For those of you who have gotten a living donor, how did you start the conversation? I am struggling with sharing my need, and my more immediate family has not been very receptive to the thought of donating. I am not currently on dialysis, but that is probably only a few months away.
Thanks,
Paul
I was 14 years old been 2 months of dialysis there no good match except my aunt so she felt pity for me, showed empathy, and wanted to be a donor.
Anyway, there is nothing to be ashamed of. You can ask your close family members and tell them there is nothing to be afraid of, most people are afraid of going operating room so it is hard for them to accept.
You say your family doesn't think donating, I understand you, even when I was 14 years old and on dialysis, Some of my relatives were against donating. they didn't find it appropriate.
Further, It is not ok for most people but after you told there is minimal risk for the people who donate, you can offer them some valued gifts car, etc. in natural way 😉 after this, I am sure they will be searching for risks on the internet
Good luck.
I've read your other post. You really have a different approach to life! (Offer your family gifts, a car??!!)
You don't know how people are cruel, don't you? :)). Then, there shouldn't be anyone on the waitlist for a kidney from your view. Anyway, I didn't mean close members like son, wife. And I didn't mean that the person should push a person to do it which is not legal. That's why I said in my post (in a natural way which is eloquence, not directly)
I don't why but this quote came to my mind, have a good day.
“The world is a dangerous place, not because of those who do evil, but because of those who look on and do nothing.”
― Albert Einstein
"There shouldn't be anyone on the waitlist for a kidney" is definitely NOT my view. That's your quote! And yes I have lived long enough to know how cruel and divided this world has become. As I said, you definitely have a different approach to life. I, however wish you the best.
I missed something. What is the car situation and please fill me in on what I missed.
Although it is legal and appropriate for recipients to help pay for expenses directly related to donation (gas for travel to the hospital, hotel costs during evaluation/inpatient stay, etc.), it is not legal or appropriate to persuade or coerce a potential donor with gifts or outright pay them for the act of donating. Please contact your transplant social worker for more specifics about limits and restrictions around expenses or costs related to the donation.
I was misunderstood, you are right, it is not legal to push someone for donating. And I didn't mean it 
It is super hard to ask! I told everyone about my health condition and would explain how long it would take to receive a deceased donor kidney as opposed to a living donor kidney. Some people would ask for the transplant center contact information and I would share it. I never felt comfortable coming out and directly asking someone to get tested. Both my brothers immediately said they would donate when they found out. One couldn’t because he had PKD like me - the other one was ruled out by the transplant center due to other health concerns. When it got close to the holidays we decided to include a family letter with our Christmas card. My cousin who I had not really spent anytime with in more than thirty years immediately stepped up and went through the testing process. Other friends made inquiries- but I never came out and asked anyone how the testing process was going - I didn’t want to put any pressure on anyone. In the end the person who decided to get tested, just in case, who ended up being my best match was my husband - it took him sometime to start testing because he never imagined that he could be a match. I had a successful kidney transplant two and a half years ago. Awareness is key. Just let people in your life (friends, family, grocery store clerks, etc.) know and educate them about the process - who knows, maybe you’ll inspire someone to get tested. Keep positive thoughts. Best of luck to you!
Asking was really hard. But, there is no other way. I asked at my church. My pastor ended up getting tested and he was a match. Even if they are good to donate but not a match, there are programs to find you a matching kidney from another person who has a non-matching donor. They arrange a swap. I have PKD and got my new kidney 2 years ago. I was better when I left the hospital after 4 days than I had been in 20 years. Good luck!
Hi Paul,Here's a link that might help. I'd be happy to talk more with you...kidney.org/transplantation/...
Welcome to the club none of us wanted to join! I'm in the same boat. Had several friends offer when I first got listed, none panned out for a variety of reasons. Only one family member (by marriage) made a serious offer but has since had other issues come up and is not a sure thing. And of course Covid hit at the exact time we decided to "advertise" through social media. We looked at how others had done it before we crafted the letter which we posted to Facebook. But timing is everything and we had bad luck. We're thinking about renewing our social media solicitation now that so many are getting vaccinated. It's been a roller coaster and a challenge to be at peace with just knowing most people have good intentions. It is heartbreaking when you think someone is serious and then they fade away. My advice is to encourage those who have shown an interest to become familiar with the pros and cons of donation - provide them information resources and don't get your hopes up too high. People want to be heroes, but they don't always realize what that entails. As they say in AA, one day at a time. I wish you the best and peace in whatever the future holds.
I really appreciate all the advice given. It's a very isolating feeling. I think a lot of it is that I almost feel guilty for being in this position. Was there something I should have done differently. I don't tend to try look back at the past, but this is one of those that does make me do that. I know I have to get over it. The testing to get listed started for me in late 2019 and the last year or so has slowed everything down as far as finishing up the process, now I need to push past and see if I can someone to start the donor process with me.
Easy for me to say, but no point in feeling guilty. You are where you are and you have & will have enough other things to think about. Stuff can be quite overwhelming- it helps me to break it into chunks and focus on what you can do in one area - eg start thinking about how you want to ask or who - write it down or what items do you need to do to complete your transplant work up and then give yourself a break. Think about something else - something that makes you happy or grateful. One step at a time. At least this works for me when it all becomes too much...
The best advice I can give is to get someone close to you to do the asking. They will have no trouble doing it, and can be very effective. Find someone and explain to them how it is difficult for you to ask, and if they would please do the asking for you.
Update on the response to my search for a living donor.
Find live drug-addict donor for preemptive kidney transplant?
donor
Kidney rejection episode 4 weeks post transplant from a living donor.
Remembering your donor.
