Linda Gromko, MD is a family physician whose husband, Steve Williams, received five Home Hemodialysis treatments per week beginning in 1/08. He switched to Home Peritoneal Dialysis in 1/11. Sadly, Steve died in April 2011 - one week after a leg amputation. Dr. Gromko's blog explores issues of treating Renal Failure at home, making the treatments more user-friendly, and supporting the all-important caregiver in the family on Home Dialysis.
In my last blog, I wrote about the benefits of having a Primary Care Provider--an Internist or a Family Practice Physician who keeps their eye on the bigger picture of our health. (Or a Nurse Practitioner or Physician's Assistant, of course.)
And Miriam wrote to ask if I had one myself......a great question! Yes, I do; he's also a Family Physician, who trained in my program a couple of years ahead of me. There's an old saying that the physician who treats himself has a fool for a patient.
But here's a question for all caregivers out there: Do you find that you put your own health on the back burner when faced with the larger issues of your partner's dialysis? What mom hasn't put off some health need of her own, observing a child's need instead?
On an airplane, they always recommend that parents place their own oxygen masks on themselves first before placing their kids' masks!
Why? Well, you're no help to anyone if you've passed out! And this is applicable to all of us.
I remember holding off on my own colonoscopy until I had stopped delivering babies. I was concerned that the "prep" the night before might interfere with managing patients in labor! (Now I would have been right about that one!) But my colonoscopy at age fifty-four (not the recommended fifty) did show pre-cancerous tubular adenomas: a common finding, to be sure. But those "bad boy" polyps are far better in a jar in the lab than in your body!
So, caregivers everywhere:
Make sure you have your own Primary Care Provider.
Keep up on your own medications.
Get your own flu shot.
Get your recommended health screenings done.
Keep your own body healthy through good nutrition and exercise.
Let's keep ourselves healthy--for ourselves--as well as for the people who depend on us.
Yesterday, Steve and I went to visit his new Primary Care Provider, Internist Therese Law, MD. His prior Primary Care Provider had left for a teaching position at the University of Washington--leaving a gap in his care. We were both very happy with the visit. Dr. Law was kind, highly professional, very knowledgeable, and - best of all - undaunted by Steve's medical history.
Steve's medical record is the size of a New York City telephone directory, and it's complicated. I've been saying for years that I should get Continuing Medical Education credits just for being his wife! (I have learned a tremendous amount of medicine just by being with him - more internal medicine and nephrology than I ever imagined. Plus, I learned how to run hemodialysis!)
So why, with a nephrologist, a cardiologist, an ophthalmologist, a hematologist, an orthopedist, a transplant nephrologist, a transplant surgeon all in Steve's camp, does he need a Primary Care Internist?
Allow me to climb onto my soapbox....
First of all, let's define what a Primary Care Provider is. Primary Care physicians who treat adults only are called "Internists," or "Internal Medicine" doctors. Family Practitioners - like me - are trained to care for people of all ages: from infants to the elderly. We are also trained to deliver babies, although I stopped delivering babies several years ago. Pediatricians, also Primary Care physicians, treat children from infants to adolescents.
Primary Care Providers are board certified after completing a three-year residency program after medical school. Specialist physicians are usually Internists who then go on for additional training in their particular area of expertise. Surgeons go through surgical residencies after medical school; they, too, may specialize after specialty training - or practice as general surgeons.
So, what does a Primary Care Provider have to offer?
I like the explanation that PCPs are experts in common health problems, who are trained to recognize more serious conditions, and refer patients for more involved treatment to our specialist colleagues.
PCPs are often a patient's initial diagnostician.
PCPs tend to be good "scanners," focusing on the "big picture" rather than a single area.
PCPs tend to offer "breadth" of knowledge, while specialists offer more "depth" of knowledge.
A good PCP can help you by being an effective "broker." (I can find you a specialist in hair loss for women, for example, or a transgender-friendly gastroenterologist in a heartbeat!)
PCPs can help coordinate a patient's care, and facilitate good communication between the different care providers.
PCPs sometimes serve as "translators" when our specialist colleagues leave questions unanswered.
A good PCP can be very helpful in facilitating behavioral change, i.e. smoking cessation, alcohol treatment, etc.
Your PCP is likely the advocate who keeps you on track with health screening: reminding you of mammograms, colonoscopies, DEXA scans, immunizations, and the like.
A PCP who knows you over a long period of time may know you better: making the PCP an excellent resource for problem solving, particularly for serious matters like end of life issues.
Does everyone need a Primary Care Provider?
In my opinion, yes! Am I biased? Absolutely! I've just seen so many examples where PCPs have added invaluable contributions to patients' overall health. I certainly don't have the expertise that Steve's specialists do, but few of them would likely feel comfortable in my practice either!
Remember, it can take titme to find the right doctor - or doctors - for you and your family. But it's well worth the effort.
Steve and I have always loved movies, and we try to go as often as we can to maintain that wonderful part of what felt to be a more normal life. Steve and friends Dick and Bob nearly dragged me to Avitar, but by the end of the film, I, too wanted striped skin and a tail.
But for sheer noble inspiration -- for those of us who cull out the best in the human condition while still asking "what happened to my life?" -- seek out Clint Eastwood's new film Invictus. It stars Morgan Freeman and Matt Damon, from two of my lifetime favorites, The Shawshank Redemption and Good Will Hunting, respectively.
Invictus chronicles Nelson Mandela's early administration and his triumph over decades in prison. Mandela's character, i.e. Freeman, identified a guiding poem, as a tool which "helped him get up" on days when he would have otherwise stayed down.
I looked up the original poem, written in 1875 by English poet William Ernest Henley. The text follows, and its message is spot on for anyone dealing with chronic illness. By the way, "Invictus" is Latin for "the Unconquered."
Invictus by William Ernest Henley
Out of the night that covers me
Black as the pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.
In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.
Beyond this place of wrath and tears
Looms but the horror of the Shade.
And yet the menace of the years
Finds and shall find me unafraid.
It matters not how strait the gait,
How charged with punishments the scroll.
I am the master of my fate:
I am the captain of my soul.
Steve and I -- and of course, everybody else -- deal with "the clutch of circumstance...the bludgeonings of chance." But we do our best to see ourselves as the captains of our souls.
Over the course of Steve's kidney failure and the complicated nightmares that followed, Steve and I have heard people say, "It couldn't get much worse than that."
Oh no. It could. And for a couple of our very good friends, it did.
Steve and Mary have been friends of my Steve for years. In fact, Mary's Steve met my Steve back in 1975 when Mary's Steve stopped into my Steve's hi-fi store. They've been fast friends ever since. Steve and Mary's kids: Brooke and Stuart were older than Brita, but all grew up on Bainbridge Island and knew eachother well.
One of my Steve's earliest recollections of young Stuart was when Stuart was three or four years old. My Sterve would call him "Stu." One evening, Stuart, dressed in a plaid bathrobe that resembled a smoking jacket and standing all of three feet tall, addressed Steve ever-so-politely.
"Actually, Mr. Williams," Stuart said. "I'd prefer it if you would call me Stuart."
My Steve was taken aback, but naturally honored Stuart's request.
I met Steve and Mary only several years ago when I first moved onto the Island. I remember doing Home Dialysis with Steve and Steve - two old friends chatting as the NxStage machine hummed along, remembering better times without a consideration for the dialysis machine, or the blood flowing through the tubing. You learn early on that not all friends are "Dialysis Friends!"
Last spring, my Steve and I were up watching the news when I heard my husband scream with a cry of visceral pain. A painful scream was worrisome because Steve was still recovering from a third surgery.
"What?" I asked.
"It's on the news: Stuart died of a fall at college!"
Our immediate emails and calls confirmed the worst. Stuart, bright with potential, athleticism, kindness, had died suddenly after an accidental fall. There was nothing else to say.
We know that Steve and Mary and Brooke will have a very different Christmas this year: the first holiday season without their boy.
My Steve and I both get it that NOTHING trumps the loss of a child - not kidney failure, not heart attacks, not surgical complications. Nothing. We have no doubt that Mary's Steve would trade places with my Steve in a heartbeat - if it could mean even another day with Stuart.
We think of Steve and Mary every day. Their loss reminds us,sadly, of how fortunate we are in spite of our current troubles. Nothing we have ever gone through comes close to their pain or sorrow. But they are surviving, bit by bit.
We remind ourselves during this holiday season that it could - oh so easily - get worse for any of us. And we remind ourselves of the fact that we are fortunate for the blessings we do have.
Hello and greetings to all. The following is as close as I'll get to that "Family Christmas Letter." We thank you for your support. It's been a busy year.
My medical practice, Queen Anne Medical Associates PLLC, deserves a Resilience Medal!
We started February with Steve's kidney transplant, which was complicated by three heart attacks, and two additional surgeries including the eventual removal of his living donor kidney. We will be forever humbled by the gift of Teresa Duffin: giving a kidney to Steve and saying with all sincerity that "I'd do it again if I could." Steve's recovery has been quite protracted, with five months on a "Wound Vac," an ingenious device used to assist in wound healing. He's doing well in Cardiac Rehab, though, and we are actively working on our next strategy. He continues, of course, on hemodialysis; we are thankful that we are able to do these treatments at home!
The same week that Steve received his transplant, our wonderful Nurse Practitioner Terri was stricken with a particularly virulent pneumonia, landing her in the ICU. For weeks, we really weren't sure who would survive: Steve or Terri. And what a contrast: Terri, the healthiest and most physically fit woman I've ever known - and Steve, plagued for years with health challenges. What a relief that they both made it through; we expect Terri back at the practice after flu season.
But that wasn't all. Barb, our Office Manager and my "Right Hand Person", broke her leg. Brian, our exceptional Medical Assistant, fractured a bone in his face in a ski accident and required surgery. Around that same time, Snow - one of our other excellent Medical Assistants and Marathon runner, fell and broke teeth! Two of our Nurse Practitioners experienced the death of a parent. And another Nurse Practitioner's husband had a coronary stent placed!
With Terri's absence and with my longer-than-expected time away from the practice, we barely made it through the year. We were beginning to feel we were "The Story of Job Medical Practice!" But we did make it. I am enormously grateful to our staff of ten wonderful, good-hearted co-workers. It is clear to me that we made it through because of the staff we have!
And every single day, we are reminded why we are there. In this time of so much uncertainty, we are fortunate to have work, period. But we are especially fortunate to have work where we truly have the capacity to make a difference in peoples' lives.
Today, for example, I saw five kids I delivered, and another woman I've followed for over twenty-two years: delivering her daughter's two babies - and generally following along in the rich story of her life. I saw another patient whose breast cancer was found many years ago. She made it through, with greater resilience than ever. We ended the day with an excited young patient who begins on the journey of gender transition in another week or so.
Our practice is richly textured in human experience. We have been honored to have been present, and - we hope - to have been of service to our clients.And it has been gratifying to see how many of my patients care - truly care - about Steve. One had her blood drawn today, to learn her blood type to see if she might be a potential kidney transplant donor! Can you imagine?
On a personal note, our kids: Tim and Brita (thirty-three and fourteen, respectively) are moving through their lives with humor and goodwill. Steve and I love them both - and like them, too! For my part, I've been writing, commuting, exercising less than I'd like - but still at it.
So, it's been a high mileage year. We are all hoping for a smoother, "medically boring" 2010. But we celebrate our resilience, and understanding of our human condition, and the love and commitment that join us.
Best wishes for the Holiday Season and a Healthier New Year.
Take care. Linda Gromko, MD
One of the most useful tips I know for caregivers is to develop and maintain physical strength. We know that it takes considerable physical strength to be a caregiver--whether it's hoisting those five-liter dialysate bags onto an IV pole overhead, balancing your partner with an unsteady gait, or simply doing more of the work of a household because your partner can't.
Strength training (weight lifting, resistance training, etc.) is one of the most effective ways to get strong and to stay strong. We naturally lose muscle mass in our thirties, and continue to lose it as we age. So If we don't build muscle--and defend the muscle we have, we will assuredly weaken.
When we're strong, we can do more things, and do them more easily. We protect ourselves from injuries by strengthening our bones and joints. Probably as important, though, is the fact that we just feel more capable when we can do more tasks without help. We "age" better!
But how does the busy caregiver find time?
I go to a great little gym in Seattle called the "X-Gym" on Vine Street. The workouts last only about twenty to thirty minutes twice a week, but the concentrated sessions really do work you out. Plus, for me, it's a pretty sure guarantee that if it's on my calendar and I've paid the money, I'm going to go. Left to my own devices, compliance could be an issue!
There are a number of DVD and Video Strength Training Programs you can do at home. And almost everything--with the exception of high level power lifting--can be accomplished with a set of dumbbells and/or resistance bands. A fitness ball (look on e-Bay) can be a great addition in the area of core strength.
Strength training is just one more way that we tell ourselves that "we're in our corner!"
Plus, I think physical strength enhances our emotional sturdiness as well!
So, get yourself to the YMCA/YWCA, buy a DVD, or arrange a few sessions with a personal trainer who can help you get strong without hurting yourself. Start slowly with small weights and work up. Listen to your body's signals. And, of course, don't exercise if you are having chest pain or other worrisome symptoms.
In the gym world, they call weight training "pumping iron." So unless you have compelling medical reasons not to, add a little "iron" to your regimen, and see how greater strength improves your life.
Over the weekend, Steve and I had the opportunity to attend the Snowball party hosted by the Ingersoll Gender Center. Ingersoll is Seattle's well-known and longstanding organization which provides support to the Transgendered Community. As a family doctor, I have been serving this unique community for over a decade.
Getting together for this holiday party is always special. People come in various stages of their gender transition--and you just know that the procerss brings enormous challenges for all of those involved. Yet, we witness some elegant transitions--with people doing better in virtually all aspects of their life once mind and body are synchronous. It is a courageous group. You never know what burdens people carry.
An inspirational quote was shared, as it always is by organization founder Marsha Botzer. The quote, from the organization's namesake Robert Ingersoll, is this:
"The time to be happy is now. The place to be happy is here. The way to be happy is to make others so."
An appropriate inspiration and reminder for caregivers and patients everywhere!
Take care. Linda Gromko, MD
I just listened to Dr. Peter Laird's interview on the Renal Support Network (http://www.rsnhope.org/). Dr. Laird is an Internist who is on dialysis because of IgA nephropathy. In his interview with Renal Support Network founder Lori Hartwell, Dr. Laird makes some very interesting observations. Among the many points he made, here are a few that stood out to me:
He is a strong advocate of Home Dialysis.
He points out that extended or nocturnal dialysis has shown similar survival statistics to cadaveric renal transplants.
Dr. Laird encourages nephrologists to prescribe longer, slower, and more frequent dialysis treatments for their patients.
He makes the sad, but true comment that individual providers--from technicians to physicians--vary in their commitment to hygiene, often short-changing the basics of hand-washing!
He emphasizes the personal control patients have with Home Dialysis care.
He advocates self-insertion of dialysis needles using the buttonhole technique for prevention of fistula aneurysms.
His story of selecting dialysis over transplant (personal history of testicular cancer and melanoma) reminds us that transplant is not for everyone--but maximizing the efficacy of dialysis is possible through extended, frequent treatments.
Listening to Dr. Laird's interview was a useful experience. I can't imagine that any physician needing dialysis would voluntarily chose in-Center treatments! For so many reasons, but certainly for the reasons of personal freedom and quality control.
Dr. Laird's interview reminded me of this fundamental concept:
Nobody cares more about the quality of your dialysis than you or your partner!
We are hearing more frequently that heart disease and kidney disease are closely related. Since my husband suffered a recent heart event, I thought it would be useful--from the perpective of a family doctor and a Home Dialysis caregiver--to discuss the common signs and symptoms of an acute heart attack.
The classic symptoms are well-known: severe chest pain, often described as tightness, a full feeling, a vice grip, pressure, heaviness, or "the elephant on the chest."
But here are some other symptoms which may signal a heart attack:
Pain in the jaw or neck
Pain in the shoulders or down an arm
Shortness of breath, particularly with exertion.
Irregular heart rate or heart rate that is particularly fast or slow
Indigestion, nausea and vomiting
But, as always in medicine, it's not always predictable. In medical school, I remember learning "If there are symptoms from the nose to the knees, think heart!"
Women's symptoms may be different. For example, I've had two women in my practice whose only symptoms of heart attack were pain in the forearms!
Any exertional symptoms, such as pain or shortness of breath with physical activity, may be a warning sign. Unusual or unexplained exhaustion, pallor, breaking our in a cold sweat are other possible symptoms.
I've read that a sense of impending doom or unexplained anxiety can signal a heart attack. And even DENIAL can be a symptom!
The take-home message is this. If you or your loved one is at risk for heart attack, and you have chest symptoms--or any of the other symptoms listed above--get help. Call 911. Remember that a false alarm is far better than a missed opportunity to get the help you need.
A grateful thank you is extended to Home Dialysis Central (http://www.homedialysis.org/). This website provides support and information regarding anything pertaining to Home Dialysis. Their slogun, "There's no place like home" says it all.
Jane McClure and I are appreciative that Home Dialysis Central is now listing our book "Arranging Your Life When Dialysis Comes Home: 'The Underwear Factor." This book starts where Home Training leaves off, by guiding the reader through the basics of creating your own Home Dialysis Center--one that is efficient, safe, and comfortable!
Home Dialysis Central is also listing my book, "Complications: A Doctor's Love Story." This is the true story of my husband Steve and his precipitous fall into renal failure. It's a frank story about our early adeventures in Home Dialysis. But it's also a story of finding love in midlife, forming a family, and generally trying to make the best of the lives we have. There are so few personal stories written which deal with kidney disease!
Part of my writing these books had to do with the fact that I'd wished Steve and I had some sort of roadmap to help us in the early days of his illness. Knowing that other people shared similar problems, and faced similar challenges would have been helpful--particularly with the problem solving approach of "Arranging Your Life When Dialysis Comes Home."
Thank you, Home Dialysis Central, for helping us get this information into the hands of people who may benefit!
Take care. Linda Gromko, MD
One of the greatest advantages of Home Dialysis is the ability to schedule dialysis treatments to accommodate the rest of your life and activities.
With Steve's recent heart event, we've made a "rule" to dialyze as much as possible when the ferries are running to Seattle; they stop from about 1:00 a.m. to 4:45 a.m., making emergency access more complicated.
So now, particularly over the weekends, we are dialyzing in the mornings--with the bonus of having afternoons and evenings free . We have come to look forward to this "stolen pleasure."
It seems to us that renal failure imposes restrictions on one's life--and in a more comprehensive way than with nearly any other condition we could think of. So-it makes sense to seize any of the areas where you do have control, and make the most of them.
Taking full advantage of our scheduling freedom helps our famiily live a life that's less tethered to illness.
The holidays can be a frantic time. Everybody's in a hurry. Traffic is terrible, weather can be downright dangerous, and schedules are packed. During the holidays, people spend too much, eat too much, drink too much, and spend hours with people they normally try to avoid during the rest of the year!
No wonder tempers are short and people aren't always at their best. Many people feel more isolated and depressed--particularly if they are dealing with grief or serious health problems. The world is screaming at you to "Deck the Halls," and you just don't need anything more on your already full calendar.
Years ago, there was a book entitled "Unplug the Christmas Machine." It invited us to examine the way we celebrate our holidays, with the intention of helping people figure out what they really wanted to do during the holidays--and weed out some of the other things that really don't add that much. Or worse: add stress.
The holidays can impose particilar stresses on caregivers. If ever there was a time which cried out for self-care, this is it!.
Here are ten tips that may help make your holidays more pleasant and less stressful:
Start by looking at what you have done in past years. What activities have added the most joy? Keep those. What activities have added the most stress? Weed those if you can.
Take a tip from our colleagues in Alcoholics Anonymous. Use their "HALT" acronyn: don't let yourself get too Hungry, too Angry, too Lonely, or too Tired.
Watch your own health by observing these basics: try to get enough sleep, enough water, enough fresh foods, enough exercise. Don't forget your own health routines.
Re-evaluate holiday spending: give gifts only to kids, draw names, etc.
Think simple for meals: think potlucks!
Remember that alcohol is a depressant. A psychiatrist friend told me that it takes four drinks per week to cancel out the effect of an antidepressant for a woman, six drinks a week for a man. Imagine: alcohol is like the anti-Prozac!
Focus on the things that fill your heart: holiday music, for example. We always try to see the Seattle Men's Chorus during the holidays.
Re-think the time you spend on decorating. Except for our daughter Brita, who loves to decorate, there are no elves!
Simplify everything you can, but hold onto any routine that supports YOU.
If you have the time, money, etc., do something for yourself: a massage, a pedicure, facial, or just a Gingerbread Latte at Starbucks. Anything to encourage yourself and thank yourself for the considerable work you do every single day.
As you review the list above, see how you can make this holiday season a more enjoyable one for yourself and those around you. In spite of significant challenges, we all have much to be grateful for--everyday.
Take care. Linda Gromko, MD
For Kindle readers, two books of interest to the Dialysis Community:
"Arranging Your Life When Dialysis Comes Home: 'The Underwear Factor'" by Linda Gromko, MD and Interior Designer Jane McClure, is now available on Kindle through Amazon.com. $6.99
This book helps the reader set up a Home Dialysis Center: from space planning, to storage, to low-cost/high-impact designer decor. It also addresses the all-important issues of caregiver support and prevention of caregiver burnout. This book begins where Home Training leaves off, guiding the reader through the early days of Home Hemo or Home Peritoneal Dialysis. Recognizing that Renal Failure can take up much of your life, this book helps the Dialysis Family run a safe, effective, and comfortable Home Dialysis Center--and reclaim a life that is less tethered to illness!
"Complications: A Doctor's Love Story" by Linda Gromko, MD is now available on Kindle through Amazon.com, $6.99.
An implausible inheritance from a former patient prompts a Seattle family doctor to reshuffle her priorities, already out-of-balance from the demands of her profession. Browsing on the Internet with "I'd like to meet a nice Democrat," Dr. Gromko finds a life partner in Steve: gifted at banter, irreverently funny, and loyal as a beagle. While Steve brings joy, he also brings complications. For one, Steve has full custody of nine-year-old Brita, who confronts the doctor with "I hate every centimeter of you; get used to it!" But the more serious complication is Steve's health. Known to have diabetes and high blood pressure for years, Steve falls precipitously into the abyss of Acute Renal Failure. Without a kidney transplant or dialysis, Steve will die within two weeks. "Complications" takes the reader on a roller coaster of medical and personal trials as Dr. Gromko exerts the most powerful advocacy of her life.
So, my husband Steve needs a kidney. He already had a living donor transplant from his niece Teresa in February 2009; that transplant failed for a variety of reasons. Steve has had another potential living donor in a cousin, but their blood didn't mix well -- too many antibodies in Steve's blood, presumably due to his first transplant and blood transfusions.
Steve's blood type is A. He needs a kidney from a donor with either type A or type O blood.
Steve also has some heart problems, and will have to be cleared by cardiology before a transplant can be considered again. But we know it will be to his advantage to have a planned operation, done "by the light of day" and with a cardiothoracic anesthesiologist in attendance.
Another living donor kidney would allow us to orchestrate the process, so we could take control of some of these variables -- at least more so than with a cadaveric kidney.
Steve and I would be happy to participate in a "Couples Exchange:" where I would donate my presumably healthy kidney to the kidney patient of another couple. That couple's healthy partner would then donate their healthy type A or type O kidney to Steve.
Here's the plus: my blood type is B! (That's a harder blood type to get, and people can wait for several years for a type B kidney.)
I'm fifty-eight years old. I don't smoke or drink. I have no major medical issues. I'm a little over 5'7'' and am not obese. I vote Democrat, and like sunsets.
If there is anyone out there with type A or O blood -- and a partner who needs a type B kidney -- I am ready and willing to swap....kidneys, that is.
We are anticipating a wait for Steve's cardiology clearance of about six months. If you have been considering an exchange, but have been on the fence, please think again. As Steve's previous donor Teresa said, "I'd do it again if I could."
Please feel free to send this blog entry along to anyone who seems appropriate. Steve is aching for another chance; fourteen-year-old Brita wants her Dad to be alive and well for her high school graduation. And I am certainly willing to give a body part in exchange for a more normal life for all of us.
If you are interested in participating in a Donor Exchange -- for us or anyone else, please call Swedish Medical Center at (206) 386-6660 for further information.
Gloria Lomax, profiled on 11/17/09, remembers A'dree-Rose Hollinger:
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.
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
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.
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 Williamsis back in the house!
We've got reason to be hopeful, big guy. Keep it up!
Take care. Linda Gromko, MD
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
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
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
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
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:
Giving to others
Sunlight/exposure to the outdoors
Time/contact with friends
Tending to the business of bill-paying, home maintenance
Personal maintenance, i.e. haircuts, grooming
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
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 http://www.lindagromkomd.com/. It's R-rated for language--but it's real!
Take care. Linda Gromko, MD
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, http://www.arrange2live.org/, and through Amazon.com.
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
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?
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
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
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
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 www.marrow.org).
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
I have a lovely 65-year-old patient with a history of diabetes and high blood pressure--the two leading causes of kidney failure. We have been following her kidney function by way of her blood tests for several years. Last summer, we could see that her "eGFR," or "estimated glomerular filtration rate" was hovering a bit above 15. A normal eGFR is well over 60.
I have been taught that most diabetic patients will need serious dialysis planning by the time their eGFRs are 15, and non-diabetics by the level of 10. (Your doctor may give you different guidelines; listen to him/her for information re: your situation!)
To begin dialysis (kidney machine) treatments, you must have "access." This means a catheter surgically placed near the belly button for Peritoneal Dialysis, or a surgically enlarged vein called a "fistula" usually in the arm. Both devices require take time to arrange, and time for the day surgery and necessary healing. And a fistula may take months to "mature" before it is ready to use!
In Steve's case, he became so sick so fast that we didn't have time for this elegant planning. As a result, he had a central line: an IV line the size of a finger placed in the internal jugular vein of his neck. While these lines are easy to use for dialysis--even Home Dialysis, they carry a serious risk of infection. These "line infections" can be life-threatening. One nephrologist told me, "It's not a matter of if the central line becomes infected, it's a matter of when!"
So my wonderful patient now has both an Peritoneal Dialysis catheter--and a fistula--at the ready! She'll probably need dialysis soon, but when she does, nobody will be eyeing the blood vessels of her neck or upper chest!
What motivated her to get this done?
"Dr. Gromko," she said, "when you told me about Steve's IV in his neck, I knew you were serious!"
So, that's the story of "Fistula First!" If you know dialysis is on the way, prepare for it by ensuring usable dialysis access before the fact. It's a matter of living longer and living better! Linda Gromko, MD
People have asked me if you have to be a doctor or nurse to do Home Dialysis. The answer? A resounding "NO!"
Now, I'd be lying if I said that it didn't help to be fluent in the language of medicine,or familiar with basic concepts such as sterile technique or drawing up medications: things I do on a day-to-day basis in my medical practice.
But most people who are trained in Home Dialysis are not health professionals at all, and they do just fine. The training for Home Hemodialysis takes about four to six weeks, and only about a week for Home Peritoneal Dialysis. The Home Training Nurses are extraordinary: exceptionally clear and patient.
But there are some basic requirements:
A team (i.e. patient and helper) that works well together - at least most of the time!
An ability to read and follow directions
Manual dexterity - or at least enough manual dexterity to allow you to connect tubing, and draw saline irrigation fluid and medications up into syringes
Enough physical strength to manage large IV bags (In our case, we must lift five ten-pound bags of IV fluid onto an IV pole for each treatment.)
The ability to do simple math
The ability to troubleshoot by using a manual (There are 1-800 hotline numbers associated with your dialysis center and the company that manufactures the machines, and the guidance is excellent.)
The ability to keep a cool head under pressure when dialysis machine alarms go off.
I have assited my husband, Steve, with Home Hemodialysis for two years. We have used both central lines (large IV portals surgically implanted in the neck or upper chest) and fistulas (surgically enlarged veins, usually in the forearm). We've run into a few snags along the way - but most of these have been related to fistula problems.
The process is time consuming, and it is labor intensive. But comparing Home Dialysis to In-Center treatment? The opportunity to do dialysis "on your own time and on your own terms?" The comfort of dialyzing in your pajamas? Home Dialysis is a no-brainer!
You may be interested in reading "Arranging Your Life When Dialysis Comes Home: 'The Underwear Factor;'" written by Interior Designer Jane McClure and me. We have a whole chapter entitled "Are You Cut Out to do Home Dialysis." (Order through http://www.lindagromkomd.com/ or http://www.arrange2live.org/.)
You might also find some entertainment value in reading about Steve's maiden voyage on Home Dialysis. It wasn't funny at the time, but we did get through it--and stayed together! (Order "Complications: A Doctor's Love Story" through http://www.lindagromkomd.com/.)
If you are considering Home Dialysis or have questions you'd like discussed, please write to me. While I cannot provide you direct medical advice, I'll happily give you the perspective of another traveler along this road. Take care. Linda Gromko, MD
Thank you for visiting my new blog. As a family physician, I've known about kidney disease for many years. But you never learn about something as deeply as when someone you love is immediately impacted. In my case, I took a crash course on kidney failure two years ago when my husband, Steve, tumbled headlong into acute renal failure: his creatinine blasting from an abnormally high level of four to an unbelievable ten in only two weeks! He required urgent kidney dialysis, via a central line--an IV placed in his neck. To do no treatment would result in death in one to two weeks.
Over the past two years, we've learned an unbelievable amount of information. We've also come to terms with living with this potentially terminal disease. We've learned a great deal about how kidney failure impacts a family.
Steve and I avidly embraced the elegant technology of Home Hemodialysis. In fact, we became so invested in making it better that a colleague and I wrote a book entitled "Arranging Your Life When Dialysis Comes Home: 'The Underwear Factor.'" It is our sincere hope that this guidebook will help pave the way for others who now face what we experienced only two years ago. Steve and I would have ached for such a guidebook. (Available through http://www.arrange2live.com/ or http://www.arrange2live.org/.)
I have also written a gritty, "R-rated" (R for language) memoir about our first year of Steve's kidney challenges. "Complications: A Doctor's Love Story" is now available in bookstores. The feedback has been that it is an intense, highly personal read. How I wish it were fiction! (Available through http://www.lindagromkomd.com/.)
The purpose of this blog is to explore issues related to kidney care in the home, and to support other caregivers in the process.