I got very excited when I first was evaluated to be on a waiting list for a kidney. I was so optimistic about just getting on the list I thought I wouldn’t be waiting that long, even though I was told it could be 5-10 years before I got a transplant. Coming up this January, I will be on the list for four years. At the end of this month I will have been on dialysis for two years.
Has it gone by fast? Yes and no. I think back over the last three years, and there have been some very dark days, and darker nights. Some painful times, and some scary medical issues. But I’ve also done a lot things I’ve always wanted to do. A lot of really fun things! There’s a certain kind of freedom that comes with a chronic illness. I feel my time on this planet could be short, so I’m trying to live my fullest life every day. Time feels slow as it passes by, but it doesn’t seem like it’s been that long since I’ve been on the list. Dialysis is part of my daily routine, and I’m used to it in the way you get used to that bathroom door that just won’t close right. It is what it is.
A question asked of me a lot is “Where are you on the list?” That’s a difficult question to answer, because it really doesn’t work that way. Factors considered in matching donors and recipients include blood type, body size, how sick the patient is, distance from the donor, tissue type, and length of time on the list. What doesn’t get considered is race, gender, income, celebrity or social status. All this information is entered into a central database that has a sophisticated algorithm designed to find the perfect match. So every time an organ becomes available, the list shifts a little because there are so many factors to match.
My blood type is O+ which means I’m a universal blood donor, anyone can accept my blood. But transplant doesn’t work that way. To find a successful match, I need a donor with O+ or O- blood. If I found a living donor willing to donate a kidney, the first question asked is “What is your blood type?” If the living donor is not a good match for me, there is another option: Paired donation. Paired donation is when there’s someone willing to donate a kidney, but that kidney is not a match for the intended donor. There are so many people on the waiting list, it’s possible that person could donate to a total stranger who is a match, then I would receive a kidney from a total stranger. A kidney is matched with a donor, but the donor and recipient may not even know each other. Like a donor daisy chain! I’ve heard of cases of 6 to 8 people involved in a paired donation.
More than 20 people die every day waiting for a transplant. If more people were willing to donate one of their healthy organs, this number would change.
Organ donation is no small decision. It truly is the ultimate gift that can never be repaid. I could never ask anyone for their kidney. But I would encourage everyone to consider organ donation, either while you’re living or after you’ve died. It’s easy to register to be a donor. Making that decision ahead of time takes the pressure off of loved ones asked to make that decision for you.
If you are considering donating a kidney while you’re still living, here are some questions to ask yourself:
1. Are you willing to lose one of your kidneys?
2. Are you a match/blood type?
3. Are you willing to donate a kidney to someone you don’t know?
4. Do you have health insurance?
5. Can you take time off work?
6. Is there someone you know who can care for you for a short time after the surgery?
You’ll have more questions. And you can get some answers by contacting the donor coordinator at Abbot Northwestern Hospital: Susanna Gust at 612-863-8886.