By Dena Rifkin, MD, MS
Read the health section of any newspaper regularly and you're likely to see an article about organ transplants—something about deceased donor rules, or whether organs should be bought and sold, or a 'personal-interest' piece on a local organ recipient competing in the Transplant Games. In fact, read the arts and entertainment section, and you might see something there too—whether a book review (“Never Let Me Go,” “My Sister's Keeper”), a movie (“Dirty Pretty Things”) or an event (the local Kidney Walk the Transplant Games).
Look through that same newspaper, and you're unlikely to find much about taking pills two or three times a day, or about living with mild immunesuppression and its side effects, or about waiting in a doctor's office for checkups and blood tests every few weeks or months.
Transplantation is exciting—it's a major medical advance, it changes the course of disease, and it saves lives. It also captures the imagination of artists and writers and challenges ethicists and physicians to confront the knotty problems of transferring one person's organs to another. Entire conferences are dedicated to working through the ethical issues of living and deceased donor transplants, of donor shortages, of constructing waiting lists appropriately, and on and on.
Taking pills two or three times a day is not exciting. There are no movies or popular books about it. It's talked about at conferences, yes, but not with the same fervor and interest. Those conferences aren't covered in your local newspaper. And yet those pills are what keep those transplants going, at least until we come up with something better.
I've seen patients who stopped taking their transplant medications. Nothing in my professional life has been as unexpected and devastating. I've seen healthy people die of unanticipated, overwhelming infections or malignancies. Conversely, I've seen people who have pushed themselves to the brink with drugs and alcohol, and people who have deliberately skipped insulin and landed in the intensive care unit. But seeing someone stop transplant medications is far worse. It's not just the loss for that person; it's watching the illusion of a 'cured' disease being lost, and knowing that someone else—living or dead—gave that organ in vain.
The transplant is exciting. The pills are unexciting. They remind you every day that you're not quite healthy. That's what one patient told me, more or less. He just wanted to be healthy again. Other people stop because of financial issues, or because of side effects, or because they're depressed. Almost no one tells the doctor before they stop.
When I talk with my patients, I try to ask about this every time. “How is it going with the medications?” I ask, “Are any of them hard to take?” I ask about copayments and time pressures and stress. Most of the time, my patients smile and nod, “No problem, doc,” but I wonder what is really going on. I try to cheer them on—tell them that they're keeping their transplant going, hour by hour, day by day—long after the newspaper writers and film artists, the ethicists, and maybe even some of the physicians have stopped thinking about what it takes to be a transplant survivor. It takes stamina, dedication, and courage. And it takes a whole lot of pills, two or three times a day, every day. Keep going, I say. Talk to me if you get discouraged. Remember, you're doing great.
Dena Rifkin is Assistant Professor of Nephrology, University of California San Diego, and San Diego VA Medical Center.