Tuesday, 19 June 2018

CF Week 2018- Me and Cf

So CF week (Cystic Fibrosis) started today (Monday 18th June) and I feel the need to talk about it on my blog as this after all is part of my life and what my blog started off about! 


So cf in a nutshell... 
Cystic fibrosis (CF) is one of the UK's most common life-threatening inherited diseases. Cystic fibrosis is caused by a defective gene. As a result, the internal organs, especially the lungs and digestive system, become clogged with thick sticky mucus resulting in chronic infections and inflammation in the lungs and difficulty digesting food.
Yeah I did copy and paste that ha ha 

So how had this been for me! Well I think it’s safe to say I have covered it in my blog over the past 6 years! 
However if you are new to my blog or new to this cf stuff then let me try make this brief! 

I was diagnosed at the age of 18 months, not because I only just started getting  stymptons then, nope! Unfortunately back in 1990/1991 cf wasn’t on the radar and drs never tested at birth like they do these days! 

Nope I spent  months and months in and out of a&e and children’s wards being admitted for asthma, chest infections and an over protective mother! 

So thanks to a lovely nurse in a&e one day she asked my mum if there was any cf in the family, Mum had never heard of it, so off she went to library (yes no internet or google then) and read a book, she came back to the hospital licked the back of my hand which was mega salty and that’s it she knew I had cf. 

So after they done all the tests it came back positive for it and my mum was releaved, I could now get the right treatment to treat me! 

I did and I started to improve slowly! 

But for me cf hasn’t been a walk in the park, I’ve spent my whole life in and out of hospital every few months with repeated Chest infections! I mean getting to my age is a massive achievement! 

I was treated as normal as possible and it didn’t stop me having sleep overs or going to parties I wanted to be like every other child my age just with extra treatment to do, and hospitals stays were hard when I was young as my best friend one minute would have a new best friend by the time I had a two week admission in Hospital and came back to school. But that’s life and it made me while I am today, positive strong and outgoing person! 

Skip to my 20s that’s when the shit hit the fan shall we say! 

My lung collapsed two weeks before my 21sr birthday so that was my 21st partying hard in Hospital in london! My friends were great and all came up to Chelsea to celebrate with me! 

Then that’s when I was told I needed to go on the transplant list as I was left with little lung function and on constant oxygen and wheelchair bound! 

So was listed in the Nov 2011 waited for 8 months then Kalydeco came along and changed my life! 

And within 3 weeks I took myself off the list. 

Got married had a few holidays still needing oxygen but using my wheelchair a lot less! 

Then September 2014 came and the lungs just couldn’t cope anymore, they were giving up and so back on the list I went. 

Then loads of crap happened with my veins and some clots and a stent falling into my heart after being inserted into my vena cava vein. So then I became an emergency for Transplant and was stuck in Harefield with weeks to live. 

4 calls later and 11 months listed and I got my magical lungs August 2015 

Now life is different! And there is no cf in my lungs as they are not mine! Which is amazing! 

But transplants aren’t a cure and you swap one set of problems for a whole new set! But I won’t bore you with that tonight! 

Let’s just say i am Incredibly grateful to my donor Gill and her amazing family for agreeing to donate her organs and her lungs to me! She saved 5 people and I was the youngest! Just when I thought there was no more fight left she became my angel! 

So I’m dedicated this to Gill, my absolute angel who choose to leave a selfless legacy to me and the other recipients! 








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