Doctors as living donors

The concept of living donors and unrelated recipients is nothing new to Dr. Levey. Back in 1986, he contributed a “Sounding Board” piece on the topic to The New England Journal of Medicine (1986;314:914-916). One of his coauthors was fellow nephrologist Susan Hou, MD, who made headlines in 2003 when she donated a kidney to one of her patients.

One year after his own donation to someone he did not know, Dr. Levey says the rewarding feeling has not diminished over time. “This is what I believe in, and to be able to do it myself to help someone that I love, and to really show that I believe in what I say, was a wonderful experience,” he declares. “I continue to feel that.”

Stephen Z. Fadem, MD, a Houston nephrologist who was diagnosed with osteosarcoma

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Stephen Fadem, MD, couldn’t figure out why, after being diagnosed with osteosarcoma, he became so fascinated with photography. He had always had an interest in it, but during his illness he genuinely embraced it. Thirteen years post-diagnosis, he might have it figured out.

“I think the reason is that when we have happy moments, we just want to capture them. We just want to hold on,” he offers. “And to me, photography is a great way to do that. I think I just want to capture as much as I can.”

Unlike Drs. Schellhammer and Levey, Dr. Fadem, a Houston nephrologist, was not facing a health situation that aligned with his specialty when he learned in 1997, at age 49, that he had an osteosarcoma. But he did have some oncology training early in his career that proved to be invaluable.

“My awareness of my disease and my ability to quickly use my medical background to gain even more knowledge about it is really the reason I’m alive,” Dr. Fadem says. “The fact that I’m able to leap from that level gives me a terrific advantage. I was able to find the appropriate care, I was able to get the appropriate care really quickly, and I was able to have enough understanding that I would be compliant with therapy.”

Dr. Fadem relays the twists and turns of his case in an essay posted on his Web site, The Nephron Information Center. The story has a happy ending: Despite some bleak setbacks, he rebounded to the point that he recently passed an insurance physical. But early on in Dr. Fadem’s illness, when he saw chest x-rays showing metastatic lesions in his lungs, his first reaction was “poor guy.” He then realized that it was his own name on the films.

In his essay, Dr. Fadem follows up that memory with these words: “It is amazing how rapidly we accept bad news and how we regroup to develop a strategy to cope with and overcome it.”

Now, he elaborates: “I sort of pre-empted the anger and denial stages of this disease. I never got really angry that I was sick because I really didn’t have time to be angry about that, number one. Number two, I denied it for about one minute, then I realized that I couldn’t deny it. The x-rays were my x-rays. They had my name on them, and that was that, and I needed to move on to the next step, which was accept the problem and then try to solve it. My job for my entire career has been to solve problems, and I’m pretty good at it, so I figured okay, I’d better solve this one.”

Having the right connections

Despite several rough patches and a poor prognosis overall—the literature gave him a 19% shot at survival—Dr. Fadem could not help but find contagious the confidence displayed by his handpicked oncologist, Robert Benjamin, MD. “When he told me he was going to cure me, I said, ‘Well, where are the medical articles saying that?’” He told me, ‘I’ve been too swamped with all these successful therapies to have time to sit down and write them up.’ He is my role model for how a doctor should interact with patients.”

To Dr. Fadem, the most necessary component of any patient’s success is that the individual understand why he or she is being asked to go to great lengths to be compliant with treatment. “If you don’t understand what people are telling you to do, there’s a good chance you won’t do it very well,” he contends. “This is what changed me as a doctor and made me so passionate about trying to use that very tenet in my own practice, and this is the reason I became active in AAKP [American Association of Kidney Patients;].”

As Dr. Fadem puts it, “Somebody’s asking me to go through a major operation. Somebody’s asking me to get on medicines that are going to make me lose my hair, become numb, have mouth ulcers, and become very sick. I’m going to have to understand why I’m going to have to make that kind of sacrifice. And likewise, when I’m telling my patients, ‘You need to take your medicine. You need to come to dialysis. You need to watch your salt. You need to stay away from extra fluids,’ for me just to tell them that is not the same as me trying to make them understand the dynamic of how it will impact their illness.”

Dr. Fadem could not help but open up to his patients about his own health troubles. “I was totally bald for a year. My patients didn’t think I became a Buddhist monk. I pretty much had to explain what was going on.”

The Houston newspapers even covered his story, but he never worried about being stigmatized. “This is just God throwing darts, and one of them hit me,” Dr. Fadem says. “I wasn’t worried about going public with this because as I tell everybody, life is a sexually transmitted, incurable, and terminal disease. We all have an opportunity to get sick, and there was absolutely no advantage for me to keep this disease a secret.”

Although Dr. Fadem knows he has the expertise to counsel his patients, he still sees himself as vulnerable as they are. “The only reason I’m doing as well as I am is because I’m following certain guidelines and I’m trying to do what’s best for me, and that’s what I expect of them.”

Understanding the system

When his cancer was first diagnosed, Dr. Fadem had his MRI scans reviewed right away, but his patients are not always as lucky. “My biggest barrier isn’t [slow] lab technicians, it’s managed care organizations,” he states. “It’s basically a big bureaucracy that surrounds health care and almost seems to be set up as a barrier—as a subtle form of rationing. It really is unfortunate because the barriers that are created end up leading to a worse outcome.”

To that end, he is intent on trying to “get health care done in real time, whether it’s decision support back to me as a physician so I can make the right choices for my patients, or keeping the patients as well-informed as possible, so they can make the right decisions and move as quickly as they can.”

This motivation may be why Dr. Fadem is such a great advocate of the Renal Physicians Association newly updated Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis, 2nd edition. According to Dr. Fadem, this should be required reading for every nephrologist and anyone else who works with kidney patients. “It will help guide physicians in dealing with patients who have challenging conditions that may not have a very good outlook,” he explains.

Dr. Fadem credits his patients for inspiring him as a physician and as a patient himself. “You can’t help but admire dialysis patients when you see them go through that level of illness. Anyone can find out in a heartbeat that they need dialysis, or that they have a terminal disease, or that they need a major operation. If I hadn’t been dealing with patients who were so tenacious, so resilient, so tough, I don’t think that I would have had the inspiration to do what I do.”