Advertisement
If you have a new account but are having problems posting or verifying your account, please email us on hello@boards.ie for help. Thanks :)
Hello all! Please ensure that you are posting a new thread or question in the appropriate forum. The Feedback forum is overwhelmed with questions that are having to be moved elsewhere. If you need help to verify your account contact hello@boards.ie

Now ye're talking - to someone with Cystic Fibrosis

  • 15-01-2019 12:49pm
    #1
    Boards.ie Employee Posts: 12,597 ✭✭✭✭✭Boards.ie: Niamh
    Boards.ie Community Manager


    Welcome to our first first AMA of 2019 everyone!

    Today's guest is a woman who has Cystic Fibrosis. It's a condition which requires constant monitoring and medication. Ireland has the highest incidence in the world of Cystic Fibrosis per head of population and also has some of the most severe strains of it. Our guest is here to answer your questions about her experience of life with CF.

    What is Cystic Fibrosis?
    Cystic fibrosis (CF) is an inherited chronic disease that primarily affects the lungs and digestive system of about 1,300 children and adults in the Ireland (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:
    • clogs the lungs and leads to life-threatening lung infections; and
    • obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
    In the 1950s, few children with cystic fibrosis lived to attend primary school. Today, advances in research and medical treatments, including in Ireland, have further enhanced and extended life for children and adults with CF. Many people with the disease in Ireland can now expect to live into their 30s, 40s and beyond. People with CF in Ireland are increasingly going on to attend third level colleges, accessing employment, and living more independent lives, with the support of family and friends.

    Let's get the AMA forum off to a great start with some questions for Succubus_ :cool:

    [Info above is from Cystic Fibrosis Ireland]


«1

Comments

  • Closed Accounts Posts: 1,149 ✭✭✭Ariadne


    Hello everyone, I'm delighted to do the first AMA of 2019. Feel free to ask away about anything CF related :)


  • Posts: 21,679 ✭✭✭✭ Markus Blue Umpire


    Hello! Delighted to see doing this AMA :)


  • Closed Accounts Posts: 23,646 ✭✭✭✭ Harry Handsome Bulldog


    Hey. Thanks for doing this AMA. I lost two very young cousins to this illness so I’m delighted to see you kicking its ass.

    What was it like for you growing up with CF?


  • Closed Accounts Posts: 23,646 ✭✭✭✭ Harry Handsome Bulldog


    Also, I read somewhere a while ago that CF seems to be an Irish disease, and became apparent around the time of the Irish famine. Is there any truth to that, do you know?


  • Closed Accounts Posts: 1,149 ✭✭✭Ariadne


    Hey. Thanks for doing this AMA. I lost two very young cousins to this illness so I’m delighted to see you kicking its ass.

    What was it like for you growing up with CF?


    Thank you very much for your question Shoesday :)



    I'm very sorry to hear that you lost two very young cousins to CF. I feel very lucky to still be here and still doing relatively well as I know many others haven't been as fortunate.



    I'm unusual in the sense that I was diagnosed with CF when I was fourteen, so I thought I was just like everyone else. Most people with CF are diagnosed as babies or small children. I did get frequent chest infections and colds as a child and I was misdiagnosed with asthma when I was thirteen because I started to have a chronic cough around the age of eleven. So, I suppose I had a pretty normal childhood in the sense that I didn't know I had CF and so I wasn't doing the heavy treatment regime that was needed. I got away with it in that sense :)


  • Advertisement
  • Closed Accounts Posts: 1,149 ✭✭✭Ariadne


    Also, I read somewhere a while ago that CF seems to be an Irish disease, and became apparent around the time of the Irish famine. Is there any truth to that, do you know?


    Oh thank you for this question, I haven't heard this before. We do have the highest incidence of CF in the world per capita (1 in 19 Irish people carry one CF gene) but it isn't an Irish disease.



    I suspect we have such a high incidence possibly because we've been a bit more isolated on an island and so the gene pool is smaller. Also because CF is more common in white people though it is also found in other races, but it tends to be more rare.



    We don't know exactly how long CF has been around but one of the genes I have (which is the more severe one, DeltaF508) is thousands of years old. People wonder why it has survived since it's such a deadly gene so there have been theories about the benefits CF can offer, such as being more resistant to typhoid fever and cholera. Though we don't know why it's more prevalent in Ireland then as that wouldn't have been a prevalent disease here compared to other countries.



    CF wasn't officially recognised as a disease until the 1930s but in European folklore there was a saying “woe is the child who tastes salty from a kiss on the brow, for he is cursed, and soon must die”. I think that was in the 16th century or so. People with CF lose a lot of salt through their skin and often taste salty to kiss so this is what people must have realised.




  • I have no question. Just want to thank Boards for this discussion and wishing Succubus and all those living with CF all the best.


  • Registered Users Posts: 4,814 ✭✭✭harry Bailey esq


    So Id be wasting me time trying to sell you cheap tobacco so :(


  • Closed Accounts Posts: 1,149 ✭✭✭Ariadne


    So Id be wasting me time trying to sell you cheap tobacco so :(


    Well we're all human and some people with CF do smoke. I don't know how they do it because even if someone smokes around me outside I start to cough but maybe their lungs are in better shape than mine.


  • Registered Users Posts: 4,814 ✭✭✭harry Bailey esq


    Succubus_ wrote: »
    Hello everyone, I'm delighted to do the first AMA of 2019. Feel free to ask away about anything CF related :)

    Fair dues cleo. It's a lot more common than people think so it'll help a lot of people


  • Advertisement
  • Moderators, Social & Fun Moderators, Regional East Moderators, Regional North West Moderators Posts: 11,918 Mod ✭✭✭✭miamee


    Do you have to follow a strict diet or avoid certain foods, like maybe dairy?

    Will you need a lung transplant at some point in the future or is that not the case for everyone with CF? I don't know much about the disease but would have read a bit in the media about Orla Tinsley being on the waiting list last year and eventually getting a transplant.


  • Registered Users Posts: 19,854 ✭✭✭✭MetzgerMeister


    Thank you Succubus for doing this AMA.

    My sister was diagnosed with CF at the age of seven. She is incredibly active although her lung function fluctuates from time to time. I also have a friend who had a double lung transplant a few years ago and is doing very very well.

    How does CF affect you physically?


  • Closed Accounts Posts: 1,149 ✭✭✭Ariadne


    miamee wrote: »
    Do you have to follow a strict diet or avoid certain foods, like maybe dairy?

    Will you need a lung transplant at some point in the future or is that not the case for everyone with CF? I don't know much about the disease but would have read a bit in the media about Orla Tinsley being on the waiting list last year and eventually getting a transplant.


    Thank you for your questions Miamee :)

    I should really avoid certain foods because I have acid reflux which is very common in CF. I take several different medications for it but it can still aggravate my lungs (the acid can leak into the lungs and inflame them) and make me cough which makes me vomit at least a couple of times a week. It's usually brought on if I eat something or climb the stairs, if a coughing fit is brought on really. With reflux you're supposed to avoid a lot of foods, like spicy food, onions, chocolate, garlic, tomatoes, caffeine and alcohol. I try to take it easy on the alcohol and spicy foods but that's about it. I find it too restrictive to cut out all of the above foods. I haven't noticed any food that particularly makes my lungs worse but my lungs are definitely more productive (produce more mucus) the day after I drink alcohol.


    Most people with CF need a lung transplant at some point really, so I will need one in the future, though nobody can tell me when. My lung function is 51% when well and you're generally referred for transplant when it reaches 30% so it really just depends on how quickly or slowly my lungs deteriorate. For example, when I was 19 my lung function was brilliant, it was 93% at best, now 11 years later it's 51%. So the main thing is to do as much treatment as possible to try to slow down the deterioration and that's about all you can do really. It's brilliant that Orla got her transplant and that it generated so much awareness of CF and organ donation. I've heard it's like a new lease of life for people getting new lungs, though it comes with its own complications.


  • Closed Accounts Posts: 23,646 ✭✭✭✭ Harry Handsome Bulldog


    Is there exercises or physio that you have to do to keep your lung function up or is it more down to how you take care of yourself (medication not smoking/drinking)

    Did you know anything about the illness before you were diagnosed yourself?

    I enjoy reading your posts across boards and notice you always tend to be in good humour, and pretty positive. How do you keep yourself in such good form, considering you have a life changing condition?

    (Sorry for all the questions)


  • Closed Accounts Posts: 1,149 ✭✭✭Ariadne


    Thank you Succubus for doing this AMA.

    My sister was diagnosed with CF at the age of seven. She is incredibly active although her lung function fluctuates from time to time. I also have a friend who had a double lung transplant a few years ago and is doing very very well.

    How does CF affect you physically?


    Thank you very much for your question MetzgerMeister :)



    I'm sorry to hear that your sister has CF but I'm delighted that she's very active. Exercise is so important with CF. Unfortunately I'm really bad at that side of things but it really does help to keep you healthy and I'm working on it :)


    Physically, I suppose I find that tough to answer sometimes because I don't even realise when I'm compensating for CF. Like climbing the stairs leads to a coughing fit which can bring on vomiting, so usually I wait until I really have to go upstairs for something or if I'm ill I might ask someone to throw something down to me. Carrying things around or up the stairs can be difficult too, I can do it but it will lead to a coughing fit so usually someone else carries it for me, but I'll do it myself if it's not too heavy or there's no one else around.



    Sometimes even the steam from a shower sets me off on a coughing fit and I have to try not to puke in the shower :p I suppose I get tired more easily too, like I usually have a sit down on my bed after I climb the stairs, or I have a sit down after I hang up the washing or do something physical.



    Usually my wife or parents do the vacuuming or more physical housework. Like for example I find changing bedsheets exhausting so I change the pillow cases and my wife does the rest. Or my wife carries the washing upstairs and I hang it up. I do things like put the groceries on a table so I can put them away without bending down as it aggravates my lungs/reflux. I've gotten very good at picking things up with my feet :pac:



    I get out of breath when I'm walking so I can't walk for too long or too far. I find it difficult to walk and talk too, usually I can't say too much unless I'm walking very slowly, and I tend to walk more slowly than other people. Basically I can do most things other people can do but more slowly and with more breaks needed.



    The other thing that can sometimes cause me a bit of trouble is joint pain, it tends to happen when I have a chest infection, they thinks it because the inflammation in your lungs causes inflammation in your joints too, so my joints get sore and my body aches. I also have chronic sinusitis so tend to get frequent sinus pain and I have little to no sense of smell due to a lot of operations on my nose and chronic infections.



    Sorry if that was a bit too long :P


  • Closed Accounts Posts: 1,149 ✭✭✭Ariadne


    Is there exercises or physio that you have to do to keep your lung function up or is it more down to how you take care of yourself (medication not smoking/drinking)

    Did you know anything about the illness before you were diagnosed yourself?

    I enjoy reading your posts across boards and notice you always tend to be in good humour, and pretty positive. How do you keep yourself in such good form, considering you have a life changing condition?

    (Sorry for all the questions)

    Oh feel free to ask away! I'm glad that there's interest in the topic :)

    Well exercise is very important with CF, the physios basically torment us about it all the time. Even when I'm in hospital with a chest infection and on IVs they are torturing me on the treadmill, sadists :P The other thing that is important is physiotherapy, there are different types you can do. I do one that's called autogenic drainage. It needs to be done twice a day for about a half an hour and it's basically a breathing cycle technique that (sorry this will be gross) gathers the mucus from the bottom of your lungs and helps you to cough it up more easily. It's gentler on your lungs than coughing fits because coughing like that leads to inflammation. Some people with CF produce very little mucus and others produce loads, it depends on your health really. I used to produce very little up to the age of 19, now I produce buckets of the stuff and it's like glue :pac: Seriously, if I knock over my sputum pot the phlegm doesn't even move in there, so that shows how sticky it is and difficult to get up. Basically the more mucus you can get up the less that's down there to get infected and cause more lung damage. Sorry if all of that is TMI :o

    Actually a few months before I was diagnosed with CF, I was complaining about being ill again and my mother told me I should consider myself fortunate that I didn't have CF :pac: I didn't know what it was so I asked her and she told me it was this awful disease that leaves you bedbound and physios have to come to your house every day and you die young. Now that was all very out of date information at the time but my mother had a cousin who died of CF at the age of 17 in the 1970s so I assume that was all that she knew of it.

    I suppose I've never really thought to myself ''why me'', and I think that's because I know I'm quite lucky for someone with CF. Some people still die in their teens or early twenties and I got away without even knowing I had it until I was fourteen. A lot of people with CF spent most of their childhoods in hospital and I didn't have any of that. I didn't start need IV antibiotics until I was nineteen which is very good going and I have so far avoided some of the more difficult complications with CF. A lot of people with CF are also diabetic, have osteoporosis and liver disease and I haven't developed any of these complications (yet) though I have low bone density, they don't know if or when I will develop those complications. I take a lot of medication/inhalers/nebulisers every day but compared to some other people with CF I don't take as much medication as they do at all. So I suppose that makes me feel grateful and fortunate. I feel like I'm not as healthy as someone without CF but I'm healthier than a lot of people with CF. Sorry if my answers are too long!! It's hard to know how much to say.


  • Closed Accounts Posts: 894 ✭✭✭Corkgirl18


    Hi, thanks so much for doing this.

    I've heard that it can be very dangerous for people with CF to be around each other. Is there much truth in that?


  • Closed Accounts Posts: 1,149 ✭✭✭Ariadne


    Corkgirl18 wrote: »
    Hi, thanks so much for doing this.

    I've heard that it can be very dangerous for people with CF to be around each other. Is there much truth in that?


    Thank you very much for your question :)

    It's definitely risky for us to be around each other and we're brought into a room on our own as soon as we arrive at the clinic and we have to be in a room on our own if we're hospitalised. I might see someone with CF in passing along a corridor but that's about it. The reason for this is because the majority of us have bacteria in our lungs due to the sticky mucus we have, we take daily oral and inhaled/nebulised antibiotics but these just try to control the bacteria levels really, they don't get rid of them.

    When I say I have a chest infection what it really is called is an ''exacerbation'' or worsening of symptoms, so I might get joint pain, temperatures, my infection levels in my blood go up and my lung function drops. Then I will need a course of IV antibiotics that will last for two or three weeks and will dampen down the infection again until it flares up a few months later.

    So, I have one type of bacteria in my lungs, MRSA, some people have more than one type. Don't worry, I'm not contagious unless you've been severely burned and/or have an open wound, or if you have CF/severe lung problems. Not everyone with CF has MRSA, they may have another bacteria called pseudomonas or they could have something very dangerous called cepacia. So if I were to mix with someone who has CF I could give them MRSA on top of whatever bacteria they have already and vice versa. We could both end up having to battle more bacteria basically.

    This wasn't always known so children/adults with CF used to mix but by the time I was diagnosed the regulations had been introduced so I've never had a friend in real life with CF. Some people still risk it because they've been friends for years, and some are siblings who grew up together so they don't have a choice really. Some just don't care and risk it.

    One thing I actually find difficult is that I often have uncontrollable coughing fits in public and I find it very embarrassing as people often turn around to look at me or they move away, assuming I have a cold or the flu or something contagious. I find it quite embarrassing as sometimes I'm coughing for a few minutes and I can't control it.

    Oh edited to say that my sister is getting married in April and someone else with CF is going so we were trying to decide what to do. We've decided that we'll just sit away from each other and try to avoid each other for the day, which is a bit weird :P


  • Closed Accounts Posts: 49 MOLF Hunter


    Im sure most of us have read the story of Richard Mason, the head honcho of moneysupermarket.com who found out his 3 kids aren't his only because he was diagnosed with CF.....
    Now a couple of things... children? Is that something that you see in your futures?
    And ....when you see people like Mason (who is 55)... Does this give you a renewed joie de vivre knowing that you could perhaps have a much happier and longer life than was deemed possible when you were originally diagnosed?


  • Registered Users Posts: 916 ✭✭✭1hnr79jr65


    Nothing to ask myself as i know all too well about CF as one of my nephews aged 11 has it. Stupid and horrible affliction to have and glad to see your making it through ok with it. A friend of my sister had little girl aged 13 who died in Oct just gone, they had a pair of lungs for her but couldn't transplant as she had bad chest infection and unfortunately she lost her life.

    There are good support networks here for anyone affected, CF Mammys on facebook is a good help for those that need and can contact CFI.ie for support.

    All the best in your future. :)


  • Advertisement
  • Registered Users Posts: 2 The Sneeking Squid


    Hi succubus,

    thank you for the honest Q&A session, i think this is really interesting for most of us who don't know a lot about cystic fibrosis.

    I imagine it being quite hard if you can't meet up with friends who are going through the same or something similar. Do you have a dedicated GP or healthcare team, or do you have to see whoever is on rotation?

    Also, you seem to know a lot about this condition, but i wonder if it still surprises you sometimes with new developments or things you hadnt heard of before?

    Thank you!


    Thank you
    The Squid


  • Closed Accounts Posts: 1,149 ✭✭✭Ariadne


    Im sure most of us have read the story of Richard Mason, the head honcho of moneysupermarket.com who found out his 3 kids aren't his only because he was diagnosed with CF.....
    Now a couple of things... children? Is that something that you see in your futures?
    And ....when you see people like Mason (who is 55)... Does this give you a renewed joie de vivre knowing that you could perhaps have a much happier and longer life than was deemed possible when you were originally diagnosed?


    Thank you very much for your question Sirius, I mean MOLF ;)

    I've heard the story about Richard Mason alright. With regards to children, it's a tough decision really. About 97% of men with CF are infertile but can have children with medical intervention and some women with CF need IVF, you don't really know if you'll need IVF until you start trying. So that's one obstacle.

    The next concern would be making sure that the person I have a child with doesn't carry a CF gene, as I have two CF genes it would give my child a high chance of having CF and they'd automatically be a carrier. Though you can do a process called PGD which tests your embryos for CF and then implants the CF free ones via IVF.

    Then there's the potential health problems that I'd face, I have 51% lung function and some doctors don't recommend pregnancy if your lung function is 60% or less, and others say 50% or less. Either way I'm in a position where carrying a child could put pressure on my lungs. There are certain medications and antibiotics you can't have when you're pregnant and breastfeeding and some women lose lung function they can't regain. I've heard of some women with CF having a baby and a couple of years later needing a lung transplant or unfortunately passing away.

    Now there are quite a few women with CF who've had children in recent years and they're getting on grand and they've bounced back, but you really don't know.

    I have my reservations about having children when there's a high chance I wouldn't see them live until adulthood or I'd be very ill and unable to do things with them as they grow up. Perhaps if I desperately wanted a child I'd feel differently. I'm also a woman married to a woman so that presents obstacles too.

    Well when I was diagnosed they were telling me that some people were making it to their forties and I was a bit puzzled wondering if that was supposed to be good, until I found out what the life expectancy was previously :p When I was born my life expectancy had my parents known I had CF was 14, and I'm 30 now and not going anywhere any time soon :)

    No one can tell me how long I could live but I am hopeful I could make it into my 50s or possibly older. New drugs and medications are coming out all the time and I think that the future for children with CF looks positive, hopefully CF will become a manageable disease, like asthma or diabetes.

    With regards to diagnoses like Richard Mason, I don't really take much comfort from it. Generally speaking the older you are when you're diagnosed with CF the milder your CF tends to be, I've heard of people in their 70s and 80s being diagnosed with CF in America, I just think that they must have very mild forms of it to have lived so long undiagnosed, especially without the proper treatment.


  • Closed Accounts Posts: 49 MOLF Hunter


    Thanks for the answer succubus...hugs and soooo much love for you as always


  • Registered Users Posts: 619 ✭✭✭Dj Stiggie


    I don't really have a question, but thanks for doing the AMA. One thing a lot of people don't realise about CF is that due to cross-infection, we don't really get to connect with other people with CF. I have a cousin that I haven't seen in about 11 years because of this. So it's always interesting to get another CF'ers perspective on life and treatments.


  • Closed Accounts Posts: 1,149 ✭✭✭Ariadne


    Nothing to ask myself as i know all too well about CF as one of my nephews aged 11 has it. Stupid and horrible affliction to have and glad to see your making it through ok with it. A friend of my sister had little girl aged 13 who died in Oct just gone, they had a pair of lungs for her but couldn't transplant as she had bad chest infection and unfortunately she lost her life.

    There are good support networks here for anyone affected, CF Mammys on facebook is a good help for those that need and can contact CFI.ie for support.

    All the best in your future. :)


    Thank you for your post Sour Lemonz. I am sorry to hear that your nephew has CF but I hope he's as well as he can be and will be for a long time. I'm so sorry to hear about the friend of your sister who lost her little girl at such a young age, thirteen is far too young to pass away. It's terrible that they even had the lungs for her but she was too ill at the time to have the transplant. It's hearing about teenagers passing away from CF that makes me feel very grateful to still be alive as many others haven't been as lucky.


  • Closed Accounts Posts: 1,149 ✭✭✭Ariadne


    Hi succubus,

    thank you for the honest Q&A session, i think this is really interesting for most of us who don't know a lot about cystic fibrosis.

    I imagine it being quite hard if you can't meet up with friends who are going through the same or something similar. Do you have a dedicated GP or healthcare team, or do you have to see whoever is on rotation?

    Also, you seem to know a lot about this condition, but i wonder if it still surprises you sometimes with new developments or things you hadnt heard of before?

    Thank you!


    Thank you
    The Squid


    Hi there Squid, I'm glad to hear that it's interesting for people who don't know much about CF and thank you for your questions :)

    I suppose I'm used to not having people with CF in my life but it would be nice to be able to go to a support group sometimes as they are the only people who really understand what it's like. There are online groups but I haven't joined any as they are mostly on facebook and I don't really use facebook.

    I have a dedicated CF team, I'm living in Cork so I go to CUH and there is a team of three CF nurse specialists, two dieticians, two physiotherapists, several registrars and my CF consultant. The nurses and dieticians are always the same unless someone leaves the job, the physiotherapists tend to rotate every once in a while but some specialise in CF and are there for years. The registrars (junior doctors) rotate every year or so I think. I've had the same CF consultant since I was 19 (aside from when I moved to Dublin and had a different CF team, and I lived in the UK and had a different CF team there too). So really it's the CF nurses I have the most contact with and therefore the best relationship with. I go to the CF clinic every six weeks or if I have an infection, and then I may or may not be admitted for IVs. My GP just prescribes my regular medication, she doesn't want to go near me about anything else really for fear of messing up :pac:

    I knew almost nothing at all when I was diagnosed at fourteen and then I buried my head in the sand until I was 19, then I joined an Irish and an English CF forum and I got chatting to people with CF and I found out and discovered so much. I honestly didn't have a clue about CF before that. I still like to keep up as things change all the time and I've discovered lots of things that have surprised me along the way.


  • Closed Accounts Posts: 1,149 ✭✭✭Ariadne


    Dj Stiggie wrote: »
    I don't really have a question, but thanks for doing the AMA. One thing a lot of people don't realise about CF is that due to cross-infection, we don't really get to connect with other people with CF. I have a cousin that I haven't seen in about 11 years because of this. So it's always interesting to get another CF'ers perspective on life and treatments.


    Hi there Stiggie, nice to hear from another CFer :) We can meet up with hazmat suits on :pac: I'm glad that you're happy with the AMA because I know that everyone with CF has different opinions and perspectives on things, so this is just me and my experience. I'm sorry that you're not able to see your cousin, that must be difficult at times. I don't have any family members with CF so I don't have anyone to avoid there. Feel free to join in if you have a different opinion/perspective on a question. I hope you're doing well at the moment :)


  • Registered Users Posts: 2 The Sneeking Squid


    I'm sorry, I have another question.
    It sounds like many people probably don't know/ understand what it's like to have cystic fibrosis (or any similar conditions?), so do you ever feel like you have to explain yourself? For instance if someone stares because you are coughing or so

    Thank you
    The Squid


  • Closed Accounts Posts: 1,149 ✭✭✭Ariadne


    I'm sorry, I have another question.
    It sounds like many people probably don't know/ understand what it's like to have cystic fibrosis (or any similar conditions?), so do you ever feel like you have to explain yourself? For instance if someone stares because you are coughing or so

    Thank you
    The Squid


    Ask as many questions as you like. I think a lot of people don't know very much about CF so it always helps to raise awareness :)

    Well I can't count how many times someone has offered me a glass of water or told me that they have the same cough/cold that's going around :D If I don't know them then I just agree politely and accept the water, it's well meaning :) Sometimes strangers on the street tell me to stay off the fags, actually a few weeks ago a guy in a supermarket told me that my cough should get me a few days off school :pac:

    I find it's most awkward with acquaintances or say people I've just met at a party or event. I don't usually want to explain that I have CF so I'll say I have a cough or cold. If I'm sitting down I don't cough as much so I could spend an evening with someone and they may not realise there is something wrong with me. It's more awkward if I'm walking around because I'm out of breath and I feel rude not replying to someone when they're talking to me so I find that a bit awkward. I have scars on my chest from previous operations and I am occasionally asked what caused the scars or if they are love bites, so that involves a bit of explaining too and it can get a bit tedious sometimes. When I'm on a night out I just want to forget I have CF.

    Another thing that can be a problem is using my disabled badge. I only use the badge if I'm not feeling well enough to walk very much or if there are no other spaces free. Unfortunately though sometimes people shout at me and tell me I shouldn't be in that space because they see me walking away from the car looking perfectly normal. They don't even check to see I have a badge up, I guess they think I took a relative's one. I lost my temper one time with a woman who was giving out to me when I was going back to the car with two heavy bags of medication from the pharmacy :P

    Sometimes it's tough having CF because it's very much a hidden illness, I look perfectly healthy. When I'm standing on public transport and struggling, no one is going to notice and offer me their seat. Then again it also means I can just pretend there is nothing wrong with me and I don't have to disclose that I have CF unless I want to.


  • Advertisement
  • Registered Users Posts: 3,214 ✭✭✭cbyrd


    It's great to get an insight to this disease, all the questions you'd love to ask but it'd be rude to. My son has pulmonary hypertension and aspirates so he's peg fed, and his jack and Jill nurse works in the CF unit in Crumlin so I have a tiny bit of experience with lung issues. Listening to her stories can be heartbreaking.
    One thing that I did come across when he was in icu last year was they're now giving children with CF high dose vitamin D, something I have used for a few years as allergy control (from an allergy specialist in Beaumont) have you come across this or is it new (can't remember if the Prof said treating or trialling)
    What's been the hardest treatment you've endured.?


This discussion has been closed.
Advertisement