My motivation to become a kidney donor began when I first heard about living donation as my husband, David, began the process of being evaluated to be on the transplant list. All I knew about donation was the occasional story I would hear about a brother donating a kidney to another brother. I thought only close relatives could donate, and then only if they were a perfect match. I was wrong. Part of my husband’s education about being on the transplant list was learning about living donation. It was during our video presentation that I learned about matching blood types and the paired exchange program. I took the information and application for becoming a living donor, but I did not look at it until a few months later when my husband’s kidney function deteriorated. Up until this point, David had been doing well and it took five years for him to go from 30 percent functioning to 20 percent functioning, so I thought we had maybe five years until he would need a transplant. Again, I was wrong and within three months he went from 20 percent to 14 percent functioning. Suddenly it became real for me that my husband needed a transplant. Without a transplant soon, David would need to be on dialysis. We both knew the devastation of kidney disease and the toll dialysis takes, as both of David’s parents, Jewish immigrants from Germany, had kidney disease that progressed to where they both went on dialysis for varying lengths of time, until their death. David needed a transplant. David’s brother was ruled out as a possible donor because he too has kidney disease and is under the care of a nephrologist. Our children wanted to donate, but could not be considered because of the strong family history.
At this point, I knew I wanted to find out if I could be a living donor and participate in the exchange program, as I knew my blood type, A+, was not compatible with David’s O+ blood type, and that I could not donate to him directly. I learned that in the exchange program my kidney would go to someone compatible with me, and that David would receive a kidney from someone who was compatible with him.
I made the decision to go forward to see if I could qualify. I met with a living donor coordinator at St. Barnabas Hospital in Livingston, New Jersey, who told me my history of high blood pressure was an issue, and could disqualify me from going any further. I was devastated. I knew my general health was good, as I had lost a significant amount of weight, maintained the weight loss and exercised regularly. I discussed going off my high blood pressure medication with my doctor, and I did. As the months went by, my blood pressure was monitored, and I saw a cardiologist. I had a 24-hour blood pressure monitoring test. I was sure I failed, as I was so nervous every time the cuff took my pressure, but I passed with flying colors! I went through all the additional testing, including repeating the 24-hour urine collection. That was not fun. I did eventually appreciate all the testing and was confident that I knew I was getting a very thorough evaluation to determine if I was healthy enough to donate. I was elated to find out that I passed and was placed on the national registry, but disappointed to find out that due to David’s blood type and my age, 66, it would be at least a year before a match would be found.
This journey has been a roller coaster of a ride with many emotions. First I was told that I could be compatible with my husband if I had the right type A+ blood. I was tested and did not have the right type. Then it was discussed that there is a procedure where my husband could go through a process to be desensitized to receive my kidney. It was determined that he was not a good candidate for this procedure. All of this we found out as we began the journey of being listed at multiple centers for transplant. We met with Renewal and launched our kidney campaign, emailing our friends, business associates etc. We made up flyers and distributed them to synagogues throughout New Jersey. I attended meetings of all sorts and spoke about my husband’s need and about living donation.
In November, we got a phone call from St. Barnabas that we could be part of a chain. My kidney would go to a man in Ohio, David’s kidney would come from a woman from Indiana, and the chain would continue involving five couples. We were number one and two in the chain. Then came the second call, the crossmatch of my blood and my recipient’s blood was positive, meaning he had antibodies and would likely reject my kidney. The transplant was cancelled and the entire chain fell apart. We were very disappointed and began to realize that this journey would not be a smooth one and that many disappointments could happen.
David’s kidney function continued to decline, and he had to have emergency dialysis after being admitted to the hospital in January of this year. It was there in the hospital when we got the call from Renewal that a match had been found for him. He had his transplant on February 21. That’s when my motivation to donate became even stronger. We were fortunate to meet David’s donor, Yosef, and his wife, Gitty, before surgery. Yosef told David that his father- in-law was very ill and that he could not do anything to save his father-in-law, but that he could do something to save another father. Words cannot express the gratitude our whole family felt meeting them.
Much later in the waiting area, after hours of waiting, I sat with Gitty and we talked.
I was overwhelmed that here was this woman who supported her husband’s decision to donate his kidney to save a life, and it was my husband’s life. I was convinced more than ever that I wanted to give the gift of life too and bring happiness to another family.
As David’s main caregiver, I wanted to be available to help him for the first four weeks of recovery. Then I called Renewal and told them I was ready to donate. The initial recipient that was found for me had complications, and was not able to have a transplant on the scheduled date. Another recipient was identified. We were scheduled, and I went through all the pre-op testing, only to get a call that this recipient also was not able to have a transplant. Since I did not have a recipient waiting for me, I told Renewal that I would like to wait until after our daughter’s wedding to donate.
David is doing well and his new kidney is working beautifully. We had our daughter’s wedding on July 3 and he was able to dance and enjoy. Now I was ready to donate my kidney. Many people asked me if I was still considering donating since my husband already got a kidney. I never questioned whether I would donate…it was just when. Surgery was scheduled for July 18. I was told that my recipient, a father of five, was on dialysis and had diabetes. He had come close to having a transplant, but it never happened. I was his last hope. Both surgeries went well and we are both recovering. I look forward to meeting my recipient soon.
I never felt any pressure from Renewal to donate. I was the one who initiated the phone call to donate after my husband’s transplant. When I elected to wait until after our daughter’s wedding, I felt supported in my decision.
I experienced first hand how a kidney from a live donor can save a life. I feel very grateful that I have the health to donate and that I could give the gift of life to another person.
By Gail Salomon