Best Foot Forward

Kidney failure will shock you into taking good care of yourself. Still, the pain from attendant gout is excruciating, making walking a chore. But a dose of humor — and a very restricted diet — are steps toward progress
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Jim McFarlin, Freelance Writer, Stage IV Kidney Failure // Photograph by Joe Vaughn

Evidence suggests you initiated your betrayal the night of April 17, 2009, when I decided to surprise Karen (my wife) with a romantic night on the town, beginning with a Tony Bennett concert at Sound Board in MotorCity Casino. Afterward, we elected to stay in the casino for dinner, and I feasted on one of the most succulent charbroiled sirloins you can imagine, with all the trimmings — béarnaise sauce for the meat, hollandaise for the asparagus, a little extra sauce on the side for good measure.

I can still taste that meal in my mind today. Which is a good thing, since it was likely the last such spread I will ever enjoy.The next night, the mere touch of the sheet against my left foot caused me to awaken and bolt upright in bed in excruciating pain. The richness of that post-Tony dinner had triggered a severe case of gout in both feet. And please save the jokes about it being a wealthy man’s condition or the comparisons to Henry VIII; when your feet have swollen to half beyond their normal size, nothing really seems all that amusing. Now, I have fairly massive puppies to begin with — 15 DD — but seeing them bloated to elephantine proportions was a horror right out of Ripley’s Believe It or Not.

My family physician, a caring and wonderful man named Geoffrey Trivax, said there were several medications he normally might recommend to treat the disorder — something called allopurinol among them. However, he was reluctant to prescribe anything for my gout because of the root cause behind the affliction: Earlier, I had been diagnosed with Stage IV kidney failure.

At Stage V, I’ve been told, one should begin gathering the family and making arrangements, so, all things considered, Stage IV isn’t the end of the world. But my kidneys have become more precious and delicate than the Iranian Crown Jewels, and Trivax was loath to propose any treatment that might cause them further damage. Allopurinol potentially was such a drug.

Because my kidneys are losing the ability to filter my blood as they normally would, waste products like uric acid build up in my system instead of being discharged efficiently through the body. In my case, gout is the result. And if you’ve ever been stricken with it, you know this is true: If there’s somebody out there you absolutely can’t stand, don’t wish they were dead. That’s too quick, too final. Hope they develop a case of gout.

When you cannot walk without intense pain, your entire world changes. I quickly descended to using a cane, then a walker. At times, I chose to crawl to the bathroom or other places around my home because the thought of putting pressure on my feet was simply unimaginable. I talked myself out of going places I normally would visit without a second thought. For more than three months, with the aid of an incredibly supportive and attentive wife, I endured near-constant agony until I found another physician who said he was “not afraid” to prescribe allopurinol in combination with other drugs, in carefully monitored doses. (He’s not afraid? I thought. He’s not taking the pills! What about me?)

 

While the gout now appears to be under control, damage has been done. My stride, once quick and light, seems plodding and unsteady. Most of my shoes no longer fit. Stairs are a challenge. Even stepping off the curb has become an adventure. Still, I’m thankful for my present state, because I know the situation could be far worse. Gout is merely the most obvious — and painful — manifestation so far of a dangerous, potentially life-threatening disease. As my kidney specialist, or nephrologist, the gentle and intense Dr. Fawaz Al-Ejel, once told me, “Your kidneys will never hurt. Pain won’t indicate the severity of your condition.”

What happened to them? Trivax suggests the problem began to surface as far back as June 2001, when routine tests revealed unusually high amounts of protein in my urine. Hey, that’s a good thing, right? I reasoned. We all need protein, and I’ve got so much, I’m pissing it away! Such naiveté could explain why I’m not a doctor. The protein, coupled with a mild elevation of my creatinine (cree-AT-in-een) levels, was enough to raise concern. (Creatinine, a chemical waste molecule generated from muscle metabolism and an indicator of renal function, may be the most important word in the kidney patient’s vocabulary. Those afflicted compare and share their numbers like golfers discussing their low scores.)

 

The normal creatinine level for a man in my age range is usually estimated between 0.9-1.3. In 2001, I was at 1.5, enough for Trivax to encourage me to consult a nephrologist. Naturally, sensing his misgivings, I did absolutely nothing. Shortly after that visit, I lost my job and my health-insurance coverage, had no earthly way to afford COBRA, and managed to convince myself that if I didn’t think about the condition, it would conveniently go away and my kidneys might heal themselves. Please, please, never do as I have done; kidney disease is irreversible. Besides, the real root of the problem was attributable to a malady suffered by far too many Americans, particularly African-American men: wild, unchecked hypertension, or high blood pressure.

An emergency-room physician at Providence Hospital once explained it to me like this: “When your blood pressure is too high, the blood just pounds against your arteries with every beat, as if you kept pounding your fist against a wall. Now, nothing might happen to that wall right away, but over the course of time, if you keep pounding away, eventually you’re going to damage that wall. Same with your blood pressure. Eventually, something’s got to give.” For me, it was the kidneys. By the time I finally worked up the courage to make an appointment with Al-Ejel in May 2006, my creatinine level had jumped to 2.5, my blood pressure was 130/90, and the race to salvage my kidneys was under way.

An ultrasound was taken of my kidneys to rule out any blockages. By November 2008, my creatinine had spiked to an alarming 5.2, which Al-Ejel described as a “typical, natural progression of uncontrolled hypertension.” You know, it’s not enough to simply go to your doctor or specialist. It’s also a wise idea to follow their advice. If I hadn’t taken all these dire pronouncements with complete seriousness before — after all, I felt fine — I sensed it suddenly was time to get some kidney religion.

I began taking all of my medications faithfully every day, drugs with names like planets on Star Trek — Lisinopril, Atenolol, Zemplar — mostly to control my hypertension, augmented with supplements like Vitamin D and B-1. In all, I now gulp about a dozen pills each day at various times. And if knowledge is power, I’m earning my master’s degree in kidney. I find myself constantly researching relevant topics online, and while I’m not on dialysis yet or in immediate need of a kidney transplant, I realize those events may come at any time. At Al-Ejel’s urging, I visited a Southfield office of DaVita, a national chain of dialysis centers, and met a delightful nurse named Nancy Thompson, who took me through her “Kidney 101” course.

I have learned so much. Did you know, for example, that kidneys can continue to perform their vital duties, like circulating and cleansing the blood supply about 12 times an hour, producing urine and balancing our electrolytes, until nearly 80 percent of their function is lost? (That’s where I am: down to about 20 percent of total kidney function; if it drops below 15 percent, call out the transplant team.) Or that one out of every nine Americans has some form of kidney disease? Or that a kidney “transplant” is more like a kidney “addition,” since neither of the weakened kidneys is removed?

Or that if you receive a kidney from a smaller person, the organ will actually grow to accommodate your larger frame? There are two types of dialysis; one filters through a tube coming out of your midsection! I pray that’s a choice I won’t have to make for a long time, if ever.

I have made major adjustments in my eating habits as well, adopting a pro-kidney diet that is quite simple to follow. In general, if I used to enjoy it, I can’t eat it anymore. Limiting sodium, protein, phosphorus, and potassium is vital to keeping what’s left of my kidneys healthy. That means no added salt or fat (oh, no!), no bananas, tomatoes, oranges, nuts, cola, peanut butter, beer (oh, NO!), smoked meats, dairy products, or most beans. What’s left, you ask? I asked, too. There is a lot of chicken and rice in my present and future.

I received a referral to the kidney-transplant unit at William Beaumont Hospital in Royal Oak, where I met a tremendously confident and reassuring team led by my transplant coordinator, nurse Sharon Berman. I have been placed on the Michigan transplant list to receive a donor kidney, although currently there is nearly a five-year wait to become eligible for an organ, one of the longest durations in the Midwest. Medically, a lot can change in five years. I’m doing all right, relatively speaking, but common logic suggests some people can’t survive that length of time without a replacement organ.

One of the very best things Beaumont does is to pair you with a “kidney mentor,” someone who has gone through transplantation and can answer questions the doctor simply cannot. How much does it hurt? What’s recovery like? Is there anything you could do before that you can’t do now? My mentor is a genial fellow named Bernie. (I won’t use his last name for privacy reasons.) We have had several long conversations.

Bernie actually has had two kidney transplants; when a virus destroyed his first donor organ, he discovered that his wife was a perfect match. Sometimes, I’m told, your ideal blood-type match may not be a relative, but a complete stranger. My blood type is O, which is great if I’m giving you an organ. I’m the universal donor. However, I can accept only an organ from another O blood type, which will narrow my field of potential candidates.

My insurance company and I now support more specialists than I ever dreamed possible. I see a podiatrist, a nephrologist, a urologist … I think I need a psychologist. As a writer, I initially entertained the notion of keeping a journal or blogging about my medical “journey.” But folks today blog about everything from their ingrown toenails to their puppy’s bowel movements. TMI, people! I felt no overpowering need to share my feelings and fears with the world. I had to be persuaded to write the piece you’re reading now. I just feel there is something about the realization that a part of your body is failing you that is a very personal, interior contemplation. I’m happy to discuss my condition if anyone asks, and I’m blessed to have so many friends who express genuine concern, but I have no desire to beat my “woe-is-me” drum in a pity parade.

Here’s what I know for sure: My creatinine level has subsided to 3.2 and appears to have stabilized for now. My blood pressure is steady at 118/84; I don’t think it was that low at birth. I need to lose about 30 pounds, which should be easier since there’s virtually nothing fattening I can still eat.

Although my feet still give me pause, I try to exercise as often as I can. I look at my walker, folded neatly in a corner, and smile softly. And though I know it sounds like the most hackneyed of clichés, I truly am more thankful for my life’s good fortune. Every morning my feet hit the floor without pain, it’s going to be a very good day.

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