Strange call from transplant center

[tyefly]

I just got a call from my transplant center  and they wanted to discuss my listing.....   I am current listed for transplant and I am accumulating time.....  she wanted to know if I was Ok  to continue on the wait list and not go into a  "hold stage"  on the wait list... she said that I would still accumulate time but if a deceased kidney came up then I would not be matched with any of those...  I have a living donor that is currently being tested ( he only has a couple of test to do ) and he was a match but only 1/6  so a little risky..... the transplant person wanted to ask me if I wanted to stay on the list and be matched for all kidneys that came available......  and not be placed on HOLD....    I am confused.....   why would I not want to stay on the list.....  I mean if a kidney came up and it was a good match...or better match than my living donor.. wouldn't I want to go with that ....  I think living donors are better  but its still risky with the 1/6.....   I have only been on the list for a month.....  what are the chances of me being called.......LOL      she said I could be called at any time....   and said she would talk to me soon......     this transplant stuff  is emotional draining......

[cariad]

Hmmmm, I'm with you, tyefly, that is an odd question. 

I think perhaps she was trying to see how strongly you felt about receiving a live donation. For me, none of the centers have asked if I want to be on hold, but to be honest, they may as well put me on hold because if a deceased donor came available (even a 6/6) I would refuse it. For now I am determined to participate in a clinical trial which requires a live donor. In your situation, I would tell her to keep her hands off my status. 

[okarol]

Some centers actually require you be on hold if you are testing a living donor. They won't call you with a deceased donor kidney if you have a potential living donor. It was nice that your center actually asked you. I am with you, stay active because you never know what may happen!

[kellyt]

I was told that if I got "the call" before our scheduled transplant that they would go with the cadaver kidney (provided it was good).  It didn't sound like I'd have a choice in the matter.  I guess it goes back to anything to protect the living donor, and I didn't have a problem with that.  Why have my sis-in-law go through all of that if there was another kidney availalble.

[monrein]

I'd want to stay active on the list and continue with the testing process with your living donor.  If a very good cadaveric match (not just the antigens but good all around) came up I'd accept it.  I also wouldn't worry too much about the 1/6 match since my understanding is that current meds are improved to the point that only a 6/6 gives any significant advantage.  More important is freshness, sounds odd I know, but I mean not too long or not at all on perfusion, and general condition, no damage whatsoever.

My first kidney was cadaveric, 6/6, lasted 23 years.  Never any rejection episodes, just cyclosporine toxicity over time.   Despite several blood transfusions which were standard (crazy) protocol at the time and 23 years, I had 0 antibodies and transplant #2 is a 0/6 match from my living donor.  No rejection so far (Feb. 23 will be one year) and things going well.

I'm not sure that the antibody issue is at all cut and dried.  Some of us develop them and some don't.  I understand that pregnancies and other things like trx and transfusions can cause them to build up while some people are simply lucky and I'm thankful that this huge piece of luck seems to have happened to me.

[tyefly]

   Yes  I think you all are right.....   staying on the list is the best for me.....  I would accept a cadaver kidney if one came about....but what are the chances of that ... I have only been on the list for a month....  now my donor only has two more test to do and I believe he will be done.....  so I am crossing my fingers that all is good....  I think all will be good....he is in very good health....   I feel guilty......  I am the one who divorced him.....  after 20 years.....  we are still friends .... we have a daughter together......  and what do you know  he offers me a kidney.......  pretty humbling...... he has always been so good to me......   
          makes a person think.....  makes me cry...... I know I hurt him alot.... by moving on.....man  this is deep....

[kellyt]

I think it's amazingly beautiful!  What a guy.    Keep us posted.   

[Chris]

You did pass on being listed on the extended criteria list though tyefly?

[tyefly]

      Yes   I did pass on the extended criteria list.....  I did feel that I should except that type of kidney...   but I am glad that they kept me on the list...... 

[*kana*]

From what I understand, you wont get the call unless there is a 6/6 match.  You are at the bottom like me.     They go by how many years you have been on dialysis NOT how many years you have been on the list.  If someone has been on dialysis for 15 years and then decides to get listed, they are at the top.   I wonder why I jump through all their hoops every year if my odds of getting a kidney before my 5-6 year are so small. 
My sister got a 6/6 cadaver last year after being on the O+ high antibody list so the odds of it happening again in the same family for me, next to nil!  I think we both have a better chance at winning the lottery.   

[Sunny]

Kana
Unless they changed the rules this month and didn't tell me, my transplant center goes by amount of time on the list and not the amount of time on dialysis. Conceivably, a person could get a pre-emptive cadaver transplant without ever being on dialysis. If you are on the list and win the "Oregon lottery" of a 6/6 match then you could jump to the top immediately. With this in mind, opting to stay active on the list even if a living donor is being tested seems like a good idea.

[paris]

Sunny, you are right---time on the list. Otherwise no one would ever get a pre-emptive transplant.