On the list or not?

[MooseMom]

To those of you who are on the UNOS list, how were you notified?

I had my pre-transplant evaluation mid Feb, and by the end of March, I had all of my tests done.  Then one day, the coordinator called me and told me that their nephrologist wanted me to do more stuff.  I have done everything required; it took almost 3 months to complete everything, but I did it.  I know that the transplant team meets every month on the 15th and again on the 30th, so I was sorta expecting something this past week, but I haven't heard a thing from anyone.  Maybe they just missed the deadline and will present my case on the 30th; I don't know.  When you were listed, how did you find out?  Did the coordinator call you and then you get a letter confirming it?  Once you have been notified, what's the very next thing that happens?

I could call or email the coordinator, I know, but I am not in the mood for disappointments.  Right now, I can be a little happy knowing that I've done everything I've needed to do.

Any thoughts?  Thanks so much.

[cariad]

If you have insurance that will pay for this centre, meet their lifestyle and BMI requirements, and you came through all of their tests without unearthing any issues, then you will be listed. It would be nice if the coordinator would call, but I heard three out of four times via letter. The only reason why Northwestern's coordinator told me by phone was because they were poodling about over whether I needed this final blood test or not. The coordinator called to inform me I could cancel the final draw and gave me my date for listing. Me, I detest the beauty pageant feel to listing, and don't play. It should not be a big secret or surprise whether and when they are listing you - I should think a call to your coordinator is in order, even though I'm with you, not the most fun experience usually. They may just come up with another surprise test for you. Northwestern did this to me TWICE.

After you receive confirmation, you immediately jump onto IHD and tell us so we can congratulate you. Next you must try to forget that you are in this position, and go enjoy your life. If you've been meaning to get a more reliable mobile or landline, now might be the time to do it....

[okarol]

After waiting and waiting to hear the first time, I learned that sometimes things happen and your case can get delayed (in Jenna's case they had staffing changes so her file sat for 3 months on someone's desk.) So now I know to call and ask for the status, and I would say i just want to make sure I've done all that is required. 

[MooseMom]

When I completed the last task, I sent an email to the coordinator telling her this fact and that if they needed more information to please let me know.  I have always emailed her with details about every appt I had and every other piece of info I could think of.  I wanted to appear "helpful and informative" without seeming too pushy.

I KNOW I meet their lifestyle/BMI requirements, and I've already checked my insurance, which is in order.

I think I will give it another week or so.  I'm rather enjoying these few weeks where I don't have some big awful thing in my immediate future.  I will just choose to believe that no news is good news.  These past few months have been really awful, but it is summer now and I'm going to enjoy it.  I may be on dialysis next summer for all I know.  I am working really hard to change my mindset, trying to live more in the moment than in the scary future. 

Thanks for the info!

[Chris]

Only thing I can remember on being notified was being called first that I was on the list by the transplant center and then recieving a leter from them. I can not remember if I was notified by UNOS or not. Never thought about saving those letters, but thee are a lot of things I wish I did pre and post transplant for record keeping.
 
However from my experience is to make sure monthly labs are done and sent in. I made the mistake of trusting my dialysis unit was taking my monthly labs along with my normal blood work. No one asked me why they weren't getting the tubes anymore or said a thing. In the end I found out I was taken off the list by mistake from UNOS because of another person with the same name. I found this out when my transplant center called me asking if I had gotten a transplant and the investigation began.

[BASSMAN]

After waiting and waiting to hear the first time, I learned that sometimes things happen and your case can get delayed (in Jenna's case they had staffing changes so her file sat for 3 months on someone's desk.) So now I know to call and ask for the status, and I would say i just want to make sure I've done all that is required. 

I had a similar situation and was shy about calling.  After a PM with Karol I called the transplant center and my Neph had dropped the ball.  That got things going.  I received a confirmation letter one week after completing my evaluation.

[Sunny]

I found out I was listed with a phone call from the coordinator and then a follow up letter confirming.
I now get calls about every three months wherein they ask for my health status and whether any insurance or living circumstances have changed.
They get copies of my blood draws from my local lab. Since I am currently inactive, I don't send a blood sample direct to them. When I am active, less than 14% GFR consistantly, then they send me a blood vial kit which I have drawn monthly at local labs and send to them via the mail. I can call them anytime should I have questions and they usually get back to me within a couple days.

[cariad]

When I completed the last task, I sent an email to the coordinator telling her this fact and that if they needed more information to please let me know.  I have always emailed her with details about every appt I had and every other piece of info I could think of.  I wanted to appear "helpful and informative" without seeming too pushy.

Don't worry about being pushy, or even seeming so. I once shouted down the phone at my coordinator "If they're not going to include me in the trial, tell me, and I will get a standard transplant AT ANOTHER CENTRE." I was in my car, outside my son's soccer practice, handed the mobile over to my husband, jumped out and slammed the door in a rage. This was around 5:30 on a Thursday evening. At 8AM the next morning, Gwyn received a call from the surgeon with a lengthy explanation of where everything stood at that time. It is your life. Wait as long as you like, but do not wait one moment for their benefit.

I am working really hard to change my mindset, trying to live more in the moment than in the scary future. 

Fabulous, MM. You've come a long way.

[MooseMom]

If I haven't heard anything by the 30th, which is the next meeting of the transplant evaluation team, I will call for an update.  I just found out that my 81 year old mother is in the hospital with an infection.  She has been on dialysis herself for about 5 years.  She has been making plans at last to move from Houston to Palm Desert where she is going to live in a assisted living community which truly is like a resort.  She should have done it several years ago, but tearing herself away from Texas was a process that, I suppose, couldn't be rushed.  She's slated to move on 24 July, and I would so hate for something awful to happen to her before she finally got a bit of her life back.  I just don't have a good feeling about this, so the transplant stuff isn't really an issue for me at this particular time.

So much for living in the moment...  The future just got scarier.  Silly me for having let my guard down for even a day.

[cariad]

Yikes, MM, I'm so sorry. Best wishes to you and your mother.

  (Please don't let this set you back in terms of your progress. I can imagine this is terrifying, but if worry prevented bad things happening, my first transplant would have lasted a lifetime.)