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Cystic Fibrosis awareness week 2018 - Life with CF post double lung transplant

It’s Cystic Fibrosis (CF) awareness week and I wanted to do a post about how CF effects my life after a double lung transplant because quite frankly I’ve lost count of the number of people in the last 3 or so years who think I don’t have cystic fibrosis now because I’ve had a transplant.  Lets start with the science part, I’ll try to keep it as simple as possible… A double lung transplant IS NOT A CURE for Cystic Fibrosis. 
Cystic fibrosis is a genetic disorder, this means that it is caused by an error in one of our genes, genes are in our DNA, DNA is the code our body uses to make our cells. Therefore every cell in my body contains the faulty gene that causes cystic fibrosis and every cell that gets made in my body forever more will be made using my DNA that contains the faulty gene. So I will always have Cystic Fibrosis.
Now transplant slightly complicates the above rule, when you receive an organ transplant the cells that make up that organ have been made with the donors DNA which is …
Recent posts

Transplant and television, 'Gift of life' documentary.

Hello everyone,

I hope you are all looking forward to tuning in tonight to my episode of 'gift of life' at 10pm on channel 5! I excited if not a little apprehensive, I'm going to watch it with my parents!

When I was asked to be part of the 'gift of life' I didn't hesitate to agree. From this blog and my youtube you can see how much I like to document my journey with cystic fibrosis and transplant so being given the chance for my entire journey to be filmed was a dream come true! It was at my second false alarm for my transplant that I was approached by the film crew and asked if I would be involved, they explained that they would like to come to my house to film my life as a pre-transplant person and then if my call was to come with in their window of filming they would like to film my journey. I agreed there and then and numbers were exchanged to set up the first day of filming. It was just a week later that Becky and Louise arrived at my house to film the rea…

8 Month update!

I can't believe I am 8 months post transplant today! The time since being home has flown by and life is busier than ever!

I've not updated you all since my 6 month clinic in August so I will try to fill you in on the last 2 months events!

September started well with me really getting back into my career as a hairdresser, I began to do lots of my friends hair both and home and in the salon one evening a week. I can't remember if I mentioned before but in July I started doing one evening a week training at Flappers and Gentlemen to get back into the swing of hairdressing and polish my skills back up! It's been a wonderful feeling to get back into what I love and am most passionate about! When I had to give up work over 2 years ago I was devastated and it was horrible to lose my sense of purpose and the achievement you feel when you have a job.

Aside from my one evening a week at the salon I have also set up my own mini design business Holly Rosanna Designs to sell my han…

Double celebrations!

August has been a month of celebrating, with my 6 month transplant anniversary on the 17th and my 23rd birthday on the 19th I had plans to celebrate in style!

With a huge help from my sister, I arranged a murder mystery circus themed party to be held on the 15th of August! So I could play along, my sister took up the roll of host and organising of characters meaning I was as in the dark as everyone else as what the story was and most importantly who the murderer was! In the days leading up to my party, I gradually with the help of streamers, pompoms,  balloons, stripy table cloths and bunting was able to transform the downstairs of my house into a big top! I prepared the food of a circus, popcorn and pick 'n' mix along with cocktails in red cups!

On the morning of my party I made the finishing touches to the decor and then began to get ready into my character 'Ruddy Bijou' a male trapeze artist. I managed to get a jazzy leotard from the topshop sale for £10 and had som…

The British transplant games 2015

On the 28th July I travelled up to newcastle at 4am to attend my 5month post transplant clinic review, as usual I did lung function, x-ray, blood tests and saw my consultant. All my results were good so my consultant was very pleased with me and wished me the best of luck for the weekend in which I was to take part in the transplant games!

After clinic we went to pizza express for lunch before driving even further north to stay at a bed and breakfast in Hexham. We decided that it made sense to stay up north and we would have a 2 day mini break before the games began on the 30th of July! We arrived at the bed and breakfast late afternoon and dropped our bags off before heading straight out again to visit my dads, mums, cousin and her daughter and granddaughter who lived in the area and whom my dad hadn't seen for years! My Dads extended family is huge, I must have hundreds of relatives! It was a really nice evening at we managed to chat the night away not leaving until 11pm, absolu…

A miracle review

It felt so strange walking into the house, you know how everyones house has a smell but you can never smell your own because you live in it, well because we'd been away so long I could smell my houses smell! I guess it was a combination of the pine wood doors, washing powder and reed diffusers dotted around the place, whatever is is though it smelt good! We wandered around the house  like we were viewing it for the very first time! Despite neighbours and friends going in it everyday to look after it, it still echoed and felt un lived in. There was a HUGE pile of post, even more wonderful 'get well' cards and even some gifts! The bills and other boring letters not so well received! 
Exhausted from the day I crashed on the sofa whilst mum prepared dinner and dad sorted out the spare room for me to sleep in. I couldn't go back into my bedroom until it had been deep cleaned due to the risk of my CF bugs being in there. I had to have a brand new duvet, pillows and bedding,…