Living Donation

[WYOAnne]

I recently had to do some research. I am an advocate with the NKF. I am working with my Wyoming legislature trying to get the "Living Donor Protection Act" become a law here. One of my WY Representatives' came up with some questions that I did not know how to answer.

Did you know there are 2 non-profits (maybe more) in the US that have a "Potential Living Donor Database?"

DONATE LIFE AMERICA - in 2022, able to register interest in Living Donation on "National Donate Life Living Registry."

AMERICAN TRANSPLANT FOUNDATION

They have great websites that answer a lot of questions you may have whether you want to be a living donor or a potential kidney recipient. They even have a mentor program for those that are searching for a donor. Please check them out. They are very informative and could help you receive a kidney sooner rather than later.

[DBUrbanFarmer]

I have had 7 people offer to give me a kidney in the last year. I’ve been told that is a lot and I’m lucky. However, of the 7, five have been disqualified for mental health reasons. I am not talking schizophrenia or bipolar disorder and on lithium. I’m talking “was on an SSRI 17 years ago” type stuff. (My other 2 were disqualified for physical reasons). I’ve all but given up on living donation if the criteria is so impossible to meet.

[pheebee in reply to DBUrbanFarmer]

That is crazy, how frustrating. Being on an SSRI at some stage probably means that a huge percentage of the population are ruled out.

[oceansplash in reply to DBUrbanFarmer]

Maybe try another center, they have different criteria,

[Turtlepad513 in reply to DBUrbanFarmer]

It can be very discouraging and disappointing to have so many people disqualified. Just remember you are not alone.

[Aloha49]

WYOAnne, thank you for this info. I will look into these orgs. It is very difficult to find living donor that qualifies. I found out I need to get an angiogram now for the local transplant center. It seems that each month they add another test or requirement. Anyone had an angiogram done as it sounds scary? Thanks, BB

[nellie237 in reply to Aloha49]

Hi Aloha,

I had an angiogram & stent in 2012. I opted for sedation only because as I waiting outside the cath lab the cardiologist came out to say "We are planning on placing a stent, but if we find we can't do that, we'll send you for bypass surgery." What! I've been here for 48hrs.......and you're choosing to mention this NOW.

Usually they go in through the wrist, but I have very skinny wrists so mine was through the groin. I didn't feel any pain, and was able to watch on the monitors. I remember the room was very cold. I would not be at all concerned if I had to have another one.

[Aloha49]

Also, too bad there is not a truly National Kidney Registry that is really national and links all transplant centers, matching donors to recipients. Unfortunately kidney disease is not as politically funded as other diseases. I found out the National Kidney Registry is not affiliated with any transplant centers in Northern California! Just in Southern CA. May have to travel. Thx, BB

[WYOAnne NKF Ambassador in reply to Aloha49]

I believe it is in the works. Donate Life America, just this year 2022, has a "National Donate Life Living Donor Registry" for those interested in being a Living Donor. Their headquarters is in VA. There are people out there that "just from the goodness of their heart" want to be a living donor and do not know a recipient nor are they related to one._ just say you have a friend that wants donate a kidney to you, but she is not a match. She could be part of a "chain" transplant. Someone in MO is not a match for her friend, but because she registered as a potential living donor, she is a match for you, etc.

You can always call the National Donate Life...people and ask them questions.

[Aloha49]

Thank you for your optimism and well wishes and ideas for finding donors. Keeping hope alive really helps! BB