One of my websites is www.mikeneedsakidney.com. It’s pretty much self-explanatory. I have kidney disease, I’ll need a transplant within the year, and I need a donor. All the information is on the site.
Anyway, a couple of points about the website: It may seem unusual to create a site like this. In fact, I’m only aware right now of a couple of other similar sites. Here they are – an 11-year old girl needs a kidney: http://nadianeedsakidney.weebly.com/, and a man is looking for a kidney: http://www.ineedakidneynow.com/. I’m sure there are a bunch of other sites I haven’t come across.
I think in the future, though, people will use the web a lot more to ask for kidneys and other organs. They’re already using You Tube (see some examples below). Anyway, the alternative if you need a donor and don’t have one is not getting one, or waiting to get one from a deceased donor from the waiting list, and that could take more than five years. During that time, some people survive on dialysis, while others don’t make it.
While I try to use a bit of humor on the site, it’s not intended to make light of the subject. I just think it can be funny to have the contrast of something really serious and then something unexpected. Same deal with the video I’m going to put up on www.mikeneedsakidney.com soon.
Besides trying to get a donor, hopefully another result of the site will be to increase awareness of organ donation. The site will have been worth it if even one person who sees it decides to donate to someone who otherwise wouldn’t have received an organ.
The need for organs is much greater than the number available for transplantation. More than 100,000 people are currently waiting for organs, including 76,000 waiting for kidneys. About 7,000 people die each year waiting for some kind of transplant. Another 2,000 are cut off from the list because they are too sick.
See Death’s Waiting List, an editorial written by Sally Satel in the New York Times from May 15, 2006. She says that people should be allowed to have incentives to donate, such as health insurance or funding for education. I agree.
One site that donors can search to find people who need organs is www.matchingdonors.com. You can also check out the National Kidney Foundation’s site at www.kidney.org for information on donating. The site for the PKD Foundation is http://www.pkdcure.org.
As for me, I will need a transplant relatively soon but there are a lot of people worse off who are already on dialysis (which leads to death in about 20% of people per year). This is what I wrote to someone on matchingdonors.com who had been considering donating.
“Your decision to possibly donate is obviously really amazing. Of course, as I say in my profile, I’ll need a transplant in less than a year. There’s no exact science on when to do the transplant. I had a transplant evaluation last spring (2008) and a surgeon said if I had a donor I could do it then.
On the other hand, my nephrologist says I could wait until my GFR (approximate percentage of kidney function remaining) is as low as 8, which might not happen until late in the year. Plus, how you feel is also a barometer and right now my symptoms aren’t too extreme. The doctors I saw most recently at a transplant clinic said I should do it when my GFR is at about 10 – which may be pretty soon. These are all estimates, of course. Right now it’s at 11. See my chart at http://www.mikeneedsakidney.com/graph.php.
If I wait too long, I may be too sick and the chance of success could be smaller. On the other hand, I don’t necessarily want to rush into it because post-transplant I’ll have to take immuno-suppressant drugs for the rest of my life which have side effects, though those risks are obviously much better than having kidney failure.
At least one medical person advised me to have the transplant as soon as I have a donor; another says get as much out of your current kidneys as you can before doing it. Another factor is that I’m trying to get a federal government job which would give me better health insurance than I have now that would cover 100% – as of right now my insurance covers 80% - and it usually takes a while to get these jobs. (Either way the donor’s medical expenses are 100% covered by my insurance).
Anyway, the point is that you may choose to donate for someone who is desperate now (already on dialysis). But for such a big decision, you should also do it for someone who you really want to do it for.”
Here are some news stories or videos about people in need of kidneys:
· A 7-year old girl with PKD asks Santa for a kidney: http://www.11alive.com/rss/rss_story.aspx?storyid=125026; her mother’s blog: http://www.kidneysandeyes.com/
· A 38-year old woman in Israel asks for a kidney: http://www.youtube.com/watch?v=sWGGmOJHoW8
· A musician seeks a kidney: http://davidrosam.co.uk/2009/01/23/david-s-ware-is-ill-seeking-a-kidney/
· People pass out flyers at convenience stores to try to get a kidney for a friend: http://www.youtube.com/watch?v=7eup4MY9yWI&feature=related
· A man with diabetes asks for a kidney: http://www.youtube.com/watch?v=uISjKPRUKJc&feature=related
· A 36-year old man asks for a kidney: http://www.youtube.com/watch?v=8cYokW6QMIw&feature=related
· A video asks for funds for a little girl’s kidney transplant in the Philippines: http://www.youtube.com/watch?v=ThI_Ki5kYAA
Stories about donation
· A mother donates a kidney to her baby daughter: http://www.youtube.com/watch?v=R3Td0zocTG4&feature=related
· A baby gets a kidney transplant: http://www.youtube.com/watch?v=0ZoARC1_mwA&feature=related
· A video about a successful transplant with “So Far Away” by Staind (one of my all-time favorite songs) playing in the background http://www.youtube.com/watch?v=KUcAfVfM7ok&feature=related
· A daughter donates a kidney to her mother: http://www.youtube.com/watch?v=lGz0Bg-Zw9o
· Wife of pro basketball star Alonzo Mourning does a Public Service Announcement (Mourning had a successful transplant): http://www.youtube.com/watch?v=ibCh1i_T2Pk
· A woman describes what it was like to donate: http://www.youtube.com/watch?v=oynBMHhlG98.
