This story was told to me by Jennifer via telephone.
Jennifer was living in Alaska in the 1980s when she first discovered that her sister, Susan, had developed kidney problems. Susan had been a severe diabetic since her twenties, but she’d gotten by well enough until her kidney function began to decrease. Concerned for her sister’s well-being, and certain that she’d soon need a transplant, Jennifer moved back to California in 1986.
The following year, 1987, Susan’s doctors told her to start looking for a transplant donor. Her name was put on the donor wait list, but Jennifer knew her sister couldn’t wait that long. She was determined that her sister have a kidney as soon as possible, and the easiest way to do that was to donate one herself.
“Remember this was 1987. We didn’t have the Internet back then. I just got on the phone and started calling transplant centers around the US, trying to find out everything I could about how transplants worked.”
The transplant, however, would turn out to be a ways away. During a routine scan, Susan reacted to the contrast medium they’d injected into her and had a heart attack right there on the exam table. She went into emergency surgery–open-heart, quadruple bypass–which saved her life. Unfortunately, it also sent her into renal failure.
But Susan still wasn’t healthy enough for the kidney transplant due to the heart surgery. Without any other options, she started hemodialysis.
Her health improved incrementally while on dialysis, except for the renal failure. By 1988, Susan was finally healthy enough for the all-clear. They set a date for Jennifer to donate her kidney to her sister. The procedure was very different from what most of us are used to today.
“They admitted me to the hospital for four days for preop testing. The tests were so invasive. For one of them I had to lie flat on my back for twenty-four hours with sandbags on my feet.”
The surgery was invasive, too. “This was before they used laparoscopes or any of that stuff. They made a full incision from front to back. Even with an incision that big, they still had trouble getting to the kidney, so they removed a rib. I won’t lie; it hurt real bad! But it was only for a couple of weeks, and that was worth it to save my sister’s life.”
Worthwhile, it certainly was. The transplanted kidney began working before Susan was off the operating table.
Jennifer’s recovery was difficult at first, but not more so than she’d expected. Knowing she didn’t deal well with pain medication, she requested to be put on a floor separate from her sister–usually the opposite of what people request when donating. “I’d had surgery before and I knew I’d have a bad time. I didn’t want my sister to see me like that. It would’ve made her feel bad, and that wasn’t the point of this.”
Susan experienced no rejection episodes following the procedure. She returned to a relatively normal life, save her complications from diabetes, relishing the time she got to spend with her grandchildren. Then, some ten years after the transplant, more bad news came: Susan was diagnosed with chronic myeloid leukemia.
Jennifer figured that after donating a kidney, donating bone marrow should be no problem. She and Susan went to Stanford University to begin the marrow donation process. There, Susan was dealt another blow: The pre-treatment for a bone marrow transplant would likely cause her kidney to shut down. They would have to find another method of treatment.
Most of the treatment came in the form of unpleasant medicine, but Susan managed her illness well for eight years. Then, sometime in the early aughts, complications from her diabetes resulted in another heart attack, and Susan finally succumbed to her health issues.
“I have no regrets,” said Jennifer. “Never have, never will. “It’s not a perfect world, and sometimes we have to settle for less-than-perfect endings. To me, my sister’s story is a success story. She lived twelve years longer than she would have without the transplant. That’s better than none.”
As for Jennifer, she resume activities like skiing and white water rafting in the spring following the surgery and continued to do those things for years. “The one thing I said was, just because I was donating kidney, that wasn’t going to stop me from doing anything I wanted to do.”
Asked if Jennifer had any thoughts about how the process could be better, she said, “They need to do a better job informing donors [of all the risks]. It’s not an easy process, and you’re making a decision that could effect the rest of your life. You don’t want to have regrets about that later on.”
Jennifer’s story is an example of what is, to me, incredible perseverance and optimism. As she told me all of the complications her sister ran into–the heart attack, the leukemia–I thought, “How are either of these women holding it together?” But Jennifer has a strong will, and I suspect her sister did as well. It’s something that inspires and encourages me when I think of the hardships that fell upon me during and after the donation process. Life isn’t perfect, and sometimes we have to settle for less-than-perfect endings. That’s a resonant truth I still need to embrace.
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