Clinic Update...

What a hectic weekend it has been! The insomnia has been horrific but hopefully that will soon go away. So, on Friday (21st April), I had my first clinic appointment at my Adult CF Unit. Unfortunately, it did not go as well as I would have liked, but I managed to pick out the positives from the negatives. 

For example, my Lung Function is still the lowest it has ever been - 59%. However, when I was discharged my LF was 53. So thats a 7%, with all the physio and exercise I have been able to do. 

I think as a CFer, I focus alot on numbers. I focus on the percentage of my Lung Function, the numbers from my bloods and even the number of times I have been admitted to hospital within a year! But, we should focus more on how we feel! Unfortunately, I  haven't felt very well or how I usually do after a two week course of IVs, so I knew it wouldn't be an instant change, but a gradual one. My insomnia has been really problematic also. Despite being on melatonin, it has not been as effective as I would like, but this due to other stress factors such as exams and health! Today, I rang my Adult team and my Consultant confirmed I could go on Home IVs. The drug is called Caspofungin and it is going to be a long term thing for a while until a plan is figured out whilst I am in hospital! My Consultant also asked me to come in for a trial of the drug and something to help aid my sleeping. 

This post has not been positive in the slighest, but with Cystic Fibrosis, highs are highs and lows are lows. It is hard to see other people my age getting on with their lives and going to school or going out with their friends. The things I used to enjoy so much have been slowly taken away from me for a little while but I will get them back. Let's hope we have some more answers soon ♡ All my love, Nube xxx