Well, I am writing this from home (yay!) although I did have to change to IV antibiotics today. My infection markers are still quite high, plus I have developed terrible headaches which wake me in the early hours of the morning. These are likely to be related to high carbon dioxide levels overnight, so is a sign that my lungs are struggling somewhat. I am using my oxygen 24/7 at the moment but hopefully can reduce this down when my infection has cleared up. Thankfully the doc agreed that I was fit enough to do my IV's at home, so I will just pop up later in the week to get my bloods rechecked, and hopefully it wont be too long before I am back on the active list.
It was interesting to find out today that the transplant team had been discussing my post op pain management with the CF team. They had been a little concerned that the pain seemed non responsive to some standard treatments, so have been considering alternative drugs they could use post transplant. Personally I think the main issue was that I had to continue doing regular physiotherapy for my CF with a wound across my chest - this was clearly exacerbating the pain, as was coughing in general. After a transplant I wont have dodgy lungs any more, so this should not be a great problem. Either way, it's good to hear that they were listening to me when I said it was 'still sore' and hopefully next time round they will have some tricks up their sleeves if I am struggling at all.
On a positive note, I did have a lovely 'birthday weekend'. I had some friends over on Saturday for a catch up, and bite to eat. Luckily mum was here on Friday and had pre-prepared everything for me, so I didn't have to really lift a finger all day, and Andrew was there to pour drinks, dish up the food and do all the clearing up. There are some perks to being ill. On Sunday my good friend Fi came to visit (with her lovely dog who ate all Sebs chew sticks haha!) Later in the afternoon another friend popped in with a birthday present for me, so all in all I had a lovely weekend and was thoroughly spoilt.
In my opinion everyone should have a 'birthday week' so I still have several days left of pampering. I don't take my cards down for an entire week either - I think you should be able to enjoy them for more than one day. So, on that note I am away to put my feet up and relax...
4 comments:
Birthday weeks are the only way to go ;) Think it's right that you're on IVs...get you back on that list asap! Higs xx
Hey
Just to say that we had a lovely time on Saturday (and the food was great including the truffle doggy bags :) he he) - didn't realise you were a secret bowling champion though! Glad you enjoyed your birthday weekend and hope you have a relaxing time for the rest of your birthday week!
Chat soon xxx
Peat ate all Seb's chews cos he's not fussy ;) He's a proper dog.
Thank you for having a birthday week and letting us come and celebrate with you. I hope you feel a wee bit better soon
xxx
Fi
Good to hear you had a fab birthday hun shame you couldnt have stretched it out for another week ;-)
Loadsa love
xxx
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