Hi, my name is Jodi, I have recently just turned 16. I was diagnosed with Cystic fibrosis at 2 weeks old. After operations resulting in the diagnosis. I have several scars on my body. I have one on my neck from where I had a longtime intravenous line put in while I was under 3-4 operations in the space of 2- 14 days after my birthday. I have another scar across the center of my stomach because the doctors had to open me up to see what was wrong inside as I had a swollen stomach when I was born. I had an ileostomy. I also have a little scar below it which is from a colostomy bag from when I was 2 weeks old. Since then I had no operations until my gastronomy tube in 2011, this was the solution to a rather drastic weight loss. That was due to a sad family experience of my father passing away to cancer when I was 8. 2 years after having the gastronomy tube fitted I had it replaced with a MIC-KEY button, which was a smaller version without a tube but when used a tube was connected and then disconnected when not in use. It was a convenient way to have feeds overnight as I was soon to be going to high school and I felt more comfortable when getting changed for P.E rather than a tube hanging down from my stomach. 5 years later in January 2017, I got my MIC-KEY button taken out as I was no longer needing it. This took months of reducing the overnight feeds from 7 nights a week down to 5 then gradually to 2-3 nights a week. By August 2016 I had fully come off overnight feeds and with check-up clinics every 2 months I managed to maintain my weight at my target of around 8 stone, which was a great weight for my height and age.
Months had past and it soon got to 6 months without any overnight feeds still being able to maintain my weight. So with help from the home care team I had my stomach peg removed...but the only way I was allowed it removed was it I could swallow tablets, which I was terrible at! As my oral medicines went through my stomach peg so I didn't have to taste the horrible medicines. So eventually I managed to swallow tablets, it made things a whole lot easier! It was an exciting moment for me as I had it for just under 7 years. From my own insecurities about my stomach button I never wore tight tops or 'figure hugging' clothes as it was very visible, my boyfriend kept telling me I shouldn't be ashamed and I should be proud to show my scars and my stomach button off as that's what makes me who I am.
Every day I take multiple tablets, nebs, inhalers and have physio twice a day. It's a lot for a 15 year old girl to have to do for the first 15 years of her life. Growing up since I was born I have had to take Creon 10,000 capsules which are a pancreatic enzyme supplement which are taken by people whose bodies don't make enough of their own enzymes to digest food. To ensure the Creon are doing their job properly I have to make sure I take them with meals including breakfast, lunch and dinner and snacks. Depending on how much fat content there is in the food I am eating, the amount of Creon I take will vary. The amount can vary on meal size also. On average I take between 30-40 a day. I take them to school with me and all my friends know I have Cystic Fibrosis and they're fine with it, they just let me get on with taking my tablets and inhalers.
wouldn't say CF has affected my ability to take part in things as much as people may seem to think. When I had my MIC-KEY button yes I was a little dubious about it, scared in case it got knocked or pulled, therefore for the years I had it I didn't play any contact sports. I still did netball and other sports like badminton, volleyball. Although my lungs aren't the best I still took part in sports day and gave it my all. I love sports and even better is it helps my breathing!
From a young age I wasn't quite sure what 'CF' was or how it affected me. I am so lucky to have such amazing family and friends who take time out of theirs to help care for me. My lungs get very tight from time to time but keeping on top of my inhalers, physio, inebs and medicines is so important to remain fit and healthy.
Myself, my boyfriend and my mum have recently just participated in a Cystic Fibrosis 10K run which was amazing! God..it tired me out, but I did it! I was so proud of myself, I wanted to show that if you have the right mindset you can do anything you want! Our goal was to complete the run in under 90 minutes and...we smashed it, we did it in 73 minutes! I was proud to say I did it, we raised so much money all together around £500 between the 3 of us on our sponsor forms. It was such an amazing atmosphere and it was great knowing the money we raised is going to help people like myself have a better, easier life and have all the opportunities to get the equipment that they need to stay health!
I regularly go to my local gym which really helps to open my airways as well as my inhalers, i play for my school netball team. I currently play for U19's league for netball for a club outside of school that I have been apart of for over 3 years now. I have training every week and matches on Sunday's, the pressure helps me to fight my cf even more, knowing that my cardiovascular fitness is limited with cf I know that I have to try twice as hard to get that result i want to achieve in a game. Netball is a sport I really enjoy and it motivates me to want to try my best and not let CF stop me.
So my advice to anyone out there not knowing what do to to help improve their breathing and making a hobbit out of it, participate in sport! Even if it's only 1 session a week, making friends will also inspire you! But proving you can do it despite any lung problems! CF doesn't stop me from doing everything, it can be annoying at sleepovers having to take everything with me, it can be a handful to carry but I soon get over it and just get on with it. There's always someone worse off than myself is what keeps me going. Don't let anyone including yourself let you hide your scars because it simply shows you're so much stronger than what tried to hurt you! I am a CF fighter and I'm not giving up! Thank you for taking time to read my story.