Thursday, August 15, 2013

Non-directed kidney donation

I decided to become a kidney donor midsummer of last year. I was having a lot of stress in various aspects of my life, and it just seemed like something that, if I qualified, would allow me to put my focus somewhere entirely other, on something bigger and more important.

So, of course, I googled kidney donation and ended up at the National Kidney Registry. I found the Kidney Donation, No Recipient link, where there's a handy-dandy, step-you-through-it list of what's required to become a non-directed donor.

It started with some basic testing at my doctor's office. She also had to sign off on a form stating that she knew of no reason why I couldn't be a donor. The test results went off to the NKR, and I think it was a couple months before they contacted me to say I had passed the first hurdle.

Next, they scheduled me for two days of more rigorous testing, including a psych evaluation, at the nearest NKR-affiliated transplant center, which was the University of Washington Medical Center. So, in mid-January 2013, my then-boyfriend now-hubby Ted and I spent three days in Seattle. We even found a posh hotel downtown and made it a mini-vacation.

The first day was the day of endless hydration. I had to drink a liter of water on our way in to the hospital and provide a urine sample when I got there. Then the fun began. I was injected with a radioactive tracer and had to collect ALL my urine from 9 a.m. to 2 p.m., constantly drinking water the whole time. Every hour, I would go back to where I got the injection and "pee into the hat" (the collection apparatus looked like a sombrero turned upside down) and they would draw a vial of blood. I had to drink drink drink to make sure they were getting enough pee at each collection (I swear it was gallons). This test was to see how quickly my kidneys eliminated the tracer from my bloodstream. A fun bonus: I got an official little card to carry for the next two months so when I flew, if I set off the TSA scanner, I could show the TSA folks why I was radioactive.

Later that afternoon Ted and I met with the whole transplant team, including the surgeon, the transplant coordinating nurse, and a social worker. The surgeon explained that only one in five non-directed applicants makes it through the testing, because it's very rigorous. They want to make sure no one in your immediate family has a history of early heart disease or stroke, cancer, diabetes, kidney disease, or liver disease. He said it's a little strange for him as a surgeon, because the "first, do no harm" doctor rule sort of goes out the window when he removes an organ from a healthy donor. So he wants to make absolutely that donors are very healthy and should be able to get by their whole life with one kidney. The transplant nurse was there to answer any and all questions, then and whenever, and the social worker probed a little into why I wanted to donate. That was day one.

Day two, I wasn't allowed to eat anything but jello and chicken broth. I gave fifteen vials of blood at the blood draw center. I had an EKG. Then we had about a 90-minute break so we went to the cafeteria and I ate, like, ten cups of jello. I am not a person who does well without eating. Next up was an abdominal CT scan. After that I was able to eat again (so hungry!). Finally, I met with a psychiatrist. It only took about fifteen minutes. When I came out into the waiting room, Ted said, "Either you passed with flying colors, or you really crashed and burned." He wants to get a bumper sticker that says "My girlfriend isn't crazy. I had her tested."

Then I waited a few more weeks. The transplant nurse sent me to my regular doctor for a couple extra tests. I waited a few more weeks. Then, in March, I got the email from UWMC that said I was approved! I was so excited. The next step was to enter my information in the NKR database and see who popped up as a match. In May I got the call that a match had been found and that the donation chain involved almost a dozen people (more on kidney donation chains). The surgery date was set for July 10. And the rest is history!

If you're reading this and thinking about becoming a donor, and would like to ask any questions, put your contact info in the comments or send me a message on Twitter where I am @halfpassgirl.

One last thing: I am also registered as a blood marrow donor. That process is super easy. You just register at Be the Match, they send you a cheek swab kit, you swab away, and you send them back the kit. That's it!


Kate said...

Can you explain what having only one kidney means long-term for you? Do you have to be on any medication?

halfpassgirl said...

Thanks for the question!

Living with one kidney is very much like living with two. The remaining kidney adjusts to the change by getting larger and handling the work of both. You don't have to take any special medications.

I do have to avoid NSAIDS like ibuprofen and naproxen sodium as they can be hard on the kidneys. I can take Tylenol. And I had to make a commitment to a continuing healthy lifestyle with healthy foods, exercise, maintaining a healthy weight, and drinking lots of water.

Part of the National Kidney Registry's work is closely tracking outcomes of kidney donors so there will be a huge database for researchers to mine. I go back in for testing in six months, and at one, two, and three years out.

Oh, and if my remaining kidney ever fails, I get to be at the top of the list for donation :)