Friday, 31 July 2009

One down

Yesterday I completed test one of the transplant assessment. I want to say I was a little surprised by what I saw yesterday but I wasn't really. I'm not stupid, I know I'm not going into this transplant in the best of condition but still what happened yesterday took me by surprise a little. I was sat in the TDC waiting area waiting to see the dentist. Transplant requires you have good teeth, I have recently seen my own dentist but its a case of having the boxes ticked so I had to see the transplant centre's dentist also. Whilst we were sat chatting and waiting a lady in a chair and dressing gown was pushed in front of us, she said thankyou to the porter and off he went. A nurse approached her and verified who she was and that she'd come from the transplant unit. After a few minutes she looked at me and said "I hope you don't mind me asking but that oxygen you have in that bag (a back pack) do you find it heavy?" I said "yep that's what I have my carer for" whilst looking at mum! She then replied "yeh I have oxygen too but I don't use it when I'm supposed to because I find it too heavy to carry".
I sat and thought for a minute, this lady was in her early 60s, was probably in for a lung transplant assessment, yet she didn't look out of breath and could pick and choose when she used her oxygen. I tried to get my head round how different our situations actually were and just couldn't. I knew I was going into transplant in a not so great state but that was a shocker. Anyway, the maxillofacial department seemed to think I was in inpatients also and as a result my notes were on the transplant unit, a nurse came out and said "is it the cystic fibrosis (CF) unit your under or the transplant unit?" I looked puzzled "neither at the moment, I'm on the transplant unit next week". A common mistake alot of medical staff make, they presume you have a condition before you even open your mouth, because I'm young, on oxygen, quite small and going into transplant they presume I have CF. You know what they say about books and covers? Well that couldn't be a better example.
I got called in to see the dentist, he looked terrified and so was very accommodating, didn't bother to push the dentist chair back let alone do an xray, gave me basic oral hygiene info and said all was fine. Thumbs up there!
The rest of the assessment takes place next week, I'll be taking my netbook so I will be blogging probably late at night when I have allsorts flying round in my head and no I don't mean the sweets... I'm not worried about the tests themselves, apart from the RHC they're all tests I've had before, I've had so much bad news lately the assessment just has to go well...


loulou said...

I really hope it all goes well for you...I remember the exact same scenario when I was admitted for assessment, there was even a girl skipping behind me down the corridor and leaping into her fellas arms! My jaw was left wide open as I painfully struggled to push along my oxygen cylinder on a trolley to get to my room. Yes, there really is a stark difference to the level of deterioration at the time of listing. From what I've learned, I was in a terrible way and ideally should have been listed much much earlier. Hunny, I will be thinking of you eveyr step of the way. You're young and beautiful and deserve the very very best pair of lungs. Mwoah xxx

Tori said...

I have my fingers crossed for you :)

Cough Of Death said...

ILY rachy. good luck my dearest! and psh ppl always assume its CF.

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