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

Steve and Linda Make New Year's Resolutions

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

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

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

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

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

Steve asked me for my resolutions.

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

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

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

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

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

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

Merry Christmas!

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