Gary William’s ….Living with Cystic Fibrosis……I am hoping this piece is the first of many more. I believe this is just the beginning for this gentleman.

Living with Cystic Fibrosis hasn’t been all bad if I’m honest. I was born in April 1974, my parents didn’t know I had CF until after a few weeks of stomach issues.
They where then told the news I’d be lucky to reach the age of 21. As of this I’m 46 years old.
The only issues I really had as a youngster was feeling skinny and having a pot belly, I just thought I looked different.
The gene affected by CF controls the movement of salt and water in and out of cells. People with CF experience a build-up of thick sticky mucus in the lungs, digestive system and other organs, causing a wide range of challenging symptoms affecting the entire body. I never noticed many breathing problems when young, I suppose because my lungs where still healthy. It was always having bad bellyaches. I had to have pancreatic enzymes when I had eaten, it was hard to judge the amount correctly. Soon learning the more fatty foods I ate the more enzymes I needed. I honestly didn’t have a solid number 2 until I was 12 years old.  It wasn’t realised by medical professionals for a while that CF patients would be better off eating as much fatty foods as they can as we only absorb half of the calories we consume in a day. My childhood was ok if I’m honest. School were good with my physical Education as they knew I couldn’t run around playing rugby, football or cross country without getting short of breath a lot quicker than others. I honestly was never poorly during my teens.  I started work as a plumber a week after I left school in 1990. I am still a plumber to this day.
Over the years my health has decreased, with I suppose kind of like wear and tear.
My lungs and airwaves have suffered. I have had to stay in hospital on Intravenous antibiotics on a few occasions now. I’m on different nebulisers to help with my breathing.
But I think things aren’t working as well as they used to. I don’t have the good results I used to have after a spell in hospital. It’s a shame as the first time I had IVs I felt like I’d had new lungs for years. But me ageing and the wear and tear on my lungs the IVs were becoming nearly yearly and really having no effect at all on me after treatment. A few years ago I was going gym regularly and swimming once a week. But I was starting to find it hard to do all this and work and trying to eat to keep all my weight on.
I’m not going to lie, feeling crappy and feeling like you can’t do anymore than you can do life wise can get you down. Medication doesn’t do what it used to do and yes I’ve been really down. I’m very lucky that I have a 19 year son to keep my life in focus. A dog who I love the bones of called Oakley. And my close mates are just the best they’ve been my mates since I was 14 years old.
I developed a limp when I was 30 years old and after tests they discovered I had a Hereditary Paraplegia Condition. My dad has always had trouble walking but as a kid he always told me it was because he walked too soon after a knee and hip operation. He was unaware he had anything that was an actually condition.
This has hindered me over the years being a Plumber as I struggle walking with heavy things like boilers, radiators for example. I really think having dogs most of my life has helped a little as I always walk them three times a day and keep active plumbing.
I’m starting to find working 10 hours a day four days a week tough I work at a very busy mobile home factory. My firm are good and when I am off of mediation they do help me out financially which they really don’t have to. I’m lucky that I brought my first house at 21 years old. I only have a little mortgage on my house now so that’s something which is comforting. I do worry incase I have to stop work all of a sudden through poor health but I don’t let it bother me.
Talking to people and getting things off your chest can really help you in life it has done wonders for me recently. I’ve always been a good listener and I get lots of friends chatting to me about things. I’m happy I can help.
I’ve had some great news over the last few months. A new treatment has become available for people with a certain type of CF gene. I have that type of gene so I can start this treatment next month. As things have gone down hill health-wise my health professionals feel this is the best thing available to me.
Trikafta is a “triple-combination therapy” consisting of three different modulators — tezacaftor/ivacaftor (which make up Symdeko®) combined with elexacaftor. Modulators work by helping to fix defective CFTR protein. Trikafta has the potential to be significantly more effective than current modulators. I cannot wait to start this it will be like being given a new lease of life.