Carmen's Pre-Transplant Experience
Carmen is a 68-year-old recipient of a deceased donor kidney. Below, Carmen shares what she went through while waiting for her transplant.
When I was diagnosed with end-stage kidney disease, my doctors put me on hemodialysis three times a week. About three months after I started dialysis, I called the University of Chicago Medicine for information about getting a kidney transplant. The hospital was approved by my insurance, and it was the closest transplant center to my home in Indiana. I also called a kidney transplant program in Wisconsin because some people said I would have a better chance of getting a kidney if I got on the waiting list at to two transplant centers in two different states.
So, I had to complete the pre-transplant tests and evaluations for both hospitals. There were lots of tests. They tested me for AIDS, cancer, and all kinds of diseases. They wanted to make sure that once I had the transplant and I started on the immunosuppressant drugs, I would not start getting sick or develop another disease. They wanted to make sure I was healthy other than having kidney disease. I had some of the tests, such as a colonoscopy and a Pap smear, done near my home. Then, I spent an afternoon at the University of Chicago getting some of my other tests and evaluations done. The University of Chicago Medicine was able to coordinate some of the tests and evaluations with the Wisconsin hospital.
About a month after I went to the University of Chicago for tests, I found out that I had been accepted into the Hospital’s kidney transplant program. Then, I was placed on the waiting list for a deceased donor kidney. I did try finding a living donor. I have two brothers, but they both have high blood pressure. So they could not donate. A few people through my church offered to give me their kidney. But for various reasons, they could not donate. For instance, one man who volunteered forgot he was taking blood pressure pills.
While I was waiting, I tried to stay as healthy as possible. I followed whatever directions the doctors and nurses gave me. I didn’t even think of skipping any dialysis sessions. Even if there was a snow storm, I would make every effort to go. And I was very good about not drinking too many fluids. After I got my transplant, one of my friends teased me, saying "Oh, you were lucky because you followed all of the rules."
I went on a vacation to California for several months to get away from the cold winter here. I was a little worried about being away for so long in case a kidney became available. So, I called my pre-transplant coordinator to see if it was OK for me to go. She told me that it was probably too soon to expect a kidney. So, I went on vacation without worrying. After about two years of waiting, I was prepared to be on dialysis for life. I felt pretty good as long as I went three times a week. But it was not a pleasant experience. Some of those technicians were not always skillful in getting the needles in. It could really be a painful procedure. I tried to keep my hopes up that I would receive a kidney.
And then, suddenly, two years and eight months after I was put on the waiting list, I got a phone message from my pre-transplant coordinator at the University of Chicago. I was surprised when I got the recording. I had just come home from church and here was this recording from my pre-transplant coordinator. She said, "Call this number because we have a kidney for you."
I didn’t know what to do at first. I was so excited. First I called my neighbor, who is a very good neighbor. She’s always taking me places when I cannot drive myself. Luckily, she was home and could drive me to the hospital. But she wasn’t too sure where to go. So, I called another friend who had accompanied me to the University of Chicago medical campus before. And, thankfully, she agreed to come along, too.
My pre-transplant coordinator said we had to be at the hospital within two hours. I quickly put some stuff I thought I would need in my suitcase. I had packed for the hospital when I first signed up for a transplant. But that was over two years ago, and along the way, I had slowly taken stuff out of the suitcase. So I had to throw stuff into the suitcase quickly. And then my two friends and I left for the hospital.
Carmen’s transplant surgery and recovery went very well. She thanks all of the people who prayed for her recovery. Carmen has this advice for people who are waiting for a transplant: "Just keep up your hopes and, above all else, keep up your health."