Now ye're talking - to someone with Cystic Fibrosis

Deleted User wrote: »

Does climate affect CF symptoms? As in, is the Irish climate worse than say, New York or California?

Well it can depend on the individual but generally climate does have an impact on CF. I find hot weather difficult to deal with, especially humid weather because I find it hard to breathe and I lose even more salt which can leave me fatigued, I take dioralyte and I add more salt to my food then. You can also get salt tablets. We must be the only people who are told to add salt to our food by the dieticians When my wife gives me a kiss after I've been out and about or on a hot day she just says ''you're so salty, you taste like a chip!''. If I rub my face when it's warm then salt actually comes off it, especially my eyebrows and nose :pac: Actually it was discovered that people with CF who were surfers in Australia were doing better than other people with CF and it was realised that it was the salt water, because we lose salt through our skin and our mucus dries out, salt water can help loosen the mucus in our lungs. So they came up with hypertonic saline, which is basically salty water that you inhale into your lungs via a nebuliser, you do this before physio so it makes the mucus easier to cough up. My lungs are too reactive to use this (I explain below) so I don't use it as my airways close up and I can't do physio, I use an alternative drug though that I can tolerate

I have quite an asthmatic component to my CF but not everyone with CF does, which means my airways get irritated and tighten up easily, like I use roll on deodorant and I don't often put on perfume, I use non bleach sprays when I clean the house. Some of the nebulised medications I've tried I haven't been able to use because they cause my airways to tighten up, they overreact to everything :P Any sort of aerosol or spray can set me off. The other thing that can set my asthma off is very cold air, especially going from being inside to outside, it's the sudden change in temperature that sets my asthma off. So I can find very cold air a bit difficult to tolerate at times.

The Irish climate isn't great because it's temperate which allows bacteria to thrive, its rarely cold enough to kill off bacteria in winter so they still thrive. Like Cork is very marshy and boggy so it's like a breeding ground for bacteria.

TL:DR I think Spring and Autumn are the best times of year for CF :pac:

Deleted User wrote: »

Slightly off topic, but another poster brought up fundraising. I do a bit for things like Cancer association. I’ve actually done a bit for CF. Just pick the area you would like funding to go to and hold a table quiz. There’s always one pub in the area that specializes in quizzes. Approach them, advertise locally, publicize through Facebook etc and enjoy the night. A raffle is always a good money raiser. Either get a local business or employer to provide a hamper, throw in a box of chocolates and biscuits and away you go.

It's great that you're involved in fundraising, it's a lovely thing to do. I'm going to see if I can get a box of trolley tokens from the CF association and my mom will bring them into work and I'm going to see if our local pub would be interested in a doing a pub quiz for CF. Thank you for the ideas

islanderre wrote: »

Hello Succubus,
It's an educational read.... Never knew much about CF and it's incredible what ye have to deal with.... Fair fecks to ya and other CF folk. Thanks for taking the time to do the AMA and for the honesty. Take care

Thank you very much Islanderre, I know I rambled too much but I'm glad it was an interesting read for you and I think it always helps to raise awareness of CF because I often meet people who don't know what it is or have a very vague idea. To be fair I didn't know much about it myself until I was diagnosed!

iamwhoiam wrote: »

Thank you so much for this informative and interesting thread . Its interesting for nurses too who deal with the medical issues all the time but not always aware of the daily struggles on the outside . Best wishes Succubus and I hope 2019 is a good year for you .And an interesting point for you maybe ! When I was a young nurse before sweat tests were used as often if we suspected a baby had CF we would kiss the babies forehead and feel the salt on our lips and it would lead the team to do more tests .!

I really appreciate your dedication to CF and looking after all of those little CF babies over the years I find medical staff sometimes only focus on the medical side and tend to forget that we aren't robots or machines who can be programmed to do things, we're human and we struggle like everyone else. It really depends on the person though, I mean one of my CF nurses in CUH is absolutely wonderful, she's so empathetic and she's been there for me through the physical and mental problems too. She got me into hospital right away when I was in a bad place and she got me on IV antibiotics and arranged to have me see a psychiatrist within a day, she really couldn't have done any more for me. Some people really go above and beyond.

I didn't know that, about nurses kissing the babies to see if they were salty before the sweat test was used. A very good way to see if there was a possibility of CF. So you know how salty we are then