Jeff: A Living Donor’s Experience
Jeff, a 34-year-old living donor, shares what he went through when donating a kidney for his brother Mark, who is 38.
My brother has had type 1 diabetes since he was 12 years old. My family knew he might have kidney failure someday. But it happened a lot sooner than we expected. One day his creatinine levels jumped from 2 to 6.8. So, we got slapped in the face with the reality that he was going to have to go on dialysis.
As soon as my sister and I heard the news, we said "OK, let’s find out if one of us can be a donor." There was no hesitation at all. My sister and I actually had a contest going as to who was going to win and get to donate.
The Tests and Exams
Both my sister and I turned to the University of Chicago Medicine for blood tests and found out that our blood types were compatible with Mark’s. Then, we came back for a genetic blood test, called a human leukocyte antigens (HLA) test. Mark and I matched six out of six, which is the best possible match. So, my brother was basically my genetic twin. My sister matched one out of six. So, I ended up being Mark’s donor.
After that, I had to go down to the University of Chicago medical campus five or six more times for tests and exams. They wanted to make sure my kidney was going to work in Mark and my body was going to be OK to handle it. I met one-on-one with the transplant surgeon and had an EKG, a CT scan, and other tests. They also took a lot of blood. The whole process took about 2 months or so.
I was very happy with the way the doctors and nurses prepared us for surgery and let us know everything that was going on. They also gave me ample opportunity to back out of the donor surgery if I wanted to. When I met with the surgeon, he said point blank, “If you don’t want to do this, it’s OK. A lot of people wouldn’t do this.” But I didn’t want to back out. I said, “Let’s do it today. I’m ready.” I saw my brother having to go through dialysis and it’s awful to see someone go through that. I wanted to help him as soon as I could.
My wife was very understanding and supportive about my donating a kidney. We have two kids. So, we worried at first about the possibility of one of our kids needing a kidney one day. I wouldn’t be able to donate to them if I gave my brother a kidney now. But we decided that the chance that either of our children would ever need a kidney was very small, about 0.01%. And even if it does occur, I might not be a suitable donor. So, we decided not to worry about that because I had a chance to help my brother right now.
In the Hospital
Our surgery was scheduled for 7:30 a.m. Before the surgery, I couldn’t have anything to eat or drink for about seven hours or so. I checked into the hospital that morning, and they brought me into the preoperative room. I don’t remember much. I remember getting an IV put in my arm, and then I fell asleep.
They told me the surgery would last between three to five hours. Mine lasted five. They said my surgery went incredibly smooth because of my age and my good health. The first thing I remember is waking up in the recovery room. I looked over at the nurse and said, "We need to get this surgery going cause I’m in a lot of pain." And she said "It’s already over." I couldn’t believe the surgery was done. To me it seemed like only a minute had passed since they put me out. Right after that I fell asleep again.
The next thing I remember is waking up several hours later in my hospital room in a lot of pain. Thank God for morphine. I couldn’t hit the button on the pain pump enough times. The nurses had to up the dosage of my pain medicines. About a day and a half after the surgery, I got off the morphine and switched to pain pills.
I was actually in more pain than Mark after the surgery. He was on his feet the next morning and walked down to my room. We were on same floor but on different ends of the corridor.
I started eating fairly quickly. I wasn’t real hungry because my stomach hurt so bad. But I was able to eat and keep food down. But I never had any nausea or other side effects other than pain. I think they started me out on Jello and soup. But after that I was on a completely nonrestrictive diet in the hospital.
For a day or two, I had two IVs and a catheter. Being a male, the removal of the catheter is not a pleasant experience at all. My nurse was really good. She said, “Look away” and boom, it was done. So it was probably 5 minutes of pain and discomfort, and then everything was back to normal.
About two days after the surgery, the nurses got me up on my feet and moving to the bathroom. Once I got up, I tried to walk as much as possible. I knew that the quicker you can get up and move, the better and faster your recovery is going to be. So I pushed myself to walk the hallways. Walking hurt in the beginning. I felt like Grandpa Jones shuffling my feet. But it’s important to work through the pain as much as possible.
I got out of the hospital three days after the surgery. I stayed at my parent’s house for a week and a half. My kids were five and six months at the time. And I was worried my five year old would be jumping all over me wanting to play. So I thought it would be best for me to recover at my parent’s.
That first week I slept a lot. Mark came by to visit every day. He lives very close to my parents. His recovery seemed to go about four times easier than mine. He’d come over and tease me, saying "Hey man, you look like hell."
I planned on going back to work in two weeks. I have a desk job so it’s not like I do physical labor. But that first day back at work, I was only able to work for three hours, and I was beat. But it got better each day. I was back at work full time three weeks after the surgery.
Seven months after the surgery, I’m back to my normal activities. I run and golf for exercise, play around with my kids, and have a few beers on occasion. I am having a little trouble with my incision scar. The transplant surgeon thinks I may be having an allergic reaction to the material he used to sew me up. Part of the incision swells up and hurts when I’m stressed or do any heavy activity. The surgeon says the discomfort should go away once the stitches completely dissolve. This is not a common problem from what I understand.
I’ve also found out that I have Raynaud’s disease, which is a disease that affects the circulation and causes your hands to be cold all the time. Physicians from the University of Chicago Medicine think I had the disease before my surgery but didn’t experience any symptoms. Then, the stress of the surgery and donating a kidney might have caused the disease to escalate and become noticeable. It’s not a big deal. The Raynaud’s isn’t affecting my lifestyle. But other donors might want to know that giving up a kidney can cause a lot of temporary stress on the body, which may cause other health problems to suddenly arise.
Looking back on the whole donor experience, I’d do it again in a second. I’d even do it for a stranger. It’s a small sacrifice when you think about it. My relationship with Mark hasn’t really changed. We were very close before the surgery so I can’t say we’ve gotten any closer. We joke around about the whole experience. I kid around and tell him he has to do whatever I say now.