A Living Donor’s Journey

My story gives voice to a journey through five transplant centers to be a donor for a spouse’s second transplant. I married a man who carried a deadly genetic renal disease called Alport’s Syndrome. All his male relatives back to 1900 died by age 28 from this type of glomerulonephritis. He would have died in 1973 had it not been for the passage of Medicare coverage for people with renal failure. After 15 months of stressful home hemodialysis, my husband, Jim, received a deceased donor kidney. There were many problems with the new kidney, and he was hospitalized for six weeks. The mortality rate for new transplants was high in 1974, and several lives were lost among fellow patients on the transplant floor. Jim was fortunate. He survived and did well for almost 29 years with his first transplant.

By the summer of 2001, it was apparent that Jim’s kidney function was deteriorating. His nephrologist asked, “Is there anyone you know who could be a kidney donor for you?” That’s a tough question for a person with a genetic disease in their family. “I want to be tested,” I said. My husband of 33 years was shocked. He had never asked me, and he told me he would never ask anyone to be a donor.

I was a health care professional working in the renal field. I had educated many people about dialysis and renal transplant, and had often taught people about potentially being living donors and what was involved with testing and surgery. I had observed that with transplant there seemed to be two main outcomes: either extremely positive or extremely negative. Educationally, I felt I was prepared for being a living donor. I embarked on my journey with optimism and great hope, despite knowing the fact that only about 1 in every 10 people who attempt to be a living donor are accepted. The most important test to me was the crossmatch. My husband and I were informed that our cells were “happy” together. After that elation, though, things began to get rough for us. I was in for a difficult journey that would last two years and include five transplant centers before surgery could finally be done.

It was about the time of 9/11 that my evaluation came to a crashing halt at the transplant center where my husband was receiving nephrology care. I had done the testing to determine I had good renal function, no diabetes or hypertension, and a good EKG and chest film. Then they noticed something on my history form. I listed VonWillebrand’s disease (VW) as a prior medical problem. VW is a problem with lacking enough of a protein that helps platelets to work correctly to clot the blood. I was given DDAVP once before a surgery, and I had no bleeding problem. I think I downplayed the VW and thought I would be fine since a product existed to make surgery safe for me. I didn’t give full thought to the facts that DDAVP might cause a recipient’s kidney to clot off if given before surgery or that if I had any bleeding problem, it could risk my life. The door to donation there was closed. The transplant surgeon would not even give me a 15 minute appointment. I felt crushed and feared for my chances to be a donor.

By December of 2001, we went to another major transplant center. The primary concern we had was whether they would find me acceptable as a donor. I went through every conceivable test, even colonosocopy and cystoscopy. At the CT scan “What ifs?” filled my mind as I fought back fears of possible bad things they might find such as cancer. I knew of people who tried to be donors and were found to have things like breast cancer or other problems. I had always thought it was good that those tests helped to save their lives even though they had the heartbreak of not being able to be donors, but I never processed the fear that something bad might be discovered in me...