I'm just starting the process of being checked for Cystic Fibrosis.
I don't have bronch (my lungs are actually in pretty good nick according to chest CT), but I do have crappy mucus-led asthma, and now have brittle Type 3c diabetes, general pancreas crapness and some GI problems. I've always been small and skinny, get a lot of chest and sinus infections and can't deal with having much fat in my diet. I also have an oropharangeal candidiasis which has been with me for nine months now... though it is less rampant now my diabetes is being treated.
I also have a few other obscure symptoms that I won't go into because it would be way TMI, but they're also possibly CF-related.
So... I tick a lot of boxes in terms of phenotype (symptoms).
On the other hand, I feel like my symptoms aren't 'bad enough' for it to be CF. Though I have to remind myself that I'm on about 20 different meds to control them! I also realise that I've 'normalised' a lot of my stuff - I guess we all do that? My BMI goes between 16 and 19, so when it's over 17 I feel like it's not bad at all, but I realise that this is still lower than many people with CF.
Anyway, I've had my first sweat test, and my bloods are off being checked for the typical CF genetics.
My understanding is that, based on both of these, they then sort you into one of 3 piles: Definitely CF, CF likely and CF unlikely. If you're in the likely/unlikely pile then they make a clinical judgement, or follow you up for a while to see how things go.
In many, many ways it would make my life easier if I get the diagnosis - I'm on most of the drugs they use anyway, and it would bring my resp, GI, diabetes and rheum care all under one team. They might add in a couple more drugs that would also improve life. The also run home IVs and so on, which would be really good as I've spent 30 nights in hospital since xmas and I'm fed up of it.
I'm just wondering if anyone else has been through the process, and how you found it? The CF team are amazing - have been totally lovely. I feel so odd to be sat here hoping that I have it, but having an explanation that draws everything together, and specialist treatment that isn't all fragmented would be so helpful.
Any experiences you can share? I am feeling a bit lonely about it!