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.