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General health

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Flip

Original poster

Peter says he isnt going to get a transplant. i think its time to look at the facts.

21 replies

misdee · 11/09/2006 20:55

he has been waiting 'too long' yes, BUT he is supported by the LVAD.

however the LVAD could go wrong at any time and fail, which could result in heart attack, blood clots and death.

If he needs chest compressions, they cant be done as it will dislodge the tubes and effectivly kill him. only defib allowed.

The LVAD destroys platlets.

but i am not letting him give up. he isnt depressed, just so matter of fact about it

OP posts:

Californifrau · 11/09/2006 20:57

This reply has been deleted

Message withdrawn at poster's request.

pinkchampagne · 11/09/2006 20:58

{{{{{{ }}}}}}

Blu · 11/09/2006 20:58

Oh Misdee.
Maybe a degee of matter of factness is realistic and strong - but matter of fact includes the strong possibility that the LVAD will not go wrong, not now, not at any time.

The waiting is terrible.

And no, don't let him give up.

Original poster

misdee · 11/09/2006 20:59

he has been at the hospital when one of these nmachines failed with another patient. its bloomin scary.

OP posts:

MrsFio · 11/09/2006 21:00

Sarah became like this whilst she was waiting, if it helps. Its not that they are waiting too long, its just waiting for the 'right' heart/l;ung etc and not having an organ transplanted that isnt 100%

he will get one love, i am sure of it

hulababy · 11/09/2006 21:00

Don't let him give up - agree with you. There is always the chance that call will come.

Thinking of you all.

Original poster

misdee · 11/09/2006 21:02

thanks fio, to hear its 'normal ' (hahaha what is normal about it) is reassuring.

but ot even a false alarm in months. apparently its his height that is causing a problem. he is just over 6ft so not excessivly tall. they cant use a heart from a smaller person, but can from somone slightly bigger.

OP posts:

Metamorph · 11/09/2006 21:04

oh dear Misdee. Blu is probably right - he has to manage his own expectations to some extent. That said, it's great that he has you to keep him positive.

kimi · 11/09/2006 21:53

(((hugs))) your so strong i know you will get him through this.

I know at times things must look very bleak.

I do know how helpless you must feel at times (sort of been there)

LOve to you all,

zdl · 11/09/2006 22:02

On the one hand I think that people who are at risk of dying need to come to terms with it. You've got to respect that and give them the chance to go at peace (if they do go).

But I wondered could you tell him, in the nicest way, not to be a f*ckwit, you and the family need him, so he'd better knock his attitude into shape and think positive instead... please....?

frumpygrumpy · 11/09/2006 22:03

Horribly hard. I didn't realise about the height thing. I'm wishing for you both x.

suejoneziscalmernow · 11/09/2006 22:20

I'm sure it is much harder for you if he is finding it difficult to be positive, but his transplant will not happen any faster if he is positive and his LVAD will not give up because he is not positive. I used to think that thinking positively made a difference. I nurtured my mother (the most pessimistic person I know!)through "terminal" cancer and horrible treatment and she is in remission, alive and kicking after 2 years. What happens is MUCH more related to the standard of care he's getting (which I assume is about as good as the best in the world) and sheer good fortune.

I think there were occasions when my mum got a bit tired of people trying to endlessly jolly her up and was much happier being able to share her "realistic" views sometimes.

Sometimes I let her be "realistic" in her words and sometimes I pointed out that realistic meant that we didn't know the outcome - yes the LVAD could go wrong at any time, it doesn't mean it WILL, even if it destroys platelets, I assume he can have platelet transfusions like my mum had.

The positive thinking bit is really to make life bearable for you and your girls and to be honest for him too. Can you do a deal that he will pretend that it will all be fine 6 days a week and you will pretend that it isn't for 1 day?

KristinaM · 11/09/2006 22:21

sorry I have not been following your story in detail, so apologies if this is off the wall. But do you think he might be wanting to talk to you / plan with you about what he wants to happen if it doesn't work out????

suejoneziscalmernow · 11/09/2006 22:23

Following on from Kristina's post - I know this sounds really grim but my mum was much happier once she'd worked out who was going to get which bits of her jewellery. (Which makes us sound like the Rockerfeller's!) We laugh now about how she dangled her jewellery under our noses and snatched it away. Gallows humour, I know but it helped her!

hub2dee · 11/09/2006 22:52

Yorkiegirl · 11/09/2006 23:45

Message withdrawn

Original poster

misdee · 12/09/2006 08:19

we already know what each other wants if anything does happen.

OP posts:

suejoneziscalmernow · 12/09/2006 16:37

sorry Misdee - our comments obviously weren't particularly helpful to you. Are you concerned that he is not feeling positive? What about his approach do you have an issue with?

Flamesparrow · 12/09/2006 16:43

No, thinking positive won't make things happen any faster, but it will keep him stronger (I truly believe that).

Gonna hassle people with the donor link again for you.

xxxx

Original poster

misdee · 12/09/2006 16:46

he is fine today. sorry for the short answer earlier, but it was early and was still half asleep.

we sorted out our wishes ages ago as tbh, it'll be silly to bury our heads in the sand over this. just wish we'd get a call sooner rather than later.

OP posts:

Elibean · 12/09/2006 20:50

I did'nt realize about the height thing either, had no idea. I suppose it makes sense, with a heart (as opposed to a kidney or liver), but .
I'm sorry Misdee, and glad today is better; FWIW I needed times of being utterly negative when I was seriously ill, had to go there somehow - really feel it, really face it. Especially when something really scary would happen to someone else with the same condition. Then I'd find I had more room for being positive and hopeful again, instead of less.
Thinking of you all, xxx

Flip