Self management only works if you know what you are meant to be doing... diagnosed with bronchiectasis 3yrs ago, but only now do I feel like I'm getting a bit of a handle on it. Have felt awful most of the year. Took advice from mates in pharmacy and other patients on Twitter. Have come out of appointment with array of tests (it goes on to a second sheet), two new drugs and the option of a third, instruction to take larger steroid doses, and a referral to physio. Pleased I'm getting treated like others now, but frustrated that it took lots of reading and advice to get to the stage where I knew enough to question how I'm being treated. Having spent the day on Monday discussing structured education for people with diabetes, it's annoying that the same isn't there for my condition.
I went in with a list of tests I wanted, a request for physio, and the hope if get a flutter or acapella. Whilst there was some initial dismissive noise, this was overcome. Once I did a bit of name dropping and mentioned my research interests, everything became much easier. Everything on my list for ticked off. Still, whilst I've got what i wanted, i still don't feel like i understand the casual mechanisms behind the symptoms I get, or am fully in control of the trajectory of my disease. Really, I want to retain the hope that I'll keep my lung function by managing my behaviour, and if I have to take a fucktonne of drugs, I want to know I can control the side effects. I don't think I have all the tools yet, but that's what I am after. I think I'm up to 12 different drugs now.
PF was 700l/min
A1AT was 0.8 g/l