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Original poster

feeling robbed of the last 8months.....

22 replies

misdee · 27/01/2006 21:42

after finding out recently that VAD patients arent high on the transplant list, we have now found out that no-one has been discharged from harefield hospital with a thoratec vad. peter feels cheated and is understandably upset, as we were told he 'should' be able to come home with the machine. he says if he'd known how things would've turned out so far back in june, he would;ve refused the op. he feels he has no dignity and is fed up. He doesnt want to die now, says he has gone through too much to give up now, but says that if he does, then he'd rather come home to do it.

OP posts:
getbakainyourjimjams · 27/01/2006 21:46

oh misdee >

Original poster
misdee · 27/01/2006 21:50

i'm not upset tbh. i totally understand what he means. we have beeen stuck in limbo for so long, at least if he'd refused the op the liklihood is he'd would've had the transplant, or he would've passed on. and we'd be able to move on IYSWIM. i dont want him to die, but it gets to a point when you want all the suffering to stop. he is essantially on life support. without his machine he wil ldie, no question. but to know that, and to know that you are not on the prioity list really takes it out of you. knowing the end if further away than we originally thought (there are trying to get the rules on VAD patients needing transplant changed to prioity btw), is really taking its toll. i dont see peter leaving the hospital before the summer now.

OP posts:
Potty1 · 27/01/2006 21:56

I'm so sorry misdee. You must all be so p£$%$d off. I'm shocked too that the VAD patients don't come higher on the list - after all he is essentially being kept alive by the machine

X

motherinferior · 27/01/2006 21:57

I am so very sorry.

fannylover · 27/01/2006 21:57

that really sucks. really, really, really...
do you have any idea where he is on the list now?

Original poster
misdee · 27/01/2006 21:57

i know potty, wewre led to belive (i never heard it myself but peter says he was told) that VAD patients are prioity.

harefield transplant unit is fast becoming the VAD unit instead, and they have had any calls the last 2 weekends, which is unheard of.

OP posts:
chipmonkey · 27/01/2006 21:57

Misdee >>. Very wrong for you to have been misled like that.

Original poster
misdee · 27/01/2006 21:58

havent had any calls.

no idea where he is.

OP posts:
mears · 27/01/2006 21:59

I am so sorry Misdee - I thought that the VAD was a temporary measure until transplant was available. Who has told you this information?

Original poster
misdee · 27/01/2006 22:00

I'm just hearing it from peter, so cant be sure. they VADs being used now are more long term ,tho the main air box has to be changed every 3000hrs.

OP posts:
edam · 27/01/2006 22:01

God, Misdee, that's awful. Have you spoken to the transplant co-ordinator?

Original poster
misdee · 27/01/2006 22:02

i havent yet. if i get in when they are doing the rounds they are bound to get a mouthful tho lol.

just feel totally confused all over again. but thankfully no more whispers of bi-vads.

OP posts:
Aloha · 27/01/2006 22:04

I am so shocked Misdee. How can someone like Peter - young, three young children, total heart failure, dependent on living in a hospital kept alive by a machine not be a priority? I don't understand. It is a nightmare. I am so, so sorry.

Original poster
misdee · 27/01/2006 22:08

because he is stable and his heart isnt detoriating any further, in fact he has had some improvement and his heart has decreased in size since last summer.

but he is still being kept alive by a machine and wont be coming home with it by the looks of things.

arrrrgh.

i better have won the euromillions tonight so we can move to harefield.

OP posts:
Calmriver · 27/01/2006 22:22

Sorry for my ignorance, but what is VAD? Sorry to hear that, keep strong and try to keep smiling!

Original poster
misdee · 27/01/2006 22:24

Ventricular assist device (heart pump) peter has a LVAD which is for the left side of the heart, a bi vad is a double pump to support both sides of the heart.

OP posts:
foundintranslation · 27/01/2006 22:30

oh misdee, so sorry, what a nightmare for you.
Is there anyone we can lobby on the VAD/priority issue?

Original poster
misdee · 27/01/2006 22:31

if i find out more i will let u know.

OP posts:
Highlander · 28/01/2006 09:16

oh misdee, this is awful. I can't believe fat smoking knackers get priority over people like Peter. Won't they even let you go out for a meal somehwere?

Original poster
misdee · 28/01/2006 14:27

we are going out on tuesday. just me peter and his VAD nurse lol.

had a lovely visit today, shaved peters head for him (looks more like a skeleton now), the kids watched a film and coloured in, we had a chat.

also spoke to the VAD nurse as she mentioned about peter possibly coming home, i said we literally do not have enough space here. so she says that a social worker will come and assess the place before its even considered.

OP posts:
Highlander · 28/01/2006 16:16

PMSL - does the nurse sit at the back of the cafe, hidden behind a newspaper?

Original poster
misdee · 28/01/2006 16:23

its like he is being looked after by a prision warden.

once he has done 5 trips out with a nurse and another carer (me or his parents), then i can take him out alone. this will be his 2nd trip out.

OP posts:
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