Tuesday, 21 October 2014

UPDATES

I haven't posted in ages and the truth is I have had so much going on!

Whenever I have tried to post I haven't been able to think of what to write or I just haven't had enough time to properly sit down and write a proper post.

When I last wrote a post on here it was before my GCSE's or just starting them in June and now its October! It only seems logical to start where I ended and talk to you about my exams.
After a painful summer of waiting for my results I finally got them on the 21st of August and I am pleased to say I got 1A*, 3As, 4Bs and 3Cs. Which I was very happy about and was able to continue onto sixth form and start the A levels I originally wanted to do. (Biology, Chemistry, Psychology and RS)

I then made a big decision health wise and moved over to adults. Which was a great decision in the end! I hadn't been very well since GCSE's, I had been in hospital during the exam period and then for 3 weeks after to try and eradicate my mycobacterium absessus with sadly no luck. After that I had my transition appointment and decided my condition was becoming to complex to be managed by paediatrics and so the move was necessary. When joining the adult clinic my lung function had dropped again to 50%, discussing with the consultants there we finally found out that if I got worse and needed a transplant I wouldn't be accepted onto the list due to the absessus. My weight was also a massive issue at the time being underweight wasn't helping my overall health either.
I then went back to school and continued my studies until I started getting really breathless when walking and struggled for breath, with that I had my first inpatient stay at adults.
My Lung function had decreased again to 48% this was starting to worry me considering at the start of the year my lung function was at 70%.
I have now finished my two week stay in hospital, the ward is really nice they have smart TV's with netflix and the physio has been so good! I've been put on appetite stimulants and also mannitol which is a dry powder version of hypertonic saline.
After my two week stay my lung function had gone from 48% to 54%! Which I was so pleased about, I now have to carry on ivs at home for another 6 weeks!
I am also going to the gym to get fitter and try to increase this lung function even more! And my weight went up too, so everything is looking very positive!

I am also doing my own ivs now so its a great feeling of independence and responsibility!


So that was a quick update of everything going on at the moment! (I think I might post something a bit more interesting in a little while so stay tuned! - this was just a bit of an update post)

-Stay Lovely xx

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