When does the "List" process start?

[TexanSummer]

I can't seem to find it anywhere else....but I was curious to know when they start the process/paperwork to get someone on the transplant list. I know my hubby has only been on D for a short time (less than month), but I am trying to look ahead & see what I can get a possible "jumpstart" on by way of information they will need. What can I say....I like to be prepared (or at least close to it) as much as I can.

[TexanSummer]

Well, as always, after I post the question, I find the thread from okarol about "getting on the list" in big capital letters....I feel silly      

[MooseMom]

Well, as always, after I post the question, I find the thread from okarol about "getting on the list" in big capital letters....I feel silly     

That's allowed!  Sometimes there is just too much information we all have to digest.  It's overwhelming.

[cariad]

Hi TexanSummer - not sure we've interacted before, welcome to IHD! I'll try not to mix you up with TexasStyle!

(OK, I see you found another thread, but here is my response anyway! )

The list is a process that is up to you (or rather, your husband) to start. You should start now. Most people can be listed as soon as their GFR dips below 20, which is still pre-dialysis for most people. If your husband is on dialysis, he definitely will be a list candidate in terms of GFR/kidney function.

Here is what needs to happen: 1. choose your transplant centre (and please choose wisely, wish I had given it more thought at first). 2. Call and ask for a transplant evaluation. They should tell you what they need from you: do they want all of his records before they will make an appointment, do they want you to fill out mountains of paperwork, will they insist that you and he attend an orientation? All of these can delay the actual eval, which is just meeting with their various staff (or as they will insist on calling it, the "team members".) 3. collect everything they need, and prepare yourself for a long and draining day. 4. Make sure that you are crystal clear on everything you need to do in order to be listed. Some centres list you right after the eval, some need every last test, and most will come up with a few tests that they "forgot" to tell you about, which will delay your husband's listing date. If he's not listed, he's not getting a kidney offer, so it is in his best interest to get everything completed as soon as possible and stay on your coordinator to make sure it all happens smoothly.

Good luck!!

[carol1987]

Yep start Now!! and keep reading... you are now the one who must ask questions and move the transplant process forward!!

Keep Reading here!!   You should ask if the transplant center you are looking into use multiple sources.. and if they participate in paired/chain exchanges.... the more paths to a donor the better!!

[okarol]

I can't seem to find it anywhere else....but I was curious to know when they start the process/paperwork to get someone on the transplant list. I know my hubby has only been on D for a short time (less than month), but I am trying to look ahead & see what I can get a possible "jumpstart" on by way of information they will need. What can I say....I like to be prepared (or at least close to it) as much as I can.

It's a good topic and things are always changing.  Even in the few years since Jenna's transplant. Back in 2004, when she began dialysis, she also began the process to get listed on the national UNOS wait list. Patients are now eligible to get evaluated BEFORE beginning dialysis, and perhaps avoid it altogether by getting a preemptive transplant.