Medical Views: Living Donation -- Cass Peterson's Story

My husband, then my fiancé, was diagnosed in April 2000 with end stage renal disease, a complication of juvenile diabetes, and was told he needed a kidney transplant.

One of the first questions our nearest transplant center -- St. Barnabas Medical Center in Livingston, N.J. -- asked was if there were any potential related donors.

There weren't. Mike's father (deceased) grew up in an orphanage. His elderly mother's relatives are in Puerto Rico, and not particularly close. His only sibling, a sister, had medical problems of her own. He had two nephews, one 21 and newly married and the other only 12.

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I was more than willing to donate, but we didn't even know if we had compatible blood types. But an early blood test (part of Mike's workup to get qualified for the transplant list) showed his blood type was A positive, which meant I was at least in the running. I'm A negative, and Rh factor doesn't count in kidney transplants.

When Mike completed his medical evaluation and was accepted as a transplant candidate, the center agreed to test me as a potential living donor.

At 50, I was pushing the prime age for organ donors, but I was in very good physical condition with no medical problems. There was a time when I might have been rejected out of hand for being unrelated genetically or because of my age. But organs are in short supply, and the success rate for transplants from healthy older donors is very good. Most doctors are willing to be a little more liberal these days in their view of potential donors.

Taking the Tests

The first hurdle was a compatibility test. For this, a technician took five vials of blood from each of us to test for matching antigens and antibody compatibility. The most critical, the transplant center told us, was the compatibility test. If Mike's blood reacted to any antibodies carried in my blood, his body would almost certainly reject my kidney.

Second in importance was the antigen match. Transplant centers look for matches between six antigens carried on human cells -- the higher the number of matches, the better the chances of success with a transplant.

Third, the center wanted to test my blood to determine what viruses I'd been exposed to -- HIV was critical, of course, but so was hepatitis in its various forms, Epstein-Barr virus and a common virus called cytomegalovirus (CMV). The majority of people have been exposed to CMV as children, by getting chicken pox. To people with a normal immune system, CMV is no big deal. But if I'd been exposed and Mike hadn't, he could contract CMV from my kidney -- and CMV can be deadly in a person whose immune system has been deliberately crippled to avoid rejection of a transplanted organ.

As it turned out, Mike's blood did not react negatively to mine, and we both tested negative for all viruses, including CMV. As a bonus, we had one matching antigen. That's not as good as a related donor might have offered, but our transplant coordinators assured us that anti-rejection medications have improved to the point that even zero-antigen matches have impressive success rates.

The next hurdle was to pass an intensive examination of my own health. After getting a green light on the easy stuff -- medical history, chest X-ray, EKG, urinalysis -- I moved on to the more detailed tests. First was a creatinine clearance test, which meant collecting every drop of urine for 24 hours. That would demonstrate that I had enough kidney reserve to handle my own needs if I gave one kidney to Mike. I also needed to show negative results on a Pap smear and mammogram (if I'd been male, the test would have been a prostate exam). The doctors don't want to transplant any free-floating cancer cells to a person who will have no immune system to combat them.

With the green light still on, I moved to the last phase: a CT scan of the kidneys. Seems funny, but at this point the doctors only knew that I had good kidney function. Some people have great kidney function with only one kidney -- no health problem for them, but obviously they can't give their only kidney to someone else.

Some centers use other testing methods -- such as an arterial angiogram, which involves threading a catheter into a groin artery -- for this detailed look at the kidney and its blood vessel connections. The CT scan that I underwent is less invasive and a lot less scary. The CT scan involved injecting a tracking chemical through a needle into a vein in the inside of my elbow -- the same procedure as taking a blood test, except in this case I "get" instead of "give." As I lay inside a contraption that looked like a steel doughnut with a cot in the middle, a machine took pictures of the tracking chemical moving through my blood vessels and kidneys.

The results: I had two perfectly normal kidneys, but both had two renal arteries. In some centers, this would disqualify me from laproscopic surgery -- a less invasive surgical technique that reduces the pain and strain on the kidney donor. Each artery and vein that must be sealed off to extract the kidney introduces a little more surgical risk and a little more trauma for the kidney. My surgeon was not fazed by the extra artery, and everything else looked good.

It's Go for Surgery

I was approved for the laproscopic procedure, and we were assigned a date for surgery -- Dec. 12, 2000. That was the tough part -- arranging time off from work, laying in supplies of food (especially heavy stuff, because neither of us were supposed to be lifting anything over 20 pounds for awhile), alerting the family, getting ready ahead of time for Christmas.

Five days before the surgery date, we repeated the compatibility test -- just to make sure nothing had changed in the interim. We also repeated the EKG, urinalysis and chest X-ray -- standard pre-surgical procedures.

On surgery day, we reported to St. Barnabas, an hour from our house, at 6 a.m., as instructed. After checking in and waiting for our names to be called in the waiting room, we got IV ports installed in the pre-surgery area. Then we waited, joking around with family members who were allowed into the pre-surgery area.

Shortly after 7 a.m., I was wheeled into surgery, an hour or so before Mike. As I lay on the surgical table, I turned to watch the attendants strap my arm to a board to keep it steady for the anesthetics that would be administered intravenously. That's the last I remember until I woke up in the recovery room, about five hours later. I got to see Mike there as they wheeled me past his bed on the way to my room. Without my glasses, they might as well have been pointing out Richard Gere. I wouldn't have been able to tell the difference.

I was moved to a room on the transplant floor shortly after 4 p.m., and Mike was sent to the intensive care unit a few hours later. ICU for new transplant recipients is standard. Anyone who's had surgery before - especially abdominal surgery - will be familiar with the routine that follows. There was a period of 12 hours or less when I was pretty much out of it -- aware of what was going on but too sleepy to care. I was awake enough to talk to family visitors, but was not disappointed when they left shortly after 7 p.m.

At midnight, I was wide awake and dying to get out of bed. I was not in pain from the surgery, because I was being fed morphine intravenously, along with fluids. But I'd been flat on my back since 7 a.m., and my back hurt. A nurse who'd come to check my blood pressure helped me stand by the bed for 20 minutes or so.

By the following afternoon, nurses had removed the morphine pump and the Foley catheter that had been inserted during surgery, and stopped the IV. I was told that the main post-surgical pain from a laproscopic procedure would be residual gas in the abdomen (my belly was pumped full of carbon dioxide during surgery to give the micro-cameras a better view and give the surgeon more working space for his instruments). But the after-effects of this surgery seemed identical to my only previous experience with abdominal surgery, a gynecological procedure that involved a conventional incision.

My belly hurt when I coughed, sneezed, laughed or used the abdominal muscles in any fashion. Getting out of or into a chair required some fortitude. Walking up and down the halls was easy; rolling over in bed was tough. But I never once needed to push the button on my morphine pump to give myself more than the minimal medication being administered by drip. In the hospital, I took three pain pills over the course of a day and a half (after the morphine pump was disconnected), and I took two more of those pills at home. After that, Tylenol took care of any discomfort.

I ran a slight fever after surgery (around 99.5), which is a common reaction to surgery. It wasn't high enough to keep me from being discharged Thursday morning, about 48 hours after surgery.

Life After Donation

The most uncomfortable problems were short-term constipation, a common reaction to anesthesia, and, for a couple of weeks, difficulty in finding a comfortable position to sleep.

Mike came home two days later, on a Saturday. He experienced no acute rejection episodes in the hospital, and so far still hasn't (almost nine months as I write this). His recovery has been blessedly uneventful -- no infections, no serious drug reactions. So has mine.

I went back to work in slightly over two weeks. If I had it to do over again, I might have taken another week, because I did have some residual fatigue. On the other hand, pushing yourself just a little helps restore energy levels.

So far as I know, the surgery has had no adverse effect on my health, but it would be wrong to assume that it had no effect at all. My blood pressure is up slightly from 106/60 to 118/65, and my creatinine rose from 0.7 to 1.1 - both still well within the normal range.

My surgeon advised me to avoid contact sports (no football, rugby, boxing or rodeo) to minimize risk to the remaining kidney, and to avoid the use of ibuprofen-based pain relievers (Advil, Motrin, etc.) because of concern that they might be capable of kidney damage. A little research on my own showed that the jury is still out on other pain relievers, too, so I use Tylenol only sparingly. Because I have a family history of osteoarthritis and cartilage-related joint problems, I started taking glucosamine chondroitin regularly, in the hope of avoiding the need for pain relievers in the future.

Other than that, I live as I always did. I eat what I want, without dietary restrictions. I enjoy wine with dinner several nights a week. As for Mike, he says he says he feels better than he has in years. He looks great, too. For me, being able to live a normal life with my husband is beyond price.

So for anyone considering being a living donor, I'd say: Go for it. I've heard that some donors have episodes of depression or doubt afterward, for whatever reason. I didn't, so I can't speak to the experience.

However, I do have one piece of practical advice. The transplant center will follow the organ recipient as long as the organ is functioning, but you're on your own after the surgery. Get copies of all the medical evaluations you go through for the transplant, and all the hospital records, and give them to your regular doctor. He or she will be the one who has your health, rather than the recipient's, foremost in mind. The records are your baseline, against which any deterioration in kidney or other physical function will be measured.

Over the years, many thousands of living donors have given up kidneys for loved ones, or even strangers. The procedure has a long track record, and the risk of serious after-effects is low -- but not non-existent. So take care of yourself, too.


All information provided in this site is offered for educational purposes only, and it is not intended nor implied to be a substitute for professional medical advice. Always consult your own physician or healthcare provider with any questions you may have regarding a medical condition.

 

 

 

 

 
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