Monday, November 30, 2009

Mrs. Lomax Remembers A'dree-Rose

Gloria Lomax, profiled on 11/17/09, remembers A'dree-Rose Hollinger:

"Hi Linda,

Thanks so much for alerting me to your blog about A'dree-Rose. She and her grandparents were training on the Aksys machine at the same time we were, so we got to know them a little. We were so impressed that she wanted to be her grandfather's helper and was at that time considering a career as a dialysis nurse. What a gift those four years were to her grandparents...and now to
others, like you, who receive her care at Cherry Hill.

I have been folllowing your very interesting blogs. Your Thanksgiving night was a tough one. Sounds like you and Steve made it through OK...and hopefully life at your home will be peaceful now. I like the confortable time in between crises. I hope your continuing neews is good news.


What a wonderful note, reflective of a supportive community! I, too, like the "comfortable time in between crises." Sometimes it assuredly feels like we're up to our ankles in alligators. It is gratifying to know there are supportive people out there who truly, truly understand.

Take care. Linda Gromko, MD

Saturday, November 28, 2009

Caregiver Profile: A'dree-Rose Hollinger, RN

Steve had a post-Thanksgiving detour: a baby heart attack requiring a balloon angioplasty. It occurred during our Thanksgiving night dialysis--a total of five nitroglycerine tablets in all, given over a period of several middle-of-the-night hours when boats don't sail from Bainbridge Island to Seattle! But there was no residual damage, and Steve will be back to his cardiac rehabilitation program this week.

If there was a bright spot in this unwelcome detour, it was the opportunity to meet an outstanding dialysis nurse at Swedish Medical Center/Cherry Hill. In the past, we've often had to expain to doctors and nurses alike that - yes, we do dialysis at home; yes - it's hemodialysis; and, no - it's not just because I'm a doctor - it's because we received excellent training at the Northwest Kidney Centers.

But A'dree-Rose Hollinger knew all about Home Hemodialysis. In fact, she'd been her Grandfather's Home Hemodialysis assistant for a period of four years beginning when she was only nineteen years old. She was a Seattle University nursing student at the time. Like Steve and I, A'dree-Rose and her Grandfather trained at the Northwest Kidney Centers' Home Training Unit.

When her Grandfather started receiving his treatments at home, A'dree-Rose would bring her nursing textbooks to study during the runs. All the while, her Grandma was busy baking cookies for A'dree-Rose "and for the dorm."

What a great win-win situation! A'dree Rose gave her Grandfather years of quality life with treatments at home rather than in-Center. And he gave his Granddaughter the opportunity and encouragement to learn a skill that takes considerable investment, particularly when you're only nineteen. Even her nursing instructors were skeptical, telling this young nursing student, "You can't do dialysis at home!"

A'dree-Rose told us that she'd won a scholarship that covered most of her RN training expenses at Seattle University. When she wrote her application letter, she wrote about her experience helping her Grandfather with Home Hemodialysis. She must have been a shoe-in! Now, she works as a dialysis nurse on staff at Swedish Medical Center.

Steve and I both treasured the opportunity to meet A'dree-Rose. She had a genuine kindness about her, and the kind of empathy for a dialysis family that could only come from a compatriot: a fellow in-the-trenches caregiver.

A'dree-Rose told us that her Grandpa has since passed away. But we couldn't help but think how proud he would be of this shining star. Compassion, kindness, and personal life experience -- the perfect combination in a dialysis nurse or any other health care provider!

Thank you, A'dree-Rose, for taking care of your Grandpa -- and for taking such good care of Steve.
Tale care. Linda Gromko, MD

Thursday, November 26, 2009

Medicare Letter--Remember the December 16 Deadline!

200 W. Mercer #104
Seattle, WA 98119

Centers for Medicare and Medicaid Services
Department of Health and Human Services, Attn: CMS-1418-P
PO Box 8010
Baltimore, MD 21244-8010

November 26, 2009

To whom it may concern:

I am a Board-Certified family physician, and I am deeply interested in End Stage Renal Disease for professional and personal reasons. My husband, Steve Williams, was diagnosed with ESRD just over two years ago, and we have been doing Home Hemodialysis since. There is no question that dialysis saved my husband's life, and we have eagerly embraced the technology of Home Dialysis.

I have recently learned about the new Medicare Bundling Plan proposed for activation in 2011. Like any proposal, the plan has its pros and cons. One of the good things about the proposed plan is that is continues to reimburse for dialysis services on a per treatment basis. This is important because to reimburse for dialysis treatments on a per month or per patient basis could incentivize giving fewer treatments. Currently, the in-Center standard is three treatments per week. Many patients--and one could argue--perhaps all patients could benefit from more frequent treatments. (My husband, for example, receives five treatments per week at home. The more frequent treatments reduce the wide fluid swings he'd otherwise experience--thus reducing his risk of another heart attack.) The new plan would allow for more than three treatments per week if needed.

One problem I see with the new proposal, however, is that it does not provide extra funding for the labor-intensive one-on-one training required to learn Home Dialysis. Training for Peritoneal Dialysis requires about one week. Home Hemodialysis training is longer, i.e. four to six weeks. And while the training is expensive, the cost ultimately equalizes out, with Home Dialysis costing slightly less to administer than in-Center treatments.

The real point, though, is this: Home Dialysis improves quality of life! There's less depression, fewer admissions to the hospital, and less exposure to infection. The new Medicare provisions do not account for these savings. But ask any physician, nephrologist, or anyone who is associated with ESRD. My wager is that they'd prefer Home Dialysis over in-Center treatments any day of the week.

I trust that issues of adequate coverage for laboratory testing, and the provision of oral medications such as phosphate binders will be worked out. I know your department is getting a great deal of input on these matters.

Thank you for your continued support for the care of End Stage Renal Disease.

Respectfully yours,

Linda Gromko, MD

Wednesday, November 25, 2009

Steve's Pumping Iron!

Well, all right! Steve Williams is in the house!

Steve had a kidney transplant in February of 2009, and had a heart attack during the surgery. Over the next six weeks, he had two more heart attacks and two more surgeries -- the last of which resulted in the heartbreaking removal of the living donor kidney so kindly given by niece Teresa. Steve was no stranger to heart disease. He had a CABG (coronary artery bypass graft - or "cabbage") ten years before, complicated by a life-threatening post-op infection. It has been a rugged road.

Steve has roots deeply imbedded in the fitness industry, having worked for several companies -- Cybex and Technogym being the most recognized. He was always a gym rat, leg pressing six hundred pounds back in the day! He told me his forearms were once as thick as tree trunks. I didn't know him then, but we have the photos to prove it. He was a formidable lifter in his younger days.

Anyway, over the last few weeks, Steve has been participating in a program of cardiac rehabilitation. I knew the minute we talked about it that "the worm had turned." Something was new and different about Steve. There was a sparkle in his eyes, and a new commitment to try again.

Now, monitored by the very same nurse who cared for him during that near-calamity CABG, Steve plods through upper and lower body aerobics -- sometimes stopping when angina squeezes in. He told me today that he's up to forty minutes of cardio at a session.

The program also involves strength training. Steve -- who comes from the land of deadlifts, bench presses, Sumo squats, "the heavy bag," preacher curls, and quad sets -- started with two pound dumbbells which, unfortunately, came only in Barbie pink. But little by little, he's progressed. Now, he's up to the six-pounders -- in a more fitting blue-gray.

I'm so proud of him. I've been strength training myself for the last ten years, and so appreciate the difference it makes in my overall quality of life. There is no end to the pride and anticipation I feel when I see that Steve Williams is back in the house! 

We've got reason to be hopeful, big guy. Keep it up!
Take care. Linda Gromko, MD 

Monday, November 23, 2009

Hypervigilence Saps the Caregiver's Energy

I've heard from a variety of caregivers that hypervigilence -- that constant monitoring of every move, every breath of your loved one -- is a common source of caregiver exhaustion.

I know people who care for their adult parents, listening in on the sounds of the parents' room with a Fisher Price baby intercom.

I, too, watch for every subtle change, every nuance in Steve's body language as I try to insulate him from the infirmities of End Stage Renal Disease and diabetic neuropathy. It's the diabetic neuropathy that renders his gait unpredictable, along with his widely labile blood pressure and the occasional profound hypoglycemia that can dull his response time or make him a bit "loopy." Yesterday, as we did a little food shopping and enjoyed the luxury of  an evening musical event (Uncle Bonsai on Bainbridge Island!), I physically caught Steve four times. Four falls averted!

For Steve, a fall could be disastrous. A fracture would delay any hope of a kidney transplant. But even a non-healing stubbed toe could lead to an amputation! 

The transplant window is narrow: you have to be healthy enough to be considered. And something that's seemingly inconsequential could ace him off the list for good. People die waiting for kidneys, and time is not our friend.

How do other caregivers cope with this worry, this unrelenting responsibility? You certainly can't just "hope for the best." A fall prevented is a crisis averted, so the vigilence does make a difference. How do you "glide above it all" or not let it get to you? Do you relax your standards, or have you found some mental coping tool?

I'd love to know the secret. Please let me -- and other caregivers -- in on this one.
Take care. Linda Gromko, MD

Sunday, November 22, 2009

It's All Relative

As a family doctor, I talk with people all the time about doing things they don't want to do, but that are ultimately good for their health.

Helping people quit smoking, for example, occupies a lot of my time. And it's a challenge. Smoking tobacco, after all, is the perfect designer drug. It stimulates, it relaxes, and it's lightening fast--flushing through the rich pulmonary vasculature in a heartbeat. There are a number of effective medicines that help people quit, but all-in-all, you have to do it yourself. One of my patients figured out that at seven dollars a day, she'd parlay that destructive habit into Puerto Vallarta in less than a year.

Of course, there are other habits that require consideration: lack of exercise, overweight, alcohol dependency. Nobody wants to change their habits! As a doctor, you can point out the benefits, but people have to come to their own conclusions to make changes happen.

Then, there's the colonoscopy: routine colon cancer screening which usually begins at age fifty. The procedure itself is painless; I watched my own procedure on the screen with no discomfort. The prep the evening before is inconvenient; I recommend a varied assortment of clear liquids and a good supply of reading material--you won't be going out that night. Over the years, I've learned it takes about three discussions to persuade people to get their colonoscopies done. So now, I start talking about it with people at age forty-seven!

I implore my patients to get their mammograms, and find the most recent preventative recommendations (starting mammograms at fifty) to be unthinkable. Most women don't welcome their mammograms, finding them either uncomfortable or inconvenient. But early detection means better, longer lives.

Controlling diabetes and high blood pressure --the two main causes of End Stage Renal Failure--requires vigilence on the part of patient and physician. No doubt Steve would have traded the inconvenience of  being more vigilent on the front end for the inconvenience he suffers now.

The other day, I was talking to one of my patients who is about to begin training for Peritoneal Dialysis, with overnight treatments done daily. And I'm sitting here writing as my husband snoozes during his Home Hemodialysis, imapacting our schedules nearly five hours a treatment, five days a week.

It's interesting to me as a physician and as a dialysis assistant how difficult it is to cajole people into doing the preventative medical procedures that really do help--often with inconvenience as the main objection. Relatively, these tasks seem pretty inconsequential when compared to dialysis.

I'd say Steve and I are heavily into "inconvenience." But there's no getting around it: he gets to live. And we're both so grateful for that.
Take care. Linda Gromko, MD

Wednesday, November 18, 2009

Don't Say it Unless You Mean It!

My husband, Steve, is waiting for a kidney (blood type A or O). He received a living donor transplant from his wonderful niece, Teresa Duffin, in February of 2009--but things didn't work out the way we had hoped. For a variety of reasons, the new kidney had to be removed. Steve went back on Home Dialysis, and back to waiting for another kidney. How long might he wait? We have no idea, but we do know that many patients die waiting for a transplant.

Steve has some more recovery to accomplish--including a stretch in Cardiac Rehabilitation, and clearance from his cardiologist before he can step into the ring again.

But here's the deal. Several people have been tested to be Steve's donor. Nobody has matched because of the presence of antibodies in Steve's blood (from the first transplant and from the multiple blood transfusions he received).

Several more individuals have earnestly told Steve that they would be tested--that they would give Steve a kidney, but then backed away for one reason or another. We understand that giving someone a kidney isn't like having your ears pierced. It's an enormous effort and gift. Moreover, it does place the donor at some risk, albeit comparatively small.

But please don't make the offer unless you're really willing to follow through. An offer is a lifeline to a patient waiting for a kidney, and to his/her family. The heartbreak of dashed hopes is far too much to bear.

Are you interested in being a donor for someone and need more information? Call the UW at (206)598-8197 or Swedish Medical Center at (206)386-6660.

Just don't tell the potential reipient you're willing to donate unless you are willing to complete the offer.There's too much pain out here already.
Take care. Linda Gromko, MD

Tuesday, November 17, 2009

Caregiver Profile: Mrs.Gloria Lomax

When Steve and I attended the Northwest Kidney Centers' Breakfast of Hope in May 2009, we had the pleasure of meeting Mrs.Gloria Lomax. We were told that she and her husband were in their eighties, and that Mrs. Lomax had been her husband's Dialysis Assistant for many years.

Actually, Mrs. Lomax is 79 (she looks easily 10-15 years younger!); her husband Ted is 83. They started on the Dialysis Road in October 2000 at the Mount Rainier Center until space opened up at the Cascade Kidney Center, 1 1/2 miles from their home. The couple trained for four weeks in July 2002, and started using the Braun machine for three treatments per week at home. They took a refresher course in 2003 to begin using the Aksys PHD (Personal Home Dialysis), and began dialyzing five times a week at home. When the Northwest Kidney Centers converted to NxStage machines, the couple went home with NxStage in February 2007.

Does she have any difficulty in setting up for the runs? Mrs. Lomax told me that her helpful granddaughter stops by almost every day after high school to hang the dialysate bags, but that otherwise, the couple manages on their own.

I asked Mrs. Lomax if she'd had any formal training as a health care worker which might have made it easier to adapt to Home Dialysis. She replied that she majored in Home Econonomics at the UW, and taught for 1 1/2 years before their first child arrived in 1955. Four more children came over the next ten years, and Mrs. Lomax was a full time homemaker. Between 1980-2000, she served as a volunteer in the area of refugee settlement, teaching English as a second language and helping with housing, job skills, transportation, and addressing other areas of need.

I asked Mrs. Lomax if the couple had had any "white knuckle" moments while doing Home Dialysis.

She wrote, "Yes, I have had two very frightening experiences when I had to call 911 while Ted was on his dialysis machine. In November 2006, he became very sick during dialysis and was almost unconscious when the medics arrived. They gave him oxygen, and waited while I got him off the machine with the help of the on-call Home Training nurse....I gave the phone to a fireman who passed on instructions to me (I needed both hands). Friends driving by saw the aid car and stopped. They were sent by God for comfort, support, and to help to clean up." Mr. Lomax spent a couple of nights at Swedish Hospital, with the cause of his symptoms undetermined.

In May 2007, Mr. Lomax had an apparent seizure while on dialysis. Mrs. Lomax was able to "get his blood back and (get him) off the machine while the medics administered oxygen." But, as she pointed out, "these were our two biggest crises in our seven-and-a-half years of home dialysis. Most weeks, things run very smoothly, but I don't hesitate to call the Training nurse if there is an alarm I can't resolve. I am always amazed that the one on call can picture the problem, calmly make suggestions that work, and stay with me on the phone until the machine is happy again. We feel supported and blessed on this adventurous journey."

I saw Mrs. Lomax again at the Renal Support Network Patient Lifestyle Meeting on October 17, when we shared our new book, "Arranging Your Life When Dialysis Comes Home: 'The Underwear Factor.'" Jane McClure and I had mentioned her story in our book, and she said she had never been called a 'heroine."

Well, I am here to say that this lovely, gracious woman is one of my true heroines. If she can do it, maybe I can too. Thank you, Mrs. Lomax, for your inspirational example of calm and grace. You are, in every respect, a stellar role model.
Take care. Linda Gromko, MD

Saturday, November 14, 2009

Caregiver Tip #1 - Know Your Personal Minimum Daily Requirements

Caring for someone with a chronic illness - like ESRD - can be exhausting. And everywhere, people give caregivers the lovingly-intended offer, "Let me know if I can do anything to help." I even had a physician offer to "step in" and do Steve's dialysis. How bizarre that sounded to us after the five week one-on-one training we received. Though we know the offer was extended in good faith, you don't just read an instruction sheet and wing it. There's much more to Home Dialysis than that!

So, where do we start when people gently advise us to "Take care of yourself?"

Few of us stop to consider exactly what it is we need. With my patients, I advise them to outline their "Minimum Daily Requirements." Just as with nutrition, we have "Minimum Daily Requirements" for:
  • Sleep
  • Comfort
  • Physical touch
  • Sex
  • Intellectual stimulation
  • Giving to others
  • Food
  • Exercise
  • Sunlight/exposure to the outdoors
  • Chocolate
  • Time/contact with friends
  • Tending to the business of bill-paying, home maintenance
  • Idle time
  • Personal maintenance, i.e. haircuts, grooming
  • Creative time
  • TV
  • Keeping informed, i.e. newspaper, NPR, etc.
  • Films, music, art.
You get the idea.  Formulate your own categories. I noticed Sleep was the first category I listed. I believe that we can define what it is that we need. And who better? The closer we get to hitting our Personal MDRs each day, the better we can take care - of ourselves.

Try the exercise. You're far more likely to get what you need if you know what it is that you do need.
Take care. Linda Gromko, MD

Thursday, November 12, 2009

What is Anniversary Phenomenon?

In medicine - and in psychiatry, specifically, - "Anniversary Phenomenon" is the term used to describe that sense of uneasiness, anxiety, or a "down" mood that people experience around the same time of year that something traumatic happened to them in the past.

Sometimes, when people are feeling depressed and can't nail down exactly why, I'll ask, "Is there anything significant that has happened to you at about this time of year?"

I'm surprised at how often people have that "Ah-Ha!" moment, linking instantly to the time of a prior grief or other difficult event.

Halloween, for example, can unconsciously trigger emotions of visceral vulnerability for me. I remember buying Steve boxer shorts with Halloween bats on them. He was in the hospital with his very acute descent into Renal Failure at the time, and daughter Brita and I trekked down to Old Navy to find the appropriate undergarments for him. Interesting how those Halloween bats have stuck in my mind: indelible reminders of a time of enormous change and uncertainty, even through the event was over two years ago.

No surprise, actually. I can still remember the way the winter sky looked from my father's ICU room when he was deathly ill and on a ventilator with a gallstone-related pancreatitis. And that was over twenty years ago!

So, if you find yourself caught in a blue mood without an obvious explanation, ask yourself about "Anniversary Phenomenon." Sometimes we register the world's seasonal and environmental cues in a way that trumps our conscious memory. But we know in our bones that something's not right!

I welcome your stories on the Anniversary Phenomenon.

Read more about Steve's story in "Complications: A Doctor's Love Story," available at It's R-rated for language--but it's real!
Take care. Linda Gromko, MD

Monday, November 9, 2009

Arranging Your Life When Dialysis Comes Home: The Underwear Factor

My husband Steve started Home Hemodialysis a little over two years ago. We welcomed the elegant technology, and the convenience of dialyzing on our schedule, not that of the Kidney Center. While we have had our ups and downs-mostly with fistula issues-there is no question that Steve favors home treatments over in-Center care.

As with many households, the equipment and supplies needed for Home Dialysis seemed to expand to fill every bit of available space. Our home was practically swallowed up by medical paraphernalia. Our bedroom looked like an ICU; our fourteen-year-old was skittish about bringing her friends around. It seemed that our lives had become totally defined by dialysis; our lives were tethered to illness.

In the process of trying to sell our home, Steve and I hired an expert in home "staging" to camouflage the dialysis equipment in preparation for our Open House. Interior Designer Jane McClure created new storage, screened away medical equipment while keeping it still conveniently at hand, and generally made the home look far more appealing.

Jane's simple and affordable room re-do brought us part of our lives back! She and I were so impressed by the effect of good design on a home consumed by medical care that we wrote a book on the subject:. "Arranging Your Life When Dialysis Comes Home: 'The Underwear Factor'" was released at the Renal Support Network Patient Lifestyle Meeting on October 17. It's a practical book, with plenty of tricks of the designer's trade--and nothing that will break the bank. Besides, we've included chapters devoted to the unsung hero of Home Dialysis: the caregiver. We discuss caregiver burnout, how to recognize it, and how to prevent it.

Why the "Underwear Factor?" Steve's nephrologist, Dr. Smiley Thakur, used to say that Home Dialysis gave you the comfort of dialyzing on your own time, on your own terms, and in the comfort of your underwear! Our book is available for $15.00 plus shipping and handling on our website,, and through

I'd like to know how Home Dialysis has changed your living space. Feel free to write in your comments and challenges; maybe we can stir up some answers.
Take care. Linda Gromko, MD

Saturday, November 7, 2009

Who Would Guess? Medicare Bundling Meeting was Interesting and Important

Any meeting dealing with Medicare payment methods would ordinarily be a root-canal equivalent for me: if not painful, at least as boring as watching paint dry!

But today, I attended the Northwest Kidney Centers' meeting on the new Medicare Bundling Plan proposed for activation in 2011. This payment system will impact the way dialysis services will be paid for by Medicare.  I learned at the meeting that, by law, all public input must be recorded and responded to; so our input can matter. The deadline for public input on the new system is December 16, 2009.

Bundling is not a new concept in health care reimbursement. But as new rules are established, it's important to ensure that costs are properly covered, cost savings are observed -- and, most importantly, that quality of patient care does not suffer! There are many components to the new plan, but I'll touch on only a couple of points today.

One of the good things about the proposed plan is that it continues to reimburse for dialysis services on a per treatment basis. This is important because to reimburse for dialysis treatments on a per month or per patient basis could disincentivize treatments. In other words, a Dialysis Center could theoretically profit by giving fewer total treatments! Currently, the in-Center standard is three tratments per week. Many patients -- and one could argue -- perhaps all patients benefit from more frequent treatments. (For example, my husband Steve gets five treatments per week at home. The more-frequent treatments reduce the wide fluid swings he'd otherwise experience -- thus reducing the workload on his heart and minimizing his risk of having a heart attack.) The new plan will allow for more than three treatments per week if justified.

One problem I see with the new proposal, however, is that it does not provide extra funding for the labor-intensive one-on-one training for Home Dialysis. Home training for Peritoneal Dialysis requires about a week. Home Hemodialysis training is longer, i.e. four to six weeks. And while the training is expensive, the cost ultimately equalizes out, with Home Dialysis costing slightly less to administer than in-Center treatments. The real point, though, is this: Home Dialysis improves quality of life! There's less depression, fewer admissions to the hospital, and less exposure to infection. The new Medicare provisions do not account for these savings. But ask any physician, nephrologist, or anyone else who is associated with "KidneyWorld." My wager is that they'd prefer Home Dialysis over in-Center treatments any day of the week.

Another very insightful concern brought up by one of the dialysis patients at the meeting was that the new proposal didn't allow for funding for innovations in therapy. The gentleman brought up the concept of the "wearable" artificial kidney. He also brought up the pioneering concept of  "growing" organs for transplant. Such ideas aren't considered in the new Medicare modifications; we hope the plan will feature some flexibility as these miracles materialize.

I'll be writing my letter to Medicare soon, and I'll share it on this blog. But, heads up! We do need to concern ourselves with this matter. Our opinions apparently do count. Who better to weigh in than the folks who are directly impacted?

For more info, go to the blog of my hero, Bill Peckham (nineteen years on dialysis): Comments to Medicare may be submitted online through the website of the Northwest Kidney Centers at

Take care. Linda Gromko, MD

Thursday, November 5, 2009

Steve and Linda go out on a DATE!

Well, maybe it was the fact that Steve's friends really leaned on him about those juice boxes(!).

But last night, Steve took me to "our" wonderful little Japanese retaurant--Shima's on Bainbridge Island. This is a little oasis of tranquility and aesthetics, tucked in an ever-so-tiny space and serving meticulously prepared traditional Japanese food. Steve used to travel frequently to Japan when he worked with Onkyo Electronics, and he claims that Shima's would be typical of the many small, perfectly detailed restaurants in Japan.

The point, here, is that we went out. On a non-dialysis night, we spent a lovely hour together reminding ourselves of why we got together in the first place: competative-level banter, humor, the comfort of simple familiarity and sweet companionship.Steve just looked better. It was a perfect break from the over-abundance of activity in our lives. And how we needed it!

The take-home message for caregivers, "Dialysis Families," or busy people in general is obvious. Maintain the relationship, Remind yourselves why you ever connected in the beginning--before "life happened.."

It only took an hour, plus the recognition that it was an important way to spend a sliver of time when time is so precious. We sometimes forget these simple things, but it's the simple things that protect our hearts.
Take care. Linda Gromko, MD

Wednesday, November 4, 2009

It's really not about the juice boxes...

A kind friend wrote in re: my caregiver frustration, generaously offering to run errands to lift our load a bit. Thank you for that.

But reflecting on the offer, it's clear to me that when things feel so out of control--with the big, unpredictable health problems Steve faces--we naturally latch on to the smaller issues we can conttrol.

In Steve's case, a small problem can become a near-disaster in short order. I've seen his blood sugar levels in the high forties, and his blood pressure in the 60/40 range. Left unchecked, these are the kind of numbers that can lead to a critical fall or even a loss of consciousness. It's always easier to correct these problems sooner-than-later. Particularly on Bainbridge Island where Seattle medical care is an airlift or ferry ride away.

The other point is my frustration with Steve's not taking control over issues he could control--with me batting in the clean-up spot!

But I get it: I can whine about the juice boxes. What we really need is a new kidney--type A or type O blood--a healthy kidney that will be compatible with Steve's blood and his post-transplant antibodies.

Don't get me wrong: I love this man beyond belief. I simply want him to side-step the landmines until our miracle occurs.
Take care. Linda Gromko, MD

Monday, November 2, 2009

Caregiver Frustration: The Gloves are OFF!

Another mother wrote to me about the frustrations she has experienced with her adult son's self-care in the area of diabetes and Home Dialysis. Oh, can I relate to this!

My husband, Steve, is the "poster child for Metabolic Syndrome." His diabetes was far out of control, with a HbAlC of ten (normal is less than six) when I first met him. His diabetes is in far better control now, with HbAlC values in the five-six range. But by the time he had his "come to Jesus epiphany," it was too late.

We knew his kidneys would eventually fail, but nothing could have prepared us for that precipitous crash when his creatinine went from four to ten in only two weeks. Steve's kidney disease, diabetes, high cholesterol, heart disease, and transplant failure should qualify me for extra Continuing Medical Education credits!

This morning when I left for work, Steve and I had just stabilized his blood pressure--from a low of 69/40! We were fortunate to have corrected the problem with oral fluids. But it's unnerving when you live on Bainbridge Island--a ferry (or airlift) away from Seattle!

It's even more upsetting when the juice boxes I'd begged him to purchase weren't there in the nightstand! He'd forgotten to buy them! And, believe me, I'd reminded him--to the point of disgust at my own nagging.

I know that Steve doesn't feel well. A friend whose husband dialyzed for nine years before his recent transplant said that her husband's best day was probably more difficult than our worst day. Maybe so. I don't have a clue what it feels like to actually have End Stage Renal Failure.

But I do get frustrated, for example, with things like this:
  • Steve forgets to buy juice boxes for emergency blood pressure and blood sugar regulation
  • Steve neglects to get a seasonal flu shot, and now--when they're harder to find, it becomes a major headache
  • Insulin needles get left on the bedside stand, not placed in the needle disposal container
  • Steve forgets to place his nitroglycerine tablets or phone next to the bed.
Should I just do these things for him? I do a lot for him already. And isn't that "enabling?"

In medical school, we learned a great slogun: "Never invest more in someone than they're willing to invest in themselves!" (I don't know the source.)

And while that slogun has helped me considerably in my work as a physician, it becomes harder to adapt for use at home. After all, if something does go terribly wrong for Steve, I, too, have consequences! If he is injured in a fall, for example, I will have to scramble to deal with the outcome, too.

So, Caregivers, how do we find that delicate balance of:
  • Being supportive without enabling?
  • Reminding without nagging?
  • Not giving up and just doing everything ourselves?
  • Taking care of our own hearts and souls so there's something left over?
  • Preserving an adult relationship with your spouse, and not feeling like you have yet one more child!
I would welcome any ideas--from "tips" to the profound. We're all in this together! Please write me with your thoughts, and I'll share our combined wisdom. Thank you and take care, Linda Gromko, MD




Sunday, November 1, 2009

A Rower Needs Help!

Last week, I received an email from the Lake Washington Rowing Club (I'm a member, though my recent rowing has been sparce due to commuting and my husband's Home Dialysis requirements.).

One of the rowers in our Club has been diagnosed with Acute Myelogenous Leukemia, and he needs a stem cell transplant.

In the "Kidney Community," we are well aware of kidney transplants. My husband, Steve, received a living donor kidney from his benevolent niece, Teresa Duffin. Because of a host of reasons, Steve's transplant didn't work, and he is eyeing his friends with type A or O blood to help him try again.

Stem cell and bone marrow transplants are needed for the treatment of leukemias, lymphomas, and multiple myeloma. Here's what I learned about the simple screening process for stem cell and bone marrow transplantation:
  • Go to your area Blood Bank for screening (In Seattle, access the Puget Sound Blood Center by calling 1-800-366-2831x1897, or log on to
  • You must be between the ages of 18 and 60 to donate.
  • You fill out a simple medical history questionnaire.
  • Then, you collect your own sample of cells from the buccal (pronounced "buckle") mucosa--the inside of your cheek. You simply swab four designated areas. No needles, and no pain!
  • Your sample is sent to a National Registry Laboratory, and you will be notified if your HLA (tissue) typing matches a patient awaiting a stem cell or bone marrow transplant.
  • Testing does not obligate you to go through with a donation.
  • There is no fee for testing or donating stem cells or bone marrow.
I hope it's obvious that I'm not encouraging Dialysis Patients to be tested! But in the world of renal failure, we have greater-than-average community awareness of the gifts of tissue or organ donation.

I hope others will join me in taking the twenty minutes it took to get screened and registered.

Maybe we can help the LWRC rower. Take care, Linda Gromko, MD