A little update from last blog post!
As usual thanks to kalydeco and maybe a little help from steroids this tim and a mix up of different ivse, I made a quick turn around and left hospital on day 7 to continue another 3 days of ivs at home!
My sats stabilised back up to 94-96%, lung function increased to 26% that's the highest its been since starting kalydeco and a great increase on my admission of 18% ,my weight jumped up to 40kg within a few days of being on steroids!
I continued my steroid dose at home until I finished ivs then lowered the dose by 1 tablet every 3 days until I finished.
I have been non stop since I left hospital, I haven't sat down, I love this feeling of having so much energy and lungs not stopping me so much from doing things...or at least as much, I still sound awful but feel great so I don't care!
I have to admit after finishing steroids I have noticed my energy levels dipping and I have gone slightly tight but im not relying on steroids, I never have and I never will until I have a transplant!
So im really trying to keep healthy at the moment and push my body, like I said I haven't sat down or had any "bad days" really yet apart from being a bit hung over after the bank holiday haha
ive started using my parents treadmill. now to others it wont seem a lot but for someone who does NO fitness its a start and im not running before I can walk! so I been doing 20-40 mins every other day 2 mins of fast walking then 2 mins of slow walking on oxygen as I cope better and already im starting to feel the benefit! my legs feel bit stronger and its like doing an extra physio session which is good for these old lungs of mine!
also sometimes I wonder when im walking around and getting tired if its not only my lungs but lack of fitness, it must play a part so hopefully doing this little bit of exercise will help me a lot!
I have clinic next week so really hope my lung functions still up or would be a miracle if it had gone up even more!! thinking positive!
that's all I have to report
:)
As usual thanks to kalydeco and maybe a little help from steroids this tim and a mix up of different ivse, I made a quick turn around and left hospital on day 7 to continue another 3 days of ivs at home!
My sats stabilised back up to 94-96%, lung function increased to 26% that's the highest its been since starting kalydeco and a great increase on my admission of 18% ,my weight jumped up to 40kg within a few days of being on steroids!
I continued my steroid dose at home until I finished ivs then lowered the dose by 1 tablet every 3 days until I finished.
I have been non stop since I left hospital, I haven't sat down, I love this feeling of having so much energy and lungs not stopping me so much from doing things...or at least as much, I still sound awful but feel great so I don't care!
I have to admit after finishing steroids I have noticed my energy levels dipping and I have gone slightly tight but im not relying on steroids, I never have and I never will until I have a transplant!
So im really trying to keep healthy at the moment and push my body, like I said I haven't sat down or had any "bad days" really yet apart from being a bit hung over after the bank holiday haha
ive started using my parents treadmill. now to others it wont seem a lot but for someone who does NO fitness its a start and im not running before I can walk! so I been doing 20-40 mins every other day 2 mins of fast walking then 2 mins of slow walking on oxygen as I cope better and already im starting to feel the benefit! my legs feel bit stronger and its like doing an extra physio session which is good for these old lungs of mine!
also sometimes I wonder when im walking around and getting tired if its not only my lungs but lack of fitness, it must play a part so hopefully doing this little bit of exercise will help me a lot!
I have clinic next week so really hope my lung functions still up or would be a miracle if it had gone up even more!! thinking positive!
that's all I have to report
:)
Yay well done on the exercise! I feel it has definitely helped me so far and I actually have muscles now- can you believe it ;) haha. Stay well, might see you at clinic next week xo
ReplyDeleteGood for you, George! We'll be arriving in Scotland on May 16, then heading down to London on May 20th. Let us know if you are up to meeting and shopping with Savannah while we are in your neck of the woods! Congrats on feeling better!!!!
ReplyDelete