Life With Cystic Fibrosis - In Memory of Danielle Jones

This post was originally written in 2016 by Danielle Jones who passed away November 2017.

Life with Cystic Fibrosis. It has its good and bad times. I was diagnosed with CF at 9 weeks old. I was pretty much in hospital for that whole 9 weeks due to being so poorly. 

As the years went on I was still very healthy, lung function would be about 80% or over, my weight would be brilliant, the only time I ever stayed in hospital was for my 2 weeks of IVs as mum wasn't trained enough at that time! 

I only ever needed IVs like 3 times a year so that was nothing. In 2010 I needed a port fitted due to my veins being rubbish, that was the best thing I ever did! 

Life carries on being very good and healthy I then had my wish, I went to London for a few nights to see high school musical live! Also Madame Tussaud's and sea life center, it was brilliant and I had a lovely time! 

I used to always go abroad a lot too, like every year to different places so if ever I got worse I can say well at least I did this and that.

During secondary school I started to get a little more poorly and needed IVs about 5 times a year because I would have times where I would be coughing up a lot of blood, I overcame that and was back on my feet in no time until it was a week before my prom in year 11 I ended back into hospital very poorly lucky enough I came out a day before but on my prom day my dress didn't fit as good due to losing weight but it was okay for the few hours I was there, when I arrived everyone cheered me on and I got given a bunch of flowers for bravery. 

Anyway school ended and it was time for college, but before college, it was my 16th birthday so I had a party for it was a good night I guess. 

2013 and I was still doing brilliantly! My health was still going strong. I got into my cooking course and met lovely people it was the best year at college going! I was bullied in secondary school a lot and I was bullied in college too but I didn't let it drag me down as much. I passed that year of college so it was time for my second year. 

2014 comes and halfway into my second year of college I was very poorly! Start of May I caught a cold from my best friend I was very poorly for a month till I then went too hospital in April to see my doctor, I couldn't even do my lung function and my weight was in the underweight zone. I had caught pseudomonas and a riho bug so I then stayed in hospital but on that night I was worse than ever, I was on high oxygen breathing machine and a feeding tube, also got put into the front room at the desk as doctors and nurses needed to be with me all times.

As that week went on I got worse than ever before. I woke up not knowing anything. I couldn't feel anything. I didn't know what was happening till I had an X-ray and it showed that I had a collapsed left lung and I had to be rushed to children's Intensive care unit in Stoke that was on 29th of April, I had my huge fight and got over it all finally coming out of hospital end of May! 

It was then my 17th birthday and had a college interview on that day and I got in! So I started my second year at college on the 7th of June, everything was going okay. We had a very long walk and soon as I got back to college I collapsed on the floor not knowing where I was and went very blue and purple. I went to see my doctor on that day was sent to hospital, but on that night I got sent to intensive care again as my lung collapsed once again! After fighting it all off I came out of hospital June 23rd. 

My health was going very strong was doing really well, still needing IVs about 5/6 times a year but my weight was doing better, my lungs were back up to how it should be! 

2015 and I met Cam. I was very healthy when meeting him everything was going absolutely great he did loads for me. In June I had my 18th birthday 2015 it was great! Had such a good party for my 18th I looked ever so well the lot, but in September I was starting to get very poorly again. I had lost 11 pounds in less than 2 weeks and lung function was 40%. Ever since then my health has just got worse, 2 weeks before Christmas 2015 I was told I need a double lung transplant so I had to get onto the list but once I had my meeting they said no due to reasons of being poorly and not ready. I am now on oxygen when walking because I can't walk without it anymore and my lung function is sitting at 30% with my weight being 45KG and hasn't moved for months it's very hard despite all the feeds in day and night also all of the eating I do! I was needing IVs every 3 weeks for 2/3 weeks each time as my lungs would always fail a week after coming of IVs. 

2016 here and still no good progress other than getting worse. 

Although I was allowed another wish and I got to go to London for a shopping spree and see Charlotte and Holly from Geordie Shore! I had the best few days ever.

So this is my story but I will continue to fight and get onto the list as my next meeting is June 14th, my 19th birthday is around the corner I'm not looking forward to it but I'm very grateful to even be here right now! Thank you for reading. 

- Danielle Jones