A Holiday From Illness, All Too Fleeting

[okarol]

April 22, 2008
Cases
A Holiday From Illness, All Too Fleeting
By DENA RIFKIN, M.D.

When I entered his hospital room, his exuberance seemed so out of place, so foreign, that my first instinct was to find a pathologic cause for it. Perhaps the medicines were affecting his brain; the high doses of steroids given after a kidney transplant can do that.

Of course, he had a right to be ecstatic. After many years on the waiting list, his turn had come. He grabbed my arm and pointed to the urine that had collected in the tubing next to his bed, the first visible evidence of his new kidney.

“Look at that! Will you have a look at that! Working like a charm!”

In a few days, he was walking the floors, hugging everyone in sight; then he was discharged home to enjoy his new life.

I had the fortune of meeting him on his happiest day. My memories of those who do well in the hospital usually fade faster than the images of those who linger or die. But with this patient, it was different. I didn’t prepare him for the transplant or do the surgery or even take care of him for very long, but I carried a bit of the triumph with me.

So when I heard his name again, nearly a year later, I was immediately curious.

“I’m going to kill him!” The nurse-practitioner who coordinated transplant care was gesticulating wildly. I looked over her shoulder at the numbers on the screen. The new kidney was barely functioning.

“He stopped coming to clinic — I’ve been calling him for weeks. Now look!”

It turned out that he had stopped taking his immunosuppressive medications about two months earlier. His body was rejecting the kidney.

He was admitted to the hospital for treatment to salvage his kidney function. I volunteered to biopsy the transplant; having been part of the success, I wanted to understand the failure. His post-transplant course had been smooth. He’d had no side effects from the medicines, excellent insurance coverage, a loving and supportive family. All he had to do was take pills twice a day, and he was free of the four-hour-long dialysis sessions that had been part of his life for years. He could eat and drink whatever he wanted, sleep in instead of going to dialysis in the morning, travel — anything, as long as he took those pills.

While we waited for the biopsy, he talked. He was ashamed of stopping the pills, so ashamed he had avoided coming in to see his doctor even when he started to feel ill again. When he finally did come back, he had felt exposed, caught in the act.

It had started when he skipped a dose by accident. Nothing happened. “It was like getting let out of jail,” he told me, as I recall. “You turn and look over your shoulder, and no one is chasing you. So you keep going, and looking back, and no one is chasing you. I felt good, and I was free.”

He went away for a week, without pills. Nothing happened.

“It was like I wasn’t sick at all,” he said with a kind of wistful happiness.

And then, as we waited, he said more about that year of freedom from dialysis. He had skipped other things in the past — a dialysis session, a dose of a blood pressure medication — and nothing bad had happened. He thought maybe he could get away with fewer pills, fewer visits. Wasn’t the transplant supposed to make him well?

I was angry with him for all the wasted effort of preparing him for the transplant. I was angry with him for not taking care of a kidney so many people would have wanted to have. I was angry with him for failing himself, and for failing me.

I knew that high-tech medicine could not solve all problems, that many lives “saved” in the hospital were lost, slowly, outside it. But he had seemed so different. He had seemed so smart, grateful, happy. He had seemed to understand how lucky he was.

I realized there must be something profound that I did not yet understand about being sick, despite working with sick people every day. Cause and effect, interventions and outcomes, costs and benefits: these are easy to contemplate when someone else has to take the pills twice a day, sit in the chair for four hours, have blood drawn every week. For my patient, being hooked up to a dialysis machine was one kind of illness, and taking pills that protected a new kidney from failure was another. Maybe for him there was only one kind of freedom, and it happened for a few days on holiday: no pills, no symptoms, no doctors, no disease.

Dr. Dena Rifkin is a physician in Boston. She is completing a fellowship in kidney disease.

http://www.nytimes.com/2008/04/22/health/views/22case.html?_r=1&oref=slogin

[stauffenberg]

I am shocked to find such a profound capacity for humanisitic insight from a practising physician!  Usually they revoke your license or don't even let you get into medical school in the first place if you have such depth of understanding of human problems.

The need to be free, completely free, is essential to humanness but modern medicine can only fight disease by imprisoning patients in one form of treatment regimen or another, so it tries to pretend that freedom isn't important.  This patient's case is an important reminder of how vital it is for people to live with absolute spontaneity, no matter how unrealistic that need might be in the circumstances.  This is why inmates in the concentration camps sometimes threw themselves against the electrified barbed wire perimeter rather than continuing the struggle to survive.

A friend of mine now is developing Huntington's Disease, which will inevitably lead to a slow, horrible death in the next decade.  I told her that recent research shows that some simple medicines have been found to slow the onset of Huntington's, but she won't take them, because she refuses to have to discipline herself to taking pills twice a day.  So her problem and that of the transplant recipient described here may be not that uncommon.