will transplant ever actually happen........

[misdee]

or are we doomed to life with LVAD with us till dh dies?

just feel a bit off today. one call in a year basically hasnt done much for our hopes. we have no hope atm.

Also feel cr*p as was speaking to another patient today and he is hoping to be ex-planted (also LVAd, aiming for recovery), imo, he has been too long now with the vad to hope for successful recovery. but i am not a doctor.but have seen many many patients go onto the list after initially being told they would be explanted, one die after explanted, and went go into heart failure and being put on the emergency list for a heart.

just rambling, feeling like poo.

This time yesterday there was someone else sitting, wondering when - indeed IF - that long-awaited call might come. And now I guess they are just waiting to see whether the operation will actually go ahead.

What I am trying to say is, who is to say that in 24 hours, you might not be in the very same situation?

I know it must be an awful way to live for all of you. But someone else must have feared they would never get THAT call - and yet it came. And I truly hope it will come for you, too. Soon.

hi darling havent been on for a while ..sending all my love and best wishes and loadsa angel dust xxx**

Sorry, hope I didn't hurt/offend you with my "limbo" phrase. I am sure it is absolutely hellish for you.

Misdee

I am sending you hugs and prayers and on a more practical note, I am posting you a packet of crisps today.

the other person hasnt been listed as long (i am well aware of who has been waiting long, you see them come in for assessemnts ). that why it seems like we are bottom of the pile atm. i look at the board and see old names, but mroe new ones, then they seem to move onto the square faster than anyone else.

cant belive that this time last year we'd had 3.5calls, now we've had one since then.

you havent hurt anyone lucy. in limbo is how iwwould've discribed it a while ago, now its just hell. i have mroe chance of ice skating with the devil right now than peter getting a call. (sorry if i offend anyone, but peter laughed at that one)

Thinking of you & Peter, misdee & praying you get that call very soon.xxxx

I am not that up on the criteria for hearts but do you think people who are stable on their LVAD aren't priority?

wde have been told that they are on the normal list, but have also been told they arent as urgent. so i honstly dont have a clue.

I know that people who are not at risk on dialysis seem to wait forever.Those who can't tolerate dialysis for whatever reason are prioritised I think.How is Peter in himself on the LVAD ?

peed off and down. he speaks sometimes of escaping the hospuital andremoving his batteries.

Do the doctors know he feels like this?They need to prioritise his mental aswell as physical health

yes, he has spouted off to them before now.

he isnt like this all the time, just has a few down moments.

he wouldnt get very far anyway, as soon as those batteries are removed a big alarm sounds, then it goes into back up mode.