I distinctly remember how I first learned about unrelated donor transplants. In the late 1990s I was working in Denver at Quark, Inc. when one of my coworkers offered to donate a kidney to another coworker. I didn’t even know that someone unrelated to the recipient could donate a kidney. Their mostly positive experience is a major reason why I become a nondirected donor.
The story start with David Allen, who in the fall of 1999 was a product analyst at Quark. David is a big guy, about 7-foot tall, a former pro baseball prospect who was still very athletic. He describes the events leading to his diagnosis of end-stage renal disease (ESRD).
“I first noticed a problem while playing [recreational league] baseball. I was losing my eyesight and had trouble reading pitches. It progressively got worse. One day a ground ball came to me. I missed it and turned around and I couldn’t see it. I turned my head and I could see it in my peripheral vision, but if I looked directly at it, it disappeared. I told the coach I have to take myself out of the game. I was pretty concerned at that point.
“I already had an appointment with the optometrist for the next day. He said, ‘I can work on your eyes, but I want to send you to an internist.’ They were in the office next door.”
One of the doctors checked David’s blood pressure, it was 275/175. A systolic/diastolic blood pressure between 110/65 and 130/85mm Hg is considered the optimal range. 210/120mm Hg is considered Stage 4-very severe. David’s blood pressure was significantly above that. His loss of eyesight was a side effect of high blood pressure known as hypertensive retinopathy.
“They took some blood samples and asked me if I wanted to go home or check into the ICU. At that point, I was in bad shape. I’d lost 75% of my vision. So I went in [to the hospital]. He [a nephrologist] later told me, ‘Your creatinine is 14. You have end-stage renal failure.’”
The optimal serum creatinine level for an adult male is between 0.7 and 1.2 mg/dl. (For women, the optimal range is lower, from 0.5 to 1.0 mg/dl.) A level of 10 or higher indicates kidney failure and requires immediate renal replacement therapy, either dialysis or a transplant, to avoid death. David continues,
“I saw a really badly produced video about kidney disease. They wanted to put me on dialysis then, but my blood pressure was too high. Finally, after a week of treatment, my blood pressure is still high, but they put me on emergency dialysis.”
Getting an offer of a kidney
Another of my coworkers at Quark, Paul Brown, saw how kidney disease was taking its toll on David. He recalls how he made the decision to get an HLA crossmatch test, one of the first step to becoming a donor.
“I don’t remember him [David] ever being sick. He was just fine one day and the next day we heard he’s in intensive care. Certainly after he came back to work, I noticed a change. He was dependent on dialysis. I was working closely with him on a couple of projects and he was gone three days a week for treatment. It was pretty disturbing, thinking about what his life was going to be like.
“I knew he was hoping to get a transplant. He mentioned that some of the guys on the baseball team were thinking about getting tested. So I decided to get tested too.”
David remembers the events a bit differently.
“One day as I was leaving work to go to dialysis, Paul asked me for the phone number of the center. He had just been promoted to assistant product manager and I thought he wanted the number so he could call me with questions about work. But I didn’t want him bothering me, so I said ‘no, I’ve got to leave now.’
“The next day he asked again. And I still thought he was just being pushy. So asked him what was so important that he wanted the number of the dialysis center. And he said, ‘not that number, the number for the transplant center.’ He wanted to get tested.
“I said, ‘Are you sure you want to do this? I mean, sure I want your kidney. But don’t do it if you want to be a hero. You have to realize how serious this is.’”
Paul went in and began the donor process. Like most people who volunteer to donate, he was unfamiliar with the evaluation process. He also wasn’t expecting to be accepted since David’s own brother had been tested and rejected. However, it turns out Paul was a good match for David. He was blood type compatible and HLA crossmatch compatible. In fact, out of the six major human leukocyte antigens, Paul was an identical match for two of David’s. When Paul learned he was a good match, he was surprised.
David Allen (left) and Paul Brown after their successful surgeries. Photo by Julie Brown
Every person who makes the decision whether to donate a kidney takes a slightly different path. Most people, even if they know someone with kidney disease, never think about donating. So the decision never gets made. But once confronted with the decision, there are lots of reactions. Some people make the decision instantly, based solely on their emotional ties to the recipient, without regard to the medical consequences. Others take more time, talking to friends and family before making their decision. A few spend time poring over medical research before deciding. Paul jokingly describes how he made his own decision.
“It’s kind of funny. I never made the decision to donate. I just went to get tested and figured that would be it. But then I matched and so I went to the next step. And then the next, and so on. Then I woke up and I was down one kidney.
“I never sat down and did any research on it [kidney donation]. I put my faith in the medical crew that if they say ‘yes, this is something you can do’ then they must think it’s acceptable. I never felt I couldn’t trust them.”
There was another reason that Paul knew he should continue with the donation process. Paul is tall, about 6’-2”, but is still ten inches shorter than David. Like other organs, kidney size is related to height. And ideally, a transplanted kidney’s volume should be similar to the recipient’s original kidney. This put Paul’s kidney at the lower end of the range of the ideal kidney volume for David. Says Paul,
“I remember thinking at the time that with his [kidney size] restriction, his chance of finding a suitable donor was next to zero.”
The next blog entry discusses the day of the transplant.