As some of you know, my hubby Mike is on the UNOS waiting list.
Our forum has a some folks who have decided not to go the transplant route (are deemed ineligible/have continued to drink alcohol, are ill, etc.) and are doing as well as can be expected with advancing liver disease.
We have had several members or their caregivers share news of their lovedones sad final days, some are struggling through those last days even now.
And we have folks who are waiting themselves or with loved ones, hoping that transplantation is an alternative for them...at least for the short term.
That's my Mike. And he is in a sorry state this weekend. He is in no pain, his symptoms are being managed by meds and clean living, but he is so sad and discouraged. I think he thought he'd get ON the list and zip zip zip, he'd be on his way to the surgery and better health.
Have we any experience, maybe one of the moderators has a more long term feel for this, about how long folks wait?
Pam says that Ron was listed and that he waited about 6 months, have I got that right?
I think another caregiver reported a year.
What I am trying to do is reframe Mike's expectations, telling him that TODAY there are sicker folks than he is, that he is actually doing pretty good, and that others need today and tomorrow's livers.
But to try to explain to him that he is not nearly close enough to death to qualify is a pretty tough message.
Any one can give us better information. The truth is best for Mike I think.
They redo his MELD in May. With 19, he isn't at the top of anyone's list. The average in FL is 22 I understand. I wonder if that is right.