Once again, I was clueless. I didn't know anything about kidney disease. I just knew that my cousin was dying.
Even though dialysis was an option, Denise's doctors were concerned that she wouldn't survive very long. On top of having Celiac disease (severely allergic to gluten), she was suffering from PKD, Polycystic Kidney Disease. PKD is a genetic disease that causes a rapid, irreversible, painful, decline in kidney function. In order to start dialysis, Denise would have to add a renal diet to her already restricted food plan. In order to get on a waiting list for a kidney, she would have to start dialysis. The average wait time is 5-10 years.
Many family members were ruled out, because they carried the PKD gene. Denise's husband had been tested. Even though he was a "match," he was declined as a donor. The doctors had determined that donating a kidney might compromise his health.
So, I offered to get tested. I had no idea how little I knew.
First, the entire donor process is confidential. Every person involved is required to tell potential donors that they can change their mind at any time. No questions will be asked. Most kidney transplants are done as a laparoscopy. In other words, donors usually end up with three or four small incisions. Hospital stays average three days. The recipient's insurance covers the evaluation and transplantation costs.
For most transplant centers, there are three phases: phone contact and questionnaire, a multi-disciplinary team evaluation and a panel review.
I was surprised to learn that I wasn't too old and met many of the first phase criteria: between 18-60 years old, good health, free from high blood pressure, diabetes, cancer, kidney or heart disease. Testing is not just to see if a donor is compatible with the person waiting for a transplant. Everything is done to make sure that no harm is done to the donor. Along with my health, I was asked about my family's medical history, my support system and responsibilities.
I would need to be willing to travel for the transplant. If I wanted to have my testing done here in Georgia, it might take months. However, I was told that if I went to Massachusetts, they could arrange for all of my testing to be done in one week.
This would be a great time to interject a dramatic sign from God. Movie directors would stop all action, include a gentle tear-jerking melody. The scene would include me in fervent prayer, on my knees while angel whispered, "You're the one. Go to Boston."
That didn't happen. Quite the contrary. Many friends and family members thought that I was crazy. I don't know how to describe it, but at that point, I knew that I was supposed to go. Regardless of the outcome, I had to try.
The next step was discussing the process with my M.D., Dr. Grace Loy. I was relieved when she encouraged me to see if I was a match. Most of the requested lab information was already on file. At this point, they needed my medical history, blood type and cancer screening tests (mammogram and the ever loving colonoscopy).
All test information looked great, so I headed to Boston. My cousin, Denise and her family welcomed me into their home. We spent a lot of time catching up. After seeing her and learning about how was feeling, I was more determined than ever to be her match.
My week was slammed with appointments. It started with an orientation. The donor advocate presented a program to explain the entire process and all of the possibilities. She said that a decision wouldn't be made until the donor team met to review all of my information.
There were chest X-rays, EKGs, blood tests, and many consultations.
Along with the tests to make sure that I was physically prepared, I met with specialists to address psychosocial factors. The psychiatrist interviewed me to make sure that I was mentally prepared if something went wrong. A social worker made sure that I had enough sick days for recovery (four to six weeks) and insurance to address any needs following donation.
By the end of the week, I think that I had the most thorough exam in my life. I secretly hoped that someone would say something unofficial to let me know that I was a match. I still had a lot to learn.
The last phase of the donor evaluation is done by a panel of all of the specialists. At Massachusetts, they meet each week to review the cases. When my case came up, the panel included the social worker, transplant coordinator, nephrologist, donor advocate, psychiatrist, and donor surgeon.
I got the call in September. I was approved as a donor, I called Denise. I couldn't believe that it was happening. The transplant was scheduled for December 30.
Stay tuned for the next episode, "The transplant."