Did you know?
According to the National Kidney Foundation, there are 123,000 Americans on the waiting list for a lifesaving organ. More than 101,000 are awaiting kidneys, but only 17,000 will receive one each year.
Deanna lives in the Chicagoland area, raising her family not far from where she grew up. Bob, who was diagnosed years ago with kidney disease, was a childhood classmate of hers. While they had been in touch over email for the past decade, he never mentioned his illness, nor had they seen each other in person since 1989. When Deanna discovered he needed a kidney transplant, she decided to pursue being his donor. I asked her to share her thoughts about the process, her family, and what she learned throughout.
She hopes her story will inspire others to consider giving this life-saving gift.
How did you initially find out that Bob needed a kidney transplant?
This past summer I was planning our class reunion, and he told me for the first time about his struggle with kidney disease and his need for a transplant. He wondered if anyone in our class might consider donation, and he asked me to share his news with our classmates. I was completely surprised by his email. We had been in touch for over 10 years, and he had never shared that he was diagnosed 15 years ago with kidney disease.
What made you consider donating?
I knew right away that I wanted to try to be a donor for him. Admittedly, I had never before considered anything like this. But I knew he needed help, and I just knew I could do it. I felt like God had blessed me with a healthy body, and if I could donate, then I should. I felt like this opportunity just came out of nowhere. A friend needed help, and I could fix it.
What was your decision process, and how did your family react?
I spoke to my husband, Brian, that evening to tell him the story. He said he would support me if I felt that was the right thing to do. My decision was made.
Brian was solid and supportive. I did not tell my children for several months because I didn’t want them worrying about something that might or might not happen. When I finally told them, they were supportive. In fact, my daughter, Hannah, quickly became my biggest cheerleader. She wanted to know the details and she checked in on me emotionally. She was great. My son Matthew, didn’t ask many questions until just before I left for Spokane, where Bob lives. Then he was worried about whether or not I would be okay. My parents were a bit reserved at first out of concern for my health, but they were both very supportive.
Admittedly, I had never before considered anything like this. But I knew he needed help, and I just knew I could do it. I felt like God had blessed me with a healthy body, and if I could donate, then I should.
What was Bob’s response?
I answered Bob’s email and told him that I was interested. He said we should talk, so I called him and heard his voice for the first time in over 25 years. It was strange. He was thrilled that I would consider this, and very grateful. He shared with me what he knew about the process, and he submitted my name to his doctor’s office.
What was the physical screening process like?
After Bob submitted my name to his doctor, the paperwork arrived shortly, which I completed and returned. From the time he sent that first email until the time I submitted my application paperwork was about 4 weeks.
From there, it took his doctor’s office almost two months to respond to my application, which was frustrating. I called out there once a week and left messages asking if they had received it. However, when they finally called back, the process was speedy.
First, I had apparently passed the paperwork screening. Then I had to pass the psychological/social evaluation by talking to a social worker for about 90 minutes. Next, I had to pass a blood test. I had my blood drawn into special vials, and those were shipped out to Spokane. He had his blood drawn that next morning, and our bloods were mixed to see how they reacted. It took about a week to find out that we were a match. Then I had to pass some kidney function tests here, and I had to get a complete physical.
Finally, I was asked to fly to Spokane to meet with his medical team. My Mom traveled with me so Brian could stay at home with the kids and keep their routine. Also, my Mom would be able to see the hospital, the doctors, and Bob, and she would be much more comfortable when I went with Brian for the transplant and she stayed with my kids.
Emotionally, how was the screening process?
None of the tests were difficult physically. They just seemed tedious because I just wanted to get on with it and get the transplant scheduled. Flying to Spokane by far was the most emotional part of the whole thing. I knew I wanted to be Bob’s donor, and I never wavered from that point. But flying out there to see him was my biggest emotional hurdle. I hadn’t seen him in so long, and I knew I no longer looked like I did when I was 19. I would meet his wife. These were strange circumstances for a reunion. I was excited and scared and nervous all at the same time. When he picked us up at the airport, we began a 48-hour journey of meeting each other again for the first time as adults – and we did most of that while sitting in a hospital while I went through more testing.
Being a living donor provides gift that the recipient cannot get any other way than through your selflessness, and a gift that cannot be measured in any other way than love.
What was the outcome of your final screenings?
The testing in Spokane went really well; I was deemed very healthy and a good match. We just needed the medical team to get all the test results together at the same time and approve the transplant. I was so confident – I hugged him and told him how excited I was that this was going to work!
Once I returned to Illinois, however, they asked me to take another kidney function test, so I did. Then they asked me to go for another nuclear medicine study, but they couldn’t find a hospital anywhere near Chicago that could do it. I was so frustrated by the delays. I kept Bob informed because team couldn’t tell him anything because of HIPAA laws.
Three weeks after I got back from Spokane, they finally called to tell me that although my kidneys worked fine for me, the tests suggested that if one were removed, my remaining kidney may not be able keep up alone. Therefore, I could not donate. I was absolutely crushed.
I felt like I had failed Bob. I had his hopes up, he spent his own money to cover my travel to Spokane, and all of the medical tests went on his tab with the hospital. I asked the nurse to call Bob and tell him because I knew I couldn’t do it myself just then. When I finally spoke with him two days later, I could hear the disappointment in his voice. I reminded him that I was still on his side, and now that I had been through this much with him, I wanted to stay in touch and know what is happening. I’m one of the few people who understands his medical condition. I’ve met his doctors and nurses, and I’ve been to his hospital.
Where do things stand for Bob now?
So far his numbers have remained steady, and he has not yet started dialysis. A transplant is most successful when the kidney comes from a living donor and is received before dialysis begins, which is why I was such a good option. He has since gotten one call for a deceased donor kidney. He was on standby all day, but in the end the kidney was not suitable for transplant. He keeps his bag packed and stays near a phone so he can be ready if that call comes. His few family options have been exhausted. He has reached out to friends and coworkers, but so far there are no matches. When his kidney function drops low enough, he will be forced to begin dialysis. Meanwhile, he works his way up the transplant list.
What lessons did you learn going through this?
I was reminded that God has a plan, and no matter how badly I want it to go my way, it’s not my plan, it’s His. That was a tough lesson to learn, and I still do not understand why I can’t be the donor. I learned that I have a lot of people in my life who are willing to support me in ways I didn’t even realize. I learned that I am strong enough to do the things I never thought I could do.
Anything else you would like to share with others?
Consider being a living donor. The doctors are very thorough and will only allow a donation if it does no harm to the donor. Being a living donor provides gift that the recipient cannot get any other way than through your selflessness, and a gift that cannot be measured in any other way than love. I’m still looking for a donor for Bob and would gladly talk to anyone who might be interested.
Want to learn more about organ donation?
UNOS (United Organization for Organ Sharing)
US Department of Health & Human Services: Living Donation