On April 19, 2007, I will be donating one of my kidneys to a stranger. Any questions?
What made you decide to donate a kidney?
There are currently about 70,000 people in the United States on the kidney transplant waiting list. However, there are only about 13,000 kidneys available for transplant each year. About half of these come from cadavers, and the other half come from "living donors" such as me.
Okay, that's very sad, but why you?
The quick answer is that I am donating because I have a spare kidney, and there are people out there who will die or, at the very least, suffer on dialysis unless they receive a transplant. I think that saving a life would be a very powerful experience.
Those who know me should not find this totally out of character. The reason I went into law enforcement, biked thousands of miles for AIDS Charities, stopped consuming animal products, and volunteer my time at a youth crisis hotline is because of my desire to help others and alleviate suffering. Donating one of my kidneys on April 19 is simply the next step in what I hope will be a long life of public service.
As many of you know, I am a religious, but deeply flawed, Catholic. I like to think that I come from the "social justice" wing of my faith as opposed to the "intolerant jerk" wing. This also informs my decision to donate a kidney.
What does your wife think?
Lisa has been very supportive. I would not be donating if she felt strongly that I shouldn't.
What does the surgery entail?
The donation of a kidney is laparoscopic surgery, meaning small incision and quicker recovery. I'll be out of the hospital on the next day, back at work in two weeks, and back to normal in a month. The surgery is no more dangerous than any procedure done under general anesthesia.
Are there long term negative effects of living with one kidney?
In short, no. There is no scientific evidence in 50 years of living kidney donations that there are any ill effects to living with one kidney. Within five weeks of donation, the remaining kidney swells in size and increases its filtering power (the "glomerular filtration rate") to match the power of two kidneys. In short, I'll have a single super-kidney instead of two simply adequate kidneys.
What if something happens to your remaining kidney?
My family has no history of kidney disease. When kidney disease occurs, it nearly always strikes both kidneys at the same time. It's not like one kidney fails and you find yourself knocking on wood, thankful that you've got a spare. If I should develop kidney disease, I will need treatment or a transplant – just like I'd need if I had two kidneys.
What if one of your kids needs a kidney?
This is the best argument I've heard against donating. That said, I can't justify not saving a life today because it might inhibit my ability to possibly save one in the future. My wife will have a spare kidney for them, and we both have loving families who may be willing to help if one of my kids is in need of a kidney.
Are you able to get paid for your donation?
No, that would be illegal. The only incentive I am permitted to receive is the warm feeling from helping another. Well, that is not exactly true. If a kidney donor needs a transplant, they go straight to the front of the line on the kidney transplant list, which seems like a very fair deal to me.
As a public policy matter, I have no problem with donors selling their spare organs to needy recipients. I wouldn't do it, but I think anything we as a society can do to increase to donor pool is a good thing.
Why not just sign your driver's license?
Living donors have better kidneys than dead ones. The likelihood of a successful donation is increased greatly by a living donation. That said, anyone who signs their drivers license is okay with me.
Who is your kidney recipient?
I walked into the kidney transplant department of Northwestern University Hospital a short while ago and told them I wanted to be a "non-directed" kidney donor. This means that I was prepared to allow the hospital to choose my recipient from their transplant waiting list.
I immediately began to have misgivings about this approach. What if my kidney wound up inside a real jerk? Or a registered sex offender? The lion's share of people on the kidney donation lists suffer from diabetes, and many of them have Type 2 diabetes that arose from obesity and a sedentary lifestyle. Furthermore, I felt strongly that, all things being equal, I'd like to see my kidney go to a young person who may be able to enjoy it for a long time before their natural death.
Non-directed donors have no control or input into who gets their organs. The donor is not permitted to know the identity of the recipient until several weeks after the surgery – and then only if both sides consent to the disclosure. A committee inside the hospital makes the decision about who on the list gets to be the recipient, and a confidential source I have inside the transplant department of another hospital told me that the panel is fraught with its own biases.
I read an article by Virginia Postrel, a libertarian writer who I respect greatly, who donated a kidney to her friend-in-need. The article was cleverly titled, "Here's Looking at You, Kidney," and here is the link:
http://www.dynamist.com/articles-speeches/opeds/kidney.html
In the body of her excellent article about the process, Virginia mentions a website called http://www.matchingdonors.com/ where people in need of organs (kidneys mostly) post their profile and story in hopes of finding a donor.
It's a bit creepy since the site resembles Match.com or other dating sites. Yet unlike Match.com, in a successful Matching Donors hook-up, you don't get lucky on your "date" and you wake up missing a piece of yourself, which, come to think of it, recalls my single dating life more than I care to remember.
In the world of Bioethics, sites such as Matching Donors are very controversial because they tend to reward people with the best self-marketing skills rather than with the greatest medical need. A lifetime ad on the site soliciting donors costs the recipient about $600. On the other hand, non-directed donorship strips the donor of any input whatsoever into the 'who gets my guts" decision, and that strikes me as quite unfair.
I spent some time searching the Matching Donors site until I found the posting of a Chicago woman named Brenda. Here is the link to her posting (although I expect this link to disappear soon):
http://www.matchingdonors.com/life/Donor/search.cfm?page=position-description&JobID=%24%22%2DDL10%20%20%0A&CFID=20518&CFTOKEN=74342971
I also found a You Tube video about Brenda that I'll post below:
The direct link is:
http://www.youtube.com/watch?v=YjP4gSBvGHs
I felt a great deal of empathy for Brenda. She is young, non-diabetic, and works in law enforcement as a domestic violence court victim advocate for our local prosecutor's office. She's also experiencing severe kidney failure combined with complications arising from dialysis.
I continued to struggle with the dilemma of non-directed donorship vs. finding my own recipient on the web. My wife and I discussed the morality of "playing God" and deciding who lives and who dies. Finally, I decided to go with Brenda for the following reason: if I had let the hospital pick my recipient, I would've hoped that the recipient's personal story be just like Brenda's story. Given that reality, the final decision was easy.
I reached out for Brenda via email and began a dialog with her and found her to be a delightful girl. We spoke on the phone, and I informed her that if our blood types matched, I'd be proud to give my kidney to her. I did everything in my power to put her mind at ease, so she wouldn't feel like she was sitting through the most important job interview of her life. In any case, she passed. I continued through the clinical screening, and we appear to be a kidney match.
We have not met in person. We have a joint doctor's appointment on April 2 when we will meet for the first time.
What if Brenda's body rejects your kidney?
Then I will feel a real sadness but no regret about my decision. All I can do is all I can do. The rest is up to the doctors, God, and Brenda's body.
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20 comments:
Hi, Tom:
Thanks for establishing this site. I'm in the process of making a non-directed kidney donation at the Mayo Clinic, something I wanted to do after reading an article on philanthropy in the New York Times Sunday Magazine this spring. Reading your blog was helpful.
Tom Dickson
Helena, MT
Hi tom,
lovely blog on kidney donation.
Im an indian and i have received a transplanted kidney from my mother in August 2007.
In india there isnt much awareness
ur blog enlightened me a lot......
with regards, Manohar
Hi. I appreciate you taking the time to answer some of the most common questions that people have about kidney donation. I am currently going through the process of donating a kidney to someone that I "met" on LivingDonorsOnline.org. I just got back from a trip to Mayo Clinic in Arizona last night. I have made it to the part where they grill you and do medical tests for a week. I have to say that it was very tiring but definitely worth the trouble. Now I'm crossing my fingers that I'll be approved. Everyone pray for me and the recipient. My name is Melissa and his is Masud.
And Tom, what you did is wonderful, whether you actually got to donate or not.
Hi!! My name is Yannie, and I am wanting to be a live donor. I'm not exactly sure how to go about it though. What would your advice be? I know without any doubt that I want to do this, and I know that it is the right thing to do.
Thank You!!
Yannie Joseph
Yannie, Give me a call any time, and we can discuss the issue you contacted me about. I'd be happy to answer your questions honestly. Seven-Seven-Three-451-6688 or simonhere at mail dot com. - Tom Simon
I too have been researching being a kidney donor. This blog was very helpful. I have been given a second chance to have a happy life and I want to do the same for someone out there.
If anyone has any advice I'd love to hear it! I haven't begun the testing yet and am not sure what the steps are that I need to take.
Thanks ;)
Krissy, Give me a call any time, and we can discuss the issue further. I'd be happy to answer your questions honestly. Seven-Seven-Three-451-6688 or simonhere at mail dot com. Alternatively, check out the blog posts at the bottom of www.kidneychronicles.com as they describe my recovery process in detail. - Tom Simon
I just met the young lady I am going to give my kidney to. I am like you, it is the right thing to do, but I AM SO SCARED. I need help, I am just afraid. Thank you for your site, I am grateful and it gave me some piece of mind.
Thank you.
Rachel
Rachel,
Please call me if you want to talk.
- Tom Simon
773-451-6688
Hi there,
I am in the UK and just finishing my evaluation to be a non-directed (altruistic) kidney donor. We do not have a matching scheme here at the moment, so I do not have any choice over who gets my kidney except to know that they will be in dire need of one. Hopefully I will be donating in the New Year. It is interesting how different countries deal with donation but at the end of the day the main thing is that someone gets their life back. God willing this will happen soon when I donate. My prayers go to all those on the waiting list that they get their lives back before too long.
http://www.LivingKidneyDonation.co.uk
When I was a kid, my mom would always say that I was "alturistic". I have been called that my entire life. I think it's normal and healthy. I see the beauty that life has for me, why not share it.
Also, thanks for posting the reasons why you would like to donate your kidney... I swear, I have always wanted to donate my kidney to someone.. It's just in me. I know one day very soon that I will be a donor.
However, I do know that my family will not like that the fact that I am consideringt it, but I just feel like it's just not "right" for someone not to be able to enjoy like and the endure horrific measures of dialysis.
Thanks again for your inspiration.
Carley Lester, DC
folks it really is inspiring to see so many good people in this earth willing to make a totally selfless sacrafice in order to improve some unfortunate individuals life.
i myself am somewhat humbled by the lovely comments and stories you share and tom your charity work is very noble and i really think this world needs more people like you.
i am going through the final stages of testing to be able to give my brother a kidney although it sometimes scares me, the courage and goodwill of people like you all inspires me and helps me to see that my deed is nothing compared to people like yourselves.
i have a minor disability as a result of a car accident and may require a knee/hip replacemnt in future and somtimes worry what effect having only one kidney may have on future operations,
sorry for rambling on but i really have so much appreciation for people like yourselves.
Neil,
Having only one kidney will have no effect whatsoever on you having future operations. In fact it should not affect your life at all. So please put your worries aside. Good luck with your donation to your brother and also for your future operation for yourself.
Hi I did not see any pics of your scar are they on your blog.. I am donating a kidney coming up in the end of January.
Good luck with your surgery, Pepper!
I haven't posted pictures of my scars on the internet.
There are three scars. The two right beneath my left ribcage look like healed bullet holes which accentuates my gangsta image. The three inch scar along the elastic-line of my boxer shorts is generally hidden from the public. None of them are particularly unsightly. They are pinker than my skin, but I did absolutely nothing to treat them or care for them. Now that I live in Hawaii, they're probably getting too much sun.
Hi, My name is David and I am very interested in being a living donor, but like a few of the other people that have posted here, I have no idea the steps to go about it and I haven't completed a definite account on matchingdonors.com just because I am not 100% sure I am healthy enough for it. How do I go about this? Any help would be very much appreciated.
David, there is no reason for any donor to contact Matching Donors. Just pick the person you want to donate to, and contact them directly. Or call your local transplant center and become a non-directed donor. Email me if you have any questions: simonhere at mail dot com.
I want to donate my kidney to someone,and I have contacted a transplant center via email but I haven't heard anything back. I don't want to pick the person, any help?
Call your local transplant center and ask to speak to the "Donor Coordinator" - usually a transplant nurse working in admin.
Tell her that you'd like to be a "non-directed donor" and ask if their hospital accepts them. Not every transplant center accepts non-directed donors.
Then make an appointment to meet with the transplant nurse to begin the process.
Unsolicited emails won't get you there. Persistance will.
Good for you! I admire your courage greatly. Also very helpful for my biology GCSE this week!
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