I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: krismimo on March 28, 2012, 06:59:51 PM

Title: Hubbs Got the Call late last Year... Sort Of now what?
Post by: krismimo on March 28, 2012, 06:59:51 PM
My hubby and I live in California. He has been on the list for by the end of this year six years. He almost got the kidney late last year... almost. Basically he got a call saying if the person theyre trying to reach does not respond by a certain time he is the next person so standby. After that I guess the other person got it. One of the doctors said that was a good thing and at that point he might be in the top 30-50 people at this point. Now the hospital did say it would take in between 5-7 years. Now I did the math in my head hopefully all he is about a year to go give or take which is a wonderful thing. I guess I wish I knew if he was going to get that call soon. Man that would make my year, I'm also in the process of putting myself as a candidate for him. Has anyone had this happen to them before? I would love to hear your opinion, I mean heck I know I have been waiting for four years so what is another year give or take?
Title: Re: Hubbs Got the Call late last Year... Sort Of now what?
Post by: MooseMom on March 29, 2012, 01:48:43 PM
Has anyone had this happen to them before? I would love to hear your opinion, I mean heck I know I have been waiting for four years so what is another year give or take?

I'm not sure I understand the question.  Are you asking if anyone has gotten a call to be "on standby" for a kidney and then have that kidney go to someone else?
Title: Re: Hubbs Got the Call late last Year... Sort Of now what?
Post by: krismimo on March 29, 2012, 03:01:12 PM
Oh I was trying to figure out if someone was in a similiar situation, like if he or she got the call to be next if the person ahead of them didn't reply in time then you were the next person. Now lets say the person ahead of  you did get their kidney. How soon/long did that person wait when they got the call from the hospital specifically for them? sorry about noot explaning that!
Title: Re: Hubbs Got the Call late last Year... Sort Of now what?
Post by: MooseMom on March 29, 2012, 04:05:41 PM
I've received four calls in all, two for kidneys from high risk donors and two from extended criteria donors.  The two high risk kidneys I declined.  I was fourth in line for one ECD kidney and second in line for the other.  I didn't get either kidney.  I have no idea how long the eventual recipients had been on the list, and I have no idea if this was their first call or not.  Privacy laws would probably prevent anyone from sharing that information.

I have been on the list for 20 months and have yet to receive a call for a non-ECD/non-high risk kidney.

I am in the Chicago area where the mean wait time is 45 months.

I don't know if this helps at all...probably not, but I didn't want to just ignore you!  LOL!
Title: Re: Hubbs Got the Call late last Year... Sort Of now what?
Post by: krismimo on March 29, 2012, 05:58:06 PM
Oh wow that is a lot of phone calls! No I appreciate your feed back I didn't know they could call that often. Thank you so much for responding it is hard not to know anything until they tell you.
Title: Re: Hubbs Got the Call late last Year... Sort Of now what?
Post by: MooseMom on March 29, 2012, 07:50:38 PM
Well, keep in mind that I had agreed to consider extended criteria donor kidneys.  Also, I have a very common blood type and a PRA of zero.  Again, I have not received a call offering a standard kidney.

I am not on dialysis yet, and for that reason, I probably will be taking my name off the ECD list until I do start, at which point I will probably consider going back on that list.

Has your husband thought about considering an ECD kidney?  Did his tx center offer that option?