How did this even come to be? I have a friend who lives in TN. I live in CA. So, for anyone considering doing the same, finding someone who is geographically desirable will make this process a lot easier! But, if that's not an option, please don't let it discourage you. It's still an amazing journey regardless of geography.
Anyway, this friend's wife wanted to donate her kidney to him, but during the final stages of testing discovered she couldn't. I could tell she was devastated. I know I would be if it were in that situation. If my husband needed a kidney and I couldn't donate to him I'd want somebody to come forward. I wondered if I was a potential match, so I e-mailed my friends explaining I wanted to help, was there anything I could do, and that my blood type is O+. Realize, at this point I know next to nothing about any of this! Turns out blood type is extremely important, which I figured it would be, but blood is an interesting thing. Remember high school human biology? Anyway, being O+ is helpful, makes me a universal donor to all other blood types. My friend is also O+. This is a good thing since O's can give to anyone, but they can only receive from other O's. Ok, lecture over, you can do more research here if you're really interested.
I decided on my own that this was something I wanted to do. I discussed it with my husband. He freaked out, which is to be expected. This is quite the bomb to drop on someone! Of course, it's not usually a topic of discussion, so how to bring it up in the first place is probably going to be awkward enough. But, it did come up and we've been talking and sharing out fears and concerns about this ever since.
I've shard with friends and co-workers my desire to donate a kidney and everyone has been extremely supportive! I'm very lucky to have such fabulous people in my life. As I said, this is exciting and scary, so having the support of friends and family is vital.
Some of things I've learned are, I'm just like a lot of people, all of the following stats apply to me:
- Most kidney donors (45%) were between the ages of 35 and 49. I'm 36.
- 71% were white, 13% black, 12% Hispanic, and 2% Asian. I'm white.
- The majority (58%) of donors were female. I'm a female.
- 45% had type O blood, 38% type A, 13% type B, and 4% type AB. I have type O blood.
Source: OPTN Data as of February 28, 2008
This is just the beginning for me. As I learn more I'll share it here (I have a lot of data and information I'm still processing that I'll post later). If you have any questions please e-mail me or comment here. If you know anyone is has been through this or is considering it, please let me know. There are thousands of people who donate live kidneys each year, yet to the best of my knowledge, I haven't met any of them, but I'd like to.
Resources: all information was retrieved from the http://www.livingdonorsonline.org/kidney/kidney.htm site. This site is also very good site: http://www.kidney.org/transplantation/livingDonors/index.cfm
I'm sure as I do more research I'll find more sites. If you know of any that I should check out please let me know. Thanks!
4 comments:
Please expand your research beyond the National Kidney Foundation's site at www.kidney.org as well as OPTN, which gives data, but nothing in the way of the human information needed to make your decision.
The LDO forum is a good place to read real stories and discussions from living donors, but any site or section of "living donor stories" is always positively skewed.
There are many risks to what you're contemplating, including death (yes, donors have died, and recently), bleeding, hernias, intestinal binding, testicular swelling, permanent nerve damage, adrenal gland dysfunction, pancreatitis, lymph leakage, chronic pain, hypertension and severely reduced kidney function (that's off the top of my head).
Some living donors experience depression, anxiety, anger and PTSD, but NO transplant centers offer aftercare or support services.
After donation, you will be at a higher risk for hypertension, cardiac problems (due to the hypertension) and kidney disease. Since 1993, nearly 200 living kidney donors have been registered on the UNOS waiting list in need of their own transplant.
There's no long-term comprehensive data on the health and well-being of living donors. Yes, a U of Minnesota study was released last year that has gotten a lot of press, but 40% of LDs didn't respond to survey requests and those familiar with research know the non-respondents have worse outcomes than respondents (there are other problems with the study too, but I'll spare you the details). In 2004, UNOS admitted they lose track of 40% of living donors within six months. They really have no idea how safe (or not) living kidney donation is.
Also, and this is important - insurance companies can (and do) deny coverage to living donors for having a 'pre-existing condition', and they are starting to deny coverage for things like hypertension, even if it shows up 20 years later, claiming it is related to the donation.
Good luck, but think critically. Put yourself first, which is difficult when you want to help someone. But you have to because the system won't.
Becky, it is incredible that you would be willing to help someone in this way. I shed a tear while reading your post. It filled me with so many emotions.
I can't deny my concern for you, and have to trust that you will make the decision that works best for you and E. Even if you do not end up going through with the surgery, just know that even the consideration is a beautiful act in itself. Your beauty continues to inspire me friend.
Cristy at Living Donor 101 - thanks for the information! I'm in the gathering info phase, so any sites that you can suggest would be very welcomed. Thanks again.
Becky,
I applaud your interest in helping others. My wife donated to me 3 years ago and I started a non profit organization to help others through the living donation process.
Please visit my web site at:
www.lkdn.org
Wishing you the best.
Harvey
Living Kidney Donors Network
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