Saturday, December 3, 2011

Day of Remembrance Offers Poignant Support

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

Tuesday, November 8, 2011

Ceremony of Remembrance Set for Saturday, December 3, 2011

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

Friday, September 2, 2011

The Little Kidney Blog Hits 10,000 Pageviews!

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

Sunday, August 28, 2011

Journaling Reminds us Where We've Been

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

Journaling Reminds us of What We've Done, Where We've Been

Saturday, August 13, 2011

How Could a Caregiver Miss Dialysis?

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

Tuesday, July 5, 2011

Fourth of July Brings Grief Advice

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

Tuesday, June 28, 2011

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

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

Monday, June 6, 2011

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

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

Friday, May 27, 2011

Steve's "Medical Eulogy" for Memorial Day

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

Wednesday, May 18, 2011

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


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

Thursday, April 28, 2011

Thanks to our Firefighters and Paramedics

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

Saturday, April 23, 2011

Steve's Story

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

Sunday, April 17, 2011

Heroic Measures

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

Thursday, April 14, 2011

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

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

Sunday, April 10, 2011

Amputation Puns and Drug Delirium

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/

Thursday, April 7, 2011

Waiting for Steve's Amputation

"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

Thursday, March 24, 2011

Hypnotherapy Calms Steve's Breathing and Brings Better Sleep

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

Tuesday, March 22, 2011

Steve Gets a Hospital Tune-up

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

Saturday, March 19, 2011

Returning Home to Find Steve Sick Again

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

Tuesday, March 15, 2011

Going Out of Town Brings New Worries

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

Saturday, February 26, 2011

Physical Therapy is Teaching Steve "Bed Skills"

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

Thursday, February 10, 2011

Peritoneal Dialysis Brings Steve Some Benefits; Will They Last?

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

Saturday, February 5, 2011

The Kidney Community Celebrates the Life of Ted Lomax

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.

Sunday, January 30, 2011

What a Difference Quality Care Makes!

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

Tuesday, January 25, 2011

A Hospital "Holiday"

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

Sunday, January 23, 2011

Fluid Overload Scraps our Date and Brings Back Temporary Hemodialysis

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

Friday, January 21, 2011

Peritoneal Dialysis Begins With a Few Hitches

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

Sunday, January 9, 2011

Hemodialysis for the Last Time?

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