should. But the people left behind after a loved one's kidney failure and dialysis have a different perspective of the world, I'd imagine. I know I do.

For further details, and RSVP information, google up Northwest Kidney Centers.

Take care,
Linda Gromko, MD

The Little Kidney Blog Hits 10,000 Pageviews!

2011-09-02T08:41:00.000-07:00

Today, my little "Kidney Blog" hit 10,000 page views. I know that may not be an enormous readership as blogs go, but for a little blog of such humble beginnngs - and grandiose intentions - it feels like a milestone to me.

The intentions have been as follows:

To chronicle issues of Home Dialysis, both hemodialysis and peritoneal dialysis - at least from the experience of Steve and me
To focus on the support of the all-important CarePartner in Home Dialysis
To increase awareness of Chronic Kidney Disease - and its prevention.

But the blog has covered other issues also. Issues like rehab, dealing with chronic illness, grieving, preparing the home for ongoing medical care. The most widely read post was not about kidney disease at all!

From the blog's beginning on October 25, 2009, the most popular posts have been:

A Young Breast Cancer Survivor Talks About Discussing Chronic Conditions with Children - March 10, 2010.
Stephen Martin Williams (8/16/49-4/13/2011) - April 14,2011
Welcome to Linda Gromko's Blog - October 25, 2009
Amputation Puns and Drug Delerium - April 10, 2011
The Inn at Cherry Hill - Useful Recycling of Old Hospital Space - April 15, 2010

Thank you for following along on this journey. Please keep reading as the journey continues.

Take care,
Linda Gromko, MD

Journaling Reminds us Where We've Been

2011-08-28T13:03:00.000-07:00

I don't write an official "journal." Rather, I write chapters - currently, I am working on a book with the working title: "From Complications to Grace: A Family Doctor's Journey." This will be the "rest of the story." My first book, "Complications: A Doctor's Love Story,":chronicled Steve's first year of End Stage Renal Disease, discussed Home Dialysis in some detail, and basically told the story of finding an atypical love in midlife.

Another great tool for journaling is, of course, blogging. This very simple accessible tool allows us to chronicle our own lives - and to be diligent at the discipline of regular writing. (Try your own at http://www.blogger.com/.)

Why should we journal anyway?

In my experience, journaling - by whatever techique you happen to like - is inexpensive therapy. It collects our thoughts, allows us to ventilate, and most importantly, allows us to keep track of what we've gone through. It facilitates enormous catharsis.

My favorite journaling outcome is that I can say, " I may be stressed or struggling right now, but look what I've made it through! This is a relatively easier time. I can certainly make it through this."

Simply put, journaling reminds us that we are stronger than we might believe at any given moment.

Look for "From Complications to Grace: A Family Doctor's Journey" sometime this winter. It won't be boring. And I'm open to any modifications of my working title. I remember that Steve's preferred title for the first book was "Steve Williams is Sexually Gifted."

Journaling keeps our humor accessible, even when we are grieving.

Take care,
Linda Gromko, MD

How Could a Caregiver Miss Dialysis?

2011-08-13T09:33:00.000-07:00

My husband Steve will have been gone, i.e. dead, for four months as of today. I have slept, almost uninterrupted, for that entire time - not waking up to reposition him through the night.

He wasn't a "typical" dialysis patient, if such exists. He had "Critical Illness Myopathy," and therefore, had limited movement. He was wheelchair-bound. He couldn't move himself to a sitting position or turn over by himself. All activities of daily living required assistance.

Home hemodialysis gave way to home peritoneal dialysis when blood access points became unavailabe. Finally, after a leg amputation, Steve's body just gave out.

My life has been full of changes - the greatest, of course, is that I miss Steve. I'm very busy: with my medical practice, with rowing, with writing. And most of the time, I get by with just managing the busy-ness. It isn't avoidant; I feel more normal when I'm occupied.

I remember when a friend's husband was very ill and transitioned to in-Center dialysis, she commented that she missed doing home dialysis.

I "got it" then, of course. She probably missed the closeness of the required attention, and sensed the foreboding of the change.

I miss the ritualistic closeness - the time Steve and I spent together in this chosen path. We knew it beat the alternatives hands down: the alternatives being death or in-Center dialysis.

I miss the movies we watched during dialysis, the ever-present cooking shows (even when Steve's sense of taste was altered and his appetite was so limited), the political prorams, and our favorites "Dexter" and "The Deadliest Catch."

I miss the fact that I could do something for him - and with him - that made the nightmare of renal failure more tolerable. Mostly, of course, I just miss him.

Steve's birthday comes up on August 16, just days away. Each anniversary, each special day, brings new rememberences. I'm not sure what I'll do on that day - but I'm sure I won't let it just sneak up on me and blindside me the way the Fourth of July did.

Joni Mitchell's song lamented, "Don't it always seem to go, that you don't know what you've got til it's gone?" Well, I knew what I had - then and now - a good man, a soulmate, a partner.

Take care,
Linda Gromko, MD

Fourth of July Brings Grief Advice

2011-07-05T19:22:00.000-07:00

Yesterday, I took a Maas Aero single out to Lake Union to row. It's a stable boat - perfect for the choppy water we had for such a sunny Fourth of July.

I rowed past the familiar houseboats. Lady Liberty's balloon head bobbled on top of the Gas Works Park hill. There was an enormous barge secured in the middle of the lake, preparing for the evening's fireworks event. And the American flag flew from the spire of the Space Needle, replacing the rainbow flag that honored Gay Pride only the week before. Seattle is a great place to live!

But as I rowed, I realized I had forgotten my own advice about grieving. I'd often tell patients:

"Be prepared for holidays or other special days when you are grieving. Grief can blindside you - particularly on the first of every "special day" you encounter after the death of a loved one."

And it's true. Each holiday, each birthday, each anniversary for that first year can be especially agonizing.

So there I was, rowing alone on the Fourth of July - my first Fourth of July without Steve. Only four years earlier, we had a great family photo taken of Steve, Brita, and me - on a friend's Lake Union houseboat on Independence Day. Before the fireworks began - and before Steve fell into the hell of kidney failure.

Now, "my" lake was reminding me of all those memories of an earlier, more innocent time.

Steve, Brita, and Linda on July 4, 2006

What would Steve and I have done on this glorious day, had he lived? In our lives, there would have been medications and dialysis, of course - but undoubtedly, there would have been a movie via Access Bus, a barbecue, or a party with friends.

This holiday turned out to be okay: a little lonely, but okay. I turned my attention to writing. I found the new Elliott Bay Bookstore on Capitol hill and bought "The Happiness Project."

And I waited in line to buy a single scoop of salted caramel ice cream at Molly Moon's just around the corner from the bookstore.

Our own advice is generally good - as long as we remember to take it!

Take care,
Linda Gromko, MD

"Whose Life is it Anyway?" Film Shows - How Far We've Come - in Some Ways

2011-06-28T08:27:00.000-07:00

The other day, browsing on Xfinity for something to watch in the "Free Movies" category, I came across the 1981 film, "Whose Life is it Anyway?" starring Richard Dreyfus.

The film told the story of a promising young sculptor who was severely injured in a sportscar vs. semi-truck accident. Dreyfus' character suffered a high cervical spinal cord transsetion, and was left a quadriplegic. Moreover, his internal bleeding resulted in a bilateral nephrectomy - so he had no kidney function at all and was placed on regular hemodialysis.

After the gravity of his situation sunk in, the sculptor asked to have no further treatment - and without dialysis, he would certainly die.

The request spawned an enormous debate among hospital personnel, finally resulting in a private trial - and ultimately, we assume, in the sculptor getting his wish.

It was interesting to see how our medical culture has changed. The scenes depicting doctors smoking in the lounge were obsolete, of course. Though I remember working to change the smoking policy at Swedish/Ballard in the late '80s. Until that time, smoking was common in most hospitals - among patients and personnel. Imagine!

"Whose Life is it Anyway?" was highly "sanitized." Dreyfus' character didn't look like any quadriplegic I've known: no contractures, no muscle atrophy, no visible surgical scars.

But his deep sigh when a dialysis treatment started was highly recognizable. I so remember this with Steve; he hated "being on the hose," although he clearly valued the fact that dialysis kept him alive.

I remember seeing a booklet at the Northwest Kidney Centers - entitled "When It's Time to Stop Dialysis." I never read it; we simply weren't "there."

But, how wonderful it is that a patient wouldn't have to put up a fight to end treatment - at least not with the court. We now see withdrawal of treatment as a patient's right.

Steve and I had spoken many times about "not letting him suffer." When it's time to die, I believe a person knows this at a very deep level. I suspect that's what Steve was conveying when he said, "Wasn't I supposed to die yesterday?" - the day before he actually died.

End of life issues will always be charged, tough issues - for patients, for families, for society in general. I'm personally glad we've made some progress in this area since the Dreyfus film. It's interesting to watch; you might put it on your list.

Take care,
Linda Gromko, MD

The Feminist Widow in Car World - and The Susan B. Komen 5K Walk

2011-06-06T08:26:00.000-07:00

Well, I'm not sure what this post has to do with dialysis, but I'm very sure what it has to do with widowhood. Even in an egalitarian relationship like Steve and I had, there were certain things he just did better than I did - and therefore, fell to him. Like car buying/leasing.

Steve loved cars. Cars with every new doo-dad, every new technology. I had never known that cars could even come with heated seats until I met Steve with his grey VW Toureg. He had the heated seats, the leather interior, the teak trim, and all the rest. It was nice, but it was, well - a car.

For me, a car has to be dependable - and handle reasonably well in the snow. A CD player would be great. But that's about it.

Steve chose my last car, a Suburu Forrester - sort of a small SUV that gave me the illusion of being able to venture into mountains and take a kayak somewhere. Maybe that was his illusion. In truth, I basically went to Costco and that was about it.

Another truth about widowhood is that I need to take a careful look at finances, cutting expenses where I can. A lower lease payment seemed reasonable to me.

Looking at several cars, I could "feel" Steve saying "don't even think about that little toy car, Linda Jo," and I passed up a compact sedan in a tomato bisque color. That would have completely offended Steve's design sensibilities!

But settling into a VW Jetta with a lower payment and enough bells and whistles for anyone's purposes, I felt at peace. At peace, mind you!

Feminist Dr. Linda still seeking Steve's approval about a car purchase? Well, yeah.

But I hear this from other widows, too. Wanting to ask him something; wanting to tell him something. Wanting to poke him in the arm for not being there when I had a car question.

Widowhood? Not my favorite chapter.

But then, there was the earlier part of my day. Yesterday morning, I joined a few thousand others in the Susan B. Komen 5K Walk (or "Walk-not-Run-for-the-love-of-God!") For the Cure.

That's a reality check for you. Our group of sixteen included daughter Brita and her pal Carla. We were walking in support of one of my officemates, Margaret Provenzano, diagnosed with breast cancer a year ago - and doing beautifully. Her pink "surviver shirt" spoke volumes.

Margaret and a group of fans ("Team Provenzano") pose after the Susan B. Komen event on June 5, 2011.

We spotted a man carrying his pre-schooler on his shoulders. His T-shirt read "In memory of my mother; in memory of my wife; with hope for my daughter."

For all the free bagels and pink flipflops, this is serious stuff.

Yet, I remember when I started my practice some twenty-plus years ago, breast cancer was practically a death sentence. Period. Not anymore, though.

I hope the future of kidney disease gets brighter. For now, prevention is the only real answer. As Steve would say, "By the time you're on dialysis, that ship has sailed."

But that's not completely true, either. There's transplant. There's better dialysis. There's home dialysis in its various forms.

Yesterday was a good reminder of the various burdens we bear: widowhood, breast cancer, kidney failure - and the very real hope that's tangled up in all of them.

Take care,
Linda Gromko, MD

Steve's "Medical Eulogy" for Memorial Day

2011-05-27T23:25:00.000-07:00

Because it's Memorial Day weekend, I've decided to reproduce the eulogy I shared for Steve's Memorial Party on May 15, 2011.

* * * *

"My mother and father had a wonderful marriage for fifty years. When my father died, my mother said, 'I just thought we'd have more time."

Steve and I were together for a little over six years. But by any standard, it was a rich and intense time. I'd venture that we had in six years what many couples never achieve in decades. We tackled dragons together. And we both knew that we were fully loved by the other.

We gave each other amazing gifts.

From Steve:

I received an appreciation of my own competence as a physician. I used to joke with other doctors that just living with Steve should earn me Continuing Medical Education Credits!)
And I learned that I am a writer. (Steve used to beg me to ready my chapters to him. Of course, they were all about him. He used to use that narcissistic line, "Enough about me; tell me how YOU feel about me...")

And as for my gifts to Steve:

It's true I saved his bacon a time or two on the medical front.
I calmed him with hypnotherapy - it was the only thing that helped him sleep.
I had fun with him.
But most importantly, I loved him deeply.

* * * *

Although this used to embarrass Steve enormously, we met on Match.com. I had put in an ad stating, "I'd like to meet a nice Democrat."

And Steve responded, "Kerry delegate here."

We were a great match: similar politics, irreverent humor, a love of movies and food, a shared commitment to fitness. We both believed in "doing the right thing," and we tried to live it.

When I met Steve, he and Brita were living on Bainbridge Island - "just a 30 minute ferry ride to the city." We had some initial challenges with my arrival in their lives.

But the real challenges we faced involved Steve's failing health.

Having had high blood pressure and diabetes for many years - and a lifestyle devoted to culinary pleasure, Steve's health crashed in September of 2007 when he fell into Acute Renal Failure. He had to go on dialysis - the kidney machine - immediately. I am convinced that renal failure is one of the worst health conditions a person can experience.

The Northwest Kidney Centers offer the "Choices Class" for new kidney patients. In truth, it should be called the "No Good Choices Class." The options are: dialysis, kidney transplant, or - what Steve and I called "Door Number Three" - death within two weeks with no treatment.

We set out to learn how to do Home Dialysis, and we did it for over three years. Steve and I became serious advocates for Home Dialysis. I write a kidney blog, and with my friend Jane McClure, wrote "Arranging Your Life When Dialysis Comes Home" - which is the only resource of its kind.

I also wrote a very personal book, "Complications: A Doctor's Love Story. (Steve lobbied hard for the title "Steve Williams is Sexually Gifted.")

In February 2009, Steve received a living donor kidney transplant - the donor being his wonderful niece Teresa. And it was during this time that our friend Bob Bost wrote the song "Fight the Good Fight," CDs of which are here for you to take home today as you remember Steve.

The transplant didn't work due to a variety of medical calamities. The night that Teresa's kidney was removed from Steve was one of the saddest of our lives. Steve spent the next year healing and dialyzing. But in the fall of 2009, he began having problems with his heart; he'd already had a bypass when he was fifty. On Thanksgiving night, Steve had a heart attack during dialysis - on Bainbridge Island. I earned my stripes and a few grey hairs that night as we got through it, and took the 4:40 a.m. ferry into town for a brand new coronary artery stent.

What we were to learn in March of 2010 was sobering: Steve's aortic valve - the valve that connects the large left ventricle to the aorta (our biggest artery) had narrowed from the normal size of about a quarter - to the diameter of a #2 pencil eraser.

When he got to surgery, Steve's cardiac ejection fraction was only fifteen percent; normal is four times that. Dr. Joseph Teply - the most courageous surgeon I know - plucked Steve from nearly certain death during that thirteen hour surgery.

It was a feat of medical magnificance! Yet when Steve and Dr. Teply would see each other later, they'd talk about fishing - they were just two guys talkin' about fishing!

Steve's recovery was complicated by a little understood condition known as "Critical Illness Myopathy/Polyneuropathy. Because of this, Steve never walked again. He required twenty-four-hour-a-day care, and, of course, continued dialysis.

But Steve and I made lemonade out of our buckets of lemons. We dated - via Access Bus - the little Metro buses that carry the physically disabled. Access Buses are a mixed bag - never ego enhancing! But they were our ticket out!

Steve and Linda set out for a date in November 2010. Looking scruffy and always
irreverent, Steve would say, "Let's go sell some pencils!"

On one of our last dates, Steve had an elevator door close on his foot, and that night, I noticed a large blood blister on his big toe. He had gangrene of the forefoot within three weeks, and a below-the-knee amputation the following week.

Because he had survived everything else, it really hadn't occurred to us that Steve wouldn't get through this. We even announced to our friends after the surgery, "Steve Williams lands on his foot!"

We were able to get him home Monday, April 11 - challenged by providing adequate nutrition and pain control. We honestly thought we could do better at home than in the hospital. And he was so glad to be home.

On that Tuesday, the evening before he died, Steve asked Tim and me, "Wasn't I supposed to die yesterday?"

Offering to take him back to the hospital, Steve's eyes opened wide - "No, I can't go back to the hospital; they don't let you die in the hospital."

I thought it was the narcotics talking. I fed Steve chicken broth, dialyzed him, and tucked him in for the night.

But the next morning, Steve was unresponsive - eyes open, a strong pulse, but unresponsive. His heart arrested in the Medic One van on the way to Swedish Medical Center.

On my call, Steve had appropriately gone from a "full code" to "no intervention" in the blink of an eye. Dr. Smiley Thakur, our heroic nephrologist, had shared, "When you are doing something TO someone rather than FOR someone, it's time to make that call."

Steve had always told me that he wanted to die, "when the banter stopped."

And it was time.

Take care,
Linda Gromko, MD

Steve's Friends and Family Celebrate His Life at Lake Washington Rowing Club

2011-05-18T22:44:00.000-07:00

Steve and Linda

On Sunday May 15, Steve's friends and family celebrated his wonderful life with a party at Seattle's Lake Washington Rowing Club.

The venue had been selected for two reasons: 1) I'm a rower and member of the club, and 2) the club is located approximately where Speakerlab used to be.

We had easily 130-150 people in attendance, with live music provided by Bob Bost, Alecia Healey, and Larry Murante. Everyone brought food, and we gave out picture cards of Steve, and CDs of Bob Bost's song "Fight the Good Fight" - a song Bob dedicated to Steve before his kidney transplant. Many people spoke - most special, of course, was daughter Brita. The energy was amazing: Steve's impact had been so broad in scope! All the lives he had influenced, the careers he'd shaped!

The event brought out a few old photos. Here are some favorites:

Steve and Brita pose for a Seattle Times feature about the Bainbridge Island home Steve helped design. Brita was 7 at the time; She'll be 16 in June.

Steve at a baby shower for niece Michelle, just prior to his kidney transplant in 2/09.

Steve at our wedding in 1/08

There's no way to convey the loss we feel, but it's enormous. The cost of Steve living the way he was - with significant suffering - was far too high. As much as I loved Steve with all my heart and soul, I couldn't bear to think he was living for me in such agony.

At the party, I realized that I was one of the new kids on Steve's block. Many of his friends had known him for 40-50 years. I had known him for only six. But we had in six years what many couples don't achieve in decades. We were each loved...truly loved...by the other.

I wish to convey my deep appreciation to Michael and Andrea Ramage for hosting this event, and to the many others who contributed as well.

Take care,
Linda Gromko, MD

Thanks to our Firefighters and Paramedics

2011-04-28T23:23:00.000-07:00

Brita and I paid a visit this evening to the Lake Forest Park Fire Department. These are the folks who came to assist Steve on a number of occasions - I think at least four times over a period of nine months.

We made up a gift basket of nuts, trail mix, and candy from Costco. Not from the recommended diabetic-renal diet, to be sure, but treats that might help our helpers get through a night.

I remember one evening when Steve was having severe left arm pain during a Home Dialysis run. I called 911 because I was worried that Steve's pain might be cardiac in origin. Hemodialysis can look daunting: blood running through large-bore tubing, alarms sounding. It wasn't the dialysis I was concerned about; that was handled! I finished getting Steve unhooked from the machine and the medics took over.

Another night, the firefighters helped us get Steve up our steep driveway in his wheelchair - in the snow!

And, of course, there was the unimaginable morning of April 13 - when the medics transported my unresponsive Steve to the hospital, with Steve descending into cardiac arrest on the way. I was so grateful that the medic phoned me (in my car following behind) - verifying that I wanted no further intervention. I think years ago, full intervention would have occurred without question.

We are grateful for these well-trained, good natured firefighters and paramedics who have helped our family on numerous occasions. Thank you for making such troubling situations more tolerable.

Take care.
Linda Gromko, MD

Steve's Story

2011-04-23T08:59:00.000-07:00

Since Steve died, I've had requests on how to get ahold of the book I wrote.

Order "Complications: A Doctor's Love Story," through www.LindaGromkoMD.com. A Kindle version is also available on Amazon.com.

"Complications" covers Steve's first year of renal failure - there's a lot of medical content, but I wrote it to be understandable for those who don't speak "medicine." It also covers our first meeting, our love story, our creation of a new family in midlife. The chapter on Brita is my personal favorite!

"Arranging Your Life When Dialysis Comes Home: 'The Underwear Factor'" is clearly written for a niche of folks who urgently need a practical step-by-step guide. Co-authored by Interior Designer Jane McClure, this book helps people maintain their homes and lives - performing critical medical treatments at home while not feeling like you live in an ICU! It can also be ordered through http://www.lindagromkomd.com/, with a Kindle version available on Amazon.

Thank you for your interest.

Take care.
Linda Gromko, MD

Heroic Measures

2011-04-17T06:59:00.000-07:00

Steve's nephrologist, Dr. Smiley Thakur, called after Steve died. We talked about Steve's final days, and the many difficulties Steve had endured over the past three years.

On the morning Steve actually died, I had called Medic One. Steve was essentially unresponsive. The paramedics asked if I wanted him intubated (i.e. on a ventilator) if his condition deteriated on the way to the hospital. I declined intubation - should that be considered. En route to the hospital, the lead paramedic called me to clarify that I wanted no further intervention, as Steve had just gone into cardiac arrest.

While Steve had always been a "full code," i.e. full emergency intervention, his situation had clearly changed. As his Durable Power of Attorney for Health Care, I knew that Steve didn't want to go on if his quality of life were even more severely limited.

He wanted to go "when the banter stopped."

Steve had every conceivable intervention possible over the past three years: a kidney transplant which failed - leaving him with a wound that could have admitted a housecat into its depth, a major open heart surgery, sepsis, critical illness myopathy, gangrenous toes, a leg amputation.

Dr. Thakur commented, "You know the difference: when you're doing things to him, rather than for him. You saw that, and made the right call."

Steve's home care was complicated. His blood sugars could vary from 30 to 300 in the span of a day.

And, of course, we did Home Dialysis - both hemo AND peritoneal dialysis. Because of Steve's impaired blood circulation, blood pressures were unreliable. And weights couldn't be obtained because of his mobility problems. So, we'd make an assessment of his volume status by using the cues we had: his appearance, his edema, thirst, how he felt. I could estimate his fluid status by checking the places in his body where fluid gathered. I so remember how the hospital residents would check his legs for this - but the fluid wouldn't be there. When he was fluid overloaded, he'd collect edema in his neck, his arms, his back.

With none of the conventional means to evaluate Steve's volume status, we were left to the most basic tools: good clinical observations.

In my opinion, these were the "heroic measures."

Steve's medical condition was far too complex to be "typical" of a home dialysis patient. Yet, dialyzing Steve at home meant far more normalcy in his life. I will never regret the decision we made to pursue this; it gave his final years far more dignity - and far greater contact with his family and friends.

I am also immensely grateful to Dr. Thakur for supporting our home dialysis care. It took courage on Smiley's part, too.

Steve's obituary is posted on http://www.legacy.com/.

Take care,
Linda Gromko, MD

Stephen M. Williams (8/16/49-4/13/2011)

2011-04-14T12:20:00.000-07:00

There's a vacant spot in my heart today as I announce Steve's death. He fought so hard against every health calamity, we always expected he'd land on his feet once again - or foot, as it happened after his recent amputation.

We brought him home from the hospital on Monday, April 11. He slept comfortably through the night, happy to be home. Tuesday was a rough day with a great deal of pain. After we finally got his medications squared away, he said to my son Tim and me,

"I thought I was supposed to die yesterday."

I asked him what he meant, to which he just shook his head. Then I asked him if he needed to go back to the hospital. Steve's eyes got wide.

"No, they won't let you die in the hospital."

The next morning, Steve was markedly less responsive. On the Medic One ride to the hospital, Steve went into ventricular fibrillation. He died on the way; no more measures were needed. Steve had had enough. I suspect he'd had a stroke in the night, or maybe a heart attack. I don't even really know, and it doesn't even really matter, I suppose.

For anyone who might question, Steve gave out. He never gave up.

So now, we plod along, going through the process of grieving and adjusting. For me, the problem is that every molecule, song, word or purpose is connected to Steve.

I never loved anyone the way I loved Steve. And there is no doubt in my heart that he loved me deeply.

We will have a party sometime; he wasn't a funeral kind of guy. We'll place an obituary in the paper. For anyone so inclined, rememberences may be directed to the Ingersoll Gender Center, Planned Parenthood of Seattle-King County, or charity of choice.

Take care.
Linda Gromko, MD

Amputation Puns and Drug Delirium

2011-04-10T11:42:00.000-07:00

When Steve got back to his hospital room after his Below-the-Knee Amputation on Thursday, he looked, well - "perky." He was relieved, lucid; he greeted friends with ease. When our kids, Brita and Tim, delivered an oversized pink "contented cow" balloon, he was cordial and "appropriate" - if such a thing exists for a man who has just lost a leg.

He had had a spinal anesthesia, and wasn't keen on the experience of hearing the reciprocating saw and smelling the aroma of full-on cautery. But he was mentally "there."

The next day brought plenty of narcotics - necessary, of course, to dull the intensity of bone pain. But we have all learned that Steve doesn't do well - mentally - with narcotics. He gets delirious. Fortunately, it's an entertaining delirium; he's never mean or cantankerous. And it's temporary.

In the early hours of Saturday, Steve was not only delirious - his temperature was climbing. He has demonstrated florid mental status changes in the past with sepsis (infection in the bloodstream), so this was clearly a concern.

Therefore, I understand why the doctor-on-call ordered Narcan - the medication which reverses the effect of the narcotics. It was important to know if Steve was loopy because he was drugged or because he was getting really sick with an infection.

The Narcan popped the fluffy cloud of relief on which Steve had been floating, and slammed him into a wall of screaming pain. It was awful.

Furthermore, Dr. "Narcan" had then ordered Dilaudid - a drug on which Steve has had notoriously bizarre behavior. I asked to have the order changed to morphine, but the doctor couldn't be reached. After an hour, I couldn't take it anymore. I said, "Give him the Dilaudid."

Two years ago, after Steve's failed kidney transplant, Steve got Dilaudid.

"Are there salmon swimming up my back?" I remember him saying. Later, his friend George's head was completely replaced by the head of George's cocker spanial, Lady.

Like I said, they were entertaining little hallucinations, but bothersome nonetheless.

As soon as the Dilaudid was injected this time, Steve grinned instantly.

"Is that a salmon?" he asked.

The rest of the day and night was spent in various degrees of awareness, as Steve's drugs were manipulated.

His response to it all? "I'm on a wild goose trail. I'm taking a monkey out of a can."

Steve, my brilliant raison d'etre, is clearly at his best with a mind. I'm waiting for it to come back.

We'd already started on the bittersweet amputation puns. "Steve's landed on his foot once again!"

And, after all, I'm still in love with this man - head over heel.

Take care.
Linda Gromko, MD
see also http://www.rowingthroughthewinter.blogspot.com/

Waiting for Steve's Amputation

2011-04-07T11:58:00.000-07:00

"All things considered," as Steve often says, we've been doing reasonably well. He was admitted to the hospital briefly in March for the family respiratory infection: probably a viral pneumonitis. While it hung on for a while, Steve has made excellent progress.

We'd been back to our weekly dates of dinner and a movie via Access bus. On one such trip - March 13 to be exact - Steve had an elevator door close on his left foot. That night, I discovered a quarter-sized blood blister on his left big toe. Since I dress him, I know it hadn't been there before; it was an elevator bite!

Steve had a routine podiatry appointment scheduled for the next day; he has had a tiny stasis ulcer on his left middle toe for many months. The podiatrist looked at Steve's feet and referred him to the wound care center. A vascular mapping ultrasound had already been scheduled, ironically, before the elevator incident.

In the two to three days before the mapping exam, Steve's left foot worsened considerably. The big toe and the two adjacent toes were rapidly turning black.

When Dr. Watson, Steve's vascular surgeon evaluated him on March 30, he said, "The leg will have to go."

An amputation! We've always known that a stubbed toe in a diabetic could lead to an amputation. But here we were - discussing Steve's amputation! A below-the-knee amputation would afford a greater possibility of walking sometime in the future.

And walking allows for the possibility of another kidney transplant even further down the road. Steve is simply not ready to let that opportunity go - at least not now.

So Steve is in the Operating Room, and I'm writing. Support from friends has flowed in; so have all the intentional and unintentional amputation puns.

I believe he will get through this surgery fine. An hour-and-a-half case! Barely time for a cut, color and perm!

But the implications are weighty. Mortality figures for renal failure patients with amputations run over 50% during the year of amputation. Of course, most of that mortality is attributable to cardiovascular causes. Steve's heart has been practically rebuilt, and he's had no new symptoms of worry.

But we do worry, of course. Steve and I have framed this new development as the beginning of a new chapter. Steve's Rehab specialist, Dr. Tempest, underscored only yesterday the vast improvements he's made since his visit in October.

We're in there. And if there's one thing that has proved itself again and again, it's been the strength and resilience of Steve Williams.

Take care,
Linda Gromko, MD

Hypnotherapy Calms Steve's Breathing and Brings Better Sleep

2011-03-24T11:14:00.000-07:00

As a resident physician at the University of Washington, I received basic training in the techniques of hypnotherapy. I went on for more training in this area, and have practiced it intermittently with my patients - as an adjunct to smoking cessation, weight loss, and other significant challenges.

Steve has struggled with poor sleep for years, and medications to help have been met with variable results. Medications which leave him "drugged" or "groggy" don't seem to do him any favors - and we are mindful of adding anything to his already full pharmaceutical menu.

With the recent respiratory infection Steve encountered, he experienced full-blown wheezing. Even after his hospitalization - and the pulmonary treatments - and the steroids - and the antbiotics, his breathing sounded like a creaky, poorly-oiled machine. As an asthmatic, I understand intimately the discomfort of constricted breathing. It takes so much effort to pull in and force out each wheezy breath.

So, I tried a hypotherapy technique to get Steve to sleep and ease his breathing. It went something like this:

"Steve, as I count down from 5 to 1, you will experience a deepening of relaxation. As you envision a place in the world that is particularly restful to you, I invite you to focus further on your breathing.

Notice that it is becoming more easy - almost effortless - as cool, clear air moves easily in and out. Your breathing slows as you realize that your breathing tubes are opening ever-so-gently to allow for easier entry of life-giving oxygen. Your body deepens further into relaxation.

Take a moment to receive any message, to take care of any matter you need to before you drift easily into sleep"

---------"I love you, Linda Jo," Steve whispered.

"Excellent. Now slowly, gently drift to sleep through the night without waking. Wake in the morning, relaxed, refreshed, and restored."

Steve drifted off and slept soundly through the night: no coughing, no request to be turned. It was a quiet night in spite of its uncomfortable beginning.

Take care,
Linda Gromko, MD

Steve Gets a Hospital Tune-up

2011-03-22T22:44:00.000-07:00

While Steve's respiratory symptoms quieted after the removal of some extra fluid via Peritoneal Dialysis, his wheezing and cough came back in earnest on Sunday. He was tiring out - and getting a little worried about something more serious like pneumonia.

So, rather than our Sunday date, we took a cabulance to Swedish Hospital.

Our whole family had had respiratory viral infections. But with Critical Illness Myopathy/Polyneuropathy, Steve may have more difficulty clearing out secretions. He did have a flu shot earlier in the year.

Steve spent a couple of nights in the hospital, getting antibiotics, bronchodilators, and a blast of anti-inflammatory steroids.

So whether it was an atypical pneumonia or a viral bronchitis, Steve did need treatment, and he felt better after the tune-up.

Breathing is, after all, non-negotiable.

Now that Steve has been in the hospital many times, he recognizes some of the nursing staff as friends.

A'dree-Rose Hollinger, RN - a Dialysis Nurse who has cared for Steve many times, stopped by to say hello. Steve loved her visit. We have a special place in our hearts for A'dree-Rose. She is one of the few nurses we've come across who knows intimately the process of Home Hemodialysis and Home Peritoneal Dialysis. She knows because she was her Grandfather's Home Dialysis helper while she was a student! We have been frequently surprised at how few health care professionals know that dialysis can be done at home - and with some significant advantages.

Tonight, it's nice to have Steve home again. I don't think he's out of the woods with respect to the respiratory symptoms. But we'll keep a close eye on him.

Take care,
Linda Gromko, MD

Returning Home to Find Steve Sick Again

2011-03-19T17:08:00.000-07:00

I spent one night in San Francisco - one night for a two-day training event. My son Tim was able to spell me for two of Steve's Peritoneal Dialysis treatments. And with a little coaching over the phone, Tim did great.

But when I walked in the door last night, Steve was audibly wheezing!

Our whole family has had colds. But Steve wasn't clearing his secretions well; I could hear him wheezing across the room.

I gave Steve Combivent treatments and started him working on the Incentive Spirometer - trying to encourage deeper breathing and better "pulmonary toilet."

It's hard to read Steve in the best of circumstances. We cannot get proper blood pressures on him in any consistent manner because of his bilateral arm fistulas and his poor lower extremity circulation. We cannot weigh him at home because of the logistics involved in moving him. Of course, Medicare doesn't cover a bed scale. Critical Illness Myopathy/Polyneuropathy hangs on as a formidable foe.

So we're left to assess volume by his subjective symptoms (e.g. degree of thirst, difficulty breathing) and objective observations of Steve's edema. He rarely gets swelling in his feet, of course; he doesn't walk and he spends most of a day reclining or in bed.

When he is truly volume overloaded, we see extra fluid around the neck area, the backs of his arms. It's tricky, especially without comparative weights and blood pressures. But we've managed reasonably well thus far. It is - by no means - the usual standard for home dialysis. But Steve's circumstances are unusual.

So I asked Steve's nephrologist about taking him in to the ER to be evaluated. After all, I have no idea about his oxygen level or what a chest x-ray might show.

Dr. Thakur suggested a trial of a Peritoneal Dialysis run using a more concentrated dialysate. If Steve is really volume overloaded, the removal of a net 2 liters or so would be helpful in relieving symptoms. It it didn't, the ER would still be there.

And since Steve didn't look like Medic One material to me, it seemed like a reasonable idea.

Now, as I type, Steve is snoozing soundly - breathing much more comfortably after we tried Dr. Thakur's suggestion.

So far, so good. If this continues, we'll have avoided a costly, difficult afternoon for Steve. And, of course, if things change, we'll make a new plan. But for now, it's a great relief.

Take care,
Linda Gromko, MD

Going Out of Town Brings New Worries

2011-03-15T22:58:00.000-07:00

Most of my professional training requirements can be met in Seattle, I do go out of town once in a while. Thursday and Friday of this week, I make a short trip to San Francisco for a training event related to the Weight Loss portion of my medical practice.

I am Steve's primary caregiver. As I write this, he's snoozing through his Peritoneal Dialysis run. But this evening, he's also been given medications; blood sugar has been checked and insulin's been given. I've turned him in bed, cleaned him, and tended to his skin care.

I realize that San Francisco is two hours away, and I leave Steve in many hands. There's my son Tim, who cares for Steve every weekday and coordinates all of his PT/OT and MD appointments. Tim has also been trained in Peritoneal Dialysis. And, of course, he's got the back-up of the Kidney Center nurses. Then, we'll have several hours of other caregivers' time each day for the more personal care.

Well orchestrated, the trip should come off without a hitch.

But here IS the hitch: the last time I left town for two days, Steve was still in the hospital. I came back to Seattle to find Steve delirious with a temp of 101, right upper quadrant tenderness - acute cholecystitis! Back to the ICU - once again.

I appreciate that Steve's health is tenuous enough that anything could tip his delicate balance at any time. So leaving town is nerve-jangling for me.

But, as before, I'm not in control here! I can orchestrate the things I can, and the rest will have to follow.

Take care,
Linda Gromko, MD

Physical Therapy is Teaching Steve "Bed Skills"

2011-02-26T14:54:00.000-08:00

OMG - What should we think about this? This is our Medicare dollar at work!

Well, I'm delighted that Steve is working on his "Bed Skills!" He's making progress!

Here's the story: when Steve came home from the hospital in 7/2010, he had to be moved from bed to wheelchair via Hoyer lift. He couldn't transfer himself in any way. He really couldn't sit up by himself. He couldn't turn over, or scoot up in bed. He was fully disabled with "Critical Illness Myopathy," - a little known and less understood phenomenon which impacts people after severe illnesses. It hits people who've been on a ventilator for a while, those who've had a major surgery, those with sepsis, those with serious cardiac or renal disease. Check all of the above.

Steve wasn't paralyzed; just exceedingly week. And it wasn't a matter of volition; his body just couldn't do the things he asked.

Steve was further impacted by a fistula surgery which compromised the blood flow to his hand and resulted in a median nerve injury. His left hand became practically useless.

Our bedroom is functional - but it is really more like a dorm room. Steve's in a hospital bed, and I'm in a daybed. This is very useful for the nursing tasks we must perform many times a day.

While I know this sounds like an utter luxury given the overall scope of troubles in the world, I'd really like to sleep with my husband. And two big people in a single hospital bed isn't very comfortable.

When Steve acquires "bed skills," i.e. scooting, rolling over (like a four-month-old does), we can bring in the big bed from the garage and sleep like a couple.

We haven't done this since Steve went into the hospital on March 2 - just about a year ago. A year ago, when all of our lives sommersaulted into such chaos and uncertainty. When Steve's dying would have been the assumed and logical outcome of his continuing series of nightmares.

But Steve didn't die. He's coming along, little by little. And while I've been told that "you get what you're going to get back after a year of Critical Illness Myopathy," I've got my money on him yet.

In spite of everything, Steve's mind is still exceptionally sharp - probably a mixed blessing. My son Tim - who serves as one of Steve's caregivers - bought a new Trivial Pursuit game. And Steve can beat us all!

But then, Steve could have lost a few hundred thousand neurons in all his events and still have plenty to spare! Amazing.

Take care,
Linda Gromko, MD

Peritoneal Dialysis Brings Steve Some Benefits; Will They Last?

2011-02-10T20:53:00.000-08:00

Steve had a rocky start with Peritoneal Dialysis - with worrisome volume overload and wide blood sugar swings.

But now that we've settled into it a bit and ironed out a few math problems, PD looks very encouraging.

Here's what we're noticing:

1. It's so easy, compared to Home Hemodialysis. Particularly compared to Home Hemodialysis with chronically challenging fistula access! (All those stenoses requiring periodic angioplasties!)

2. It's done daily, which has to mimic actual kidney function more closely.

3. Steve feels better! This week, he started Outpatient PT and OT, so this new energy level will be much-needed.

4. Steve's appetite has returned, and interestingly enough, food has begun to taste better. On hemodialysis, Steve said that chicken tasted like cardboard. He'd say he'd eat "from memory." Now, he says that food tastes the way it's supposed to taste.

It may be premature, but we are very hopeful that Peritoneal Dialysis will continue to encourage. We are glad to have moved from Hemodialysis to PD - and not the reverse! This technology is much more user-friendly, and conducive to CarePartner sleep!

Since our "filter" is now a living membrane, i.e. Steve's peritoneum, it's not as reliable as a manufactured dialysis filter. Will dialysis via PD provide adequate dialysis?

Will he run into later complications or peritonitis?

Most critically, will PD buy us enough time to potentially gain Steve enough rehab - and give him enough mobility to become a kidney transplant candidate once again?

Take care,
Linda Gromko, MD

The Kidney Community Celebrates the Life of Ted Lomax

2011-02-05T19:14:00.000-08:00

This week I received an email from Gloria Lomax. Her beloved husband of nearly 58 years had "come home to go HOME." With family surrounding him, Ted Lomax passed away at the family home on February 2, 2011.

I knew Ted only vicariously, through my dear "penpal," Gloria. Through his obituary, I learned that Ted had helped raise his three siblings after his father's death when Ted was only nine. He worked for seven summers at Mount Rainier National Park during high school and college, and served in the US Army Air Corp. He was trained as an aeronautical engineer, earning UW bachelors and masters degrees. He was to meet his future wife Gloria at the UW, where Gloria majored in home economics. Ted Lomax worked at the Boeing Company as a structural loads engineer for 40 years. He authored a textbook "to bridge the gap beween historical structural loads applications and modern design." After retirement, he worked as a consultant for Aviation Partners until April 2010. Deeply committed to his faith, Ted was a leader in his church community as well.

What the obituary didn't mention was that Ted's very full life had been complicated by kidney failure and the need for kidney dialysis, beginning in October 2000. The couple trained in Home Dialysis in July 2002, and did home treatments until Ted's recent hip fracture prompted his move to a Skilled Nursing Facility.

Steve and I had the honor of meeting Gloria Lomax at the Northwest Kidney Centers' Breakfast of Hope in May 2009. Steve was sporting a "wound vac," an odd little device that helped him heal an enormous wound left by a failed kidney transplant three months before. We were back on Home Dialysis once again, and desperate for any encouragement the Breakfast of Hope might provide.

So we met this elegant, graceful woman in her late seventies who had commandeered Home Dialysis for years - getting only a little assistance from a granddaughter who'd stop by to hang the dialysate bags each day.

I was so inspired by this woman who took the challenges of Home Dialysis in stride - calmly doing it because she could, and because it was the best thing for Ted.

I especially appreciated Gloria's descriptions of times when Medic One had to be called. (It's a singular moment for all parties when the medics come. For all their skill and expertise, Home Dialysis can make even the most seasoned firefighter stop in his/her tracks!) I can just see Gloria on the phone with the Northwest Kidney Centers RN, delivering Ted's blood back to him while the Medic One crew administered oxygen. What courage Gloria had through all of this!

Since meeting Gloria at the Breakfast of Hope in 2009, Steve has been on his own medical rollercoaster, with multiple surgeries and multiple complications. I updated friends on Steve's condition through this blog as well as more personal emails to his more intimate circle of pals.

Gloria was on our email list as Steve's medical updates were disseminated. And it was Gloria who consistently spoke to me in the compassionate language of one who truly, truly understands.

She appreciated - as I did - "the comfortable time in between crises." Who else could know this so personally?

In our continuing correspondence, Gloria shared with me that Ted was declining. And when she wrote that he had passed, she expressed her relief that her beloved no longer suffers. Her faith is strong; the support of friends and family is sturdy.

But I ache at her loss as deeply as I respect her strength and wisdom.

The Memorial Service for Ted Lomax will be held Sunday, February 6 at 3:00 pm at John Knox Presbyterian Church in Normandy Park. In lieu of flowers, memorial gifts may be designated to John Knox Presbyterian Church (109 SW Normandy Road; Seattle, WA 98166) or to The Northwest Kidney Centers (PO Box 3035; Seattle, WA 98114).

Take care,
Linda Gromko, MD
Addendum: Read "Caregiver Profile: Mrs. Gloria Lomax" on this blog, November 17, 2009.

What a Difference Quality Care Makes!

2011-01-30T23:07:00.000-08:00

For anyone who has relied on hired staff to provide care for a loved one, you've probably heard that "it's a crap shoot!"

When Steve came home from the hospital in July, he required 24-hour-a-day care. (He still does.) We called an agency that could provide Certified Nurse's Assistants. The agency sent two highly qualified young men, both wholly committed to their work, kind to Steve, and respectful.

The cost, however, was prohibitive. We were exhausting our savings, and nibbling at retirement accounts.

We hired another agency - at a lesser cost. One of the women the new agency sent was personable and patient with Steve. She insisted on his getting enough watermelon to keep his digestive system working smoothly. She had a sweet disposition, and we all felt safe.

The other woman, however, was - frankly - frightening. Her judgement was curious, her decisions inconsistent. She would do tasks that were not requested - like cleaning our stovetop, and omit the required duties - like oral care and giving Steve medications from his Mediset. Worse, when called on anything, she became defensive. There was always a reason for her omissions - but they weren't her fault!

The day this odd little woman arrived on a non-scheduled day and locked her keys in her car, I had it. It was time for a change. This woman was simply takng too much work!

Now, we've heard of the nightmare situations where caregivers steal, or treat patients in an abusive manner. Thankfully, we've had none of these horrors.

I went back to the first agency, and begged. Working with fewer hours, we could shave the cost a bit - plus we could rely more heavily on family members.

Meeting the two new caregivers was like a breath of fresh air - accompanied by a sense of deep relief!

So, in this chapter, we learned that:

You get what you pay for.
Asking a total stranger into your home is a terriby vulnerable position - particularly when your loved one is so medically tenuous.
English skills are critical. Most of the caregivers we have met have learned English as a second language. Their ability to speak English is a tribute to their intelligence. But, when a patient is very ill, or doesn't hear well, I wonder what gets lost in the shuffle.
It pays to be creative, and keep looking til you find a good match.

Take care.
Linda Gromko, MD

A Hospital "Holiday"

2011-01-25T00:05:00.000-08:00

When Steve and I went to sleep on Sunday night, we thought the rugged weekend was behind us. Not so fast!

Steve awoke, stating, "I'm sweating; check my blood sugar!"

His suspicions were correct; his blood sugar was only 31! His body was profoundly diaphoretic. I've seen Steve's glucose dip as low as 30. And I had one patient in the E.R. who had a blood sugar of only 8! That patient was unconscious. I didn't want to find out how low Steve's blood sugar could drop.

It wasn't clear to me exactly what was happening. We knew we were using high amounts of sugar in Steve's dialysate solution - so that could have accounted for high sugars he had off and on through the weekend. And that, of course prompted our use of more insulin. Had we overshot, giving him more insulin than necessary? Possibly so, though the pattern was inconsistent.

Arriving in the E.R., Steve looked sick. His responsiveness waxed and waned. At one point, he simply didn't answer our questions. A couple of slugs of IV Dextrose solved that immediately, with Steve returning to lucidity.

While Steve's medical fragility was clear, his capacity for resilience was also demonstrated once again.

And, once again, I felt immensely relieved to hand Steve off to someone else to be responsible! I remember feeling that way three years ago in the same Emergency Room. Steve had just been diagnosed with Acute-on-Chronic Renal Failure. His creatinine rocketed up from his abnormal 4 to a startling 10 in only two weeks. He looked pale, twitchy, and mentally loopy.

I was so relieved to have someone else take the responsibility then, as I was at 3 a.m. Monday morning.

Over the day, Steve looked better. Our mysteries were not all solved; many of my questions remained unanswered. But that sick-in-the-pit-of-the-stomach sense of maybe losing him passed once again. Will it return? Of course. I'm optimistic, but not naive. This is not a pleasure trip. This is real life, and real love.

By the way, Steve and I just celebrated our third wedding anniversary. We recognize the significance of this milestone, and, yes, it seems like we've been partners for many more years than seven!

Happy Anniversary, Stephen...my "raisin" (as in "raison d'etre")! I love you with all my heart.

Take care,
Linda Gromko, MD

Fluid Overload Scraps our Date and Brings Back Temporary Hemodialysis

2011-01-23T22:01:00.000-08:00

If there's anything that Steve and I look forward to, it's our Sunday outing for a movie and dinner - courtesy of the Metro Access Bus, of course.

But today, our date was cancelled; we had too much medical management to attend to. Specifically, Steve has been accumulating fluid - a lot of fluid - in his torso.

Peritoneal Dialysis adds fluid into the abdomen, contributing to a fullness in the belly that can be uncomfortable.

But this was much more than discomfort. Somehow, Steve was kilos behind on eliminating fluid. While we usually yielded 1500 cc/day, Friday saw only 180 cc! The rest was left to accumulate not only in the belly, but in Steve's neck and back. His breathing was labored. And where movement has been difficult for Steve since his diagnosis of Critical Illness Myopathy, the extra pounds made movement that much harder. Additionally, it was becoming harder for me to move and care for Steve - now about 20-30 pounds over his normal weight, and over a period of just one to two weeks.

The answer - at least for the short term - is additional dialysis. Not only did we add extra Peritoneal Dialysis Treatments; we added a Home Hemodialysis treatment as well!

Steve was a trooper as I sunk the fifteen gauge needles without xylocaine. But the extra treatment probably kept Steve out of the hospital, at least for today.

We understand there are a variety of tricks we can try with Peritoneal Dialysis as Steve equilibrates - and as we understand the kinetics of his peritoneal membrane.

Additionally, we are tangling with the variabilities in blood sugar - made more tricky by the fact that the dialysis solution that pulls off the most fluid is the one with the highest sugar concentration!

Today's blood sugar low was 31! And we treated it with juice - the fluid volume of the juice partly negating the gains we'd made with dialysis.

But, tomorrow is a new day - hopefully, a better day. Hospitalization is not out of the question, as we take this process one day at a time. We are grateful for the coaching of Angela, the on-call PD Nurse, and that of Steve's nephrologist, Dr. Thakur.

Steve and I will schedule that date for next Sunday.

Take care,
Linda Gromko, MD

Peritoneal Dialysis Begins With a Few Hitches

2011-01-21T23:47:00.000-08:00

Last week, Steve and I went to Peritoneal Dialysis Training at the Northwest Kidney Centers' Seattle location. Steve's Home Hemodialysis fistula had been barely limping along; we'd been running into repeated high pressure alarms suggestive of a critically narrowed vessel. I'm certain we made the switch to PD in the nick of time. After all, Steve has no sites available for central line back-up. With no access, there's no dialysis; without dialysis, there's no Steve!

We met with the ever-patient RN Rebecca, who walked us through the nuances of the procedure. Just as with our Home Hemodialysis training, if you read the directions - and don't "freelance," it all goes pretty smoothly. Rather than the five weeks of daily training we had for Hemodialysis, our PD training took only four days - plus a number of phone calls to the on-call nurses afterwards.

We ran into a few hitches along the way:

1. On the first day, Seattle was deluged by a blizzard just as our session was ending. I made it from the central area to Lake Forest Park in forty minutes in my Suburu. Steve, in the Access Bus, didn't get home for several hours. And then, the bus couldn't make it up the snowy driveway. What to do? Call the Fire Department, of course. Digging a path in the snow, a good-humored fire crew hovered over Steve and his power wheelchair as he chugged safely up our slippery hill.

2. At first, our PD formula didn't remove enough fluid. Steve accumulated over 8 pounds in the first 3 days. A change in the recipe resulted in generous fluid removal - but the more concentrated dextrose solution played havoc with Steve's blood sugar.

3. In a single day, Steve's blood sugar ranged from a high of 374 to a low of 41. Daughter Brita managed the hypoglycemic episode with me on the phone, feeding her dad oranges and sugar water.

4. Then, I committed a protocol error in connecting Steve to the machine. And while I really don't think I contaminated the site, the nurses felt it was safest to give Steve a course of intraperitoneal Vancomycin. All because of my venial sin - one that I'll never repeat! Nobody wants to chance peritonitis from an error in technique.

So how does Steve like the new modality? So far, he says, it's too early to tell. But he quickly adds that he doesn't miss the 15 gauge needles, or the sensation of the needles in his arm.

While the treatments are much simpler to do than Hemodialysis, the treatments take longer, and must be done every day.

Steve isn't too keen on the Buddha belly look he has with two liters of extra fluid in his abdomen. He gets bloated and uncomfortable - it's a work in progress.

From my perspective as the CarePartner, PD is less stressful. Blood flowing at 400 ml/minute can be intimidating. After all, that's practically the blood flow velocity of the human placenta. I delivered babies for years, and I've been on the receiving end of several post-partum hemorrhages. That's a lot of blood pouring out at incredible speed!.

As for Steve, it's yet one more adjustment in the process of his renal failure. Hopefully, we'll work out the bugs in the system, Steve will equilibrate, and life will go on. We can already see the greater ease of travel that might be possible with PD. And living in places where power failures are common, we like the fact that PD can be done entirely without electricity.

As with Hemodialysis, Steve and I are in awe of the medical engineering genius involved in dialysis in general, and the further wonder of being able to adapt this technology to home use.

Take care,
Linda Gromko, MD

Hemodialysis for the Last Time?

2011-01-09T08:07:00.000-08:00

Last night as I took Steve off "the hose," i.e. our NxStage Home Hemodialysis machine, we both commented,

"Is tomorrow's treatment our last time for Home Hemodialysis?"

Steve has been on Hemodialysis since September of 2007, and we've been doing Home Hemo since January of 2008. We've had a few breaks, of course, with Steve's various hospitalizations - when he'd get dialyzed in the hospital.

We remember so poignantly the last time we thought we were performing our last Home Hemodialysis treatment: it was in February, 2009 - the evening before Steve's kidney transplant.

How expectant we were! And why not? We had a living donor kidney from Steve's neice Teresa - a perfect match. Steve was in reasonably good health - "all things considered," as he says so frequently.

We remember the chilly pre-dawn ferry ride from Bainbridge Island en route to the University of Washington Medical Center, meeting the whole family in the hospital lobby as we all waited for what we thought would be Steve's life-changing miracle.

Of course, we had signed the Informed Consent for Surgery. Many things could go wrong; Steve could die. But the odds were so overwhelmingly good. And infomed as we all were, you simply cannot believe that calamities will occur to you or your loved one.

It wasn't til that afternoon, while I was waiting for Steve to come out of surgery that I knew in my gut something was terribly wrong. It was simply taking too long, and Teresa was already in her hospital room, recovering from her blessed donation.

The surgeon walked into the Surgery Waiting Room, and led me into a small consultation area.

"His blood pressure went down very low for about a half hour," he explained. He went on to say that Steve was "stable," but that the new kidney hadn't "awakened yet."

Steve had had a mild heart attack during the surgery, and went on to have a couple more during his hospitalization. The blood flow to the transplanted kidney had never been perfect. And an attempt to improve it led to a disaster: bleeding from the renal artery into the abdomen!

I will never forget the most heartbreaking night of my life: the night Steve was taken for emergent surgery because of the bleeding - and Teresa's kidney was removed forever, serving nobody.

Steve recovered, as Steve seems to do - conquering the odds and rebounding as few could ever do. But, it was back to Hemodialysis. Our "last Home Hemodialysis" would then be followed by two years of Home Dialysis - with hospital interruptions, of course.

This time, we are moving from Home Hemodialysis to Home Peritoneal Dialysis - the compelling reason being that Steve is fast running out of blood vessel sites. We have to do something.

On Tuesday of this week, we begin our Home Training. It should be easier this time; we are expecting four days of training rather than five weeks. And there's no question about it, Home Dialysis is always preferable to the soul-sucking environment of any kidney center - no matter how nice the location or how wonderful the staff.

So, we begin a new journey - with hope. As for another kidney transplant? Steve still wants one dearly. Our hope is that he can recover enough to become ambulatory again and wow the next Transplant Team for another try.

Take care,
Linda Gromko, MD

Steve and Linda Make New Year's Resolutions

2011-01-05T10:28:00.000-08:00

We're not terribly big on New Year's Resolutions in our family. My mother, who turns 93 this month, resolves, "Just get up everyday!"

When I asked Steve for his resolutions, his answer was simple,

"I want to walk. I don't care if it's with a walker or other equipment; I just want to walk."

Not such a simple request. With his new electric wheelchair, Steve is undeniably faster at scooting around during our weekly "dates" for dinner and a movie via Access Bus. But the truth is that he still has only one good limb - his right arm. His lower legs have a girth similar to my wrists - and these were the powerful calves that used to push 600 pounds on the leg press! His left arm was injured as a result of a fistula surgery, though it seems to be coming back little by little.

But walking means a better chance of survival and recovery from a Kidney Transplant surgery - and that is Steve's ultimate goal.

Steve asked me for my resolutions.

"Simple," I said, "I want to sleep in a big bed with you."

Since March of last year, Steve has been confined to a hospital bed. It's a requirement, given his mobility constraints and nursing care practicalities.

And while I logically recognize the necessity of the hospital bed, I miss the basic intimacy of sleeping with my life partner.

Next week brings another challenge: learning Peritoneal Dialysis. Because of Steve's limited fistula access - and the absolute lack of central line back-up sites, a new plan is critical. During our last few Home Hemodialysis runs, we've struggled with high venous pressure alarms.

We have only three or four runs to go before starting with the Peritoneal Dialysis training. I think we can limp along until next week.

So, it's a new year with new perspectives. We are grateful for the gifts we have.
Take care,
Linda Gromko, MD

Merry Christmas!

2010-12-25T05:42:00.000-08:00

Yesterday was a wonderful day for our family. That, in itself, carries such significance!

With my son Tim at the ready in case Steve woke up, I snuck out for an early morning row on Lake Union. My friend Kim had returned from Detective School. She and I, and a new friend Suze, took off in skinny racing singles. We headed off to the south end of Lake Union, back up to Ivar's Salmon House, and back to the boat house.

My last two rowing days have graced us with the most pristine water I've ever seen: glass water without even a ripple. Magical.

Returning home, I "quickly" hooked Steve up to hemodialysis; with fistula challenges, I still plan for an hour "going on." The run was fraught with "nit-nit" alarms from the machine - requiring me to interrupt my gift wrapping repeatedly. Steve passed the time with the help of a visit from friend Mark Mead - decked out in the non-traditional Santa hat which had been handed down from our family math teacher, the late George Mead, Sr.

But then, with minutes to go, Brita and I worked furiously to get Steve ready and help him into him into that fabulous, candy-apple-red electric wheel chair.

Dr. Thakur had said - the day before - "Next time I see you, I want to see your own personal markings on that chair - decals with flames..."

"Oh, there are markings," Steve said. "Chunks of plaster from my driving."

And he's right; the driving is dicey. There are two ranges of speed for the fancy-dancy electric wheelchair, represented by the icons of a tortoise and a hare! Brita is skilled at driving it - ready for Murderball (fabuous film about para-basketball); Steve is nearly there himself.

Arriving by Metro Access bus at Anthony's Homeport Restaurant in Shileshole, we were greeted by the whole family: my 93-year-old mother who hosted the event, Steve's sister Carole, friend Ann, my son Tim, my sister Bonnie with her husband Alan, their kids Mike with his bride-to-be Melissa, and Michelle with the star of the show - Mason.

Michelle and Mason contemplate the menu at Anthony's

At 22 months, towheaded Mason looked jaunty in the always-appropriate crisp white shirt, a classic hounds tooth vest and and holiday red tie. But no doubt about it, Mason didn't care about his fashion statement; he was eyeing the joystick on Steve's electric wheelchair!

It was a lovely meal, a beautiful setting over the water. We had a wonderful time, as we have for decades now. The cast changes a bit, but the tradition has been going on for over two decades.

Steve, Brita, and I had to get back home by Access bus, on their schedule, of course. But the wheelchair lift was fascinating to Mason, and our trip back home was triumphant.

Steve with his "support staff" behind him: from left, Linda, Brita, and Carole

By all accounts, this was a bonus Christmas! Had anyone told me we'd be enjoying this back in March when Steve's cardiac ejection fraction was only 15 percent, I would have thought them cruel; it would have seemed simply unfathomable.

Yet, there we were: a family impacted in so many ways by the harshness of serious illness, but present and loving...and persisting! Victorious, by any measure. Who would have thought?

Merry Christmas, and take care.
Linda Gromko, MD

Christmas Could Come Tomorrow...

2010-12-22T01:04:00.000-08:00

It would be an understatement to say that Steve has had some tough luck over the past few years. With critical illness myopathy following a life-saving open heart surgery and a nerve injury occurring during a fistula surgery, Steve has only one functioning limb - his right arm.

The rest of his body is coming along gradually, and Steve has clearly made progress. But he is far from ambulatory. The last time Steve walked was when he walked into the hospital in March 2010. He is working very hard to regain his physical capacity, and can now stand for limited periods of time. Fighting muscle atrophy - when muscles cannot be used - is rugged.

Don't get me wrong; we are immensely grateful that Steve is alive at all! I think most people would have died at many of the critical junctures Steve has experienced.

When Steve's rehab physician ordered an electric wheelchair a few months ago, we all thought it would be a slam dunk. One functioning limb, after all.

But amazingly, Medicare denied the request! We gathered another letter of painfully obvious medical documentation. Medicare then had thirty more days to consider and deliver their decree.

In Steve's situation, thirty more days of uncertainty and delay seemed practically criminal!

But we heard today that the request was finally granted. With any luck at all, Steve may see that candy-apple-red electric wheelchair tomorrow! It will make life much easier for him - and for all of us - at home. And can you imagine what it will be like in a movie theater or mall? Costco, here we come!

This week has been particularly challenging for Steve in that he had his Peritoneal Dialysis catheter surgically placed into his belly just over a week ago. No matter what the procedure, it takes at least a week for Steve to snap back into his compromised normalcy. It must take a while for the anesthetics to really clear - or maybe it's the narcotics. Steve is known for his vivid drug-induced hallucinations ("Are these fish swimming up my back?")

Peritoneal Dialysis training begins when the site is fully healed, and is scheduled for the second week in January. We are hoping this will offer a new beginning - with an easier technology that is not dependent on the fragile fistulas.

And if all this excitement wasn't enough, Steve gets an in-home hair cut tomorrow!

"How does he want it?" asked the hairdresser.

"Something in a Dick Cheney cut, perhaps," I said of my devout Democrat. "Just clean him up so we can take him out for Christmas!"

And taking him out in that brand new candy-apple-red chair will be a milestone gift for all of us.

Take care,
Linda Gromko, MD

Christmastime Brings Musical Visitors...and More Surgery

2010-12-13T09:24:00.000-08:00

One of the most soothing - and invigorating - gifts Steve and I have received through Steve's illness has been the presence of live music. Whether in the hospital or at home, Steve and I have our own personal songwriter and vocalist - Bob Bost. Some of you may know that Bob also works as a graphics designer, and designed my beautiful cover for "Complications: A Doctor's Love Story," as well as the striking butterfly logo for my medical practice weight loss program (http://www.queenannemedicalweightloss.com/).

Steve and I present Bob Bost with a framed copy of the cover he designed for "Complications: A Doctor's Love Story." The photo was taken in the Spring or Summer of 2009 - when Steve was ambulatory.

When Bob comes to sing, he often brings friends to sing too - friends like Larry Murante or Alecia Healey. Friday's friend was the celebrity songwriter and vocalist Linda Waterfall. Imagine - Bob Bost and Linda Waterfall singing right there in our living room!

They sang a variety of Christmas and Winter Solstice songs, beautifully phrased and accompanied by their accoustic guitars. It was a magical, musical evening.

When Linda playfully invited us to "welcome the darkness," she looked as joyous as a little girl at recess - doing exactly what she loved to do best.

Linda and Bob had sung for Steve in June 2010, when he was still an inpatient at Swedish Medical Center. He was so ill at the time, he barely remembers the visit - even though we all sang Happy Birthday to daughter Brita.

Linda and Bob both commented on how much better Steve looks and sounds. I see Steve every day, so I see the babysteps. They could see a bigger picture, and this was a wonderful gift for me.

*****

But this morning, I am sitting - as I have done so many times before - in a surgical waiting room. We got off to a rocky start this early morning, as the Nurses' Aides transported Steve awkwardly in the Hoyer Lift - flexing his hips too far for his comfort, evoking sincere groans from Steve.

A kind and competent nurse took Steve's medical history - his unbelievably complex medical history. It's odd the things we have now normalized. I heard myself say, "Oh, yes, he does have a pacemaker," and "That's right, he had Legionnaire's Disease many years ago."

And always, "Yes, we do dialysis at home - Home Hemodialysis, and his last treatment was yesterday morning."

But in the Surgical Pre-Op area, Steve slid into the well-oiled machine. Today, he will receive a Peritoneal Dialysis catheter placed laparoscopically into his abdomen.

We are running out of fistula access positions for dialysis, and there is no remaining central line position available due to earlier narrowings! This is a vulnerable spot to be in, and Steve is in full agreement with the pro-active approach.

With a little luck, we'll be finished with our Home Peritoneal Dialysis Training before his current dialysis fistula goes down once again.

Take care,
Linda Gromko, MD

"Heart and Soul" Profiles Business with Compassionate Missions

2010-12-02T22:12:00.000-08:00

Someone recently sent me a copy of Robert L. Shook's "Heart and Soul" (Benbella Books, 2010).

As a small business onwer who truly seeks to "do the right thing," I found it inspirational to read this review of several very large businesses that, while profitable, maintain a posture of doing good in the world. Shook, author of over fifty books, profiles InRETURN - a company which offers employment to brain injured individuals. He examines Starkey Laboratories, the world's largest manulacturer of custom hearing aids, and inventor of the first in-the-ear hearing aid. The Starkey Hearing foundation gives $50 million and 100,000 hearing aids each year to the world's underpriviledged.

The dialysis community will be interested in Shook's profile of DaVita, the company responsible for serving one-fouth of the United States' 450,000 people on dialysis. The company, whose name means "giving life" in Italian, underwent a major change in its corporate culture during an expansion period. The company focused on its "village," or community - seeking to treat its "teammates" like family members.

I was impressed by the company's emphasis on conveying to its staff the realities of living with ESRD. DaVita, for instance, features a "Reality 101" class for all of its teammates to help them appreciate the realities of living with renal failure.

Shook outlines a variety of global outreach missions, illustrating the saying, "they don't care how much you know until they know how much you care."

If any company should focus on the needs of its clients, it would be a Dialysis Company. Shook, beginning with his clear primer on End Stage Renal Disease, makes a compelling case for DaVita - and a corporate culture designed to support the end user of dialysis services.

Take care,
Linda Gromko, MD

Winter Cold Snap Highlights our Family's Vulnerability

2010-11-24T02:02:00.000-08:00

We are such weather wimps in Seattle. Our climate here is so moderate that we rarely endure snow or bitter cold. But this week, snow and tempertures in the teens have frozen our hilly streets, making the side streets impassable. Schools have closed, and so has my medical clinic.

As soon as the snow started coming down in earnest, I began to strategize about Steve's dialysis. He couldn't miss treatments, of course. And our driveway is steep enough that we really cannot drive him out of here. Moreover, he requires a cabulance or Access bus for transportation because of his wheelchair.

So, we just hunkered down and took care of dialysis at home. We haven't been able to get out in a couple of days - and we really haven't needed to.

But it has highlighted for me the sense of true vulnerability we have as a family with a disabled person who requires ongoing life-sustaining treatments.

So what to do?

For the moment, we'll just keep on doing what we're doing. But I'll start stocking our pantry a little differently, planning ahead for more meals on hand. I think we're OK in the emergency preparedness area, but I'll firm this up a bit. Bottled water, extra blankets, flashlights are not frills. Particularly if the power went out again.

And I'll breathe a little easier when tomorrow's Home Hemodialysis treatment is done, and "in the bank."

Take care,
Linda Gromko, MD

Power Failure Provides a Photo-Op

2010-11-20T18:24:00.000-08:00

Just before I was planning to start Steve's dialysis today, we had a power failure. Several trees had gone down, bringing power lines with them. This has obvious meaning in a "dialysis home."

I was moving Steve back to his hospital bed, when it dawned on me that I couldn't lower the hospital bed - no power!

So, we resorted to the Hoyer, and moved him for the first time to one of our upholstered living room chairs. Sitting in a "real" chair, Steve seemed more like himself. I snapped a photo, below, as Steve chatted with Tim and me.

Welcome back, Steve. You're looking better every day.

Linda Gromko, MD

Steve's Next Chapter: Peritoneal Dialysis

2010-11-20T10:22:00.000-08:00

When I first really learned anything about "Renal Replacement Therapy," the conference speaker urged us to think of kidney transplant, Hemodialysis, and Peritoneal Dialysis as somewhat interchangeable. Of course, the three modalities are not the same; transplant is by far the best in patients who qualify and can find a kidney.

Steve is running out of fistula access points. He has had two angioplasties of his last fistula - one in August, and one about a week ago. We're back up to running dialysis at a blood pump speed of 400 ml/minute. But we both know it's only a matter of time before that angioplasty runs its course and the fistula stenoses (narrows) once again.

The greater problems are these:

Steve sustained a median nerve injury at the site of his last fistula placement, rendering his left hand only marginally functional, and nobody's eager to try that site again.
Steve has NO central line access points available; all potential sites are narrowed from earlier central lines.

That could leave Steve - in a pinch - with a groin catheter. Again, nobody's first choice.

So these realities have prompted Steve's nephrologist, Dr. Smiley Thakur, to consider Peritoneal Dialysis. Steve's body mass is smaller now, and it could work - at least as an interim modality.

In Hemodialysis, the filter that performs the kidney function is external to the patient and looks like a long, cylindrical oil filter. In Peritoneal Dialysis, the filter is the patient's own peritoneal membrane - the membrane that lines the abdominal organs.

In "PD," no blood is exchanged. The dilysate runs into the patients abdomen via a catheter. Dialysate fluid mingles with the vascular peritoneal membrane where molecules meander back and forth, allowing for excretion of the patient's waste. After this "dwell" period where the dialysate fluid sits in the abdominal cavity, the fluid is allowed to run out and is replaced by fresh dialysate fluid to start the process once again. Ingenious!

PD is done daily. It can be done through the day as a number of individual "fills and dwells" - and it can be done automatically overnight. It's great for travel. It's technically easier than Hemodialysis, and requires less training.

We're now into the logistics of setting up the catheter placement, getting training, and trying the new modality in December. The ease of the treatments, although they are required daily, is very appealing to both of us.

So Steve and I move to a new chapter, tackling our challenges as we have in the past. With a little grumbling, a lot of irreverent humor, and boatloads of gratitude to have these modalities available. After all, he gets to live.

Take care,
Linda Gromko, MD

Kidneys and Water Collide in "Rowing Through the Winter"

2010-11-11T11:59:00.000-08:00

Please visit my Rowing Blog: http://www.rowingthroughthewinter.blogspot.com/ today for an update on Steve and his fistula dilemma.

Take care,
Linda Gromko, MD

All Velcro'd In...

2010-11-05T12:39:00.000-07:00

Steve has done two stints on his new Standing Table - for ten to twenty minutes at a time. The first stint was exhausting, albeit triumphant. Blood pressure must equilibrate; the legs take more load. But it's all necessary if Steve is ever to progress to walking.

The above picture shows Steve "standing," not on his own power, of course. The bands around his chest, hips, and thighs are made of sturdy fabric, secured with Velcro.

But I think it's easy to see in Steve's face that verticality makes a difference! It certainly gives us hope.

And even though the steps are baby-steps at times, they are clearly steps in the right direction. This from a man who by all rights should have been dead many incidents ago!

Thanks again to the Village that provided the gift of the Standing Table. It's provided an amazing boost to Steve and his team.

Take care,
Linda Gromko, MD

Steve Gets Some Remarkable Help from Extraordinary Friends

2010-10-31T21:03:00.000-07:00

Home from the hospital now for 3.5 months, Steve is making progress. He has a formal Physical Therapy and Occupational Therapy team - and they are doing an excellent job. Mobility remains a huge challenge. Back in April, it took four adults working with full strength to assist Steve into a sitting position. Now, he has enough core strength to maintain a sitting position on his own, at least for a time.

Transferring from bed to chair used to require a Hoyer lift. But one day, our friend George Mead brought in a sliding board. And it simplified Steve's transfers - and our lives - enormously. George isn't a Physical Therapist. But he'd had some real life experience, and beat all of the therapists to the punch.

Walking is a way off yet. Steve can stand for a minute or two at a time now. But to really build his leg strength, Steve needs to bear weight on his legs. And that requires a standing table for someone in Steve's condition. The standing table enables one to lie, secured, on the horizontal table, and then to be gradually tilted into an inclined position - and finally, upright. Medicare won't pay for such luxuries! And they cost between two and three thousand dollars, new.

Steve's Physical Therapist mentioned to our friend Suzi Spinner that Steve would benefit from a standing table. That was Thursday. Suzi made some rapid fire calls: to friend Bob Ness on Bainbridge Island, to me, to the MS-help Store in Edmonds. Suzi mobilized the troops.

Imagine Steve's surprise when Bob and another friend - who wishes to remain anonymous - arrived at our home Saturday afternoon and wheeled in a gently used standing table! It's beautiful, crafted from a blond wood that complements the cabinets in our home.

After many thanks and good wishes were exchanged, our friends left to catch a ferry.

I asked, "Who has the kind of friends that would buy him a standing table? That's amazing!"

And Steve just looked at me and broke into tears.

It has all been pretty humbling. Our village is at work.

Take care,
Linda Gromko, MD

Gordon Gekko and Steve Make a Comeback

2010-10-18T22:53:00.000-07:00

Steve and I hadn't gone out anywhere that didn't involve a medical procedure since March of 2010. We moved him directly from Swedish Hospital to a fully accessible rental home in Lake Forest Park after his five-month hospitalization ended in July. He barely knows his new community.

Confined to the home, Steve's world has been terribly constricted. His activities are limited to Physical Therapy, Occupational Therapy, and, of course, Home Hemodialysis.

But oh, how Steve has longed to get out to a movie. What was once a weekly ritual now seemed unattainable.

We did have a couple of free tickets, and Steve had been approved for door-to-door service on the Metro Access bus. Could we manage it?

Yesterday, we did it! Steve and I took the Access bus to a neighborhood theater, ate a little lunch at the Jewel Box Cafe, topped that off with too much theater popcorn, and maneuvered into the best seats in the house. We had the whole theater to ourselves as we witnessed Gordon Gekko's comeback in Wallstreet: Money Never Sleeps. We watched the previews - for next time.

We spent the afternoon doing deliciously ordinary things. The kind of extraordinary things we all take for granted - until they're gone, of course.

On the way home, we rode part of the way with a woman we picked up at the Paramount Theater. In her electric wheelchair, she had gone to see Stuart McLean from the Vinyl Cafe. Steve and I had seen his performance a year or two ago, when Steve was ambulatory. The woman described the show a little, and then turned back to read the Kindle book she'd attached to her mobile chair. She was doing allright.

We got back home about an hour-and-a-half after leaving the movie theater. But Steve was feeling well, and it was nice to see the city in the calm October dusk. It really was a perfect date. We felt included in the world. We felt participatory in our own lives.

Take care.
Linda Gromko, MD

Steve's Midlife Crisis

2010-10-13T16:04:00.000-07:00

Steve's ready for a little more mobility. He's been essentially bedridden since 3/2010. We transfer him from bed to wheelchair via Hoyer lift, but he needs a special van or Metro Access Bus for transportation out of the house. Steve have always been a huge movie buff, and DVDs just aren't cutting it. He's got cabin fever and he wants to get out!

Last week, his Occupational Therapist used a sliding board to transfer him from bed to wheelchair and back again. This is huge progress. He is now standing four times a day for periods of two minutes at a time - but that is amazing.

As if there weren't enough obstacles already, Steve suffered a nerve injury associated with one of his recent fistula surgeries. His left hand is of little use to him, plus he is terribly bothered by vexing jolts of forearm pain from time to time. Worse yet, the upper body strength he needed so badly was profoundly reduced.

What to do? The answer was obvious to Steve: a candy apple red electric wheelchair!

Steve will be able to move around the house on his own. Plus, when we get the Access Bus operational, we'll be able to go to the Crest Cinema for a $10 date! Life is getting better.

We're not out of the woods by any means. Steve is still precarious. But a candy apple red electric wheelchair, a bit of mobility to remind us of normalcy? We're on our way.

We even made a visit to the Swedish Kidney Transplant Team. "Come back in six months," the surgeon said. "We'll see how far you've come by then. A transplant is not completely out of the question, but you'd have to be willing to die for it."

Something tells me that that candy apple red chair may be the token of Steve's midlife crisis. Read that MIDlife crisis, not end of life crisis.

Take care.
Linda Gromko, MD

When the Caregiver's Feelings are Wounded

2010-10-02T11:21:00.000-07:00

A patient of mine tearfully told the story of her elderly mother's bitter dissatisfaction with her home health care. Most poignant was the implication that the daughter could have - or should have - been doing more to assist her mother. The daughter, who had gone well above and beyond the call of duty to provide loving, safe care, was understandably wounded.

Another woman, who has provided Home Hemodialysis assistance for her husband for many years, noted how painful it felt when something she would do would seem to irritate her husband. Her only desire was to help!

I remember an evening years ago during a Home Hemodialysis run with my husband Steve, when he asked a question I couldn't answer.

"Where did you go to medical school - Guatemala?" he snorted.

I was furious. Here I was - balancing a medical practice, the new-to-me technology of Home Hemodialysis, his illness, a teenaged daughter - spending every available moment on Steve's care - and Guatemala? (which may have a perfectly good medical school, but I went to the University of Washington...)

"You can finish your own damned dialysis!" I said, storming out of the room.

Of course, I returned. Of course, I finished the run. Of course, I understood that I wouldn't want to trade places with Steve - and that his sarcasm arose from his own sense of vulnerability.

We can understand - to the extent possible - with all our hearts and souls. We can liken the circumstance to a child who lashes out at a parent, knowing that the parent will not leave - that the parent is safe. But it can hurt to the core when you hear your loved one being "nice" to hired professionals and dismissive to you.

So what's a family to do? Here are some suggestions that may help:

Make it a pact not to fight during dialysis or other medically vulnerable times.
Courtesy is expected - from both parties. If you are receiving assistance from a CarePartner, extend to them the same courtesty you would extend to someone you pay.
Caregivers/CarePartners: take care of yourselves! Fill up your own bucket with the things you need to sustain your soul. Get your exercise. Eat healthfully.
Simplify your own care circumstances to minimize the irrritants that bog you down.
Remember that you can change your care circumstances if you need to. While I would never have Steve dialyze routinely in-Center, I know that that could happen. We could make that change if we needed to.

Caregivers: Remember that while it can be ever-so-difficult at times, we do it out of love and out of the realization that it's the best thing for our families. And it is an opportunity to experience a type of loving intimacy that isn't available to many people.

That Joni Mitchell song keeps rolling around in my head: "Don't it always seem to go - that you don't know what you've got til it's gone....."

Our loved ones are still here. We take a breath and count those blessings.
Take care.
Linda Gromko, MD

Rowing Through the Winter is a Lesson in Balance

2010-09-25T09:20:00.000-07:00

I love rowing: sculling, sweep rowing. I'm not good at it; in fact, I'm headed on a vertical pitch to mediocrity. But I love it. It's great exercise. It's being out on the water. It's seeing the dynamic working waterfront - where crab fishermen prepare their ships to seek that "Deadliest Catch." Watching the birds organize themselves for their annual journey south, watching salmon jumping, and catching a glimpse of a seal now and then. It's lasting friendships with other rowers, pre-Title IX women finally claiming their own athleticism. Rowing is noticing traffic on freeways and bridges all around - all the while knowing that you're in a tiny boat, tucked away from the fray.

While onlookers perceive rowing to be an upper body sport, it's really all about legs. Legs and balance!

Rich with metaphors, rowing allows me the opportunity to examine balance in my own life. This winter, I'll row regularly with a friend or two, as we did several years ago. Even wipng the ice from our boats, winter rowing was a triumphant experience. Buoyed by a sense of moral superiority, we'd return to our boathouse knowing we'd done it once again!

For me, rowing affords an opportunity for self-care: physical fitness, fun, and obligatory meditation for my busy mind.

Join me at http://www.rowingthroughthewinter.blogspot.com/ as I learn something about much-needed Balance.

Take care. Linda Gromko, MD

Anniversay Phenomenon Strikes Again

2010-09-17T18:38:00.000-07:00

Anniversary Phenomenon is the term used for that vague, in-the-background sense that something is wrong - correlating with a significant event that occurred in the past.

During each of the three Septembers after my husband's rapid fall into kidney failure in 2007, I have experienced "Anniversary Phenomenon." For me, it is a pit-of-the-stomach sense of personal vulnerability. The seasonal cues, the sky, the ambient temperature all scream "Your life can change in a minute to something far different than you'd ever expected."

So what have we learned from this experience so far?

We've learned that End Stage Renal Disease impacts an individual in a global fashion. It isn't a one-organ disease. It impacts the heart, the blood, the bones, and the very lifespan of an individual.
We've learned that dialysis - particularly Home Dialysis - is a lifeline that prolongs life and maximizes the quality of life for the patient AND family.
We've learned that transplant is the ultimate therapy, but that there are too few kidneys available.

We've learned that love is medicine, the only medicine that we can bring to the equation.

We've learned that resilience is a weapon that cannot be underestimated. Someday, I believe there will be a chemical assay for resilience; it will become a standard pre-op lab test!

We've learned that there are good people in health care: honest, straitforward people that want the best for you. And there are those that don't really care.

We've learned that advocacy starts at home - with patient and CarePartner, and branches out to include many support people, family members, and organizations. We're learned that no one understands like someone who has been through a similar journey.

So as Fall comes, I get reflective - philosophical. I'll never forget the first few days of Steve's critical diagnosis. It was a benchmark occasion, one that neither of us would have signed up for. But all in all, I think we've done as well as a couple could have done given our circumstances.. Have we had problems? The medical complications have been legion! Would I ever go back and do something different?

No, never. You find a soulmate, and the rest follows.
Take care,
Linda Gromko, MD

Access Bus Offers Opportunity, but Deflates the Spirit

2010-09-05T14:11:00.000-07:00

When Steve goes to a doctor's appointment, he must travel in his wheelchair. We transport him from bed to wheelchair via Hoyer Lift. Then, to go anywhere, he must travel in a wheelchair van - specially equipped to secure the wheelchair to the floor and to the sides of the van. So far, he has traveled in commercial vans - with each one-way trip costing $35 out of pocket.

The Kidney Center suggested we look into Access Bus - which would cost only $1 per trip, and allow a caregiver to travel at no charge. Access is a Seattle Metro bus service for the disabled. Essentially, as long as you qualify, a truncated Access Bus comes to your home, picks you up, and delivers you to your destination. Plus, the busses are equipped with lifts and tracks in the floor to clamp a wheelchair safely into place.

To initiate Access Bus service, we had to take Steve to Harborview Medical Center for an evaluation. I assumed it was to prove he was disabled "enough," but the staff expained that it was also to ensure that a person could ride the bus safely.

So yesterday, we had the Access Bus evaluation. At no charge, the Access Bus transported us to and from Harborview. The first driver was very kind and professional, and even a little early. We made one stop on the way to Harborview - to pick up a notably slender woman who walked to the bus with the aid of a cane. She looked so fragile; a stiff gust would have derailed her little body. The driver carefully assisted her on board, and helped her step off the bus at her First Hill destination.

Steve became nauseated during the bumpy ride, and the driver pulled over to find a plastic bag for him just in case. I noticed a small first aid kit and "Bodily Fluids Clean-up" kit duct-taped to the inside of the bus.

At Harborview, the evaluation was brief. Steve's disabilities are painfully obvious. The therapist measured and weighed Steve in the wheelchair. He was well under the 600 pound weight limit, but it certainly seemed to us that that information would have been available without the physical visit.

The return trip was treacherous. Leaving a full hour after the scheduled time, we made stops for two other passengers before arriving home an hour-and-a-half later. The entire evaluation journey - start to finish - took five hours!

The duration is significant, as Steve cannot sit in the wheelchair that long without considerable tailbone pain. Moreover, the return driver was befuddled - ignoring not only the GPS system, but also directions from passengers. As a result, the journey consisted of a serpentine Twilight Zone ride of twists and turns, punctuated by jarring speed bumps. It took far longer than it should have. I watched Steve - pale and weak - working to support his nodding head with arms that don't work well. It was terribly disheartening for me.

We were so relieved to get home. Relieved and exhausted. I got Steve to bed immediately, and he slept through three episodes of Six Feet Under.

The take-home messages here?

We're grateful that Access exists, and can easily appreciate its benefits.
As in any service, service providers will vary in qualifications - and in kindness.
Asking passengers for directions is reasonable - and it's respectful.
The people who can use the Access Bus service are more functional than many; they can, after all, call for reservations and negotiate the whole process.

But there's no doubt about it: the experience was just one more reminder that our lives have become even more marginialized by End Stage Renal Disease and the unexpected nightmare of Critical Illness Polyneuropathy.

Steve's take on the experience? "It offers the difference between some life and no life."

I came home feeling greatly respectful of the folks who have the gumption to get out in the world in spite of the ironic obstacles afforded by Access!

Take care,
Linda Gromko, MD

Altered Mental Status: A Tough - but Temporary - Hit

2010-08-26T22:30:00.000-07:00

Steve had a rough two weeks. After a period of struggles with high arterial pressures on Home Dialysis, we suspected that his right upper arm fistula had become stenosed or narrowed. A fistulogram confirmed this, and Steve had an angioplasty to open the narrowed portions.

Access had become particularly critical, as we had learned that both internal jugular veins were narrowed and could not admit temporary central lines!

For this reason, Steve went on to have vein mapping - and the first of the two-part surgery to "install" a new fistula in the left upper arm. But a day or two later, his left hand was cool, numb, and pale - and his movement was impared.

The new fistula was "stealing" blood from the hand downstream, so Steve underwent a bypass graft to re-vascularize the hand - while still maintaining the new fistula.

All in all, there were three surgical procedures in eight days - with sedatives and narcotics for pain control. I had observed before that it seems to take a while for Steve to "clear" such necessary medications. For a day or two, he would be a bit "loopy" - not always tracking clearly, and sometimes frankly bizarre in his thought processes.

This time, the altered mental status persisted longer: for a period of about a week. When it didn't clear, I worried that we might be missing something - he had been mentally "off" when septic earlier in the year. Perhaps he was underdialyzed - repeating the uremic encephalopathy that had terrified me when he was first diagnosed with Acute Renal Failure in 2007. The ER labs confirmed that dialysis was on track, and a head CT confirmed that Steve had not had a stroke.

This afternoon, while discussing the intricacies of Philly Cheese Steaks with one of the nurses, it was clear that Steve was starting to surface. A little beat up, perhaps, but coming back.

Of all the variations we've witnessed in this journey, Altered Mental Status has been the most frightening. We are enormously relieved that this seems to have been temporary - probably the cummulative effect of medications over a relatively short time.

Tonight, I am relieved to have Steve back.
Take care. Linda Gromko, MD

If You Qualify, Join the NxStage Users Group...

2010-08-23T13:56:00.000-07:00

Talk about an elite membership! If you are a NxStage (Home Dialysis Machine) user or CarePartner, you might want to know about this group. I just joined as a CarePartner.

Go to Yahoo.com, then Yahoo Groups, then NxStage Users Group. If you qualify, you may then become a member of the NxStage Users Group. It's not run by the NxStage company. It's run by consumers who use the machines on a regular basis.

Then, follow the members' conversations: "I had a problem with my fistula..." or "How do we take blood pressures when there are fistulas in both arms?" or "Do you know of a center that promotes Nocturnal Dialysis?"

The best thing about this forum is that solutions are offered by people who know! People who know how to build a bandage bridge at the point of access to reduce a chronic Red #24 Alarm. People who know what it's like to have the whole operation primed and ready to go, only to have to restart due to a technicality! And people who really understand that access protection is paramount.

I'm not trying to imply that others can't help; they do! But when I call a help-line and am asked "Does this call pertain to a Home Dialysis patient?" I know in my bones that the operator has probably NOT struggled with an arterial pressure that suddenly reads >400! And when asked at the national center, "What state are you calling from?" It's a stage of urgency - bet on it!

Does this invalidate the advice of Dialysis Nurses, physicians, and others? Not at all. But it's good to remember how self-help groups of all sorts came to be. The people in the know - the "end users" are the front-line experts.

Take care,
Linda Gromko, MD

Warning: Home Dialysis Families Question Authority(!)

2010-08-15T21:06:00.000-07:00

I'm guessing that people who do Home Dialysis are probably more self-directed, more independent, and maybe more "invested" in their care than the average patient. Or at the very least, they come with rugged CarePartners!

When Steve was planning to come home from his four-month hospitalization last month, he had very little physical mobility. He could be transfered by a lift to a wheelchair - but the act was almost entirely passive on his part, and Steve weighs 200 pounds.

In the hospital, such lifts look like industrial meat hooks which run along built-in tracks on the ceiling. You position your patient on a fabric sling, and attach the sling to the hooks overhead. The patient is "levitated" with a squeeze of the handle. The electric lifts are simple to use, and comfortable for staff and patients alike. And in this age of morbid obesity, the overhead lifts greatly simplify the care of very large patients.

The home version, however - at least the version that Medicare provides - is a sling mechanism which is hooked to a hand-operated pump. Gathering the patient up with the six sturdy straps on the same fabric sling, you attach the strap loops to the Hoyer Lift, and pump away using muscle power - not electricity. The patient is raised a little with each pump, then pivoted within range of a wheelchair. The patient is then lowered gradually into the chair.

I used the same Hoyer Lift when I was a nursing student in the early 1970's. Nothing's changed here, except that the patient is my husband with no capacity to save himself if I make a serious mistake.

The Occupational Therapist in the hospital stated emphatically,

"You cannot operate the Hoyer Lift and transfer Steve to a wheelchair by yourself! You simply cannot do it!"

"If it can be done safely, I MUST learn how to do it," I insisted. "In our home, we won't have a staff. We have to be able to function independently. Teach me how to do it."

The next day, a sympathetic Physical Therapist spent an hour showing me how to operate the pump Hoyer. We tried all sorts of tricks - and it was a challenge!

At home, our first Hoyer-to-wheelchair transfer was a near disaster. I called our friend George Mead, who had used the Hoyer to transfer his father when he'd had a stroke. George - with the help of friend and colleague Jane McClure - took us through hours of practice, with Jane as the "patient."

The point is this: this maneuver can be done safely at home - with adequate training and practice. NOT training me would have meant more immobility risks for Steve. And training me meant a better quality of home care.

It parallels Home Hemodialysis: it may not be for everyone. But for the appropriate patient and family, this added layer of training improves patient care and quality of life. I'm happy to report that this part of Steve's care is working seamlessly - with me and Steve's individual caregivers each operating the device solo.

But, as a family member, you have to ask and be assertive to receive this level of training. We're glad we did.
Take care. Linda Gromko, MD

Looking for "Normal" in the Midst of "Very Different"

2010-08-11T15:53:00.000-07:00

A patient and I were chatting about doing things which feel "normal" when life is complicated by factors such as chronic illness, Home Dialysis, 24 hour-a-day care, and so on.

"Find anything you like to do - anything!" I said. "When Steve and I were first doing Home Hemodialysis, we watched program after program of the HBO hit, Dexter. You know - the one about the Police Blood Spatter Expert who was a serial killer, but always did the right thing!"

"A Blood Spatter expert and Home Hemodialysis together?" we joked. "In the same room?"

Ironic? You bet! But Home Hemodialysis is the elephant in the bedroom that's not going away anytime soon. And Dexter provided the perfect diversion: a little dark, a little sinister, and very funny.

So, now that we're in a new chapter - with Steve experiencing mobility challenges, and new troubles with that once-perfect fistula - we're off to a new series, with DVDs lent by my friend and work colleague Brian Grev.

"This go-round, we're watching Six Feet Under!" I told my patient.

It makes the time pass, it's absorbing - and Steve and I feel more normal! A little irreverent humor is always helpful when we're looking to feel more like ourselves!
Take care,
Linda Gromko, MD

Steve Stood Up!!

2010-08-04T12:16:00.000-07:00

Home from his four-month hospitalization on July 12, Steve has been making steady improvement. He has been working hard in Physical Therapy and Occupational Therapy. His diabetes has been under perfect control; his appetite has increased. Home Hemodialysis has gone well with a wonderful new fistula that has produced NO problems!

But the biggest news is this: Steve stood up - spotted, but unaided, for a minute-and-a-half yesterday. He stood two more times, for a total of three minutes! (His Physical Therapist and exceptional caregiver, Angelito, flanked him - of course.)

Steve understands that walking remains a ways away....but what a great start! For me, it was hard not to have been there to see it.

It was a little like having your child take their first steps at daycare. You celebrate the victory, but ache to have been there in person!

This is not a complaint, mind you. I am so pleased with the way Steve has progressed. Walking does seem to be on the horizon at some point. What's best, though, is that Steve has made an excellent recovery with his virtually re-built heart - and no new problems have surfaced. We are so thankful.

So Critical Illness Myopathy? We see this...and move to conquer this challenge, too! Resilience is the single most important quality a person can have!

Take care,
Linda Gromko, MD

Steve Comes Home!

2010-07-24T08:37:00.000-07:00

I've been a bit neglectful of the blog lately, but I really have been busy. The big story is this:

Steve came home on Monday, July 12!

Now, a lot is very different: we are now in a new rental home - a wheelchair accessible home just north of Seattle in Lake Forest Park. Steve requires round-the-clock care, most of which is provided by me. He also has caregivers whom we hire. We do Home Dialysis four days/week; I'd like to go for five days - but it's better than the three times/week treatments at the kidney center. Besides, Steve just isn't that "portable."

Because of his long hospitalization and the condition "Critical Illness Myopathy/Polyneuropathy," Steve has limited muscle movement. He cannot turn over in bed. He cannot stand or walk. He cannot get to a sitting possition unaided. He can feed himself, and - thank God - he can operate the TV remote!

How long will it take for the condition to lift? How much funtion will he get back? There are no answers here.

But, there's no doubt about it: he is improving. And the improvement seems faster at home!

We are just grateful he is alive; he came perilously close to dying on too many occasions on this four-month hospital stint. But we experienced medical excellence on the parts of many physicians. Most notably, heart surgeon Joseph Teply, MD, and electrical engineer-turned-anesthesiologist Brad Tupper, MD. Unbelievable tenacity from those two shepherded Steve through two surgeries that teetered way too close to the edge for my comfort level. Steve had many complications, including acute cholecystitis (infected gall bladder), sepsis, and then "Critical Illness Myopathy/Polyneuropathy."

Now we are left with our old "friendly" dragons: diabetes and End Stage Renal Failure. Would we have ever anticipated that dialysis would become "ho-hum?"

The transition to the Lake Forest Park home was made through the grace of an army of "elves:" those who helped with the move and garage sale at the Bainbridge home, those who designed and updated the Lake Forest Park home, and the many friends who came, called, and generally supported Steve's transition.

We owe a special debt to:

Jane McClure (co-author with me of "Arrangng Your Life When Dialysis Comes Home: The Underwear Factor") who designed the space from already workable to extraordinary
Suzi Spinner who helped with all aspects of the project
Carole Williams who helped with everything
George Mead, who helped with designer installations and provided wonderful workmen to help
Bob Ness, Lucia and Pete Handel, Debbie and Lenny Mickelson, Pete and Deanna Howell, Tim Franklin, and Brita Williams who worked on the garage sale extravaganza.
And others, whose contributions I have undoubtedly omitted - my sincere apologies.

We were astonished and humbled when Smiley Thakur, MD - Steve's nephrologist in the community - made a Home Visit. What encouragement he provided!

So we're back on land, I guess. And happy to be here. For me, no more ferry commute; for Brita, a more poignant transition to a new school. But, she's been a trooper about it. We are all doing "what has to be done." And we'll make it work.

Take care. Linda Gromko, MD

The New Fistula Works!

2010-07-04T18:31:00.000-07:00

As we prepare for going home with Steve on July 12, we have been planning to restart Home Hemodialysis after his four month stint in the hospital. The big question was this: Would Steve's brand new fistula be ready to use? Steve, like many diabetics, has had some difficulties with fistulas in the past.

But after two surgeries to create it, the upper arm fistula now has a robust "thrill" - that familiar vibratory sensation you feel when you lay your fingers across a healthy fistula. A "thrill" or "bruit" confirms underlying blood flow and turbulence. A fistula, after all, is created by surgically connecting an artery to a vein - to make that vein grow large enough and sturdy enough to accommodate a blood flow as high as 400 ml/min!

The Dialysis Team had agreed to initiate Steve's "virgin" fistula while he is still in the hospital. If this process went well, we could possibly leave the hospital without his internal jugular catheter (the central line in his neck). This would be enormously significant, as it would remove one more potential source of infection and simplify Steve's home care.

They also agreed to have me do today's puncture. If you haven't seen one, a 16 guage sharp needle looks like a speer. You can see down the inside of the barrel! Remember that a guage of 16 means it's one-sixteenth of an inch in diameter!

So, with nerves on notice, I injected two small wheals of lidocaine, and plunged in the two 16-guage needles. Success! The blood flowed easily, and the run went well. I believe that the process will come back to us - like riding a bike, sort of.

The best thing about all of this is that in Steve's somewhat extreme case, he will able to take advantage of all the positives of Home Dialysis:

One person doing the punctures - me!
The comfort of home
The control of being at home
No transportation to the kidney center (which we'd have to pay for out of pocket)
No "institutional" risk of MRSA
No exposure to technicians who may be less careful about their jobs (we know they are rare, but they do exist!
Flexibility for our already stretched schedule
More contact with friends and family who visit Steve during his treatments
More frequent, gentler dialysis
More effective dialysis

And on and on....

We are continually grateful to have Home Dialysis as an option. What a relief for our family! And what a true miracle this is!

Take care. Linda Gromko, MD

Preparing for the Giant Leap of Faith

2010-07-01T20:49:00.000-07:00

After four months in the hospital, we are working to get Steve home! But not so fast...

Steve's latest challenge - in addition to his End Stage Renal Disease requiring Hemodialysis - is Critical Illness Myopathy/Polyneuropathy. Briefly, this means that Steve is waiting for his muscles and nerves to "wake up" from the effects of his lengthy post-operative course, and then his cholecystitis complicated by sepsis! In more practical terms, this means that Steve cannot sit up, stand, walk, or even roll over in bed.

But, day by day, he is making progress in his core strength and range of motion. And he can feed himself, use the phone, and perform basic grooming.

Here's the big "catch:" he's running out of Medicare-covered days. In fact, he's into his sixty-day lifetime reserve!

No skilled nursing facility will take him - and I wouldn't want that anyway! We looked at a wonderful Adult Family Home, but the cost was completely out of pocket - and Steve would have to go to the kidney center for dialysis; again - transportation to and from would not be covered.

The default position - and we believe the best option - is going home with 24-hour-a-day care. And our goal is July 12!

So, here's our worklist:

Steve must make as much physical progress as is humanly possible between now and July 12.
Steve's new fistula must work well enough for us to use it at home for Home Dialysis - otherwise, we must continue to use his central line with its potential for infection.
We move to a fully wheelchair accessible rental on July 9 - miracle; no ferry commute!
I have arranged for a rolling shower chair to join the hospital bed, Hoyer Lift, and wheelchair which arrive on July 8.
Steve and I meet with a home care agency to discuss the care needs that we will pay for out of pocket (Medicare doesn't cover this, even though they would have covered a nursing home - if one had accepted Steve!)
I find a new gym.
We move Steve to the Lake Forest Park rental on July 12 - to begin home care, and restart Home Hemodialysis!

And, Jane McClure and I will take a break on July 11 to debut our seminar, "Arranging Your Life When Everything Goes to Health!" at the Bainbridge Island Library from 1-4 pm. Do come if you can; registration is $25 at the door, but scholarships are available.

So, we are in the middle of an interesting time. Clearly, it's a new chapter. We have hope. We have more time. And best of all, we are going home.
Take care. Linda Gromko, MD

Steve Makes a Break for It!

2010-06-25T21:32:00.000-07:00

In the hospital since March 2, 2010, Steve's got cabin fever! He's making good progress. We are hoping to get him home in July. But Steve apparently tried to escape!!

Here are the photos and comments of George Mead, Steve's very long-term friend (and the son of my junior high math teacher!). In the first photo, we see Steve with one of his Physical Therapists, Kelli.

As George says (all in fun), "Kelli does her best to keep Steve in her life, but Steve needs his freedom. He does his best to let Kelli down gently."

(Likely story!)

In the photo at left, George says, "Steve jacks up his courage with an unauthorized beverage. To the untrained eye he's just enjoying the passing scene at the Starbucks center at Providence Hospital. He's very close to an unguarded door."

Then, in the final photo below, George writes,

"CODE PURPLE! Steve is outside for the first time since March 2nd, 2010. His cover story is that he's a tourist who accidentally mistook the hospital for a museum.

His sister Carole lends an authentic touch as Steve mingles undetected in the outdoor plaza. It's worth noting that Seattle enjoyed its first warm day [above 75º] since September 2009. It's also worth noting that Steve isn't fully in control of his middle right hand fingers."

Steve, we can't wait to get you home!!!

What a journey! Thanks, George, for the photos and text.

Take care. Linda Gromko, MD

Join Jane McClure and me for Home Dialysis Central Webinar June 30!

2010-06-24T08:28:00.000-07:00

Jane McClure and I, co-authors of "Arranging Your Life When Dialysis Comes Home: 'The Underwear Factor,'" are presenting a Webinar:

"Care for the Care Partner in Home Dialysis"

Wednesday, June 30 at 5:00 p.m. Pacific Daylight Time.

We'll examine:

the impact of ESRD on the Care Partner
the spectrum of what it involves to be a Care Partner
the advantages for the Care Partner
recognizing signs of Care Partner "burnout"
supporting the Care Partner to prevent and treat "burnout"

Essentially, we are devoting our entire Webinar to the Care Partner - that most critical, yet often under-recognized part of successful Home Dialysis!

Visit http://www.homedialysis.org/ for more information.

By the way, this seminar applies to Care Partners in ALL circumstances!
Take cae. Linda Gromko, MD

Critical Illness Myopathy Challenges the Caregiver's Reserve

2010-06-20T00:14:00.000-07:00

After almost three weeks in the Inpatient Rehab Unit with aggressive Physical and Occupational Therapy, Steve has made progress, but it has been slow. His condition has been defined as "Critical Illness Myopathy/Polyneuropathy." Evidently, Critical Illness Myopathy/Polyneuropathy is a global and profound weakness of muscles and nerves which typically follows a prolonged ICU course and/or sepsis. The condition can lift over time. But it may take many months.

So, as we think ahead -- and as we have recently learned that none of the Skilled Nursing Homes that take Medicare will even accept Steve, we turn again to Home Care.

One of the Rehab staff asked me how it would be different to do Home Dialysis with Steve now, as opposed to before his lengthy hospitalization. The differences are obvious. Before, Steve could sit up by himself. He could walk. He could weigh himself, take his own blood pressure, and generally participate more in his care.

He's medically more stable now, with a vastly improved left ventricular ejection fraction of 45-50%. And, his brain looked normal on this week's head CT.

As long as the Kidney Center approves, we will resume Home Hemodialysis soon. This will mean five treatments a week - but no transportation to and from a Center. The transportation wouldn't be covered by Medicare anyway, and it would be enormously disruptive and uncomfortable for Steve.

We turn to Home Dialysis again, with the hope that it will buy us more time until this perplexing condition of Critical Illness Myopathy runs its course.

We are so grateful that he is alive, and mobility via wheelchair would certainly work. We both just want him to live as well as he can.

So send good wishes for us in this new chapter. This is a road we haven't traveled before, and we welcome all the support we can find.

Take care. Linda Gromko, MD

Arranging Your Life When Everything Goes to Health!

2010-06-09T18:10:00.000-07:00

When Jane McClure and I wrote "Arranging Your Life When Dialysis Comes Home: The Underwear Factor," it became clear that our concepts could be generalized to an audience beyond the Kidney Community. Many people deal with chronic medical conditions in one way or another. Whether that means healing a broken limb, or dealing with an elderly parent, chronic health care in the home touches all of us.

Dealing with a chronic medical condition changes the way we live. Yet, we find that people spend more time preparing for a new baby than they do for other life-changing medical circumstances.

As Jane and I worked on "Arranging Your Life When Dialysis Comes Home," we realized that if you can manage Kidney Dialysis at home, you can manage just about anything!

So, we are presenting a seminar entitled "Arranging Your Life When Everything Goes to Health!"

Our first seminar will be presented at the Bainbridge Island Public Library on Sunday, July 11th from 1 to 4 pm. There will be a $25 fee for this seminar, with scholarships available.

Later seminars will be presented in Seattle at the Queen Anne Square Building at 200 W. Mercer.

If you would like to attend the July 11th seminar on beautiful Bainbridge Island, please contact me by email at ljgromko@msn.com or by mail at 200 W. Mercer #104; Seattle, WA 98119 -- we'll send a brochure.

Do you know of others who might benefit from such a seminar: church groups, caregiver support groups, etc.? Please feel free to pass this on to anyone who might benefit.

Take care. Linda Gromko, MD

Steve Enters the World of Rehab

2010-05-30T22:13:00.000-07:00

After 89 days in the hospital -- in both the ICU and the Telemetry Unit, my husband Steve Williams was finally ready to move up two floors to the Inpatient Rehab Unit! He made the move this morning. It was a little disorienting for him, but he found his way as the day went on.

In order to be in the Inpatient Rehab Unit, you must be able to participate in therapies - usually Physical or Occupational Therapy - for a total of three hours each day!

For the first time since his admission in early March, Steve was moved into a wheelchair - by way of the Kermit-green sling and a variation of the old Hoyer lift. The remarkable thing is that he is almost able to sit up without support, and he can now support his head well enough so that our little tour around the Rehab Unit was a treat.

Rehab is a different world where patients wear clothes, not gowns. And the theme of the place is function - whether that means increased mobility, finding adaptive technologies, or gaining strength. The point is functioning in your world, whatever that may require.

And Steve needs all of this so badly! Now that he has a refurbished heart, and he's recovered from his acute cholecystitis and sepsis, he is ready to move ahead.

We have no delusions here; it's going to take a while before we can even entertain the possibility of Steve's coming home. But his medical problems have settled into the areas of End Stage Renal Failure and diabetes....familiar dragons we know!

As always, we are intrigued with the exploration of a new specialty area of medicine. What a different focus: function! But we wouldn't have gotten here without the miracle of Steve's heroic open heart surgery. We are most appreciative of this blessing.

Take care. Linda Gromko, MD

Steve Meets the "Johnny Jump-Up"

2010-05-22T22:14:00.000-07:00

If you've been the parent or grandparent of a six-month-old baby, you know what a "Johnny Jump-Up" is. It's a cloth harness that supports your baby while you suspend him by a spring mechanism fastened to a door jamb. And your baby bounces enthusiastically up and down, pushing off the floor again and again. The baby's happy, and you can get enough time to pay your bills, or complete an assignment. Plus, it's a great little quadriceps and balance exercise for a baby!

So how does this relate to Steve, who's been bedridden for weeks after his critical heart surgery -- and most recently, septic with an acute cholecystitis (gall bladder infection)?

If you've been bedridden for a while, you have to relearn how to support your trunk. You have to learn how to be vertical again!

In the ingenious world of Physical Therapy, there's a contraption that reminds me of that Johnny Jump-Up. With three Physical Therapists working together, Steve was secured into a Kermit-the-Frog-green sling, They carefully hoisted him to a vertical position. With some practice, Steve could transition to a vertical posture -- and find his feet.

Now, he's not a toddler just yet, but this is an enormous step in the right direction!

With more muscle development, time, and a lot more practice, we'll see him emerge yet -- refurbished heart and all. We continue to be amazed at adaptive technologies that contribute to his recovery.

Take care.
Linda Gromko, MD

Back to the Books

2010-05-16T12:54:00.000-07:00

I'll be doing a book signing at Eagle Harbor Book Company on Bainbridge Island for "Complications: A Doctor's Love Story" on Thursday, June 10 from 7:30-8:30 p.m. The bookstore is located at 157 Winslow Way East; Bainbridge Island, WA. It's a one-of-a-kind independent bookstore, with a unique regional flavor.

Catch the 5:30 p.m. or 6:20 p.m. ferry to Bainbridge, leaving from Seattle's Coleman dock. The bookstore is walking distance from the ferry, and there are several great spots to eat and shop along the way.

"Complications: A Doctor's Love Story" takes Steve and me through our early days as a couple. I found him through my Internet ad: "I'd like to meet a nice Democrat."

What I didn't count on were the complications we encountered. Steve had full custody of then nine-year-old Brita -- who greeted me with "I hate every centimeter of you; get used to it!" Then, there were the complications of Steve's health. Known to have diabetes and high blood pressure for years, Steve descended rapidly into the abyss of Acute Renal Failure.

"Complications: A Doctor's Love Story" is one of the few books written about ESRD from a personal standpoint. It also provides an intimate view of Home Hemodialysis, and one family's journey through a major health change.

So, please come to Bainbridge Island on Thursday, June 10!. Take a lovely evening ferry ride to the other side of the sound, and learn more about our family's adventures along the way. I will also have copies of "Arranging Your Life When Dialysis Comes Home: The Underwear Factor" which I co-authored with Interior Designer Jane McClure.

Thank you for your support.

Take care. Linda Gromko, MD

"But I was only gone for two days!"

2010-05-09T15:58:00.000-07:00

Steve has been recovering from his aortic valve replacement and coronary bypass surgery since early March. Slowly eeking towards a stint on Rehab, we have seen progress daily -- but it has been very slow. He hasn't been able to stand up. He can now sit up with help, and only last week he wiped his chin for the very first time!

I had a medical conference to attend in New Jersey Thursday and Friday of last week -- a training event offered only twice a year. I orchestrated my flights so I'd spend the least possible time away, leaving late Wednesday afternoon and returning Friday evening. Besides, I could speak to Steve on the phone.

When I spoke with him on Friday noon, he sounded fine.

But when I got to the hospital at midnight, he had a temperature of 101.5, his white blood cell count had doubled to 26, and he was disoriented.

And I mean really disoriented. The choppers were landing behind his sister Carole, and he was begging to get out of his birthday suit! He couldn't get comfortable, and the focus of his pain was his right upper abdomen.

While there were a number of possibilities, acute cholecyctitis was the leading differential diagnosis. Blood cultures were drawn -- and were growing bacteria (enterococci) by Sunday. A trio of heavy-duty antibiotics was started, and as I write this, Steve is in the Interventional Radiology Department having a drainage tube placed in his gall bladder. He's far too fragile for either a laparoscopic or open cholecystectomy; that will have to wait for a more stable time.

The trip to Interventional Radiology affords Steve another advantage: he needs more IV access. Already dialyzing through a tunneled subclavian catheter, Steve needs more lines for the raft of antibiotics needed to fight his sepsis. The right arm -- with its "curing" fistula-in-development -- isn't an option.

I'm pretty sure there's nothing I would have picked up if I hadn't gone to my conference - if I'd stayed in Seattle. But, a flash of guilt assuredly did pass through my mind.

Caregivers need clones. We can't be everywhere; we can't anticipate every bump in the road. But we somehow feel we should be able to protect our loved ones from fates beyond our control!

As I was reminded on the plane from Newark, "place your own oxygen mask on your face first, and THEN tend to your children or other passengers who need assistance." We have to give ourselves a break! And everything is simply NOT within our control.

Take care. Linda Gromko, MD

What Price Advocacy? Discomfort!

2010-04-26T22:22:00.000-07:00

As my husband Steve completes his seventh week in the hospital following his open heart surgery, it's fair to say that he's come a long way. Truly, by all rights, he should have died -- were it not for the courage of Dr. Joseph Tepley and Dr. Brad Tupper.

But this past week, Steve suffered a setback. For a variety of reasons, he became volume overloaded and suffered several sleepless nights with severe shortness of breath. Fluid was accumulating in his lungs. Because he is essentially bedridden, Steve accumulates edema fluid in his neck and back, and even under his chin -- but less so in the usually dependent areas like the feet.

Concerned that the volume overload would place undue strain on his heart, I approached his health care providers. My concerns were reasonable. Plus, Steve's symptoms of chest constriction and shortness of breath raised concern about other possible diagnoses such as pulmonary embolism and coronary artery ischemia.

Here I am, an MD with a Master of Nursing degree -- and over two years of experience with Home Hemodialysis. And I found it uncomfortable to ask his care providers about these problems!

Would they resent my "intrusion?" Would my comments be charted as "wife insists....?"

Fortunately, Steve's team was gracious. His cardiac enzymes and d-Dimer did not support the worrisome possibilities of bypass graft failure or blood clots in the lungs. His chest X-ray, however, showed classic signs of fluid overload -- signs any second year medical student would have recognized.

I was relieved; we were on the road to correcting the problem. But what would have happened if I hadn't spoken up? Could it have meant a detour back to the ICU -- or worse?

What if I had been elderly (or more elderly than I am)? What if English was a second language? What if I felt truly intimidated, not just uncomfortable?

No doubt about it: there are barriers to being a "mama lion" in the hospital! But I believe, as a wife and caregiver, we have an obligation to overcome our discomfort and step up. Not doing so really could make the difference between recovery and disaster.

Remember: good doctors don't get rattled when you ask them questions. They welcome your input. They don't want a bad outcome either.

Take care. Linda Gromko, MD

Obesity Conference: A Real Eye-Opener

2010-04-19T07:44:00.000-07:00

Last week, I attended the Obesity Conference presented by the American Society of Bariatric Physicians. What an eye-opener!

Two thirds of all Americans are now considered overweight or obese! And the problem is "ever-expanding" in that more children are facing challenges with excess weight. At the conference, I learned that it is now predicted that the current generation will not outlive their parents!

How does excess weight impact the "Renal Community?"

Excess weight is directly related to the following conditions. Certainly, Diabetes, Hypertension, and Metabolic Syndrome increase risks for End Stage Renal Failure (CKD-5). But note how much overlap we see between ESRD and the other conditions listed.

Type II Diabetes
Hypertension
Metabolic Syndrome
Obstructive Sleep Apnea
Coronary Artery Disease
Stroke
Erectile Dysfunction
Abnormal cholesterol
Asthma
Depression
And ON!

I learned that even a 5-10% reduction in weight is medically significant. And -- no surprise -- exercise is essential to keeping weight off on a long-term basis.

The problems of excess weight have become so concerning that we will be offering a Weight Management Program in my Family Practice, Queen Anne Medical Associates, PLLC, beginning in June 2010. I feel we are at a point where it's irresponsible NOT to offer a Weight Management Program of some sort.

Link to http://www.QueenAnneMedicalWeightLoss.com/ for more information.

And, for our new Weight Loss blog, go to http://www.QAMedicalWeightLoss.blogspot.com/.

Take care. Linda Gromko, MD

IMPORTANT ADDENDUM: ESRD patients should attempt a weight reduction program ONLY with the approval of their nephrologist and renal dietician!

The Inn At Cherry Hill -- Useful Recycling of Old Hospital Space

2010-04-15T23:12:00.000-07:00

When I was a medical student at the University of Washington, we rotated through many of the hospitals in the Seattle area. I spent many months at Providence Medical Center, both in medical school and in residency..At the time, it was run by the Sisters of the Charity of Providence. Morning and evening prayers were broadcast over the PA system; there was a crucifix in every room.

Today, Providence has evolved into the "Cherry Hill Campus" of Swedish Medical Center. There's a Starbucks where the gift shop used to be, the chapel appears more "bland" -- even non-denominational, and the crucifixes are gone.

The fifth floor of the old hospital -- with its small private rooms and tiny bathrooms -- was retired from patient use some time ago. Today, it is "The Inn at Cherry Hill" -- with rooms rentable to families of patients at the medical center for a fee that isn't cheap ($70/night), but certainly beats any area hotel rate. The rooms are modest, but clean. Best of all, they are down the hall from your family member. The Inn features a communal washer and dryer, and hospital linen is provided.

For those of us who come a distance, it is a tremendous service. This week, for example, I've been attending a medical conference at the airport. But I still live on Bainbridge Island, and commute to Seattle for work -- and to spend time with Steve at Cherry Hill. Some nights, when there's been too little energy to go around, I've spent the night at the Inn.

I think every hospital should have sleeping rooms for patients' families. And if not full quarters, at least a "USO style" lounge with showers, recliners, desks, and phones. A place to wash up, and a place to calm down.

I applaud Swedish for using these old rooms for such a humane purpose. Undoubtedly, they wouldn't have met newer codes for patient care use. And remodeling would have been too expensive.

But someday, perhaps hospitals will be planned to include such areas for families! Someday, it will be recognized that it's simply the right thing to do.

Take care. Linda Gromko, MD

Fistula First...or Second or Third!

2010-04-09T22:45:00.000-07:00

My husband Steve has been in the ICU now since 3/5/2010. He's had an angioplasty, then a major open heart surgery to replace his severely stenotic aortic valve and bypass four coronary vessels. He was so unstable that his chest was left open -- to be closed in a second surgery five days later. I had never even heard of this before! We are so grateful he survived.

Steve's dialysis fistula in his forearm "went down" on the day of his surgery. His cardiac ejection fraction was only fifteen percent (normal is at least over 50 percent), so peripheral blood flow was sluggish. The fistula clotted -- and Steve's condition was so precarious that he required twenty-four-hour-a-day dialysis via an Internal Jugular central line.

Even though Steve has had two prior central lines for Home Hemodialysis, we know that a central line is an infection waiting to happen! They say it's not a matter of if there will be an infection, but rather, when!

(We have been very fortunate with Steve's central lines in the past -- even using them for many months without infections.)

But this time feels more critical. In Steve's already weakened state, we cannot risk a line infection. So, the current plan is to place a new dialysis fistula this coming week. We know it will take weeks to mature to the point where it's usable for dialysis.

All this brings me back to the point of the slogun "Fistula First!" In the best of circumstances, a person with End Stage Renal Failure starts Hemodialysis via a mature fistula, surgically created weeks to months in advance. This is why patients are referred to a vascular surgeon as their renal function nears the point of dialysis (as reflected by the eGFR- or estimated glomerular filtration rate). In general, dialysis would begin with an eGFR of 10, or 15 in a diabetic.

Back in September of 2007, Steve's initial presentation with acute-on-chronic renal failure was so rapid, he didn't have the luxury of getting a fistula placed ahead of time. Even then, he couldn't seem to catch a break. But, even then, he landed on his feet. We're counting on continued strength from this extraordinarily resilient man.

Take care. Linda Gromko, MD

I Celebrate Doctors' Day!

2010-03-31T08:14:00.000-07:00

Yesterday, twenty days after the lengthy surgery to replace his aortic valve and to perform a quadruple bypass, Steve got off the ventilator!

Steve, the Respiratory Therapist, prepared Steve, the patient, by saying:

"On the count of three, I want you to cough and spit. Ready? One, two, three, and OUT!"

And out came the endotracheal tube. Steve was off the vent. And little by little, he settled into the comfort of breathing on his own: his respiratory rate slowing while his oxygen saturation levels stayed at 100%.

About an hour later, Dr. Teply, the Heart Surgeon who spent nearly thirteen meticulous hours taking down the scar tissue from Steve's previous heart surgery, stopped in on his rounds. His face reflected the joy and relief we all felt.

"I am so grateful for the work you did, Dr. Teply. And for the courage you had to even do this surgery."

Dr. Teply smiled in an "Aw shucks" kind of way. "I'm glad we could help," he said. Dr. Tupper, the electrical engineer-turned-Anesthesiologist, also stopped by, acknowledging with a broad smile, "You made us work, Mr. Williams."

But it was really nothing short of a miracle. It was an amazing composite of medical/surgical artistry and skill. And we are so thankful.

Even Steve, his voice sounding like a baby frog, was able to squeak, "Thank you, Doctor" to Dr. Teply and "Appreciate it" to Dr. Tupper -- the two doctors whose marathon efforts had truly saved his life that long night.

Later in the evening, I stopped by the Doctors' Lounge on the way out of the hospital. A partly eaten chocolate cake was decorated with "Happy Doctors' Day." I never gave Doctors' Day any thought...until yesterday. The day I received the best possible gift from physicians of extraordinary skill.

Take care. Linda Gromko, MD

Rehab vs Skilled Nursing Facility: Could it Matter?

2010-03-26T06:47:00.000-07:00

My husband, Steve Williams, is now a little over two weeks out from his twelve hour open heart surgery to replace his aortic valve and to perform a four-vessel bypass.

He's still on a ventilator, though he is making steady progress. Thankfully, his mind is present. This was confirmed when I asked him two days ago, "Are you a Democrat?" -- to which Steve noddded vigorously. He also nodded enthusiastic approval at the passage of the Health Care Reform Bill.

So, being the planner that I am, I asked his team about the next step. After he gets off the ventilator and goes to the regular telemetry unit, will he qualify for Rehab?

The Discharge Planner informed me that you must be physically able to do three or four hours of active physical and occupational therapy per day to be accepted into the Rehab Unit. Weak as a kitten at the moment, this goal admittedly seems distant.

"So, if he goes to a Skilled Nursing Facility, where will he get his dialysis?" I asked.

"If he goes to Rehab, he will get his dialysis at the hospital. If he goes to a Skilled Nursing Facility, he'll be transported to the Kidney Center and get his treatments there," I was told.

"We've been doing Home Hemodialysis for the last two-and-a-half years," I said. "This man went through a twelve hour surgery to save his heart. I'm not about to see him lose his emotional/spiritual heart -- and get colonized with MRSA! Let's make Rehab our goal."

The kind Discharge Planner said she'd make a note of my preference.

"It's not simply a preference; it's what is best for this patient."

The issues are complicated; the struggle is great. Steve has the strength to get throrugh, and we thank the many people who are pulling hard for his recovery.

Take care. Linda Gromko, MD

Moving from "Crisis Energy" to "Sustained Energy"

2010-03-19T17:13:00.000-07:00

When Steve became acutely ill a couple of weeks ago and requirerd open heart surgery to replace his aortic valve and bypass four of his coronary arteries, we all operated in "Crisis Mode." He was in perilous straights and something had to done urgently -- so that he would live.

Now that the surgery has been completed, Steve -- and all of us -- switch into the longer-term "Sustained Energy" mode.

It's the difference between a sprint and a marathon. Both are important -- but at the right times.

Now, for example, we are focusing on the following:

1. How can we support Steve's rehabilitation in the best ways possible? Clearly, he must recover from a major surgery; but he still needs dialysis on a regular basis.

2. How can we prevent new problems, such as skin breakdown, pneumonia, or infections in his central IV lines?

3. While he isn't alert now, we see that he is moving in that direction. How can we re-orient him to the events he's experienced, even in absentia?

4. Nutrition changes, as he moves from TPN (Total Perenteral Nutrition through his central IV line) to "formla" through a naso-gastric tube, later to return to real food. If anything, his nutritional requirements will increase with the demands of wound healing.

5. Deconditioning is a very real risk; we rapidly lose muscle tone -- and even bone mass -- with prolonged immobility. (As a nursing student, I remember reading an article entitled "The Dangers of Going To Bed." I'm sure in my early twenties, I had different dangers in mind!) So Physical Therapy enters into the mix tomorrow. Later, Steve will transition back to Cardiac Rehab.

As an Emergency Room physician many years ago, one of the most valuable lessons I learned was that there are really very few true emergencies.

Certainly, true emergencies include things like airway obstruction, profound hypotension (low blood pressure), hemorrhage, anaphylactic shock, potentially lethal heart rhythm disturbances, and my personal favorite: "Baby coming NOW!"

But for most other matters, you do have a moment to think, to organize, to Google up information you need, or to call someone who's smarter than you are!

For Steve, this period of re-equilibration: moving from Crisis to Sustained Energy comes as an enormous relief.

Take care. Linda Gromko, MD

A Family Doctor in the ICU

2010-03-14T13:20:00.000-07:00

As a Family Doctor, my would is much less high-tech than the world of the Intensivist! (That said, I'd invite any of Steve's doctors to spend a week in my world: moving from pelvic exams, to hypertension, to diabetes, to diaphragm fittings, to newborn exams, to assisting with the intricate processes of gender transition, to obesity management, to substance abuse intervention, to migraines, to skin biopsies, to depression...well, you get the idea! What we may lack in depth, we certainly make up for in the breadth of our specialty!)

In Intensive Care Medicine -- as in all medicine -- there's an urgent need to pan back and see the "big picture." A myopic specialist who sees his/her own specialty area in a vacuum would be inneffectual and even dangerous.

But journey with me now through Steve's ICU/CCU room. Surroundng him (highly sedated and essentially immobile - on purpose) we have the following:

1. The ventilator, which breathes for him
2. The CRRT Machine, providing twenty-four hour a day dialysis - resulting in his personal best creatinine of 1.2! We are joking that Steve could be a donor with such numbers! The advantage of CRRT, of course, is that it allows for small volumes of fluid extraction on an ongoing basis -- like healthy kidneys.
3. The bank of IV medications with their respective pumps: at one point, he was on eleven different meds.
4. TPN - to feed him through his central line while he is unable to eat.
5. An impressive monitoring panel which monitors his heart rate and rhythm, BP, arterial blood pressure, pulmonary artery pressure, respiratory rate, oxygen saturation, end-tidal CO2, cardiac output and cardiac index numbers.
6. Lines and drains:

three different central lines going into internal jugular vein
Naso-gastric tube
Endo-tracheal tube for ventilator
Chest tube to drain blood and secretions from chest cavity
Radial artery IV
Compression stockings with intermittent inflation to prevent clots in legs

(And the Intra-Aortic Balloon pump was removed yesterday, with Steve remaining stable.)

And what about nursing care? I have never seen better, more carefully performed ICU nursing than I have witnessed this week at Swedish Medical Center/Cherry Hill. This is not "following orders nursing;" this is minute-by-minute critical decision making. These outstanding nurses watch Steve for every nuance in lab values, vital signs, and any minute perturbation in his overall condition...and they respond instantly with appropriate medication adjustments and notification of other health care team members who intervene also.

It is all pretty impressive. In health care, we need everybody: primary care providers AND intensivists. It's very interesting to get such a detailed look at the other side of the spectrum. Of course, I wish it weren't in the context of my husband. But since it is, I am enormously grateful for the exceptional work being done on his behalf.

Take care. Linda Gromko, MD

Steve Gets Continuous Renal Replacement Therapy in the CCU -- the Ultimate in Extended Dialysis

2010-03-11T14:56:00.000-08:00

Steve is in the Coronary Care Unit, recovering from an Aortic Valve Replacement and a Four-Vessel Coronary Artery Bypass Graft (AVR and CABG).

I found it interesting that he has been placed on Continuous Renal Replacement Therapy (CRRT). This means he will be dialyzed twenty-four hours a day; he currently is running at a pump speed of 150 cc/ min and taking off only 100 cc per hour.

This must be the ultimate in Extended Dialysis: prescribed for patients who are medically fragile and cannot handle wide volume swings.

Nobody here seems to find this therapy "exotic." Why, then, is there a controversy regarding the benefits of frequent slower and gentler extended hemodialysis in the "healthy" ESRD population?

Is this yet another example of the scarcity of common sense?

Take care. Linda Gromko, MD

Steve is Getting a New Aortic Valve...This Minute!

2010-03-10T16:17:00.000-08:00

I'm writing as my husband Steve Williams is in the Operating Room at Swedish Medical Center/Cherry Hill. He's getting a new aortic valve and a coronary artery bypass graft. We expect the surgery will take eight hours!

Here's the story:

Steve had a coronary artery stent placed in November He had been progressing well in Cardiac Rehab. Then, over the last week or so, he began having angina (chest pain) at the close of each dialysis run...during the rinse-back stage which returns an infusion of about 150 cc of blood back into the patient's circulation. Each episode was treatable by nitroglycerine, but it was definitely a new pattern. His cardiologist admitted him to the hospital. She took him to Cardiac Catheterization Laboratory and re-stented the vessel in question.. But his chest pain persisted unrelentingly at a level of eight out of ten.

Dr. Ali then placed an intra-aortic balloon pump into Steve's thoracic aorta by way of a catheter in the groin. The intent was to reduce the workload of the heart and to augment the filling of the coronary vessels. And Steve had decidely less pain. But an echocardiogram (sound wave picture of the heart) taken the next day showed that Steve's mildly narrowed aortic valve had worsened significantly. It was now categorized as Aortic Stenosis of a critical degree. It would have to be fixed. Either by a balloon valvuloplasty, which would be temporary, or by an open-heart aortic valve replacement. Steve and I were not enthusiastic about a temporizing measure.

The cardiac surgeon, in evaluating Steve's case, reiterated that the expected course of Aortic Stenosis is that of progression. But Steve had "accomplished" five years' worth of worsening in roughly five months!

The relationship between ESRD and ischemic heart disease, i.e. coronary artery blockages, is well known.

I think fewer people appreciate the relationship of ESRD and Aortic Stenosis - and the fact that the stenosis progresses more rapidly in ESRD patients.

So, this afternoon, with hundreds of blessings from friends and family, Steve is undergoing open-heart surgery. The atheist and agnostic prayers get extra credit.

So, how does Steve feel about all this? Well, "no other options" is a significant motivator!

Besides, to keep Steve on the Kidney Transplant Track, the valve replacement and bypass "update" would have been an absolute requirement.

Take care. Linda Gromko, MD

A Young Breast Cancer Survivor Talks About Discussing Chronic Conditions with Children

2010-03-09T11:20:00.000-08:00

The other day in my office, I met with a long-term patient of mine: a woman whose second child I'd delivered. Some time later -- when she was only about thirty-three, she received the diagnosis of breast cancer. Now, after a number of surgeries, chemotherapy, and radiation therapy, she is nearly six years post-diagnosis. She has become active in a group called "Young Survivors." While breast cancer is less common in younger women, it can be more aggressive.

Young Survivors have a unique perspective. We "expect" to confront health issues in midlife and beyond. But issues involving children take on a different intensity when the children involved are pre-schoolers rather than teens or young adults.

Here are some of the recommendations she and I discussed about talking with kids about ongoing health issues, and the points certainly apply to ESRD and dialysis.

1. Be honest.

2. Tell what you know in age-appropriate language.

3. It's okay not to know all the answers, but tell your kids you'll update them promptly when you do have information.

4. Don't let your kids learn critical information from other people: they don't know the real story.

5. Tell your kids: "Get your information from me. I will tell you what I know to be true." It's a good idea to designate an alternative source: "If you can't find me, ask Aunt Carole."

6. Acknowledge that it can be scary not to have all the information. You may be frightened, too.

7. Point out that every medical situation is different. "Cancer" is different in every patient.

8. Never underestimate the power of "snippets" of information -- a one-sentence factoid delivered on a car ride will be rememebered later and it can be the grounds for later discussion.

9. Remember that kids have a way of feeling responsible for things over which they have no control. They may make up explanations..."If I had cleaned up my room, you wouldn't be sick."

10. Expect a child to ask, "Are you going to die?" It's a fair question. Your answer, of course, depends on the specifics. It could be "I hope not," or "No, this is somethting we will have to go to the doctor from time to time to help us watch. But, I'm planning to be here for a long time." Etc.

Children and creative adults will make up information if they aren't included in the truth; their versions may be worse!

My sincere thanks to my young patient who uses her life experience in the most important way: helping others!

Take care. Linda Gromko, MD
PS - No HIPPA violation here; my patient was very willing to be represented in this blog.

Arrange2Live Comes to the International Dialysis Conference

2010-03-08T13:48:00.000-08:00

Jane McClure and I were delighted to present "Arranging Your Life When Dialysis Comes Home" yesterday afternoon at the International Dialysis Conference in Seattle. We focused on setting up a Home Dialysis Center that is safe and efficient--but also, one that integrates INTO the home without taking it over completely.

We also focused on Caregiver Issues. While I understand the more "politically correct" term is now "Care Partner," the issues remain: somebody in the family of the "Dialyzor" is heavily invested in making dialysis go better...in whatever form that takes.

And because this investment has the potential to detract from the Caregiver/partner's quality of life, we KNOW it's important to address!

Our conference participants seemed to agree, indicating "it's about time" that these isssues are formally--if perhaps bluntly--addressed!

Having delivered hundreds and hundreds of babies over the years, I've learned that we're better off telling our pregnant patients that labor is/can be painful....but that there are tools to help them make it through! And the results are worth it.

Same thing with Home Dialysis: there will be challenges, but there are solutions and plenty of people to help. And the results are well worth the effort in so many ways.

So let's begin by telling it like it is...our community will be better served, our ESRD folks with be healthier, and their relationships ARE more likely to thrive!

Take care. Linda Gromko, MD

Addendum: to those who have asked about my husband, Steve Williams: Steve has been in the hospital since Tuesday of last week. On Thursday, he had a Cardiac Catheterization to place a stent in a narrowed vessel.. Unfortunately, Steve's pain was refractory, and an Intra-aortic Balloon Pump was placed to help reduce the workload of his heart and to increase the filling of his coronary vessels, i.e. the vessels which feed the heart muscle. Now, we have a new challenge. Steve's aortic valve is reaching a critical degree of narrowing, and he will likely require a surgery sooner than later.

So, I did my Conference presentation with Jane, and took off immediately to return to the CCU. I didn't make contact with a lot of the folks I'd wanted to meet....but Steve's situation trumped even the 30th Annual International Dialysis Conference!

Evaluating Patients: Three Critical Questions

2010-02-25T19:00:00.000-08:00

I've been a Family Physician for twenty-three years, and worked as a Registered Nurse and Nurse Practitioner for years before that. I've been doing health care in some capacity for thirty-nine years, and that doesn't count my days as a teenaged Candy Striper!

So, like many others of my vintage, I've seen many, many patients over the years. I've done many evaluations and heard countless stories.

The trick in medicine, I believe, is knowing when to worry. Left to our own devices -- and the Internet -- we can worry about everything, and that's simply not practical!

So, when evaluating a patient situation, I've distilled my approach down to Three Critical Questions, and I've found these to be invaluable time after time. Here they are:

1. What is the worst condition this could possibly be?

I rule that one out, and work down the list from there. That's not always straightforward. After all, not all headaches are aneurysms and not all skin lesions are melanomas. So, given a specific set of symptoms, I try to define what is the worst possibility. Then, I try to find the most rational test to rule out the "worst case scenario," providing that the test does not present undue risk to the patient.

2. I often ask a patient: "Do you feel sick enough to be in the hospital?"

I have found that patients are excellent at self-triage -- in general. When a patient responds immediately with "Oh, of course not!" or "Absolutely not," I feel reassured. On the other had, if a patient says "I'm not certain," or "I have been wondering about that," I am ready to look further. A corollary to this, of course, is "Does the patient LOOK sick enough to be in the hospital?" We make these judgements from across the room sometimes! And with children, the key question is "Are they ACTING normally?"

3. The third, and most important question in medical decision-making is "What are the facts?"

Sometimes a patient and I will simply list the facts we know -- separating the worry out from the facts of the case. For example, a patient may complain of chest symptoms but be capable of doing an hour of high-speed cycling. Does that rule out the possibility of cardiovascular disease? No, but the fact that the patient has excellent exercise tolerance is greatly reassuring. The fact that a patient's work is not impacted by symptoms, the fact that a patient is not awakened by symptoms, the fact that a headache is easily relieved by a Tylenol tablet -- are all reassuring to me. And, of course, we have the facts of the objective data we gather, e.g. laboratory tests and medical imaging studies.

In medicine, there are no guarantees: it's medicine, not accounting!

But I've found great assistance in a quick review of my three critical questions: 1) What's the worst possible case?, 2) Does the patient judge himself to be sick, and 3) What are the facts? After all, a little logic never hurt. Common sense, we know, can be UNCOMMON in medicine!

Take care. Linda Gromko, MD

What is "Metabolic Syndrome" and Why Should we Care?

2010-02-20T10:14:00.000-08:00

Metabolic Syndrome is a collection of conditions that run together -- and increase a person's risk of having heart disease, stroke, and /or diabetes.

I think this is critical to review from time to time, because it certainly is a "theme" in my medical practice and probably in MOST medical practices.

While definitions vary, I've paraphrased the definition given by the American Heart Association and the National Heart. Lung, and Blood Institute below:

They define "Metabolic Syndrome" as having three of the following criteria:

Elevated waist circumference (men greater than or equal to 40" and women greater than or equal to 35"). This is also known as "visceral obesity." Do you remember the image of being an "apple" vs a "pear" in body shape? Better to be a pear.
Elevated triglyceride levels (fasting level over 150 mg/dL)
Low HDL cholesterol: under 40 mg/dL in men and under 50 mg/dL in women. (By the way, I use this memory tool to help patients remember good cholesterol and bad cholesterol: "H is for Healthy; L is for lethal! We want more HDL and less LDL.")
Elevated blood pressure, i.e. greater than or equal to 130/85
Fasting blood sugar of greater than or equal to 100 mg/dL.

Particularly if an ESRD patient developed renal failure as a result of hypertension or diabetes, there's a good chance they have not just three of these criteria -- but ALL of them!

The bad news with Metabolic Syndrome is that it predisposes a person to diabetes, heart disease, stroke, and certainly CKD (Chronic Kidney Disease).

But the very excellent news is that Metabolic Syndrome can be prevented or even reversed!* How? By doing the following:

Becoming physically active: start with walking and move on from there.
Controlling body weight: even a 5% loss reduces risk.
Treating high blood pressure -- often the above measures, i.e. exercise and weight loss, will be enough to lower BP.
Getting diabetes diagnosed and treated early, to limit the damage it can do to both large and small blood vessels in the body.
Diagnosing and managing cholesterol properly.

These recommendations, while simple in essence, are tough for people to actually do. Just as with alcohol or overweight, sometimes we have to "hit bottom," have a personal scare, or see a friend suffer irreversable consequences that worry us to the point of changing our own behavior.

But it's interesting that physical activity and weight management can often be pre-emptive or curative. In other words, these two measures can in turn help manage blood pressure, diabetes, and abnormal cholesterol.

So, start with moving your body. Remember: the best exercise for a person is the one they will do! If that's walking, perfect. And like the Nike ad says, "Just do it!"

Metabolic Syndrome is one of the greatest challenges our country faces; we're seeing it in children and adolescents in alarming numbers. But we're not powerless here; we can help improve our own health and the health of our next generation.

And like Steve says, "I'd be happy if we could prevent Metabolic Syndrome in even one person."

And he should know...he's "on the hose" (i.e. dialysis) because of potentially preventable conditions.

Take care. Linda Gromko, MD
*Note: I'm not implying that ESRD is reversable here, unfortunately.

Anniversary of a Failed Transplant

2010-02-17T19:47:00.000-08:00

Some time ago, I wrote about "Anniversary Phenomenon:" that vague sense of uneasiness that occurs on or about the anniversary of a significant event in our lives.

Today, Steve and I are profoundly aware of Anniversary Phenomenon. Last year, on February 18, Steve had a Living Donor Transplant, courtesy of his lovely niece Teresa. I remember doing what we thought was to be Steve's last Home Hemodialysis Treatment. I remember taking the ferry in the dark early morning to get to University Hospital. I remember the confident hope with which we signed the consent form. We were so excited; we were practically giddy.

After all, the odds of a successful transplant were extremely good--particulary with a healthy related living donor.

But, as we all know, there are no guarantees in medicine. Steve's blood pressure dropped to a systolic of 70 during the surgery; he had a run of bradycardia with a heart rate in the 30's. Ultimately, we were to learn that Steve had suffered a mild heart attack during the surgery.

Two more heart attacks and roughly five weeks later, Steve was still showing poor blood flow to the donor kidney. An interventional arteriogram was attempted. After that procedure, Steve began to bleed into his belly from the site of the disrupted anastomosis (connection). He went to surgery for the third time: this time for the explantation (removal) of the donor kidney.

There have been few nights in my life that have felt as bleak as that one. All of us - from Steve, to Teresa, to the Transplant Surgeons - were heartbroken.

For Steve, there was a protracted recovery: home with a "Wound Vac" packed into his open wound for a period of many weeks. It meant Home Dialysis through a central line again, as Steve's fistula had clotted off during his hypotensive episode. It meant a longer-than-expected absence from my medical practice; Steve was a heavy care post-op patient on Home Dialysis again. And it meant enormous financial sacrifice.

So, what happens next?

Next month, we are hopeful that Steve will pass his Nuclear Medicine heart study. But our optimism is cautious. He may need another stent; he could even require another CABG (Coronary Artery Bypass Graft.) .

But if he does pass the heart study, he'll be back in the ring again with other potential donors stepping up and many more hurdles to clear.

All I can say is this: Transplant is a modern miracle. But it doesn't always go as hoped. While we never expect to be the exception to the rule -- the one with the less fortunate outcome, it can happen.

My deepest respect goes to the man who says "For a kidney--with a fourteen year old daughter? I'd do it again in a minute!"

So, Anniversary Greetings to Steve and to Teresa. You are loved and treasured for your courage.

Take care. Linda Gromko, MD

Thanks to Frank at NxStage

2010-02-15T08:31:00.000-08:00

A fistula, for the non-iniated, is a vein that is surgically connected to an artery -- usually in the forearm. Because the arterial connection forces the vein to grow larger, it allows for the near-daily hook-up to a dialysis machine. One inserts "fistula needles," 15-guage spears that are so large you can actually see down the barrel of each little trochar.

There's no getting around it, a 15-guage needle is impressive no matter which end of the needle you're on!

Experts advocate "Fistula first!" This, I believe, represents the plea to plan ahead for your patient's End Stage Renal Faiilure so that a patient can start their Hemodialysis with a mature fistula. The options of grafts and central lines are more dangerous. Especially with the latter, I've heard, "it's not a question of if they will become infected; it's a question of when."

I suspect Steve has had more problems with his fistula access than the average person, but I certainly don't know that for sure. Maybe everyone really does have three surgeries and at least as many fistulagrams. And I understand that diabetics -- like Steve -- are more likely to have difficulties with their fistulas, as their blood vessels are more tenuous.

Nonetheless, we currently have the best access yet -- and for that I am grateful. Threading the last fistula felt more like threading an IV -- with a 15-guage needle.

Yesterday, as Steve and I were doing his treatment, I was able to puncture without any problems. But the machine was reading pressures that simply didn't make sense.

So I called the Technical Support person at NxStage with my questions. We weren't in any danger, and we weren't "calling from the State of Confusion," mind you. We just wanted to know if there might be something wrong with the machine or the disposable cartrige that contains the "guts" of the dialysis process.

We have talked to a number of Technical Support people over the last two years. And this guy Frank (Frank, I so apologize; I can't remember your last name. Emal me and I'll add it!) was a prince.

Here are some of the factors that made Frank's assistance so commendable:

He was cordial and polite.
He didn't make the automatic assumption that we had done something wrong!
He conveyed the attitude that troubleshooting was a challenge -- maybe even interesting, and that solving the problem would be a triumph for all of us.
He said, "If you have the time, I'd like to stay on the phone with you for a few minutes?" (If I have the time? Frank, come on over -- we're not going anywhere!)
He was a cheerleader: liberal with praise and encouragement.
He was a clear advocate for Home Hemodialysis.
Frank conveyed that he liked the work he was doing.
We ended the call with a sense of greater understanding of the process and more knowledge about the parameters of the machine -- good information to know.

Now, I want to be careful to point out that almost all of the Technical Support we've received has been very good. But, as in any healthcare experience, there's a range. And Frank got Honors.

It's always struck me that in healthcare, one of the most effective things a helper can do is to simply act polite! Fake it 'til you make it, I don't care. Just sound respectful.

So thanks to Frank for making our day better. We certainly ended our call feeling more clear and less isolated. And when you've hit a snag, every bit helps!

Take care. Linda Gromko, MD

Weight Loss May Require "Hitting Bottom"

2010-02-10T18:03:00.000-08:00

I was talking to one of my patients today about her impressive weight loss: 150 pounds in 13 months, now maintained for nearly three years.

How did she do it?

Through the time honored method of good nutrition, portion control, and a new commitment to physical exercise. She did employ a personal trainer, but now uses soccer and weight training as her mainstays.

We talked about readiness for weight loss. There came for her a time when she was simply ready to make the necessary changes. Readiness came on its own timetable. But when she "hit bottom," there was no going back!

I remember my own "hitting bottom" with obesity. Ten years ago, when I was nearly fifty pounds overweight, I tripped on a curb cut--falling with arms outstreached and landing on my knees. Nothing broke, thankfully. But the startling thing to me was that I was standing next to my tiny little Mother, then a mere eighty-two!

Had I landed on her, I would have broken her little body! It occurred to me then how mortified I would have been if I had to confess that my Mom had suffered a hip fracture because I crushed her!

That was my "Come to Jesus" moment!

I signed up for Weight Watchers...again. But this time, I added the critical component of physical exercise. I was astonished that I loved the exercise: working out at the gym, taking spinning classes, and my all-time favorite: rowing--in a 12" by 27' single shell at the Lake Washington Rowing Club.

My patient and I reviewed the important ingredients in our different programs:

Taking a realistic view of what has to be done
Understanding why we are doing a weight loss program: that might be health reasons, it might be fitting in an airplane seat without an extension, it might be the horror of nearly falling on an osteoporotic mother who surely would have been injured on impact!
Supporting ourselves with excellent self-care measures
Recognizing that an injury or other circumstance that necessitates a "detour" also requires a mental reset: It's not back to the old way anymore!
An understanding that there are a thousand helpful tricks to keep us on track.
Excercise is a non-negotiable requirement.

As a doctor, I've seen far too many people lose 30-40 pounds for a prom dress -- only to gain it back if exercise isn't in the mix.
Let's face it, we're not doing this for a prom dress anymore!

So congratulations to my wonderful patient; she'll receive lifelong rewards as she sidesteps the diabetes that runs in her family. What a great example for us all.

Take care. Linda Gromko, MD

Jane McClure and Linda Gromko to present at The International Dialysis Conference in Seattle March 6-9, 2010

2010-02-10T08:18:00.000-08:00

The University of Missouri presents the International Dialysis Conference March 6-9, 2010, in Seattle. According to conference organizers, 1900 participants have registered to attend the various sessions covering all aspects of Dialysis.

Jane McClure and I are scheduled to present our session on "Arranging Your Life When Dialysis Comes Home" on Sunday, March 7. We will cover:

Examining the impact of Home Dialysis on a couple/family
Planning your Home Dialysis Space for comfort, efficiency, and safety
Drawing on Designer expertise to create a space that feels like home -- rather than an ICU room
Finding storage solutions for dialysis supplies
Supporting the ever-important Caregiver by recognizing and preventing Caregiver Burnout.

Jane McClure and I co-authored the book, "Arranging Your Life When Dialysis Comes Home: 'The Underwear Factor.'" Our book is available through our website at http://www.arrange2live.org/, and on Amazon.com in both paperback and Kindle editions.

What we have to offer may not be rocket science. We don't pretend to compete with the "hard science" to be presented in some of the other sessions.

But, we would offer that anything that makes Home Dialysis more user-friendly -- more approachable for patients and families -- represents an important contribution to the Dialysis Community.

We invite Conference participants to join us for some practical solutions for your Home Dialysis challenges.
Hope to see you at the Conference.

Take care. Linda Gromko, MD

Caregiver Burnout Series: Part Four: Supporting the Caregiver

2010-02-05T08:09:00.000-08:00

Burnout and the "Giant Breast Syndrome:"

Every mother who has ever nursed a baby knows that to make breastfeeding work, you need two components:

Nourishment: food and fluid to make milk, and
Plenty of sucking to stimulate milk production!

Most mothers who are faced with Burnout understand the breastfeeding analogy immediately: we seem to get plenty of "sucking," but few of us get enough nourishment. Translated further, we all have so many demands on us that we may feel we don't have enough nipples! What we lack is the kind of nourishment required to make more milk. And in this case, "nourishment" goes beyond food and fluids.

Another metaphor is to envision your life energy as fluid contained in a bucket -- but, a bucket with a hole in it! You have to keep filling your bucket, or it will soon be empty!

Enough metaphors? Let's get down to business and talk about what we need. You may find some of these tips discussed further as Caregiver Tips elsewhere in this blog.

1.    Move your body; exercise.
2.    Use the "HALT" acronym from AA.
          Don't get too HUNGRY, ANGRY, LONELY, or TIRED!
3.    Eat small meals regularly.
4.    Sleep.
5.    Take little breaks often.
6.    Seek humor!
7.    Listen to music that you like.
8.    Find "creature comforts," e.g. massage.
9.   Buy inexpensive treats that say "hang in!"
10. Read or knit.
11.  Have a good cry.
12. Steer clear of people who sap your energy.
13. Avoid alcohol and other recreational drugs.
14. Give back to the community somehow.
15. Attend "Kidney Events."
16. Learn any prayer that speaks to you.
       Examples: the AA Serenity Prayer, and "The Four Agreements."
17. Accept help from others.

A few more thoughts to consider:

In order to ask for help from others, you must know what you need!
I recommend an exercise I call the "Minimum Daily Requirements." What ARE your daily requirements for exercise, food, touch, intellectual stimulation, etc.? You are far more likely to get what you need if you know what it IS that you need.

Remember: It could be worse!
Every single day in my medical practice, I see examples of people whose lives are worse than ours -- much worse. In the early days of Steve's kidney failure, we used to say, "At least it's not the burn unit." It was our shorthand way of acknowledging that we have much to be thankful for.

Negative feelings about your partner are normal -- to a point!
Many Caregivers do have negative feelings about their partners from time to time. I know that there have been times when I didn't even LIKE Steve! Now, did that interfere with the quality of his Home Dialysis? No, but we had to agree not to bicker during treatments; it made him feel too vulnerable. Talk to a counselor if you find that negative feelings are beginning to dominate your thinking. You need a safety net; don't take your frustrations out on your partner with that fifteen guage needle!

The Caregiver role is critical to successful Home Dialysis. Yet, Caregivers need care, too. Often, we are so caught up in the seemingly more critical needs of our partner, that we don't get our own needs met. Unless, of course, we make a conscious effort to do so.

Caregivers, take good care of yourselves. You'll be more effective as a helper if there's something left for you.

Take care. Linda Gromko, MD

Caregiver Burnout Series: Part Three: Treating Depression

2010-02-04T15:36:00.000-08:00

In this Blog Series, we've discussed the role and requirements of the Caregiver, and signs and symptoms of Caregiver Burnout. We've noted that burnout and depression have important similarities, the latter usually being more severe and prolonged -- and not responding as easily to breaks and self-care measures.

Today, we will focus on depression and how it can be treated. This is an enormous topic, and cannot be adequately covered in a blog post! But, hopefully, this "Depression in a Nutshell" post will give the reader a brief overview, and a place to start if this is an issue for you.

Depression is characterized by a "down" mood, and other symptoms including low energy, irritability, loss of interest in usual pleasures, a sense of hopelessless, sleep disturbances, involuntary weight change, excessive worry and/or guilt. Depression generally lasts for at least two weeks, and may be accompanied by thoughts of suicide.

So what do you do if you think you may be depressed?

First of all, get some help. Your Primary Care Provider, i.e. family doctor or nurse practitioner, the Social Worker at your Kidney Center are good places to start. Naturally, your local E.R. or Crisis Clinic are appropriate if you feel you may be in danger of self-harm.

Years ago, there was a study that took a group of people with depression and divided them into four subgroups (I do not have the reference for this). The groups received treatment as follows:

1..    Exercise
2.     "Talk Therapy"
3.     Antidepressant Medications
4.     No therapy, i.e. "Control Group"

The important observation was this: the people in each of the first three groups improved; the "Control Group" which received no treatment did not improve.

Let's look at each approach:

Exercise:
You don't have to be a jock to appreciate that simple exercise -- even a short walk -- helps us to feel better. And regular exercise, done several times a week or even daily, is even more powerful. We feel stronger, we work off stress, we feel more capable of dealing with life's challenges. Which exercise is best? In my opinion, the best exercise is the exercise a person will do!

Talk Therapy:
If you've never been to therapy, you might want to give it a try. Think of it this way: appproximately one hour per week, a trained and compassionate person focuses on you and your concerns. A psychiatrist friend of mine used to say, "It's the heathy people who go to therapy!" I'm convinced that he was correct. Remember, we aren't talking about years of psychoanalysis here. We're talking about short term cognitive therapy, lasting a few weeks to months.

Antidepressants:
We have many antidepressant medications from which to choose, and their risks and side effects have been greatly reduced over the years. That said, it may take a few tries to find the proper antidepressant -- or combination of medictions -- for a particular person. I tell my patientts,

"Antidepressants don't change the facts of your life. But they can change the way you respond."

Here's a good tip: if a close relative of yours is using a specific antidepressant and has had a particularly positive or negative response, tell your Health Care Provider. This information may be useful in selecting the right medication for you. Another important consideration: antidepressants can take two to four weeks to "kick in." So, don't wait until you're at the end of your rope. Get help soon if you see depressive symptoms lingering on.

My favorite approach to depression for patients in my practice? The triple combination of physical exercise, cognitive therapy, and antidepressants!

Depression can be frightening and unpredictable; it feels awful to be depressed. For Caregivers, depression may make us concentrate less effectively and make more errors. Keep in mind also that a severe depression may require hospitalization; this is where we need professional help to sort this out.

What else can you do to help yourself?

1.     Avoid alcohol and other recreational drugs. This is critical, as alcohol is actually works as a depressant! Experts claim that it takes only four drinks per week for a woman and six drinks per week for a man to cancel out the effect of an Antidepressant!

2.     Keep yourself safe. Be attentive to your driving and other activities which place you at risk. Pay attention to your prescription medications; take them correctly and do not combine with alcohol. Remove articles from your home which place you at added risk (e.g. firearms). If you feel you cannot guarantee your own safety, tell someone! Go to the ER or call the Crisis Clinic.

3.     Focus on self-care. Tomorrow's blog will focus on the many Self-Care Tricks that help us nuture ourselves. Please join me tomorrow and examine many of the ways we can help ourselves.

Take care. Linda Gromko, MD

Caregiver Burnout Series: Part Two: What is the Difference Between Burnout and Depression?

2010-02-03T21:45:00.000-08:00

In yesterday's post, we noted that the symptoms of Caregiver Burnout are almost identical to the symptoms of depression. So how do you know if you're depressed or if you're experiencing Burnout?

Burnout usually responds to a healthy dose of self-care, and continuing to do the things that help.

Depression -- on the other hand -- lingers on for two or more weeks, not responding as easily to self-care measures and more often linked with serious symptoms like suicidal thinking.

When trying to figure this out with patients in my medical practice, I often ask something like this:
"If we could just give you a week off and a gift certificate to your favorite store, would it make things better?" (As if we could do this!)

For the person who is depressed, a temporary break and a gift certificate would be nice, but it wouldn't really solve anything. But for a person who is experiencing Burnout, a break can make a significant difference -- particularly if a break and some serious self-care are part of an ongoing effort in that direction.

It is critical to get some help if you think you are depressed, or if you simply don't know. Your Primary Care Provider, a Counselor, or the Social Worker at your Kidney Center are great resources.

Important Warning: If you are feeling so down that you are thinking about suicide, you MUST get help! If you can't see your Primary Care Provider immediately, call the Crisis Clinic or go to the nearest Emergency Room for an Evaluation.

Things can get better, but only if you're breathing!

Tomorrow's blog post offers Part Three in this series on Caregiver Burnout: Treating Depression.
Take care. Linda Gromko, MD

Caregiver Burnout Series: Part One: Recognizing the Signs of Burnout

2010-02-02T21:32:00.000-08:00

The Caregiver is essential to the smooth operation of Home Dialysis. Because the role of the Caregiver is so important -- and because Caregivers can sometimes feel isolated or "lost in the shuffle" of seemingly larger issues, I am starting a four-part post on Caregiver Burnout. The main themes are as follows:

Part One:         Recognizing Signs of Burnout
Part Two:        How is Burnout Different from Depression?
Part Three:     Treating Depression
Part Four:       Supporting the Caregiver

Recognizing Signs of Burnout

The Caregiver in Home Dialysis may experience a variety of emotions. He/she may be reeling from the diagnosis of the partner's illness, with all the uncertainty that entails. There are more demands on the Caregiver's time. Family responsibilities may be unevenly divided, and the day-to-day responsibilities don't stop, even in the face of ESRD!

The Caregiver may find himself/herself consumed with financial worries. The partner's ESRD may have resulted in major changes in a family's income. And anyone who has tried to untangle the intricacies of insurance or medicare knows how difficult that can be.

The Caregiver may grieve for simpler times gone by. There's a loss of spontaneity in day-to-day life. A Caregiver may grieve for the life he or she had imagined; surely it didn't include ESRD!

It's natural for Caregivers to have frustrations and bad days. But sometimes, it goes beyond that, and the Caregiver is at risk for Burnout.

Burnout feels like you can't possibly continue for another day -- you're too worn down and bone tired. This can be uncomfortable and dangerous for the patient and the Caregiver. Our own health can suffer and we make more mistakes.

Be on the lookout for these warning signs:

1.     Fatigue
2.     Irritability
3.     Persistent crying
4.     Inattention to usual grooming
5.     Avoidance of exercise
6.     Inattention to the Caregiver's own health
7.     Poor concentration; difficulty reading
8.     Low energy level
9.     Sleep disturbances
10.   Weight gain or loss without trying
11.   Loss of interest in usual activities
12.   Decreased libido
13.   The sense that nothing will ever get better
14.   Helplessness and/or hopelessness
15.   Excessive worry
15.   Feelings of guilt
16.   Hypervigilence.

These symptoms are important to watch for. If you see these symptoms lingering in yourself, get some help from your Primary Care Health Professional or your Kidney Center Social Worker.

If you've noticed that these symptoms of Burnout resemble the symptoms of Depression, you're correct.

Tomorrow, we will look at "What is the Difference Between Burnout and Depression?"

Hopefully, by knowing what to watch for in ourselves and in others, we can nip problems in the bud before they become major problems.
Take care. Linda Gromko, MD

The Continuum of Dialyzor Activity in Home Hemodialysis

2010-02-02T10:57:00.000-08:00

Dori Schatell of Home Dialysis Central and I were e-mailing about the range of dialyzor activity in Home Hemodialysis and Home Dialysis Training. We noted that the span ranges from 0 to 100 percent activity on the part of the dialyzor.

Take Bill Peckham, for instance. He does his own fistula needle insertions, and handles the entire set-up and treatment without assistance from anyone.

But then, there's my husband Steve. He's probably closer to the other extreme. He's not at what he and I call the "Do-Me" method of Hemodialysis, but he's close. Steve takes his vital signs and weight, calculates the amount of fluid he wants removed, tears tape, and helps me troubleshoot problems.

Why? Well, Steve probably has more "co-morbidities," other conditions that impact his health and treatment. In his case, these include severe peripheral neuropathy, deconditioning after his long recovery from last year's kidney transplant and explantation, labile (unpredictable or variable) diabetes, fistula problems which have required several surgeries to arrive at our currently great access, labile hypertension, and angina!

Is Steve "involved" in his own Home Hemodialysis? Of course he is. Even though he's not up to doing the whole treatment for himself, he most assuredly is involved.

It reminds me of the story Steve tells about ham and eggs:

Q: What's the difference between ham and eggs?

A: The chicken is invested, but the pig is committed!

No matter the details of dialysis Steve performs! He's alert, involved, and 100% committed. And he's at the "sharp end of the needle!"

Every Home Hemodialysis patient and partner has to work out what's practical and possible for them. I think the more involvement, the better. Home Dialysis gives us the opportunity to work within the limitations of our own situations, and make the best of what we have.

Take care. Linda Gromko, MD

Caregiver Tip #9: Surround yourself with supportive people, and stay away from people who sap your energy!

2010-02-01T18:49:00.000-08:00

If you are a Caregiver for a Home Dialysis Partner -- or a Caregiver in any other capacity, you know you have many demands on your time and energy. Steve and I have been fortunate to have had many people provide support and assistance in a variety of ways.

But as a physician, I've talked to people for years about the experiences they've had as patients and as Caregivers.

Here are some "pet peeves" I've heard over the years, and/or experienced myself:

Describing your situation -- whatever the experience -- to someone, only to hear a litany of their own horror stories in return.
Well-wishers who imply that something is wrong with the care the patient is receiving. (Example: "So the transplant didn't work. Did the doctors do something wrong?" My answer: "No, it was a complicated situation.")
Sympathizers who encourage lawsuits! ("So, you're suing them, right?" My answer: "No, we're not, and go away!")
People who say: "I understand your situation completely. I know exactly how you feel."

Be aware! Anyone who says "I understand completely" probably doesn't. If they did, they wouldn't say it!

I truly believe that some helpful things to say include:

"I have no idea what that must be like."
"I've never experienced that. I have gone through some difficult experiences, but this sounds rugged."
-- or better yet -- "What is this experience like for you?"

The person who "gets it" doesn't say, "Call me if there's EVER anything I can do." They understand that a requirement to orchestrate ANYTHING is yet another demand on your time.

The people who "get it" listen. They allow you to vent. They give you Starbucks cards. They know they don't have to fix it -- because if you could have fixed it yourself, you would have done it already.

Isn't compassion interesting? I believe that people have good intentions for the most part. But as a Caregiver, you need all the support you can get. So, seek out the people who "fill up your bucket," and make less time for those who make you feel worse.

Take care. Linda Gromko, MD

Why does "Arranging Your Life When Dialysis Comes Home" Matter?

2010-01-28T10:10:00.000-08:00

Last night, Jane McClure and I presented our first Webinar through Home Dialysis Central (http://www.homedialysiscentral.org/). We were delighted at the response of folks in the group, and we will be doing another presentation on "Supporting the Caregiver and Preventing Caregiver Burnout" sometime in the future.

But it struck me that President Obama was delivering his State of the Union Address at the same time -- so he missed our Webinar(!). And, of course, it takes only a cursory glance at the news to be reminded of the devastation in Haiti to realize that our problems pale in comparison.

So why does our project, i.e. helping people design their Home Dialysis Centers for maximal function, efficiency, and comfort, even matter? It comes down to this:

We have the opportunity to take control of the things over which we have some control, to make our own little microcosm better -- to improve the quality of our lives and those of our loved ones.

Does that minimize the importance of what's happening around us, or happening more globally? Not at all.

But maximizing our own functioning helps us to be more effective in whatever we do....whether that's being a dialysis assistant, a physician, you name it.

After all, good design is not a "frill." It's based in optimizing function, minimizing stress, and living a better life. We serve best when we are grounded ourselves. "Arranging Your Life" helps us to be more grounded and therefore, we hope, more effective in our lives.

Take care. Linda Gromko, MD

Webinar Details: Sign Up for Tonight's Free Program

2010-01-27T10:16:00.000-08:00

Jane McClure says that she and I sound a bit like "the Click and Clack of Functional Design!"

Jane is referencing NPR's Car Talk Program, of course: wisdom and experience delivered with humor. She and I have written a guide to setting up your own Home Dialysis Center -- with lots of practical tips for those who are just starting out, or those who have been dialyzing for years.

So join us this evening as Home Dialysis Central hosts us in:

"Arranging Your Life When Dialysis Comes Home."

To participate live, register at:
www.instantpresenter.com/PIID=EC50DE8487

Or view us later at http://www.homedialysiscentral.org/.

Take care. Linda Gromko, MD

Smoking Cessation: A Donor Benefit

2010-01-26T10:56:00.000-08:00

As Steve nears the possibility of another kidney transplant, we are reminded of the requirement that living donors cannot smoke -- or at least, they have to stop smoking for a couple of months prior to the transplant.

I am biased, of course. I dearly hope that Steve will have another transplant opportunity, and I hope this transplant will be successful.

But what does the donor gain?

I expect that there is a sense of personal satisfaction in having really stepped up to meet a need. Not in a "lip service" kind of way, but in the way that helps like nothing else can.

I have been impressed that potential donors have been able to quit smoking in preparation for the transplant. No small achievement. After all, it's easier to help people withdraw from heroin than tobacco.

When I delivered babies, I was amazed at how many women stopped smoking -- for the health of their babies. Many of these women hadn't been able to stop for themselves, but they could do it for their baby. Interesting commentary!

As a Family Physician, I have come to recognize that smoking is one of the most destructive health habits we fight. (I am learning that physical inactivity, i.e. the lack of exercise, is another.)

If a kidney donor continues to abstain from smoking after the transplant is completed, this represents an enormous gift to the donor with respect to the donor's later health and longevity!

Thank you to all donors and potential donors. If you can get an additional pay-off from your extreme gift of kindness, so much the better.

Take care. Linda Gromko, MD

Jane McClure and I are presenting a Free Webinar on January 27...

2010-01-24T13:56:00.000-08:00

Home Dialysis Central is hosting my colleague Jane McClure and me for a Webinar, to be presented Wednesday, January 27 at 6:00 p.m. Pacific Time.

Our topic: "Arranging Your Life When Dialysis Comes Home"

Jane, an Interior Designer, and I will be discussing the problem of learning the elegant technology of Home Dialysis, and then coming home to the arrival of sixty boxes of dialysate solution! How can we plan our dialysis space so that our homes don't look like an ICU? How can we keep our bedrooms feeling like places of respite and intimacy, rather than a "high tech sick room?"

Please check out our article on Home Dialysis Central: http://www.homedialysiscentral.org/.

What's a Webinar? (I asked...)

A Webinar is an on-line presentation, presented in real time with live speakers. The cool thing is that listeners can sign on, be active participants, ask questions, and make their own comments and additions to the program!.Register using the address at the bottom of this page.

We hope to bring you some interesting ideas, whether you are brand new to Home Dialysis -- or you've been doing it for years! After all, Designers just "think differently" than the rest of us.

You'll find more ideas and practical suggestions -- as well as critical information about supporting the caregiver and pre-empting caregiver burnout in our book, "Arranging Your Life When Dialysis Comes Home: 'The Underwear Factor.'"

Our book is available in paperback for $15.00 through our website, http://www.arrange2live.org/, or my website: http://www.lindagromkomd.com/.
It's also carried in paperback and on Kindle through http://www.amazon.com/.

The direct link for Wednesday's Webinar is:
www.instantpresenter.com/PIID=EC50DE8487
Register now....it's free!

Take care. Linda Gromko, MD

Caregiver Tip #8: Listen to the Music

2010-01-22T19:32:00.000-08:00

Music is a very personal thing. It can calm our soul; it can jangle our nerves. Music brings us back to a different time or place; it makes us feel younger...again. It makes us want to dance. A specific song or CD becomes our personal soundtrack for a challenging time. Music can bring messagaes of encouragement and support.

Steve and I were given a wonderful gift last year when a friend of ours "gave" Steve a song. Bob Bost, a Seattle graphics designer and prolific songwriter, had written a song he thought might be appreciated by cancer patients. Then, after talking with us about the preparations we were making for Steve's kidney transplant, Bob realized that the song was really "intended" for Steve.

Bob's song, professionally recorded by vocalist Larry Murante with his voice reminiscent of Gordon Lightfoot, and hauntingly beautiful violin and guitar backup, was entitled "Fight the Good Fight."

The lyrics spoke of a man struggling with an illness, fighting to get out of the hospital bed and back onto his own path. The chorus:

        "I'll fight the good fight everyday,
       I'll win this battle; I'll find a way.
       And I believe, when tomorrow comes
      I'll hear my heart beating like a drum."

How do you verbally describe a song that made many of Steve's adult male friends break down in tears?

Bob's song had that quality, musically breaking through the barriers that keep us formal, that allow us to maintain "our distance.".

Bob's lyrics were more apropo than we'd dreamed; during and after his transplant, Steve had three heart attacks. So, awakening and hearing his heart "beating like a drum" was a critical theme.

During this time, I also received a CD with Cindi Lauper's beautiful work, "Time After Time." You know the lyrics:

      "If you fall, I will catch you.
      I will be waiting...
       Time after time."

While caring so acutely for Steve after his transplant, I thought I was the one doing the "catching." Now, I generalize the meaning to the universal back-up we all have...if only we recognize it.

I remember the soothing quality of music when my father was in the hospital many years ago -- on a ventilator for three months with an acute gallstone-related pancreatitis. My sister and I brought musical tapes to play in his ICU room: calming Windham Hill selections. Many of the nurses and respiratory therapists lingered in my dad's room because of the music; it set a tone of comfort -- but also a tone of respect for this man dearly loved by a family and unable to speak for himself at the time.

We must seek out music that resonates with our minds and hearts -- whether it's rock, heavy metal, folk, the blues, R &;B, gospel, rap, or country western..

As caregivers, we need all the help we can get. Surround yourself with music that resonates with your heart. Consciously find lyrics that become the mantra for your challenge.

Take care. Linda Gromko, MD

Steve and I Celebrate our Wedding Anniversary

2010-01-20T08:34:00.000-08:00

In the midst of Home Hemodialysis, an unexpected illness of my 92-year-old Mom, my medical practice, and a host of other "stuff," Steve and I are pausing to celebrate out second wedding anniversary.

People we meet think we're an old couple. In reality, Steve and I met only five years ago, the result of my Match.com ad, "I'd like to meet a nice Democrat." That invited the rapid response, "Kerry delegate here!" We had a few nice dinners and movies out, we discovered that we had gone to the same junior high and high school (Queen Anne) with two years between us. We never knew eachother in high school, but we had many friends in common. His best friend's dad was my math teacher, and on and on.

Then, there was Brita -- Steve's full-strenth nine-year-old of whom he'd had full custody since Brita was only two! Brita wasn't ready to let anyone share her dad, least of all, some hussie from Seattle. I'll never forget the day when Brita stared me down, declaring vehemently, "I hate every centimeter of you -- get used to it!"

And THEN, there was End Stage Renal Failure, dropping suddenly into our world with its life-altering details. During our Home Dialysis Training at the Northwest Kidney Centers, Steve and I decided to make it official. Two years ago today, we pledged to love in sickness and in health. I remember our lovely little wedding at Alderbrook Resort on Hood Canal: Steve on Home Dialysis, my grown son Tim still finding himself, and a new daughter perched on the brink of adolescense.

But we've made it through two uncertain years, tackling each problem with courage and determination. So far, we're winning.

Would I do it again? For a man who knows me better than anyone on the planet, for a man who loves me unconditionally, for a daughter who is growing into a beautiful, articulate young woman?

Unconditionally, yes.

Happy Anniversary, Stephen. I love you.

Take care. Linda Gromko, MD

Happy 92nd Birthday, Mom....in the Hospital!

2010-01-19T23:18:00.000-08:00

We were all set to celebrate my Mom's 92nd birthday -- along with my nephew Mike's 27th birthday, his engagement, Steve and my wedding anniversary, and our friend Dick Hagen's birthday. In my family, we tend to group our celebrations together!

But this morning, my Mom phoned me, stating she was very dizzy. In fact, when she awoke four hours earlier, she was so lightheaded, she had to crawl to the bathroom. I was on the ferry when she called, on the way to Seattle for work. There were really no other symptoms. No vision disturbances, no numbness or weakness, no difficulty speaking or understanding speach, no headache, no recent illness. She was completely oriented and lucid. But she just didn't sound right to me.

When I arrived, she couldn't sit up without nearly toppling over. She begged me to just let her sleep, but we made a birthday 911 call instead. I was concerned about stroke; my dad's massive and fatal cerebellar stroke had started with the same symptoms.

In the E.R., her heart monitor showed a rapid atrial fibrillation, a heart rhythm disturbance which can be related to stroke. As far as anyone knew, she had not experienced this before. In the process of treating the rapid rate, my Mom's heart rate dropped from over 130 to the low 30's! But she continued to do reasonably well.

Her brain CT showed "nothing(!)," and her echocardiogram and her initial lab tests were normal.

Mom won an overnight admission on telemetry to monitor her heart rhythm, with my son Tim promising to break her out of the "joint" in the middle of the night.

When was my Mom last admitted to the hospital? Fifty-eight years ago, when she gave birth to me!

So, ninety-two years old with no hospital admissions other than obstetrical, and no major medical problems of any sort! She does take medication for high blood pressure and bone thinning. But that's it!

Good genes? You bet! But let's give credit where it's due. My Mom has these other positives in her corner:

She's a non-smoker
She drinks no alcohol
She's thin
She's an avid gardener
At ninety-two, when most people are DEAD, she lives on her own, and takes care of her home!
She eats five fruits and vegetables a day
She gets flu shots
She takes her regular medications
She appreciates humor, and has enormous wit and banter
When my Dad died many years ago, my folks had been married for fifty years!

Most importantly, Mom has a positive outlook. Even last night - before today's scare, Mom said, "I've had a great life: interesting times and good health."

So, Happy Birthday, Mom. I'm sorry we celebrated in the hospital, but how many people make it to ninety-two? What a triumph for a superb role model.

Take care. Linda Gromko, MD

Steve Graduates from Cardiac Rehab

2010-01-18T16:24:00.000-08:00

Congratulations, Steve, on the completion of the Swedish Medical Center Cardiac Rehab Program!

Starting from a weakened baseline following a complicated kidney transplant, explantation, return to dialysis, and a protracted recovery, Steve made it through another obstacle.

In cardiac rehab, Steve did both aerobic exercise and weight training -- all while being monitored by telemetry to catch any concerning heart rhythms. He progressed from the little Barbie-pink weights up to "Big Boy" weights. This, from a man who used to leg-press six hundred pounds!

But it's a great start. Now, with the confidence to continue, Steve will work out in a gym closer to home. And hopefully, if he can continue his current path, it will enhance the chances of a positive outcome with the next transplant.

There were probably about eight other folks is Steve's rehab class. The range of abilities ran from one man who executed the arm motions with no additional weight -- all the way to a well-muscled man who might have been fifty at best. This was a guy for whom some cardiac stent had probably come as a nuisance -- an interruption -- in an already active life.

But there was no question that everyone there had a story...lives complicated by heart disease, and lives which required reframing and regrouping after the heart disease became apparent.

People with End Stage Renal Disease have a high incidence of heart disease.

I read in the latest blog from the Renal Fellows Network that one study showed that over 80% of diabetics with ESRD had angiographically significant coronary disease, and over 50% of the non-diabetics with ESRD had it as well.

We believe that exercise - done prudently - enhances cardiovascular health in nearly all patients. Of course there are exceptions, but the ESRD population stands to gain from the many benefits of exercise.

So, good for you, Steve. We'll see you press that six hundred pounds yet!

Take care. Linda Gromko, MD

Caregiver Tip #7: Take something back!

2010-01-17T10:56:00.000-08:00

Steve, with End Stage Renal Failure for over two years now, has given up a lot because of his disease. The five-days-a-week Home Dialysis is a time sink. Don't get me wrong: we would make no other choice - except, of course, for a working transplant! Then, because of his February tranplant and its multiple complications, Steve hasn't been able to work. So, he's experienced a loss of income, a loss of people contact to the degree he'd like, and a bruising of his own self-identity.

Caregivers give up a lot, too. For example:

A loss of spontaneity in almost every aspect of your life
Time to do other things, like spending time with friends
Exercise that requires time away
The ability to travel for work or pleasure, without the coordination of dialysis
A partner who feels well enough to participate in life the way either of you would like.

One suggestion for both Caregiver and Dialysis Patient is to find something - anything - that Renal Failure has taken away--and make a valiant effort to reclaim it.

Before Steve developed ESRD, I was an avid exerciser. At my maximum, I was rowing (single shell on actual water) at least two or three times a week, spinning tthree times a week, plus a couple of sessions of "balls-to-the-wall" (sorry) strength training. And I loved it.

I didn't come by exercise natually.It was hard-won; the best outgrowth of a weight reduction program I did ten years ago. I discovered that the secret weapon for weight loss was strength training and aerobic exercise using big muscle groups.

If you've never taken a spinning class, this is a fitness bargain! Spinning is a group activity, with everyone on their own stationery bike which looks and feels like a road bike. This is NOT likely to be the old exercycle in the basement. The instructor takes you through drills which simulate climbs and sprints.

Done to music (my favorite was heavy metal!) you get lost in the rhythm and almost forget how hard you are working. When I started spinning, I was in the midst of a business lawsuit. Spinning allowed me to process the stress more effectively.

I used to joke, "Spinning converts homicidal energy into kinetic energy!"

Sadly, though, as Steve has required Home Dialysis -- and I've had to commute from Bainbridge Island to Seattle by ferry every workday -- much of my exercise bit the dust. Spinning and rowing went, because of logistics. I have rigidly maintained a twice-a-week strength training commitment..

But last Sunday - and today, I did a 90-minute 7 a.m.spinning class at the Bainbridge Athletic Club. Kevin, the no-nonsense instructor, set the initial cadence at 120 rpm, and we were off and moving for an hour-and-a half.

Muscle memory kicked in, and -- pardon the cliche, but it was "like riding a bike!"

For me, though, it represented much more. Again, I felt the "moral superiority" of just having done it(!). I felt my stresses dissipate. I felt more like myself.

Spinning gives me a glimpse of an earlier life - a life I liked better! But it reminds me that I haven't lost myself entirely.

So, Caregivers, here's our challenge. Find something you've given up on account of your partner's kidney failure and the increased demands that places on you. Find a way to take it back. You'll confirm that you're still yourself -- just more seasoned.

Take care. Linda Gromko, MD

PS - Here's the obligatory qualifier: it's always best to see your Health Care Provider before embarking on any exercise program. Start slowly, listen to your body. Don't exercise through warning symptoms like chest pain or tightness! Good trainers and instructors will help keep you safe, but only if you use your own good sense.

Preparing for the Next Transplant

2010-01-16T10:08:00.000-08:00

As an update, here's where we are on the transplant track:

Steve had a living donor transplant in 2/09, fraught with many complications and ultimately resulting in an "explantation" (removal of the transplanted kidney) at the end of March.
His recovery was protracted; the wound was allowed to close with the help of a WoundVac--an ingenious combination of black sponge, a sealed surface, and a suction machine all tucked into a wearable "man purse." The wound was vacuous; you could have hid a small housecat in its depth. And the healing process took months.
Steve's heart has also been an issue: starting with a bypass nine years ago, then three heart attacks during the transplant-related hospitalization, and another small one at Thanksgiving. He's had two stents placed in Ausugst, and an angioplasty at the Thanksgiving event.
He needs to be on blood thinners because of the stents and because of an elevated clotting factor, Factor VIII.
He continues on Home Dialysis five days a week.
His antibody titre is close to 100% - which will make a crossmatch challenging.

Now for the better news:

Steve has been working hard in cardiac rehab, and has actually gained fourteen pounds of lean body mass! Plus, he has no exertional symptoms.
His diabetes is under very tight control, with a hemoglobin AlC hovering under six since he "came to Jesus."
Living donor candidates are contacting the Swedish Medical Center Transplant Clinic to get tested. He needs a donor with type A or O blood: the more tested, the better.
If Steve passes his nuclear medicine stress test in March, he will be a candidate again.

Now, his best results will come from a living donor, because he'll have to switch blood thinners in anticipation of a surgery. But he has accrued over 400 days of waiting time "on the list."

A planned surgery, i.e. done "by the light of day" with a fresh anesthesiologist and transplant surgeon will give Steve the best odds of success. The control of all "controllable factors" is critical.

Will we get there? I'm guessing we will. Steve keeps making milestones, bit by bit.

Plus, I've never seen anyone with the ability to land on his feet -- peripheral neuropathy and all -- like Steve Williams. Resilience, while unmeasurable by clinical standards, is one of the most potent weapons any patient has for survival.

Take care. Linda Gromko, MD

Do others unintentionally trivialize dialysis?

2010-01-11T10:17:00.000-08:00

Since Steve was diagnosed with End Stage Renal Disease and started on dialysis over two years ago, we've made some interesting observations.

We've found that many people believe that dialysis simply "takes care of" the problem of ESRD -- as though dialysis just "made kidney failure go away." In fact, one of the medical terms used is "Renal Replacement Therapy," and the term refers to either dialysis or kidney transplant.

Dialysis does not replace kidney function! It's a stop-gap measure, replacing perhaps ten percent of the filtering function of the normal kidney.

And as dialysis patients know, it doesn't do anything to replace EPO, the hormone that stimulates the bone marrow to produce red cells. That's why kidney patients use medications like Aranesp, which has replaced the earlier need for multiple blood transfusions in kidney patients. Then, we have the phospate problem. Kidney patients must use binders such as calcium carbonate (TUMS) or Renagel to get rid of phosphate which builds up to produce awful symptoms such as intractible itching, not to mention calcification within the walls of blood vessels.

Kidney transplantation is truly the best treatment for replacing kidney function. Nothing trumps a functioning kidney! But transplants are not available or suitable for many patients. (Have you ever heard, "Oh, you can just get a transplant.")

The other curious thing we've encountered is the perception that dialysis is simply a matter of "pluggging Steve into the dialysis machine." Like turning on the Crockpot! Now, admittedly, we do call Steve's dialysis "being on the hose."

A friend of mine required stem cell harvesting for a stem cell transplant to treat his lymphoma - thankfully, it was successful. But the description of the harvest procedure, which is very similar to dialysis, was like an homage to the crucifixion! (And this is a guy who isn't given to drama!)

Steve believes that if most people experienced hemodialysis even ONCE, they would talk about it forever! I am sure he's right. Some of my patients talk about mammograms and colonoscopies with an air of violation. I guess it's all relative!

In any event, we have learned that:

Renal Replacement Therapy is sort of a misnomer when it refers to dialysis.
Nothing replaces a kidney!
Dialysis is not a trivial procedure; it's complicated - but manageable.

Why even discuss this? I think people trivialize many experiences. Like labor, for example. This trivialization backfires when the patient in labor suddenly realizes that there's more to it than she'd thought - or been led to believe! Then, the labor patient feels inadequate - like she can't manage and she's a failure.

There's a sense that since "everyone" has a baby, it must be easy. We all die, too, but that gets our attention!

So, I think a more helpful approach is just to see Renal Failure and Dialysis as what they are: difficult circumstances that would challenge anyone! If you find them challenging, you're right; but there is excellent assistance available.

Take care. Linda Gromko, MD

Caregiver Tip #6: Watch Inspirational Films

2010-01-10T09:54:00.000-08:00

Good self care involves surrounding yourself with enough positive, inspirational energy to help you keep going when things get rugged -- which they can from time to time.

Films are wonderful for providing that rapid infusion of inspiration. I'm starting a "Caregivers' Movie List" -- and I'd love to find as many titles as I can. My only requirement is that they speak to qualities of perseverence, resilience, and/or redemption of some sort.

Here are a few to start with:

The Shawshank Redemption
Gran Torino
Invictus
A Few Good Men
The Blind Side
Cider House Rules
Rocky
Million Dollar Baby
Good Will Hunting
The Right Stuff
Mr. Holland's Opus

You know what I mean: films that speak to our "larger" selves: films that help us realize that there are plenty of us going through struggles of all flavors. They just have to resonate, and help us come away with a greater appreciation of our own capacity to endure, to rise above our challenges..

Anyway, I'm adding to this list from time to time and would welcome ideas.
Take care. Linda Gromko, MD

Sign us up for the Next Cruise!

2010-01-09T13:43:00.000-08:00

Steve and I just reviewed Bill Peckham's pictures from the beach at Cozumel -- part of the NxStage "Freedom Cruise" to the Caribbean. As I commented to Bill's blog, I can feel my own blood pressure ooze down ever-so-gently, perusing the sun and sand. Who would think these opportunities would be available to folks on dialysis -- and their families?

Steve and I took a trip a couple of years ago to attend a fitness conference in San Diego. It was the annual IHRSA Convention: "International Health and Raquet Sports Association;" Steve has a long background in the fitness industry. Anyway, we "had" to be there for five days, and dialyzing in a San Diego center would have meant that Steve would have missed out on a large portion of the convention. And not dialyzing was, of course, not an option.

So we borrowed the aluminum travel case for the NxStage machine from the Northwest Kidney Centers and packed up the machine. That weighed about one-hundred pounds. Then we loaded up the rest of our gear in a duffle bag -- another eighty pounds, and arranged for the dialysate bags to be sent directly to the Marriott Hotel. Not bad.

We overpacked, of course, with equipment for a couple of extra runs. The only wrinkle we ran into was that we had brought only one waste line, and it wasn't long enough to reach the bathroom (nice, big room!). So we called Housekeeping for an extra trash can, I duct-taped the waste line to it, and made a "bucket brigade" process of emptying the effluent throughout the runs.

Steve wanted to sling the waste line over the Marriott balcony, whereupon our friend Don Gronachan commented that it wouldn't have been the first time Steve Williams peed off the balcony of a Marriott Hotel. Ahh, love...

Anyway, after reading Bill's posts, we're up for an Alaska cruise. If you do one, sign us up!

Take care. Linda Gromko, MD

"What Now?" Starting Home Dialysis Reminds me of Bringing a New Baby Home!

2010-01-07T23:06:00.000-08:00

Thirty-three years ago, I gave birth to my son, Tim. I remember holding Tim in my lap that monumental morning. He looked up at me with those enormous blue eyes, seeming to expect that I'd know what to do next. I was twenty-five, and this was before I went to medical school. But I did have a Master of Nursing degree, and I'd worked with many new mothers as an OB nurse. Plus, I'd taken all the Lamaze classes, and had read the "appropriate books." We had had a couple of baby showers, and had received every basic supply you could possibly need - plus a few cute little things that had no substantive function whatsoever.

But in taking baby Tim home, I experienced a learning curve as steep as any.I have ever tackled. Quite frankly, I was terrified! How would I tend to this baby human with infinite needs? How could those eighteen-year-old mothers look so calm?

At the time, there was a little book written for post-partum mothers that was aptly titled, "What Now?" And I still remember devouring that book, searching every page for guidance, foraging for a set of skills to conquer responsibilities I'd never imagined.

Bringing dialysis home is similar to bringing a new baby home...

When Steve and I brought our precious cargo home two years ago - in this case, the NxStage machine - we felt a bit overwhelmed, too. Certainly, we had been properly trained by a group of thorough and compassionate nurses. We had read all the materials. But it was still a lot to absorb.

Then, there were the storage issues: the sixty boxes of dialysate fluid delivered to our door would strain anyone's storage capacity. We were awkward; we lacked solutions. And we lacked confidence.

Nobody gave us a Home Dialysis shower(!)...

Now that we are "veterans," and our NxStage machine has had its second birthday, we think it's time to offer some important observations: Just as with bringing a new baby home, beginning Home Dialysis home brings big changes. Is it manageable? Absolutely. Is it worth it? Without question.

What changes might you expect?

You may experience a time of adjustment to the process
You find that you can experience problems (signaled by alarms during your runs) - and that you can troubleshoot them correctly
You may experience a shuffling of family roles, and this may re-adjust from time to time
You may find that some friends and family are more comfortable than others with dialysis; some will be completely okay and keep you company during the runs - and others may not
You may find that you have more demands on your time.

When Steve and I first started doing his Home Dialysis, we learned that there were few "outsiders" who even understood what dialysis is. We learned that even doctors and nurses rarely understood that hemodialysis could be done at home at all!

And, not surprisingly, we found that nobody understood the "ins and outs" of Home Dialysis more clearly than others who did Home Dialysis themselves.

So going back to the childbirth analogy, what's available to help people as they start Home Dialysis?

Certainly, there is excellent Home Training, such as the instruction we received at the Northwest Kidney Centers.
Designer Jane McClure and I have written a book "Arranging Your Life When Dialysis Comes Home: 'The Underwear Factor." This book helps you design and organize your Home Dialysis Space, and deals with the logistics of storage, travel, and caregiver burnout. (http://www.arrange2live.org/).
Blogs help. Check out Bill Peckham's site, "Dialysis from the Sharp End of the Needle." You'll find all sorts of blogs listed on the DSEN Blog Report; something will probably match what you are looking for!
Organizations and on-line support: check out Renal Support Network and Home Dialysis Central for fur further support.
"Kidney Events," such as those sponsored by the Renal Support Network or the Northwest Kidney Centers are useful as well.

Will we ever see "Dialysis Showers" where friends and family gather to provide some of the non-medical provisions that will make the process easier? Support groups or Home Dialysis "doulas?" Time will tell.

But if you know someone who is just beginning Home Dialysis, send them an e-mail greeting or give them a call. Better yet, send them a coffee or grocery giftcard with your support - and congratulations on their new skills. Every transition is easier with support from people who care.

Take care. Linda Gromko, MD

Caregiver Tip #5: Make "Daily Packs" for Home Dialysis

2010-01-06T08:33:00.000-08:00

When doing Home Dialysis - and my direct experience is in the area of Home Hemodialysis - organization is important, not only for smooth dialysis runs, but for your own sanity as well!

There are a number of supplies that you use and discard with every treatment. We find it very helpful to pre-assemble "Daily Packs" containing these items. I use a gallon-sized freezer bag with a zip top to hold the small supplies for a single run: 4x4s, iodine pads, alcohol pads, syringes, bandaids, mask, etc. With a list and proper instruction, other people -- theoretically, even kids -- can help assemble packs in advance. This way, I can simply grab a "Daily Pack," knowing that I have all the small supplies ready to go.

When traveling, I also assemble a "Weekly Pack:" tourniquet, Heparin, paper and plastic tapes in two sizes, and a few extra syringes.

Just like moms pack lunches ahead of time, assembling "Daily Packs" will save you steps and time. It's not rocket science, to be sure, but:

"A step saved is a step towards sanity...most importantly, your own!"

Take care. Linda Gromko, MD