might change dh hospital

[misdee]

average length of time on VAD at harefield 151days

average length of time at papworth 59days

blimey. are you near enough? and what makes the difference?

we are the same distance roughly from each transplant centre.

no idea what makes the difference. smaller lists maybe. they get people transplanted quicker.

What does Peter think? And how is he?

What does it mean then Misdee? The amount of days? Is that how long he has to wait?

Sorry, am a bit slow.

god that's a hell of a difference on the face of it, I can see why you would be considering it. guess you will need to do a bit of factfinding first.

its at least worth a phone call isn't it?

Did i see that harefield 'owe' 2 organs now anyway?

Will it affect his place on the list?

peter wants to look into it more, see if it affects how long he has already been waiting, and if his length of time on the list will carry on.

i think he is fearful of switching as harefield know all about him and the transplant unit know him.

i got sent the report through from someone who has looked it all up, papworth stats are actually better in most areas concerning VAD's. but harefield have better stats concerning transplants survival %.

harefield needed to payback 2 hearts into the transplant system as they have had 2 emergencies recently.

but wont list peter as urgent.

but surely the size of the list doesn't make a difference because the transplant register is national and it would go to who needed it most rather than where they were (within reason, of course)

you should look into it carefully and this is going to sound awful, but make sure they aren't dying before they get off the VAD which would make the length of time shorter, obviously

Still quite new round these parts, but equally as interested as everyone else. What prompted you to move now? Obviously I don't know the politics of it all, but it seems so shitty that one hospital can give a better chance than another.

thats what we need to find out NJ. after all, last week was 657days on the LVAD, longer on the harefield list.

30% died on VAD at papworth compared to 44% at harefield. have it all here in front of me

princess, dh has been waiting for a heart transplant for over 2 years, and we are now reaching breaking point. its putting a huge strain on the family, his parents, us as a couple. we are just stuck.

wow that seems totally crazy.
so why aren't more people trying to swap to papworth?

maybe because they arent desperate. you generally go to your closest centre as well, but we are pretty much right in the middle of both of them.

Strangely, I have been kept up-to-date, by another mn'er, Kbear, although she used to refer to you as 'a friend', as I wasn't on MN myself then. I look in when you post, as I'm sure hundreds of us do and although I don't always post, my prayers are with you and your family. xx

thank you princess.

i just want this part of the journey to be over. want to move onto the lovely post tranplant stage, where my dd can have her room back, and we can become 'normal'ish again.

i'm going to see spiderman 3 n3ext week. by myself. because peter cant sit in the chairs at the cinema

my gut feel is that moving - by itself - is the wrong attitude - it's put all the 'thinking' and 'energising' pressure squarely back on yourselves.

With big institutions, it often pays to have a 'champion' who knows how to work the system. I would say you've waited for long enough to deserve someone to say 'hang on, that's not right' - certainly you've earned the right to be a nuisance and to make lots of noise .

I don't know the system, but can you escalate things at all? Who's the harefield's paymaster? What's the level above? Contact your MP? Phone the chief executive?

Hope things go your way soon

I have had this infortmation in my in box all day, but couldnt bear to open it as was warned it would upset. and it has. harefield IS the leading heart hospital, massive breakthroughs, great transplant unit, fab nurses, great surgeons, tx sucess is good (when you get one), and its 'safe' we know it. to turn our backs and going to papworth is a step into the unknown. i think I want to call their leading man/woman and have a proper chat with them about this, maybe pop up to see them with peter.

have al lthe info, but what to do with it?

kif, we are trying desperatly to get Peter listed as urgent for transplant, its his only hope atm, but they wont do it. we are back there on friday for VAD training, am going to be kicking up a stink again.

I think you are right about talking to the person in charge at Papworth to see if switching would actually make a positive difference for Peter.

i dont think i will be able to rest on this until we have spoken to papworth.

its is stated that people on VAds who are stable can be listed as urgent at units discretion, papworth may do this whereas harefield doesnt tend to.