Sunday, 11 August 2013

Clinic, transplants & a well deserved holiday

My IVs finished Wednesday evening so straight after mum pulled the gripper out I jumped straight in the bath - nothing is nicer than a post IV bath! Tom came with me to clinic on Friday obs were the same as before, lung function was down a bit though but dr ho said he wasn't too worried about it but to keep an eye on how I feel & if I start to decline to go straight back. He did mention about steroids again if my lung function does deteriorate and I briefly said my concerns..that I was so low when I was last on them, even just 5mg, so he said we can cross that bridge if we come to it. They're so good there, never put your feelings to one side :) so now it's just a case of carrying on as normal and keeping an eye on things. I keep getting patches where I feel crap but it's not all the time luckily.

Two very amazing girls both received a double lung transplant yesterday! Such fabulous news :) Kirstie had a dbl lung tx 2 years ago but recently suffered with chronic rejection and deteriorated very quickly..they had such a tiny window to find lungs and by some miracle and the caring nature of a donor and their family Kirstie managed to get a new pair of lungs! And Katie who is only 14 received her dbl lung tx too yesterday! This is why joining the organ donation register is SO important, to give people another chance at life is just incredible. Please please please go on go the organ donation website and sign takes two minutes.
It always makes you think, you have no idea if and when you'll need a transplant. I could need one next year or 20 years down the line or I could never need one. You just don't know but when you see people as strong as these two girls to through this it makes you feel inspired & brings the cf community together. I try not to think too much about the future, I know how it feels to be that sick when my lung function was 16% and I was just lifeless..somehow I came back from that but it does make me wonder wether if that happened again whether I'd get back from it or if that would be how it's going to stay. You never know what's round the corner, just always be grateful for the ones that love and support you because you never know when you'll need them the most.

I'm still feeling pretty tired from my hospital stay, IVs and then trying to do too much when I came out of hospital but I'm doing what my dr ordered and going on holiday next week. Mum, Dad and I have booked a stunning apartment in Ilfracombe, Devon. Very excited, it'll be lovely to just get away for week :)
Please keep Kirstie and Katie in your thoughts whilst they recover from their transplants :)

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