My surgeon, Tiffany Anthony, and me before surgery
In the summer of 2012, my cousin Kim posted on Facebook that a friend of hers, Ace, needed a kidney transplant from someone with type O blood and she wasn’t eligible. (See my previous post for statistics about the need for donors, facts about who can donate, and info on how it works.) I knew a little about kidney disease. My Grandpa Bud was on dialysis for the last couple of years of his life, so I’ve seen what a pain it is and how much of your life it eats up. You have to go to the dialysis center and be hooked up to a machine for several hours 3 days a week and eat a very restricted diet. You’re tired and in pain, and it’s hard to keep a job. Most people only live 5-10 years once they are on dialysis. I think because of my grandpa’s age and other medical conditions, donating to him wasn’t an option. I knew living kidney donation existed, but I guess I didn’t seriously consider it until someone asked me to.
Grandpa Bud and me
I’ll try to make a long story short. Ace wanted to receive his transplant at the Mayo Clinic in Minnesota because of his previous positive experience there, so I worked with the Mayo Clinic to try to get approved. I will admit, my experience with them was not optimal. Part of that was how long it took, and part was a lack of communication from them, in my opinion. I think our situation was unusual, because usually the recipient works with a local hospital and has already been approved to receive a transplant. I don’t blame Ace for any of the problems. He had a good reason for choosing Mayo, and he didn’t know it was going to take them so long to approve him. Eventually, I was approved to donate and he was approved to receive a transplant, but a “cross-match” test on our blood did not go well, so I couldn’t donate to him. He ended up receiving a kidney from a cadaver and is doing pretty well, so everything turned out fine. I applaud the Mayo Clinic for finding him a kidney and performing a successful surgery. And for the record, I have read only good stories from other people who donated there.
View of Rochester, MN, from the Mayo Clinic
Weird Barnes and Noble, second-most exciting thing in Rochester after the ear-of-corn-shaped water tower
However, I decided that starting over at a local hospital would be easier for me than continuing to work with the Mayo Clinic, so I contacted Baylor University in Dallas to start a kidney donation chain, and things went fairly smoothly. I was approved about 2 months after first contacting them, and they identified a donation chain for me within 2 weeks after that. There was a delay when one of the recipients in the chain encountered health problems, but the four transplants finally happened last week.
This is a really good article about kidney donation chains. Basically, a third of people who have willing donors aren’t compatible with those donors. I had a hard time putting it into words, but according to this article from UCLA Transplantation Services, “It starts with an altruistic donor – someone who wants to donate a kidney out of the goodness of his or her heart. That kidney is transplanted into a recipient who had a donor willing to give a kidney, but was not a match. To keep the chain going, the incompatible donor gives a kidney to a patient unknown to him or her who has been identified as a match, essentially ‘paying it forward.’ A specialized computer program matches donors and recipients across the country.” In my case, I donated a kidney to a stranger. His sister was willing to donate but wasn’t compatible with him, so she donated to a stranger in California, whose loved one donated to someone in Florida, whose loved one donated to someone in Colorado. It’s confusing but really cool, and maybe if more people knew about this possibility, it would become more popular. One person can help a bunch of people.
Very little about the surgery or my recovery has surprised me. The doctors and nurses gave me a ton of information beforehand about how everything would go and what could possibly go wrong, and I did some internet research myself. I’ll be honest about my experience, because I don’t want to mislead anyone. Skip the rest of this paragraph if you’re squeamish. I had been warned that the anesthesia could make me nauseous, and it did. Let me tell you, vomiting with a four-inch cut through your stomach muscles is not terribly pleasant. I knew before the surgery that they would be putting a catheter in my urethra after they knocked me out, which creeped me out. I knew that a bunch of strangers would see me naked and dig around in my bathing suit areas, so I threw my pride out the window on the way to the hospital. I know they are professionals and see this stuff all the time. I had many different nurses and doctors checking my incision, measuring my urine levels, asking whether I’d passed gas yet… It’s kind of hilarious when people cheer about a 32-year-old having a bowel movement.
View from my hospital bed
There were a couple of surprises. I had what they think was a bad reaction to antibiotics, which involved my whole body shaking and my heart racing. And the potassium they added to my IV made my hand feel like it was on fire. But I knew beforehand that I wasn’t going to feel great, and those problems passed quickly.
In the days before my surgery, people kept asking me if I was afraid. I felt like I probably should have been. I guess I didn’t really believe it would happen until I was lying in the hospital bed in the pre-op room, but even then, I was mostly just excited. There were possible downsides, but I had been thinking about this for a long time.
- I feel bad stressing out my loved ones, but if one of them needed a kidney, I would hope someone would do this for them.
- The thought had crossed my mind that maybe I should save the kidney in case someone I love does end up needing one, but if they don’t end up needing one, it would go to waste.
- Maybe I’ll end up needing the kidney, but I couldn’t really expect anyone to donate to me if I wasn’t willing to donate.
- Maybe the recipient’s body will reject my kidney, which would suck, but at least I started a chain, so some people will end up getting help. And I hear rejection is pretty unusual these days.
- After the surgery, I’m supposed to avoid getting high blood pressure and diabetes to avoid stressing my one kidney. However, I was pretty committed to those goals before all this started. They are good goals to have.
- My mom said a lot of people ask her if I can have kids with one kidney. I could if I wanted to. I would just need to wait a year for my organs to settle into their new locations.
- I’m supposed to avoid contact/extreme sports, so unfortunately my rodeo career is over before it started. I’ve come to terms with that.
- I knew there was a very small chance that something could go wrong, but you have to die eventually, and I couldn’t really think of a better way to go. I had a chance to do something meaningful for once, and I felt I had to take that chance.
A couple of days after the surgeries, I was able to meet my recipient and his family, which was one of the coolest moments of my life. Maybe the best. They are all so sweet and said such nice things. I learned that Timothy had been on dialysis for 5 years. He lost his job and hasn’t been able to take his daughter on vacation. He almost died once when his blood pressure got too low. His family said he had received many calls about possible donors who ended up not being matches. They weren’t sure they would ever find a donor. Timothy said his leg and foot pain went away the day of the surgery, and my coordinator said the color was back in his skin almost immediately.
Me, Timothy, and his sister Jenn (who also donated to a stranger)
People keep saying I’m selfless for doing this. I’m really not. I get a lot out of it. It makes me so happy to see that I’m helping someone. I’m too shy and awkward to be nice and generous and helpful on a personal level to people I encounter on a day-to-day basis, so I do stuff like this. I’m afraid to talk to people, but I’m not afraid to go under the knife. Go figure.
I’m so glad I stuck with this. I am grateful to Ace and my cousin Kim for getting me involved in this. I didn’t know Ace a couple of years ago, and now I feel very close to him even though I wasn’t able to donate to him. He is such a positive person despite all he has been through. In addition, he helps raise awareness about kidney disease and cancer and performs in concerts to help others. I also need to thank my friends and family for listening to every boring detail and “vicissitude” of this over the past couple of years and for all the flowers, kind words, and visits, especially my mom, who I know was worried but very supportive and helped me a ton at the hospital, and my husband, who has been providing me with Braum’s ice cream on demand. I’m thankful to the staff at Baylor University Medical Center in Dallas and the Simmons Transplant Institute for taking great care of us and putting up with my crabbiness. Finally, I appreciate my company and coworkers for supporting me, sending food, and picking up my slack at work during my recovery.
Flowers from my best friend, Katie
It has been 6 days since the surgery, and I’m feeling pretty good right now. Definitely not back to normal. I almost Hulked out on a clementine I was trying to peel earlier and then had to rest for a few minutes. But I can function on a couch-potato level with very little pain.
Anyway, the point of this entry is to encourage other people to sign up to be organ donors when they die, donate to the National Kidney Foundation, walk or volunteer at the Dallas Kidney Walk on June 6, or maybe even look into altruistic undirected kidney donation (especially at Baylor, which rules). It’s basically just a day of tests and a couple of weeks off work, which is actually pretty sweet. You need to catch up on House of Cards, anyway.
Kidney in a cowboy hat at the 2013 walk