Great news, Our son had his final 2 day assessment at QEB Wed & Thurs and was told before leaving after lunch Thurs. that he is being listed for a transplant on the Priority List.
We now wait for the letter / phone call with all the confirmation on it...Believe it can take up to 2 weeks before he is actually '' On The Lis t'' is that so does anyone know ??
He has a UKELD of 56....now the waiting begins...he will have to have dialysis during the operation & also after..not sure for how long or where will keep all updated..
Our elation that he is on the list is tempered by the fact that sadly someone must loose a loved one for him to survive.
Regards & Best wishes to all
Chris
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grumps
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I'm sure they have a meeting on Monday to get all parties involved to get the thumbs up first . I was the same as your son priority, then told about the meeting and received my letter immediately . Good luck 🙏
Great news. Same as me I was on priority found out the Friday after I left the assessment. I don't think you have to wait to actually be listed and I didn't get a letter. Although I was at kings so possibly different. It took about 6 weeks until I got the call. Just keep him as fit as possible, avoid coughs colds etc. Good luck!
Hubby was on the list straightaway (Edinburgh) and there have been others who have posted on here in the past who actually got call number 1 on their way home from the assessement having just been told that they were listed & another regular poster who got the call and a transplant the next day. We certainly got no letter to say hubby was listed - hopefully your sons call comes quickly and all goes swimmingly.
Don't over think where the organ comes from - it is a gift from someone who wanted to see others live on after their death & fingers crossed your son receives the gift he needs.
That's such great news Chris, as RodeoJoe said, make sure he keeps as fit as possible. If he's able, get a reclined exercise bike and some small dumbbells if you can, it may be difficult if he wasn't that fit before, but it really does go a long way to helping us recover after the operation.
Congrats! It's a good and a sad thing. After they told me I was going on the list, I got a letter that had all the info and I had to sign every thing and back the forms. But, I also had to sign the forms all over again with my transplant coordinator four months later. It was at the last signing I was officially on the list. I think they may have made a mistake and lost the papers? Not sure. But he did tell me that this is how it was done. That part was weird, lol..but the rest was great! Ian so grateful.
I still wonder about my donor. I know he was only in his thirties and was healthy.
Soon I will write my letter.
Good luck! Pack a suitcase, have transportation and back up worked out, and then be patient!
Hi I was put on super urgent list & family told I had 48hrs. They got the call 40hrs later. I was on dialysis during & after for about a wk then went to over night for about 5 days.
I had mine at QE 18mth ago, excellent team & care.
I don't know anything about the assessment process as wasn't ill, my liver just failed & daughter found me unconscious, so don't remember anything can only go by what team & family has told me.
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