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Original poster

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

39 replies

misdee · 30/07/2006 21:33

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.

OP posts:
saggarmakersbottomknocker · 30/07/2006 21:35

(((Hugs)))

Original poster
misdee · 30/07/2006 21:44

thanks.

any news on lucy?

OP posts:
saggarmakersbottomknocker · 30/07/2006 21:56

Still waiting....

Original poster
misdee · 30/07/2006 21:56

no false alrms either?

theres no hope when its like this.

just even a flase alarm would be good right now.

OP posts:
Christie · 30/07/2006 21:57

This reply has been deleted

Message withdrawn at poster's request.

Original poster
misdee · 30/07/2006 21:59

we have sat here and done lots of big [sighs] over the weekend.

OP posts:
saggarmakersbottomknocker · 30/07/2006 22:09

No false alarms either AFAIK. I'm not really posting on Heartline at the moment (reading though) - needed to take a break from it. I know how lucky I am to have dd with me and need to focus on the positives for a while. At least I can step back a bit though misdee - it must be much harder for you.

overtheplace · 30/07/2006 23:41

Missdee
Can i ask what this will take? Is it ultimately a "heart" transplant?

Original poster
misdee · 30/07/2006 23:46

yes, he needs a heart transplant.

www.waitingforthecall.blogspot.com is where all the details are.

he was on the list march 2005, off it between july-nov 05 after his LVAD op, been back on it since.

OP posts:
overtheplace · 30/07/2006 23:53

Who can we LOBBY here and now

Original poster
misdee · 30/07/2006 23:56

dont think you can. all we need is for people to sign up for organ donation via the link on this section.

unfortuntly we have towait for the right person to die

OP posts:
overtheplace · 30/07/2006 23:57

i know thats the worst part. It is the absolute organ donation

dejags · 30/07/2006 23:58

Misdee,

Not sure what to say, except that I really feel for you. You, Peter and the girls so deserve that call.

You are bound to have crap days, I reckon you shouldn't feel guilty about feeling sorry for yourself somedays and that they may even have some therapeutic value.

I always feel inadequate posting on your threads, just didn't want to let this one go without posting.

dejags
x

overtheplace · 30/07/2006 23:59

prayers, thoughts, hopes, and evrything on my side is with you, Peter and your lovely girls

Original poster
misdee · 31/07/2006 00:03

thanks.

i better get off to bed. i am an insoniac most nights, but it gets worse when i am like this. i just lie there and my mind wont switch off, then i panic because if the call comes then i wont be in a fit state to drive there, and then i feel awful for not being able to getthere. et ect.

OP posts:
sallystrawberry · 31/07/2006 00:04

This reply has been deleted

Message withdrawn at poster's request.

Heartmum2Jamie · 31/07/2006 00:08

((((HUGS)))) Misdee (and sagger!) I added UK Transplant as a link to my blog today (every little helps right?). I really hope that Peter & Lucy get their calls soon.

DollyP · 31/07/2006 10:14

Sending you hugs misdee, and hoping you feel a bit better today.

X

LucyJu · 31/07/2006 10:43

Hoping you feel a bit better today, Misdee.

I have some small idea of how much of a strain situations like yours can be. Dh's health isn't very good, and a few years ago things got critical. He was constantly in and out of hospital over a 2-3 year period and at times it seemed as if he had reached the end of the line.

I know what it is like, living your life in limbo, never feeling able to make plans, feeling as if everything is on "hold".

I also know what it is like when people always start their conversations with "How's Peter?" (Yes, I'm married to one as well). And thinking "What about me? Nobody ever bothers asking how I am!". And then feeling really bad about thinking that way.

I really hope that your call comes soon.

Look after yourself.

Original poster
misdee · 31/07/2006 10:47

today i am feeling worse. there was a transplant call for someone else this morning, they are still waiting to see if its happening or not.

my head is f*cked.

OP posts:
Lio · 31/07/2006 10:54

Hi misdee, I've been following your story and thought of you when my new-and-improved donor card/NHS register thing arrived the other day. Just wanted you to know that strong thoughts are being beamed at you all.

Original poster
misdee · 31/07/2006 10:55

i mean october to april, one transplant at harefield.

in the last 5 weeks, 4 have been performed, and more calls have come in. but none for us.

limbo is not really the right word is it lucy? more like eternal hell

OP posts:
noddyholder · 31/07/2006 10:56

Any call even if it is for someone else shows you that even though it seems an endless wait the time does come.I think it is really hard for you with 3 little ones and everything else you deal with.Do you think having Peter home over the weekend made it all seem even more'real'iykwim?How was he at home?Can he get about at all or do you do everything?

Original poster
misdee · 31/07/2006 10:57

weekend was fine. i just have to keep the floors clear for his trolly(not an easy task with kids about). very tiring though.

OP posts:
noddyholder · 31/07/2006 10:58

Agree that sometimes the partner gets sidelined sometimes i look at dp and wonder how he coped.No one ever looked out for him from what I remember he just soldiered on.I am going to be extra nice to him tonight and cook him a lovely dinner.You have reminded me how lucky I am and how far we have come as a family.I really hope the same happens for you asap I think of you a lot xxxx

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