Merry Christmas!

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...

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

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

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

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

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

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"

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...

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

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

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

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

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

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

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

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

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...

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(!)

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"

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!!

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!

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!

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

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!

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!

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

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!

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

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"

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

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!"

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!

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

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

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!

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!

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