Tuesday, April 17, 2007

erm

Peter was at hospital today for Pacing Clinic, Transplant clinic, LVAD change over, and to see his consultant. He cant go on the ugent list. Fuck. The hospital need to pay-back three hearts into the organ donor system as they have had three urgent hearts recently. Fuckity fuckity fuck. But they are concerned about how long he has been on the LVAD and on the transplant list, and he is top of the normal list. If he was fucking top of normal list then why the feck is he still bloody waiting. Oh yes, I forgot, he is too bloody tall. So what can we do (apart from remove his legs). Nothing. well nothing but wait. Oh so back to normal life.

Peter met a young man who had been on the LVAD 2 years ago for 9months. I have to agree with what he said 'you may be alive, but its no life. We are just exsisting day to day, waiting for the call. two years ago I was full of hope that by the end of the year things would be better, and life would be back to normal. I never imagined this way of life. Who does? I want to be moving onto the next stage, unfortunaly the next stage of this families lives will go one of two ways. And right now, I cant think clearly about what to do if the call doesnt come in in time. We have talked about funeral arrnagments etc, but how do you cope in such a situation. I cant imagine it. I dont want to.

Moving on from my morbid thoughts of the day.........


Lauren and her asthma. GP has agreed with me about starting her on steroids. So anotrher item for the medicine cabinets (did i mention we have 3 of them plus a kitchen cupboard full). Have also got a spare inhaler and spacer for nursery. It will be kept in a central medicine cabinet which is in the morning building. They have also put a notebook in her bag so I can check on when it has been given. I will be passing on the asthma Uk site details to the nursery as well. I have had lots of 'sorrys' today about yesterday, and for once I didnt yell at them, but they know I am not happy.

Lauren seems a lot better today, I havent heard a cough or snuffle out of her for 3hours now.

Oh, and I am starting a rather strict diet (cambridge) tomorrow. Its my own personal battle to ward off diabetes if that is possible. I carrying a LOT of excess weight, and really do need to shift it. My last lot of fasting blood results came back as borderline for diabetes. My blood sugar level was slightly too high (by .1 i think, i like to do this a lot to the docs, gets them in a small tizz). I also dont want to be fat and thirty. So that gives me 3 years lol.

So a lot going on

1 comment:

Emmie said...

Hi Sarah
Oh I'm so sad that Peter can't get on the urgent list at Harefield. I know it sounds a bit crazy but coule he go on Papworth's list instead? Would it be worth getting an appointment at Papworth to ask if they could list him as urgent if he went under their care? That may be a silly suggestion and totally impractical for you, so if it is just ignore me!

It's interesting to hear that with hearts it is harder to get them when the recipient is tall because with lungs it is the other way round. Much of the difficulty with getting lung transplants for CF people is because they are usually very small and need lungs from teenagers or children (which obviously there are far fewer donations of).

I'm thinking of you all so much and just willing that call to come for you. I can't believe its been so long. You are doing the most amazing job of being a super-Mum and super-wife. I'm determined that Peter's chance will come really soon. Take care hunni xxxxx