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Cystic Fibrosis in Adults
Former Member
Posts: 1,876,323 The Mix Honorary Guru
Anyone have any experience of Cystic Fibrosis starting in adults?
Yesterday I was diagnosed with bronchiectasis (abnormal widening, scarring and gunking up of your breathing tubes) nearly 4 years after my first abnormal chest xray. The middle lobe of my right lung is irreversibly damaged, but it's pretty localised, so not too bad - for now.
Anyway, my consultant wants to refer me to a Cystic Fibrosis specialist for genetic testing, because I have a couple of other classic symptoms, and, well, CF kills you, so it's good to rule out. Thing is, I was always under the impression that this was a young person's disease, so this has totally floored me.
Apparently it's rare, but if you have a really mild version, you can start with your symptoms as an adult, and they progress slower. It's unlikely, but possible, in my case, especially as my bronciectasis has no other obvious cause. So of course I googled furiously as soon as I got home, and the internet tells me anything from 'you can expect to be dead by 40' to 'you will live a generally normal and long life'. So I don't really know what I should legitimately be worrying about possibly having!
I know it's a long shot, but does anyone have any personal experience with this? All the reliable info I've found relates to CF diagnosed in babies and kids and I obv don't have that version or I likely would be already dead :nervous:
Yesterday I was diagnosed with bronchiectasis (abnormal widening, scarring and gunking up of your breathing tubes) nearly 4 years after my first abnormal chest xray. The middle lobe of my right lung is irreversibly damaged, but it's pretty localised, so not too bad - for now.
Anyway, my consultant wants to refer me to a Cystic Fibrosis specialist for genetic testing, because I have a couple of other classic symptoms, and, well, CF kills you, so it's good to rule out. Thing is, I was always under the impression that this was a young person's disease, so this has totally floored me.
Apparently it's rare, but if you have a really mild version, you can start with your symptoms as an adult, and they progress slower. It's unlikely, but possible, in my case, especially as my bronciectasis has no other obvious cause. So of course I googled furiously as soon as I got home, and the internet tells me anything from 'you can expect to be dead by 40' to 'you will live a generally normal and long life'. So I don't really know what I should legitimately be worrying about possibly having!
I know it's a long shot, but does anyone have any personal experience with this? All the reliable info I've found relates to CF diagnosed in babies and kids and I obv don't have that version or I likely would be already dead :nervous:
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Comments
I was under the impression that CF was manageable if treated right but I could be wrong
I hope thats not what youve got Olive ((hugs))
They classify it as 'life-limiting' cause it probably won't kill you right away, but at some point down the line, you're toast. Apparently a lot of people with the classic type now make it into their forties, but the average age at death is 27. That's pretty shit.
Anyhoo, I obviously don't have that version. But apparently in the last few years they've discovered that it's not just one specific mutation of the gene, but hundreds of different kinds, and that possibly there are all these mild, previously undiagnosed cases that they just didn't consider before. What I don't know is if these previously undiagnosed people just lived normal lives, and it didn't really hinder them, or if they lived relatively normal lives until they died mysteriously of pneumonia or respiratory failure in their 50s or 60s, cause the internet is telling me both versions and is v unreliable.
Thanks. I hope it's not what I've got too!
Not that I'm aware of! Which is encouraging, I guess. But then on the other hand, because we're dealing with a milder case, so maybe there is and they just don't know about it!
Thank you
I have actually come a long way with it in the last year. I switched to the Sheffield hospitals and they're head and shoulders over Leeds. I have two really good consultants hatching plans left, right and centre, and I finally do feel taken seriously. The only frustrating thing now is how long everything takes. Although at least now a 3 month appointment is in 3 months. In Leeds it could take anywhere up to a year.
There will be implications, but it shouldn't be catastrophic
Obv he'd need to be tested. And it can affect your fertility, so that might be an issue too. And considering it has the potential to make me die earlier than I'd like, we'd need to think about if that's fair to put kids through. But then again the bronchiectasis has that issue, so it's already in the pot, and 'earlier' might mean 65 or 70 instead of 75 or 80, so probs a non issue there, too!
Hope you get some speedy answers Olive, it's not nice being left in the lurch! Try not to research it too much either, I think the possibilities of scaring yourself is so easy with the amount of stuff on the net these days!
There's some kind of balance between reassurance and fear, and I never get the balance right!
My cousin has CF. She's now 28. Still going strong, but she's been told she'll need a lung transplant at some point and that she should get herself on the waiting list, even though she currently feels okay.