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Cystic Fibrosis in Adults

Former MemberFormer 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:

Comments

  • Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    my cousin's husband has CF and he is 27 or so and still going strong. he sings tenor as well incidentally.

    I was under the impression that CF was manageable if treated right but I could be wrong
  • Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    my cousins gf has CF and is in her 30s. Shes recently had a lung transplant and is doing really well.

    I hope thats not what youve got Olive ((hugs))
  • Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    my cousin has cystic fibrosis, she recently had a double lung transplant and is doing well :) i had no idea it could start in adulthood, it's good you are having genetic testing though. i had it done recently to see if i carried the cf gene and it came back negative. can i ask if you have any cf in your family? you probably already know this but for you to have inherited cf both your parents have to have the faulty gene and this is very rare. if one of your parents has the faulty gene and one has a healthy gene there is a possability you could carry the cf gene but this doesnt make you a carrier. i hope the genetic testing goes okay tho, they were really nice to me when i went and provided a lot of info :)
  • Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    I was under the impression that CF was manageable if treated right but I could be wrong

    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.
    I hope thats not what youve got Olive ((hugs))

    Thanks. I hope it's not what I've got too! :)
    can i ask if you have any cf in your family?

    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!
  • Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    whilst i hope thats not what youve got, I hope you get some answers soon. I know youve been battling so long to find out the cause of your ill health. At least this way you might get taken seriously
  • Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    whilst i hope thats not what youve got, I hope you get some answers soon. I know youve been battling so long to find out the cause of your ill health. At least this way you might get taken seriously

    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.
  • Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    if it turns out to be that, will it affect your babymaking plans, or will it be ok as long as your partner isnt a carrier?
  • Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    if it turns out to be that, will it affect your babymaking plans, or will it be ok as long as your partner isnt a carrier?

    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!
  • Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    I can imagine it floored you, glad you got a diagnosis after all this time though, and I hope it isn't CF
  • Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    I don't know anything about CF unfortunately :( But I thought I'd pop in and wish you the best anyways =]
  • Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    I've nursed a few children with CF and a friend of mine is 29 with CF and he had a double lung transplant, gets recurrent infections/pneumonia but seems happy.

    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!
  • Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    Thanks everyone. I know it's still unlikely, but sometimes it helps to air these things.
    Curvy_lass wrote: »
    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!
  • Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    Hello, you can't develop CF as an adult as its something you are born with, how ever its becoming more common (apparently) for adults to be diagnosed. It must be scary to be faced with this, especially as the internet has lots of stories about people who are very ill with CF and life expectancy etc but thats mostly for people who have been ill with CF since they were very young (in many cases from day 1) and treatment is improving all the time- they have even started genetic trials for some mutations. The CF trust has a forum where you could chat to others in the same boat, again try not to panic if you read about people are the "bad" end of the spectrum, it doesn't mean your going to go through the same thing, the link is http://www.cftrust.org.uk/forum/viewforum.php?f=3
  • Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    I find it very surprising that you can grow up not knowing you have CF. I don't think anyone lives to be 40, from what I was told.

    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.
  • Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    There are a handful of people who are in their 60's with CF. I've also heard about adults being diagnosed, often it comes to light when males are having problems conceiving which are looked into and its found they have CF, obviously a mild form of it as they managed to be so well but CF.
  • Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    Well, you learn something new every day.
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