Just a quick update.. After 3 weeks on IVs I came off them. I was supposed to go up to the hosp for a lung function, weight check, sats check etc but when I got up there I couldn't find a parking place anywhere. Was extremely frustrating, so I had to cancel and go home. In the end, Alex did my final flush and took out my port needle, my mum did my lung function and I just emailed the hospital my results.
Sadly, my lung function hadn't come up much, if at all. The results were 64% and 98%. The 98% obviously is amazing for me, but that one isn't as important as the other one (the 64%).
So I have my follow up appointment for my annual review on 29th, so I will finally see a doctor other than Barbara- who is the person I see every time I go to Lind Ward to get IVs. It will be good to get someone else's opinion on what I should be doing.