Transplant Question..waiting game?

[treesx4]

I am on the transplant list. My aunt was tested and ended up not being a match. The weird thing was after weeks of testing, the last test was blood work to see if she would even match. Why do they do it backwards? She said for the money, she is a dialysis nurse..says she sees it all the time.
My question...How long have most of you, who have been on the list, waited for your kidney?

[WishIKnew]

My wait was just under 4 years.

[Sydnee]

I've been on the list 1 1/2 years so far, and Ed (hubby) has been on for a year. We were told to expect a 6 plus year wait for A and O respectfully.

Ed has a friend that tested and found out that he was not the same blood type but this friend went ahead and signed up for paired donation so we'll see.

[tiredandthirsty]

it will be one year for me Dec 28th.  i have started getting calls for re-do of the tests/scans as they are to be renewed every year.  so another round begins early january.  i am so not looking forward to it.  takes up entire day at the hospital from one place to another. 

[KarenInWA]

For me, I had 2 people step up for initial donor testing. From what I understand, the blood match testing was done first, not last. I went to the University of Washington in Seattle.

KarenInWA

[MommyChick]

I have had family tested for me & it might depend on the hospital your at, because they did the blood work first to see if they were even the right blood type to match me. Then tests followed if they were my blood type.
My first transplant I was on the list for 7 months. I am currently waiting for a second & its been 7 yrs so far.
I wish you the best of luck!
Good Luck & God Bless!
 

[jeannea]

My first transplant was living donor so no waiting. My second was about 2 years. Although 6 months before that they had told me to expect to wait about another two yrs. I'm not sure what bumped me up. Might have been a really good match since I had 97% antibodies.

[sullidog]

2 years for me and still waiting.

[Riki]

I've been waiting about 9 years... I'll have been on dialysis 9 years in May, but I was on the list about 6 months before I started.  I waited a year and a half for my first kidney, and only a month for the second, so wait times can vary depending on the match

I know nothing about testing, though, as I've never had anyone willing to be tested for me

[kit78]

4 days...........   now after 11 years, I will back on the list shortly.

[malaka]

I'm officailly "on hold" since my creatine/albumin levels are still way of of whack.  Per the transplant coorinator nurse, they won't give me a kidney as its likely to fail since my blood protein level is so low. 

The Pope abolished Limbo.  He was wrong.  I'm in it. 

[MightyMike]

Thats weird anyone who ever got tested for me it was always a blood test first because if there not a match it's a waste of time and money to run any other tests.  Maybe they were trying to get money for unessesary tests.

[chiromac]

It has been a year & 1/2 for me, I was told I should have a transplant within a year or two more.  I hope the estimates are right and I can restart my life within 2 years. 

[Lillupie]

it been over 5 years for me and not a single phone call.



Lisa

[Stacy Without An E]

My story is similar to a few people here.  I'm on the transplant list with UCSF, so it's been nearly 9 years.  The problem is I have 51% antibodies after two previous living donor transplants (Mon & sister.)  It really depends on your health status and what part of the country you live in.  Being in the Bay Area near San Francisco, I've discovered that the wait is ridiculously long.  The last time I spoke to the transplant coordinator, they said, "Hopefully by the end of the year."  The days are ticking by & still no-call.

I also didn't have anyone step up and get tested.  Makes you ponder your personal worth when no one makes an offer.  But I guess I understand.  It's major surgery & not without risks.

[Lillupie]

I also didn't have anyone step up and get tested.  Makes you ponder your personal worth when no one makes an offer.  But I guess I understand.  It's major surgery & not without risks.

Stacy, I know exactly what you mean by this. It makes me feel bad that noone wants to get tested for me at all. There was a nurse at my old dialysis center who was one of the patients before she got the job there and before she got transplanted and told me that she had over 20 people get tested for her. I started to think I guess Im not good enough for anyone to want to get tested for. Actually a few people have shown intrest, but after discussing it with their family it was a no-no and noone actually went through the process of getting tested.

[Riki]

I feel bad for people in m province who've started dialysis in the last 2-3 years.. a lot of them are on a waiting list to have the workup to go on the transplant list.. I feel a little guilty because I'm already on the list, even though I've been on so long, but I'm also waiting to see the transplant surgeon right now, in order to get on a new national list for hard to match patients... I'll be on 2 lists, and they're not even on one yet.. I've been told by one that is waiting to not feel guilty, but it's hard not to

[jeannea]

Riki - There's a waiting list to get on the waiting list? Or they just haven't finished their workup? It took me a few months after I finished my workup, and the workup took a while, to be approved by the committee to be on the waiting list due to a few issues.

My mother gave me my first kidney. After that no one offered. My dad is the wrong blood type and they won't test him. I have siblings, cousins, friends. No one else offered for my first or second transplant. I think people really don't want to donate. It's better they don't offer if they don't want to go through with it. I did ok on the waiting list. For me a cadaver kidney was probably best. I think sometimes you get a better match that way.

[tiredandthirsty]

just to add to my previous comment.  my father gave me one at the first go.  now i need a liver and a kidney, so the doctors think going the cadaveric way is the best option as sourcing both the organs from the same medium is immunologically the best option.  not that people are lining up for me with offers to give me one of their two kidneys :-). 

[newgrl]

My first kidney was from a living donor.  However, I amback on the list and it has been a year already.  I have highantibodies so I was told it could be a long time.  I have a cousin who has tested to donate.  He initially did a blood test to determine if he was a match.  Then when they tested my blood againt his they said we were not a match.  They did it twice.  It was the final step for us.  So maybe that it was they meant about you.  It is called a crossmatch to see if you will reject the kidney. 

[okarol]

Daughter Jenna has a nearly 6 year old kidney transplant that is puttering out. She is at 14% function and has been on the waitlist since she was below GFR 20 - almost 2 years. She is not on dialysis yet, but will probably start soon. It is a 10 year wait here in Los Angeles for type O blood so we are actively searching for a kidney donor. Her transplant hospital does a complete health evaluation of the donor prior to doing a blood match. They say it's better to know if the potential donor is healthy before doing a crossmatch and then later having to let everyone down. Plus, now they say that they can match other blood types by doing desensitization. Jenna has 100% antibodies so she hopes to find a donor, and if no match, then to enter a pool like the national Kidney Registry to do a swap. Desensitization may also be needed, but since she has no donor yet, we don't know. Here's her facebook page if anyone want to LIKE it. https://www.facebook.com/WantedKidneyDonor Thanks!
Good luck to those who are waiting. 

[Riki]

Riki - There's a waiting list to get on the waiting list? Or they just haven't finished their workup? It took me a few months after I finished my workup, and the workup took a while, to be approved by the committee to be on the waiting list due to a few issues.

No, they are on a waiting list to start the workup to get on the transplant list.  There are no transplants done in my province, they are all done in Nova Scotia, however, it is Prince Edward Island's responsibility to do the workups for transplant.  We have two nephrologists who not only look after the dialysis patients, but also pre-D and post-tx patients as well.  They just don't have the time to get all the appointments set up for the people who are not yet on the transplant list.  What we need, and don't have, is a transplant coordinator who could look after those appointments, work with the two coordinators at the transplant centre in Halifax, and arrange donations, which is something else that doesn't happen in this province.  On Prince  Edward Island last year, there were 7 transplants, as opposed to the other three Atlantic provinces, which had 20-50 transplants each.  So yeah, those people are waiting to wait, and it isn't fair

[jeannea]

Riki, that sucks. Although I do know about overworked nephrologists.

[Riki]

I've been onl the list for 9 years now.. my workup was done before Prince Edward Island took over dialysis from Nova Scotia.. I have been waiting about 3 months for the appointment to see the transplant surgeon to get on the second list, but I'm not worried about that.. I just feel bad for the people who are just starting dialysis here, and can't get on the transplant because of the backlog

[Deanne]

I've been on the list for 15 months and my expected wait time is 2 years. Getting closer.....

My three potential donors had  a phone screening first. That eliminated two of them immediately. #3 was then checked for a match - she was/is a good match. Then she failed one of the blood tests. They did do the easy/inexpensive stuff first though.

Could it be your aunt passed a preliminary match test, then failed it later? Our antibodies change over time, so she might've been a match at first, but then if/when the did a re-test of this at the last minute, it might have failed.