Last July (2009), during my visit to a nephrologist (kidney doctor), I explained that I was trying to donate my kidney to someone who had been on the waiting list for 8 years, at that time. The doctor was shocked to hear that she had been on the list so long and explained some statistics to me. He said that the number of people on the waiting list for a kidney for 1-2 years is about 20,000 nationally. Those waiting 3-5 years are closer to 15,000. After 5 years, there are about 10,000 people. “These numbers seem good, right? Like there are fewer people who have to wait that long for a kidney,” he said. I agreed. “What you don’t understand is that this number decreases, not because all these people are getting kidneys, but because many of them don’t make it that long. You need to realize that you are saving someone’s life.”
My friend’s mom Debbie had complete renal failure after a delayed diagnosis of Wegener’s disease, a rare autoimmune disease that attacks all systems of the body. She was able to take medicine to get the Wegener’s under control, but not before her kidneys shut down. She was put on the transplant list and started dialysis treatment for 3 hours a day, 3 days a week.
I had heard my friend talk about the situation, never with too much detail, but another friend Cindy and I would ask about it from time to time. We knew Debbie was on the waiting list for transplants and that there had been no donor matches. In the back of my mind, I wondered if I should get tested, but kind of dismissed the idea, thinking I would never be a match since I wasn’t related, and I didn’t even know my own blood type. Still, the thought kept crossing my mind. Cindy was feeling the same way.
In December 2008 Cindy and I went to see the movie Seven Pounds, the story of a man trying to reconcile his mistakes by donating all of his organs, including his heart (which of course results in his own death) to save other people. Yes, it was depressing, but it brought the idea of a living donor transplant to the surface of discussion for Cindy and me. She immediately started doing tons of research, reading articles and books, talking to donors and the National Kidney Foundation, all along informing me of her findings and forwarding articles to me. We learned that being related wasn’t a requirement, that donating your kidney was relatively easy to recover from, that the other kidney would grow to replace the function of the lost kidney, and that a donation from a living donor had a much higher success rate than that of a deceased donor.
We were interested. But we still didn’t know our blood types, which would be the first step in eligibility. So we ordered a home testing kits. We were both O+, the right type for Debbie. Cindy decided she was going to take the next step and filled out the paperwork for tissue matching by our regional transplant team. She was tested in March 2009 and was devastated to learn she was not a match. She said she had felt all along that she was doing the right thing, but couldn’t understand why it would result in failure. The transplant coordinator explained that finding a match for Debbie was exceptionally difficult because she had so many blood transfusions and surgeries that her body’s “profile”, made up of pairs of antigens, had become more difficult to match.
But Cindy’s efforts were not in vain. The research she had done was something she included me in, and I was now considering the possibility of being tested. I might not have come to this point if she hadn’t taken the initiative. In April 2009, when Debbie had been on the list for almost 8 years, I was tissue-typed. I didn’t tell anyone I was going since I knew the results were likely to be a disappointment. I had decided that if I was a match, it would not be by accident. A few days later, I got a call saying that I was a 5/6 match, which means that 5 out of 6 of my antigen groupings matched Debbie. A 6/6 match is the best and usually shows up in 25% of siblings who are matched. So as the transplant coordinator said, it was incredible that I was a match. She was so unsure about it that she ordered a second round of more detailed testing along with my cross matching, just to be sure. Again, I was a 5/6 match and my cross matching determined that her cells would not attack mine which meant we could move forward with the process. (http://www.aakp.org/aakp-library/kidney-transplant-matching/)
When I got the news, I was excited and a little nervous. So far, I had told no one, but in order for me to continue the process, the transplant team requested that I tell Debbie. I wanted to remain anonymous because it would be easier for me to deal with. I had to decide if I was ready and willing to go through with this or not. Like I said, at this point I was convinced it was not an accident, it was a God thing or something like that. I told my husband, my friend, and Cindy, and all were very supportive. I had a harder time convincing my family, especially my mom, who was convinced I was going to ruin my life. My dad and sisters warmed up to the idea gradually.
There was a lot of testing involving pee. A pregnancy test every time I had blood taken. On three separate occasions I collected my urine for 24 hours and kept it on ice. This included one day that my friends and I participated in the Kidney Walk, and I had to keep the brown jug in a cooler. Typically you only have to do this once, but one time the lab had made a scheduling mistake, and another time my creatinine levels were a little low. For another test, a lasix scan, I was pumped full of fluid until my bladder felt like it was going to explode and then made to wait 15 min until my kidneys fully flushed all the liquid. I have never had to pee so bad. I was convinced I was going right there on the table. Another test injected some chemical that made it feel like I was peeing, but wasn’t. They warned me first. It was mostly a warm sensation, but very weird.
From all those tests, they determined that my left kidney, which seemed to have slightly higher function, would be the kidney that they were taking. My nephrologist, the one I mentioned earlier, recommended that they take the right kidney and leave me the higher functioning one. But the results of other scans made that an unlikely option. I am one of 10% of people who have more than one artery connected to my kidney, which makes surgery a little trickier because the arteries are smaller and there is a higher risk of clotting. They said that the tests showed I had three arteries on my right kidney and two on my left. The left would be easier to take, and the doctors were more likely to be able to do the surgery laparoscopically, saving me some recovery time and a foot-long scar. I guess if you’re going to give someone a gift, you might as well give them the best you’ve got.
The tests seemed to take forever. I was hoping for a surgery in early June, then July. In late July, Debbie had something like a TIA, a mini-stroke. The doctors were unsure what caused it which slowed the process to a stand-still. I was still hoping for a late August date when we met with her surgeon the first time. My husband, sister and Cindy were with me. We thought we were finally getting the ok, but instead, the doctor laid out a solemn case for us. He didn’t know if the odds were in our favor, thought the procedure very risky, and needed Debbie to do more testing in any case. He wanted to make sure I understood that though there wasn’t an increased physical risk to me, the emotional risk would be much higher because there was a good chance it would all go wrong and she could die on the operating table. They said she had a clotting problem and when combined with my smaller, multiple arteries, there was a bigger risk to her. It was a very emotional meeting. Tension permeated the room. My sister asked me to reconsider.
When faced with this dilemma, I had to reevaluate what I was doing. I wanted my friend’s mom to live; I didn’t want to be the cause of her death. For Debbie, it was a risk she was willing to take. Throughout the whole process, she was convinced that this was her miracle. The mere fact that I was a match was proof enough. I was amazed at her strength. She was always speaking positively, in faith, despite the doctor’s gloomy forecast. If she and her family were willing to risk the physical outcome, I would risk the emotional outcome and hold to the conviction I had at the beginning of all this. This was no accident. God was somehow orchestrating these events. It was a leap into the unknown, for sure, but that’s what faith is about.
We met with the surgeon several more times, each time thinking, “This is it,” only to be given a list of procedures Debbie needed to have done before we could move forward. They were stalling. I was angry. At the end of April 2010, over a year into the process, we met again. And as usual, Doctor Gloom-n-Doom (who I later grew quite fond of) was repeating to us the same risks we had heard every time. He said, “I need you to tell me you understand these risks and still want to proceed.” Debbie said she was willing, to which he responded, “I know you want to go through with this but I need to hear it from her.” I was ready. I had been in this for a year and was not backing out now. My mind was made up. I proceeded to unload my frustrations on him at the constant delay in the process. I think he really did need to hear that. The transplant team told me later that they could read the aggravation on my face. He acknowledged that they had indeed slowed the process to make sure I was ready. The doctor said, “One more test.” Then they would meet again as a committee and let us know.
Pre-op was the Tuesday before surgery. We were there from 8am-3pm. 16 viles of blood, pre-op teaching, meeting both surgeons, filling out more paperwork, and meeting with the anesthesiologist. Long day.
