Transplant list

[Epril]

I just went on the transplant list. I've been in stage 4 for a few years now. I'm 57 which I'm told is "too young" lol makes me feel bad. Any advice on how to tell people you need a kidney donor? I'm thinking live donors don't volunteer very often! No immediate family member with 0 negative blood. Also, do you list yourselves at more than 1 transplant center? Love you all and appreciate your comments!

[jodaer]

Can't really comment on your situation but am sending tons of positive energy your way.

[barbara55109]

Most transplant centers have a person that gives advice about this. There are also some non profits that help people design ads and websites. I haven't looked into them. I'm on the list, but I don't have family or friends I can ask. It is SUPER rare for a stranger to step forward. Since my eGFR has bounced up a little and I'm in the low 20s now and not yet on dialysis I haven't tried to campaign for a kidney. I have a Facebook friend who also has CKD from long term dehydration tied to having an ileostomy. She has done everything imaginable in the last two years, press releases, TV news stories, and more. She still has no donor and they won't put her on the list for a deceased donor. renewal.org/ is who is helping her.

[Tolmezzo]

In Italy you must list yourself inside your region. Second center is your choice. Max 2. In case of combined transplant kidney+ pancreas it's all up to you but there are few centers equipped so normally is the closest to your location. Out of your close family circle living donor it's always a challenging. All the best

[TrixG]

Find out where the region line cutoff is. Each center has different criteria. I ended up listing in 3 different states all within 2 hours of me.

[Johnson82]

I was in your same position 4 years ago and I put up a Facebook page telling my story. I shared it with everyone that I knew and strangers. I kept putting content out there and provided all of my updates, worries and concerns and luckily a stranger saw my page and she volunteered to donate to me. Get your story to as many people as possible, be vulnerable and trust that God has a plan and hopefully the right person will see it.

Anybody can donate it doesn't have to be an exact match for blood type. You can go through a shared donation process where someone in your family could donate to someone who matches them and someone of their family matches you. Ask the hospital and Transplant Center about how that works more in detail. Hopefully that helps and I'll be praying for you

[Epril in reply to Johnson82]

What a wonderful story!

[Johnson82 in reply to Epril]

Keep the faith and your hopes high. I was lucky but if you keep believing in the good in this world, miracles happen.

[TaffyTwoshoes27 in reply to Johnson82]

Wow! You were very blessed and lucky. I knew a friend that bought a RV and she and her husband traveled all over the southeast U.S. with signs and many interactions with travelers to get a donor. After a year or so of traveling, she never received a donor.

[WYOAnne NKF Ambassador]

When I was waiting for my transplant, I was listed at 2 transplant centers. At the time, I was living in WI. Was listed at U of WI in Madison and also at Froedtert Hospital in Milwaukee. Got the call from U of WILooking for a Living Donor? look at the NKF website "Big Ask." Will give you lots of tips & suggestions. Recently, DONATE LIFE out of VA has a living donor registry - both for prospective donors and recipients. And then there is the AMERICAN TRANSPLANT FOUNDATION. They even have a mentor program for those want a living donor. Check them all out.

[KidneyCoach NKF Ambassador]

Check out Living kidney donor network. Harvey Mysel is the owner behind it. NKF has great tips.Avoid any requiring fees like matching donors, or private individuals. Lots of people will help you set up a Facebook page to garner living donors for free. Don't get caught up paying anyone to help.

I'm in a bit of brain fog now. I know of many more free resources but they evade me.

We lost a loving pet this morning so my brain is not focused.

Blessings

[Hanksgirl in reply to KidneyCoach]

I’m so sorry for your loss.

[Live_Positive]

Hello EprilFinding a donor is a hardest part but never impossible. This may come from friends or family.

Multi listing is possible in US. Please see this link below. You can see where is the least waiting time and try talking to that center. In one state, you can be listed only one place.

txmultilisting.com/wait.htm

This wait time is helpful to know .

Wishing you luck and all positive energy. One thing I would say, you are young and age is on your side, feel lucky. I am in similar age group.

[julgusgus in reply to Live_Positive]

Thank you for posting that link!

[ILMA54]

I also was unable to find a suitable match in my family.

I sent a note to the Facebook contacts that I knew. Rather than posting on my home page for the world to see, I sent the messages to individuals through the Messenger app.

As far as listing at multiple locations, my understanding is that it makes no sense to list at various locations in the same zone because you are competing against yourself. Here is a link at kidney.org that discusses multiple listings: kidney.org/atoz/content/mul...

Also, here is the link from the United Network for Organ Sharing (UNOS) that discusses this topic: chrome-extension: unos.org/wp-content/uploads...

In March of 2021, UNOS implemented new rules regarding how they communicate the availability of an organ (to improve equity). As I understand it, they now share availability within a 250-mile radius. For that reason, I think that where you list becomes less important than previously. Please correct me if I am wrong, folks!

Lastly, I was listed at age 54 and got transplanted last July at age 57. As it turns out, although multiple people I contacted through Messenger went through the initial evaluation, I ultimately received my kidney from an altruistic anonymous donor who was getting evaluated for someone else. That individual found a match as my donor went through the work-up, and she was gracious enough to state she still wanted to donate.

Regards,

Magdi