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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 handmade goods with a percentage of the profit going to the Cystic Fibrosis Trust. I have lots of christmas cards left to sell so take a peek if you're interested. It was something I have wanted to do for a long time and now I have the energy and time to pursue my hobby it's really rewarding!

My hand made christmas cards!
I was able to celebrate my goddaughters 6th birthday with her and take her for a birthday shopping trip and tea! We went to Waterstones to chose some books as her present and to Debenhams to chose a beautiful party dress for her party the following week. We then went to eat at TGI Fridays where the staff made a real fuss of her and sang her happy birthday! Seeing her smile and making her happy warms my heart and makes me feel so happy too!

I've been trying to get active again as I got a bit side tracked the month since the transplant games with other things like socialising! Whoops! So I went kayaking one Sunday afternoon with friends on our local river and surprised myself at how well I managed and I didn't even suffer from aching arms the next day! I've also got back on my bike a few times and have started to get back into running as I want to do the Great North Run 2016! I went to a specialist running shop locally in which they use special technology to assess your running style so you get the correct pair of trainers! I've been told how important it is to have the right trainers from the start so you don't get put off running because of discomfort caused by the wrong trainers! I've downloaded the couch to 5k app and plan to join the gym at the end of this month too!

new running trainers!

My only hospital visit in September was to my local CF team for my annual review, I still have to see my CF team as they look after the nutrition and digestive side of CF that I still have, my liver and bone functions and my blood sugars. I don't have CF related diabetes but I have a glucose tolerance test annually to check for any changes that may suggest I have developed it. Luckily I showed no signs of CFRD which was a relief as it would be a whole new aspect of the disease to learn and take care of! My bones and liver were also okay but my weight was an issue. The past few months my appetite hasn't been as great as I'd like it to be and because I've been so busy I've ended up missing meals and not snacking like I should do. Because of this my weight has declined to a very small 41.5kg! I was really disappointed in myself for letting it slip so I immediately began my NG feeding again because as ridiculous as it may sound I prefer that than having high calorie supplement drinks and I don't have the appetite to each enough calories a day! Doing my NG feed allows me to feel relaxed about food still and enjoy it as I know I will make up the calories I need each night! Since I began feeding again I have put on 2.5kg which is good progress! I intend to carry on feeding until I reach 50kg which will be a normal healthy weight for my height!

In the 3rd week of September I was asked to go to London and take part in filming for the promotion advert for 'Gift of Life' documentary I am in. Check out the link for all information and to view the promo videos we shot! I can't really say much more about the day yet but I will be releasing another blog post about it very soon, so keep your eyes peeled! The Promo has also been on the TV throughout the day and evening on channel 5 since the 29th of September!

the studio
Whilst I was in London it was really nice to see my sister and have some quality time together, she is my best friend so not having her living at home is hard for me although it gives me a good excuse to visit London and do fun things with her whilst visiting!

On the 22nd of September I went on my local radio station BBC Radio Leicester to do a catch up interview, as many of you will know I have been on the Ben Jackson show a few times as the in depth interview guest so he was keen to get me back on the show to share with the listeners about my transplant journey! You can listen to the interview here!

The 1st of October I had my transplant clinic at The Freemans. On the way up to clinic we visited Durham and I went to see the Cathedral, it felt like I was in the set of Harry Potter! It was a fantastic clinic, I was told my lungs were so good and I now look so well you wouldn't even know I'd had a transplant, my doctor reiterated that he couldn't believe I'd survived and the fact I am doing so well is a miracle. I agree with him that I do look well and my lungs are better than I could ever have imagined but I am still recovering from the transplant even this far on. I still get extremely tired and have to be extra cautious when out and about to avoid germs... hand sanitiser gel is my best friend! My fitness levels are still a lot less than an average person but over time, my stamina will build and I hope by a year or so post transplant I will have reached an average level! I also received exciting news that I am allowed to travel abroad now instead of the original 1 year post transplant I thought! So I have a few plans in the pipeline for before christmas travels but I will definitely be going to the French Alps for 2 weeks in February to visit my brother on his second winter season! I can't wait to strap my board back on and hit the piste!

Outside Durham Cathedral
My new snowboard and boots

I've joint a knit and natter club at my local cafe on a Monday evening to go and eat cake, drink tea and do my crochet in the company of other people! It's a really lovely group of ladies that go and is always a highlight of my week!

I began working one full day a week as well as my evening at Flappers and Gentlemen this month, it's been a nice addition to my week being in the salon another day! My colleagues are lovely and I love the salon and atmosphere and my job so it's a treat not a chore going to work!

October signifies two main things for me, firstly the flu jab which I had as always at the beginning of the month, suffering an aching arm for a good few days after! Secondly, halloween, slightly early I know but me and a group of friends went to a local scarefest, it started at 7pm last Friday night and went on until 11pm. There were 6 attractions, a haunted hotel, prison, pie factory, and dungeon and a army style maze where you had to have a cotton bag on your head and hold on to a rope on the wall to find your way whilst being terrified about what was going to grab you! The final attraction was called curtain chaos which consisted of you guessed it, a room full of curtains and clowns hiding behind them scaring the life out of you in the strobe lighting they had on! It was a scream filled spooky night which I am not in a rush to repeat but it was a good laugh and a different way to spend  Friday night that's for sure!

Me and my friends at the scarefest!
I have been contacted by channel 5 again this past week asking me to return to London this week to do some live TV appearances, Channel 5 6pm News on the evening of Tuesday 22nd and The Wright Stuff, the morning of Wednesday 21st to do a final push in promoting the 'gift of life' documentary series that is aired at 10pm later that night! I'm really looking forward to it although slightly nervous that it will be live TV! I took a trip to the beauticians yesterday to get my eyebrows preened and I am getting my nails done on Monday morning before I go by my lovely friend who does shellac!

I was also approached this week by the cystic fibrosis trust to take part in their young peoples week that starts this Monday too, they have asked me and the lovely Charlie  to take over their social media on Wednesday the 21st to talk about being a young adult with cystic fibrosis and my experience as a teenager too. We'll be hosting a Q&A as well as sharing our own experiences and discussing important issues.

So this weekend is full of blog writing for channel 5 and the CF trust takeover as well as preparing content for the takeover as I will be posting from London in between my TV appearances! If I prep before hand and am organised it should all work seamlessly, I hope!

Thanks for reading and do try to tune in to watch me on the box and watch the first episode of 'gift of life at 10pm, Channel 5 Wednesday 21st October. Please note I feature in the second episode on Wednesday 28th September also at 10pm on channel 5!



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