The following is a letter from Persimmon Blackbridge, author of Prozac Highway and Sunnybrook: a true story with lies.
I don’t know how to write this. I don’t like group emails, especially not ones going to everyone from my best friends to people I barely know. I don’t like asking for big big giant humongous outrageous favours, and this is just about the biggest.
I’m looking for a kidney. Blood type O.
Two years ago, a false positive on a diabetes test led to the discovery that my kidneys were failing – not from diabetes but from a hyperactive parathyroid gland flooding my system with calcium for the past 10 years or more. It was a lucky accident that it was discovered, but it had already damaged my kidneys to the point of no return, and I will need dialysis or a kidney transplant in the next year or so.
My brother and sister both stepped forward immediately, and it was a huge disappointment to learn that they are both the wrong blood type.
Now a couple of friends are beginning the testing process to see if they might be potential donors. The transplant social worker advised me to find more potential donors if I can, as most people turn out to be incompatible or are eliminated for health reasons. So now I’m asking you and everyone I’ve ever known if this is something you would be willing to look into.
It’s a big decision; it’s not right for everyone. I don’t expect an answer and I’m never going to ask you again.
All I ask now is that you think about it for a minute. Is this something you might do?
Obviously you would have questions or concerns about how being a donor would affect your health or lifestyle or finances. There are many places you can ask questions and get real, accurate information. There are websites by and for living donors (http://www.livingdonorsonline.org is one). There is a nurse at the transplant hospital who works only with prospective donors – her job is to look out for the interests of potential donors, and she keeps strict patient confidentiality. If this is something you might look into, I’ll give you her phone number.
The bottom line is: screening for donors is very thorough. If you have any health problems, they will find them. If donating poses any health risk, you will be turned down. If you pass the health tests, there are still tissue compatibility tests that could eliminate you as a donor. I know people who have had ten potential donors step up for them, only to have them all eliminated. That’s why I have to ask everyone. That’s why I’m asking you.
Right now I have only one kidney left, and it’s quite damaged, operating at 20-25% of normal function, down from 30-35% last year (whereas one healthy kidney provides 80% of the function of two). When I hit 10-15%, I’ll need a transplant or dialysis to stay alive. At that point, if I don’t have a compatible live donor, I’ll go on dialysis and be put on the waiting list for a deceased donor transplant. In BC, there is an average wait of 5-10 years on the deceased donor list. People like me with type O blood usually wait approx. 10 years. Many people die waiting for a transplant.
Dialysis is no walk in the park and I‘m not talking about the needles, the travel restrictions, the time spent tethered to a machine. Dialysis doesn’t cure kidney failure, it’s just life support. Over time, it brings a host of life-threatening medical complications. People who get a transplant instead live an average of twice as long after their own kidneys fail.
Being on dialysis, even for a year, also increases the chance of organ rejection when you do get a transplant. If I can find a compatible living donor before my kidney completely fails, I may be able to have a transplant without ever going on dialysis. This would be by far the best scenario for me.
At best, dialysis can provide only 10-15% of normal kidney function. What 10-15% means in terms of day-to-day symptoms differs from person to person. For me, even now at 20-25% normal function, I have frequent periods of extreme fatigue when I can’t write or do artwork or much of anything else. So it’s unlikely that dialysis will let me continue working as an artist or writer. Those of you who know me well can probably imagine what that would mean to me.
Ok, that’s a lot of complaining. I’m not wanting to pressure you. Donation is not something everyone can or would want to do. You may have medical or personal considerations that I know nothing about, or you might just not want to. It’s your call. I’m only hoping you might consider it. If it’s not right for you, do you know someone else who might be up for this adventure? If you do, please forward them this email. People decide to donate for all kinds of reasons, and for some people with kidney failure, it’s a total stranger who comes through for them in the end.
I’d be happy to answer any questions or help you find more information.
Thanks for reading this,