Wednesday, 28 October 2015

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 reality of my life whist waiting for my transplant, watching the footage back now is very strange... I knew I was very ill but I didn't realise quite how ill I was until I recovered from my transplant and was able to compare my life before to the incredible feeling after! My posture, voice and colouring has all changed, I can stand straight with my shoulder back, my voice isn't raspy and breathless and I no longer have sunken dark eyes and pale skin.

It was just a week after the girls had been round to film me that I got my 3rd and final call for transplant. Whilst I was in the ambulance en route to the hospital I had a call from Lynne the transplant co-ordinator to ask if I was still happy to be filmed and if so the crew would meet me off the ambulance and follow me from then on! Of course I agreed and as promised the film crew were there cameras on as I was wheeled off the ambulance and into the hospital. Strangely I didn't really take much notice of the cameras or feel nervous about them, I had too many other things running though my mind about if this was going to be another false alarm or go ahead. I had already had 2 false alarms so I knew the set up of the day and the tests I would require, had I not known that I think being filmed would have been harder. As the day progressed and things became more intense as we continued to wait for the news that the lungs were good enough the crew and cameras were a welcome distraction! I was able to tell them exactly what shots I would like them to get during the operation, having 2 biologists as parents and having studied a-level biology myself I was fascinated to see all the details of the operation!

When Lynne came over and finally told us the news that the lungs were good enough and the transplant was going ahead relief washed over me and then excitement and adrenaline kicked in, I couldn't stop smiling! I remember being wheeled in and being told that the mask they put on me smelt of my little pony, and telling my mum I loved her, it's all a bit hazy and a blur though so to be able to re-watch those precious life changing moment is very moving.

When I awoke in intensive care after my transplant I can barely remember that they came in and filmed, I was still away with the fairies and I sounded like a mouse! Due to all the difficulty and the life threatening situation I ended up in I wasn't filmed again for over 4 weeks! It was a relief to be able to be filmed again and show that I had survived! It was great having the crew around over the long 5 further weeks of recovery! They kept me company even when they weren't filming and kept me updated on what was going on in the outside world! I found it easy to be on camera and talk about everything, I think it helped me to organise my thoughts and feelings and was a weight of my shoulders when I had talked about them! It was entertaining to see how staff reacted to being filmed, some didn't mind at all where as others would hide anywhere they could to avoid it!

At times it was hard being filmed in the most intimate and difficult time of my life, constantly trying to put into words how I felt was difficult as often no words seemed to be able to convey quite how I was. It was also difficult filming my journey in which we didn't know the ending of, for all of you watching, you knew before watching that I have a happy ending, we didn't have that comfort.

Luckily I did have a happy ending and the joy and freedom that engulfed me when I left the hospital was incredible. Once home and settled back in the film crew visited me for the final time to film my new life with my new lungs, I hope it showed you just how massive the difference is for me and how organ donation has changed my life for the better in every possible way!

Last bit of filming, me back at home post transplant!
Me with the lovely Becky and Louise who filmed me the majority of my transplant journey!
In late June, Louise visited my house for the long awaited moment of seeing the final edit of the programme, I cried from 5 seconds in until over an hour after. Those 9 weeks in hospital seemed like a dream and hardly believable, only by looking at my scar and being able to breathe like a normal person could I be convinced I went through everything I did. It was a emotional roller coaster and reliving that as well as seeing the input from the doctors and nurses I hadn't seen was an awful lot to take in. I was really pleased with the edit though and excited for everybody to watch it. If I inspired just one person to be a donor I am happy as that's one more person than before.

In september I was contacted by channel 5 press team asking if I would be involved in the advert campaign leading up to the release of the programmes, I jumped at the chance of course and so I was whisked down to London on the train for a day filming in the studio. Being filmed in a studio was so different to the documentary style filming I was accustomed to but the crew were lovely and I felt at ease in no time. It was nice to have my hair and make up done and look like a person instead of a patient! I had a great day filming the ad even if the studio lights are boiling! I also got to do some behind the scenes interviews which are available on and in this short video.

The studio set up for filming the promo!
The Advert campaign was released at the end of September, it was really exciting to see the final edit.  I was so pleased with the promo and have received so much positive feedback about the clever unusual concept in which it really caught peoples attention and made them stop and think about organ donation which was a big aim of the campaign!

Here is the video with all the contributors from the series gift of life

On Monday 19th I travelled to London again to stay for another few days as the 3 day count down to the transmission of the first episode on the 21st! I had a busy but fun schedule to get through. They got me to travel down to London by train on the Monday afternoon to allow me a good night sleep in London ready for the early wake up on Tuesday!

On my way to London! 
I got picked up at 5.15am to be taken to various locations around London for a big publicity stunt. We began at Marylebone station with 3 actors dressed as hospital patients with drip stands, to represent 3 people die each day waiting for an organ and myself (dressed normally) for a few shots with commuters looking on rather bewildered! We then moved onto Victoria place shopping centre at 7am where I got to sit and enjoy a cup of tea whilst watching the original 3 actors be joined by 18 more go up and down a set of escalators to represent that 21 people per week die waiting for a transplant. After we got the shots there we went to westminster bridge for 8am where luckily the weather was sunny (although very cold) to shoot the 21 patients walking along the bridge and film a video of myself talking about the transplant facts and my own experience. We finished the morning at oxford circus crossroads at 9am crossing the road on the diagonal again drawing the attention of commuters and handing out leaflets for signing up to be an organ donor! By 10am we were finished and I was bundled back into a car to get warm and take me back to my sisters flat where I was staying to warm up and get some rest before the evening commitments!

Filming on westminster bridge
Walking across oxford circus
By lunchtime the team had edited together the mornings work into this amazing thought provoking video!

Once back at my sisters I enjoyed a bacon sandwich and cup of tea before crashing out for a good few hours. I was back up and ready by 3pm though to be taken to one of my best friends salon to have my hair blowdried for that evenings appearance on the channel 5 6.30pm news. It was nice having my hair done for me, I felt pampered and calm about going live on TV! At 5pm the car picked me up from the salon and took me to channel 5 HQ where the news studio is, I had my make up perfected and briefly met with Matt the presenter before I went live on air. The studio was quite intense as all the cameras are right on you so there is nowhere to hide mistakes! I kept my shaky hands in my lap to stop any signs of my nerves being on show! The interview was over in the blink of an eye and before I knew it I was back in the car on the way home to my sisters for dinner and a well needed early night!

A view of me on the news from the gallery
Me on the news with Matt!
On Wednesday morning it was another early start ready for my appearance on 'The Wright Stuff' the morning panel show about current events on channel 5 each weekday hosted by Matthew Wright! I was up at 7am ready for the car to collect me and my sister at 8.30am. I'd asked if my sister could come along with me, hoping it would lessen my nerves and be a nice experience to share with her and the guys at the wright stuff hadn't even hesitated to accept my request and welcomed her with open arms! We arrived at the studios where The Wright Stuff is filmed and enjoyed a coffee in the green room before I was taken into make-up to be beautified, the girls worked magic and covered all my spots that had appeared just in time for being on TV! Sods law that! Me and my sister along with the lovely lady from NHS blood and transplant were taken into the studio and met with Matthew in the Ad break before part which we were the focus of! Matthew and the panel were all really nice and I felt a lot less nervous and more comfortable on my second live tv appearance! Again the time flies by and before you know it it's all over! After having a selfie with Matthew I had finished on the show!

Me with Matthew Wright and the lady from NHS blood and transplant
I was whisked off to Viacom studios in Camden for the first screening of my episode of the documentary! It was a lunch time screening and an email had been sent to everyone in the building inviting them to attend the screening, over 30 people crammed into the small meeting room! Guy the commissioner of the 'gift of live' series introduced himself and the series and then I stood and thanked everyone for coming and getting behind the campaign before the programme began. Guy and I were only able to watch the first part of the programme before we had to leave to go to channel 5 HQ for the screening there! The traffic was horrendous because it was lunch time so we arrived slightly late to everyone sat ready and waiting for us eating the pizza we were promised! We quickly sat down and I began scoffing my pizza as the programme began, I was starving!!! It was the first time I had seen the entire episode with all the contributors parts, not just my own, I found it very emotional,  it really does show all aspects of transplant and that it is by far a simple or easy process. If there were more people signed up to be organ donors then the outcomes of the other contributors in my episode could have been so different.

Please, please, please sign up to be an organ donor today at:

You could save up to 9 lives. I wouldn't be here today if it wasn't for my donor and for that I am eternally grateful that they signed up to be a donor and shared their decision with there loved ones.

I had a great experience filming the adverts and promotion work in London, I got home on the Wednesday night in time to watch the first episode of 'gift of life' air on channel 5!

Thank you so much for watching The Gift of Life and reading my blog!


Sunday, 18 October 2015

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!


Sunday, 30 August 2015

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 some old dance shoes from my cheerleading days, finally I had made myself a blue cape as well as one for some of the other characters. To make sure I looked like a male, I decided upon a grand moustache and my hair in a mohawk of buns!

At 5pm my guests began to arrive, everyone looked so fantastic in their costumes, I couldn't believe what an amazing amount of effort they'd all put into them!
Alicyja aka Beatrice Castello assistant manager 
Emily aka Ruby Marbles the
 circus accountant turn undercover MI5 agent and gymnast!

Annie aka Ophilia Silke the contortionist
Milly aka Jezabel Rivers the clown
Imogen aka Delores Bones the clairvoyant 

Katie aka Ethel Bijou the snake charmer
Jess aka Pandora Bones the sword swallower
Ginny aka Betty Bojangles the ring mistress
Rachel aka the journalist Phillipa Roberts
Fiona aka catering manager Tiffany Sullivan
Joseph aka Thor Sampson the strong man
Katy aka The host
There was also Robyn who was a lion tamer Felix Leonarde, Jack my trapeze artist brother Sebastian Bijou, Mike a police officer PC Parker, Nile the stage hand George Plum and Laura the fire dancer Vivian Blaze who unfortunately I don't have photos of! Not many photos got taken on the night regrettably due to everyone being so engrossed in their characters and playing the game which I suppose is the most important thing! After about 3 hours of playing, the game came to an end and we all gathered to vote on the murderer as well as reveal if we succeeded in our own personal goals! I along with a number of others, correctly guessed the murderer as Sebastian Bijou my trapeze artist brother played by Jack! 
Revealing the answer to the mysteries
With the mysteries solved it was time for birthday cake! My mum very kindly made me this fantastically delicious lemon curd layer cake! I also managed to blow my candles out in one breath for the first time in my life thanks to these new lungs of mine! Another new experience thank you to my donor! 

Birthday cake!
Blowing out the candles!
I had the most fabulous birthday celebrations with all my friends, it was so much fun and another tick off my bucket list! I was truly spoilt with presents and cards, there was a definite theme of scented candles, crochet, Lush goodies, baking books and tea cups; all my favourite things! I feel so lucky that I was not just able to celebrate this birthday but celebrate it in full health, something I have never had before! By 1am I was exhausted so went to bed with a huge smile on my face! 

On Wednesday 19th my actual birthday and also my parents wedding anniversary, the 3 of us drove to Portmerion in Wales to have a celebratory meal in the castle there, despite the pouring rain the setting was lovely and they had a big open fire blazing to keep it warm and cosy inside! We had a lovely 3 course meal and I had a processco, elderflower and mint cocktail that was very refreshing!

Sat by the fire with my cocktail!
From Portmerion we drove to our caravan in Anglesey to spend some time by the coast! I really enjoyed the 4 days we had there even though it rained constantly, sitting in the van with a hot chocolate and my crochet kept me more than content! At 2pm on Sunday we left for what turned out to be the longest car journey ever to Newcastle. We seemed to be jinxed as every single road we needed to go on had horrendous traffic due to accidents or road works and it was all made worse by the torrential rain and thunder storms! We ended up taking that many diversions we basically toured the whole of the Great Britain before arriving in Newcastle at 11pm. Nightmare drive over, me and mum got our heads down for the night in the hospital accommodation as I had to be in clinic by 7.30am to have my bronchoscopy and biopsy. Me being me, I didn't even bother getting dressed in the morning but instead went to clinic in my PJ's, dressing gown and slippers, I got some funny looks and everyone I know in the x-ray and Lung function department were rather bemused! My theory was there was no point in getting dressed when I would be spending the day in bed after my Bronchoscopy due to the tiredness of getting up early and generally the groggy feeling you have after minor sedation. After my X-ray, lung function and bloods I got called into the screening area at 10am for my bronch, I was the first one, which I was happy about as the smaller the wait, the sooner I would get my cup of tea I was desperate for (I'd been nil by mouth from midnight until an hour after the procedure)! It took them 3 attempts to get a cannula in and that was with the help of putting my hands in hot water to make the veins appear; after 23 years of being stabbed my veins are far from happy about making an appearance and accepting a cannula in them! Anyway, cannula in, I then had the revolting banana flavoured numbing spray in the back of my throat, a splutter or so later all was numb and I was given a teeth guard to wear...I like my bronchs via my mouth rather than my nose! A few ml of sedation and I was relaxed and ready! I can't remember the bronchoscope going down my throat but I can remember my doctor taking the biopsies and doing some suction! All was over before I knew it and I was woozily wheeled up to the ward where I had to stay the night in case of complications... the nature of the procedure means a risk of bleeding or a collapsed lung. 

Post bronch thumbs up
Much to my displeasure I was no longer entitled to the special treatment of having my own room but instead was in a 6 bed bay with 5 70+ year old ladies. I got my head down sharpish for a few hours while mum and dad went to get me some proper food! A few hours later, they returned with a freshly baked croissant with ham and cheese from good old Sainsburys. Just as I was about to tuck in, Betty, in the bed next door, decided she was desperate for the toilet, so much so, she couldn't walk to the one at the end of the bay so needed the commode. To my absolute horror, the curtain was drawn round and Betty took her position upon the commode a mere foot from my bed. Curtains are not a substitute for walls, they are not sound or smell proof there is nothing I repeat NOTHING private about them. To say I was put off my food was an understatement, I was scarred for life. Things just kept getting worse, Mary opposite had an even more severe toilet problem and her curtain remained drawn for the majority of the afternoon. This was no place for a 23 year old to be and so as soon as was a plausible dinner time I escaped the ward to go and have dinner 'at the canteen'. In actual fact I went to visit my dads cousin and had homemade lasagne and cuddles with his new baby son, a million miles from the reality of hospital, it was a welcome escape! At 10pm I returned to the ward and much to my relief the lights in the bay were out and all the golden oldies fast asleep! I drew my curtain and got sorted for the night before placing on my trustee eye mask and iPod headphones to take me away from the reality of where I actually was! I had been dozing for a short 10 minutes when Betty pressed her buzzer, the nurses arrived to her to tend to her need which turned out to be 'I've just realised I have no socks on!'. I must say that did make me stifle a giggle! The rest of the night thankfully passed with no events that awoke me and so I managed to stay sleeping until 8am. The breakfast and tea trolly came around, I opted for a cup of tea that resembled dish water (future visits I will take my own Yorkshire gold teabags) and some rice crisps. A few mouthfuls of tea and one or two spoons of rice crispies later, my dad arrived to see me so I got ready pronto and we left the ward for a proper breakfast in the canteen (I actually mean the canteen this time)! A good bacon butty and proper cup of tea! We bought a paper on the way to clinic and sat happily drinking our tea and doing the crossword waiting for my mum to join us and to be called in to see my doctor to get my results! 

It was a really busy clinic so I didn't get to see my doctor until midday, it was worth the wait though as I was told once again I had zero rejection in all areas they tested and that he was very pleased with my progress over the last 6 months! I still have to attend clinic every month and will do until I reach a year post transplant in February. At my year appointment I will receive my final scheduled bronchoscopy and biopsy, I won't have any more unless they suspect rejection or an infection and feel a bronchoscopy and biopsy would help them identify this. 

I can't believe August is coming to an end, summer seems to have passed with the blink of an eye, I guess the rather un summer like weather has made it seem shorter also. As September arrives I look forward to launching a design business to raise funds for the CF trust and organ donation charities. For now I am enjoying a restful bank holiday tying up the lose ends of summer ready for autumn! 


An after note...
I had my first media appearance since transplant in an article for my local paper, The Leicester Mercury, here is the link if you are interested in reading it!

I am not doing any more media except for promotion purposes in the lead up to the release of the TV documentary I feature in in October.

Friday, 21 August 2015

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, absolutely exhausted from the 4am start we'd had!
The bridge house B&B
After a good night sleep and hearty breakfast at the B&B we headed out on foot to the town of Hexham to explore! We visited Hexham Abbey, it was huge and the detail of design was incredible! Everywhere I looked was intricate stone or wood carving or huge multi coloured stain glass, it really was a stunning building! Pottering around the town we came across a vintage home wear shop that I adored, 4 stories of everything you can imagine from the past! I bought a set of Russian dolls a hand embroidered table cloth and a mini cup and saucer! On the opposite side of the road was a wool shop, I'd wanted some new wool to crochet with for ages so I managed to get my hands on some super bright colours for a new project! After a lovely lunch at the Hexham Abbey cafe we drove into the countryside to see Haidrians wall, I was rather disappointed, I had imagined something like the great wall of China but was met with the sight of a few mounds of rock, should have checked my history!
Beautiful russian Dolls in the vintage shop
On Thursday morning we decided to visit the nearby village of Corbridge before heading down to gateshead for the transplant games in the afternoon! Corbridge was lovely, full of more vintage shops and a patisserie full of mouth watering cakes! After a mooch around the shops we got some cakes and began the journey to gateshead!
Delicious cakes at the patisserie 
The whole of team Freeman were staying at the Ramada Hotel in Gateshead, when we arrived, the foyer was a hubbub of activity! Everyone adorned the white freeman kit and were beaming with happiness! At 5pm all 60+ athletes and supporters left the hotel to gather in Newcastle city centre where we marched through the streets in a similar way to olympic athletes parade around the stadium! Whilst waiting to set off I was asked to do an interview for local TV channel 'made in tyne and wear'. Here is the link to my interview, I appear at 5mins 30secs:

Team freeman ready to parade!
The atmosphere in the square where all the teams had gathered was of excitement and happiness! Each team in a different colour kit, music playing and lots of cheering, it was fantastic! I was given the job of carrying our team sign meaning I would be at the front of our team leading the way in the parade! At 6pm the marching band started up and the parade began! I felt so proud marching through newcastle with my team showing how fantastic organ donation is! Members of the public clapped and waved as we marched along! The parade ended at the City hall where the opening ceremony took place. The ceremony involved the passing of the transplant sport flag from Boltons home team to Newcastle/Gateshead home team (us) and the lighting of the transplant flame. Joe McEldry also performed a few songs which was good! After the ceremony we all headed back to the hotel and had a big team meal, it was great to meet all the other members of my team and swap stories of our transplant experiences! I was given lots of good advice for my recovery and future which I have found very helpful!

After a good night sleep and lazy morning me and my parents got up for breakfast, I had a full fry up to give me as much energy as possible for my cycle event later that day! I was competing in a 5km cycle ride at Leazes park by St James stadium in Newcastle, they had set out a 1km lap that I was to complete 5 times in a time trial. When we arrived at the park my nerves began to jangle! Everyone had lycra on, proper racing bikes and even had rolling roads to warm up on and there was me in my nike leggings and trainers a cheapo tesco helmet we'd bought 2 days before and my sisters 10 year old mountain bike. But I was there and I was determined to complete the course. It was the taking part that counted to me, I was only 5 months post transplant and only 3 months out of hospital, being there was an achievement in itself.
Keeping warm in my hoodie pre-race!
I had lots of supporters there to cheer me on, my parents, cousins, great aunt and fellow teammates as well as the lovely Oli Lewington from the CF trust! The support was needed as the course was far from easy, the lap had a large hill for half of it that seemed to climb forever, my legs felt like jelly by my 3rd lap and it took so much inner determination and sheer grit to complete my final 2 laps!

Concentrating on cycling, lap 3 I think!

When I finished relief washed over me, I could feel my heart beating in my ears and my mouth was parched! I was handed a bottle of water and laid on the grass getting my breath back and let my heart slow into normal rhythm! With the help of some of my team mates supporters I walked back to the start area to find my parents and have a much needed massage from the physios!

Leg massage on my tense muscles!
The massage worked wonders as I awoke the next morning with no aches or pain whatsoever! I was relieved about this as I had my 3km speed walk to contend with that day! It was called the 'donor walk/run' that my mum and dad would be doing with me as it was an open event for both recipients and people on the donor register to take part in. I sped walked the entire 3km along the Quayside  except for the last 200metres in which I sprinted as fast as I could across the millennium bridge to the finish line! The 3 of us finished with a respectable time of 21 minutes! Everyone that took part got a medal for their efforts!
On the gateshead Quays with our medals
On sunday I was supposed to be having a relaxed day with no events and just enjoy myself watching the athletics at the stadium! However, at the start of the afternoon it became apparent the 100m relay team was all male and with it being a mixed event needed a female! I volunteered to fill the space so the team could compete! I was second in the relay and was given a straight bit of the track to run which made it easier! It was an exciting event to take part in and made me realise I'd like to participate in more track events next year!

Receiving the Batten! 
The games culminated in a gala dinner at the Sage Gateshead (the big silver bubble looking building by the tyne bridge!). It was a great final evening to celebrate the weekends events! I was nominated to carry the transplant sport flag on to the stage along with 2 other teammates to pass on to the Liverpool team who will host next years games! It was a proud and poignant moment! By the end of the weekend I had made lots of new friends from all walks of life who have been brought together by the gift of life that is transplant! I can't wait to compete in next years games where I aim to have a racing bike and enter more events! A big thank you to Vicky our team manager who without the weekend would not have been possible for team freeman! She's our star! 


Saturday, 11 July 2015

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! 

Thumbs up I'm home!
All the post!
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, every surface needed wiping with antibacterial, the floor needed hoovering and mopping, it was a huge job that would take a good few days so in the meantime I was happy enough to be in the spare bedroom!

Cuddled on the sofa on my first evening home!
After a delicious meal of spaghetti bolognese I got settled in bed and oh my gosh was I in heaven. The bed felt like a cloud of puffiness and ultimate comfort, my body sank into the soft mattress and I enveloped myself in the thickness of the duvet. From firm plastic covered mattresses, scratchy sheets and a blanket in hospital to this, was utter bliss. As I shut my eyes that night to go to sleep I felt engulfed in happiness and luck and quite frankly I felt like I was already dreaming!

Ready for my first night sleep at home!
The next day I basked in bed so contented with this new reality. I was home and I had new lungs, I had done it, despite all the odds being against me I had survived and was finally beginning to flourish with every breath I took! This first day, the proper first day of my new life had to begin of course with a full english breakfast! As I sat at the table enjoying my bacon I looked onto the garden with shock, our lawn had become a meadow, once I finished eating I couldn't resist going out for a look even if I was still in my PJs!
The long and tufty grass!
It had grown up to my ankles and was so squishy!
 Do you know what, I can't even remember what I did that friday, it's rather a blur, I think I was just overwhelmed with being home and enjoying my own space again that it passed without me even realising. I was however keeping a big secret... my brother was travelling home that day from Austria and was due back in England on Saturday with plans of returning home to Leicester on Sunday, what he didn't realise was that I was also home! I was messaging him as if I was still in hospital and unfortunately still didn't know when I was coming home, he of course believed me and I kept all news of coming home off social media and only informed close friends and family. I wanted to surprise him that I was home as I'd promised him the last day I saw him before he flew back to Austria that the next time he saw me I'd be walking and in my own clothes but now I'd gone a step better I was doing both these things but at home! Me and my parents came up with a plan, we would tell him dad was home for the weekend to pick up some clothes for me and mum and mow the lawn and generally do a check on the house therefore he would be able to pick Joseph up from the train station on his return to leicester. So as dad went to pick him up from the station I went and positioned myself on his bed facing his door with my phone set to record! We heard the car pull up onto the drive and I sat there in excited silence! He and my dad carried his case up and Joseph opened his door to me yelling surprise in his face, he was so shocked and happy! After a big hug and hello we all made a roast dinner together and popped open a bottle of pink champagne!

enjoying my first roast dinner at home!
taking ages to open the champagne! 
Over the next couple of days we unpacked and started to sort though my cystic fibrosis medication I no longer needed. My Cf nurse came to visit me on the Monday and to take back all the drugs and equipment to the hospital! Then it was time to reorganise my cupboards with my new medications!
Old medications I no longer need!
It was lovely weather my first week back so I made the most of it sitting outside after being confined in a hospital for so long!
making the most of the sunshine!
I also got my hair done as it was in a awful state after being neglected for so long! It was so nice having it done properly and feeling pampered, I finally felt like myself again!

Having highlights!
My lovely friend Meg and teabag the dog doing my hair!
On Wednesday 22nd April I had to pack my bag again and head back to newcastle for my first clinic appointment! It was strange to be going back but I was looking forward to seeing my team and showing them how much I'd improved in just a week of being home!
On the way to clinic.
My doctors were so pleased with me, I'd already put weight on and my lung function had increased! They told me how amazingly I'd done to survive what I did because everything that could have gone wrong basically did and yet I made it through it, they said it was a miracle and despite all the medical help I had it was my determination and positivity that made me survive where others wouldn't have. It made me feel really proud to hear this from my doctor and thankful for the incredible support I have from my family and friends that enable me to have that important mindset! I am so very lucky. 

On Friday 24th April my new outdoor healthy lifestyle began with my first bike ride! It had been over a year since I'd been able to ride my bike so I was super excited! I managed 3k with a little help from the optional electric power on my bike! It was a start towards much greater things...
First bike ride.
Over the next week the door bell went every morning with a delivery, I recieved 3 beautiful bouquets from Imogen, Siobhan and Ginny & Mark. I also was given a welcome home cake made by Imogens very talented sister! I was utterly spoilt!
Imogens bouquet
Welcome home cake from Imogen
Ginny and Marks bouquet
Siobhans bouquet
On Sunday 26th April I was finally reunited with my goddaughter Isla after 3 months apart! It was such a wonderful afternoon, the sun was shining so we played in the garden, we did running races, bounced on the trampoline, played tennis and catch! So much fun and such a giggle! Isla was so happy I have new lungs because it means I can run now, play properly and pick her up from school! The domino effect of happiness from my transplant is phenomenal!

On 27th April channel 5 film crew came to film me for the final time. They wanted to show how my life has been changed and improved by transplant, we filmed me making a youtube video (yet to be published) riding my bike and an interview on my swing. It was a really special day for us to film this last part of my transplant journey, documenting the miracle of it. I felt sad the experience was over as Becky and Louise had become a big part in my life over the time I spent in hospital, they weren't just a film crew they were my friends! The next time I would see them would be to view the final cut of the documentary in June! 
Becky, Louise and myself! 
I got my wish of being home in time to vote in the general election for the first time 7th May 2015. I ran down to the polling station and proudly made my vote. Unfortunately the election result wasn't the one I wanted but at least I did my bit in voting so have the right to moan if I do disagree with the government!

On May 12th I attended my 2nd clinic at the freeman, this clinic marked 3 months since transplant so I had to have the routine 3 month bronchoscopy and biopsy to check for infection or rejection. I had to stay in overnight as I'd had minor sedation for the procedure and they also have to keep an eye on you for 24hours after in case of bleeding or lung collapse which are potential risks as a result of the nature of the procedure. They have to cut a tiny piece of lung tissue for the biopsy and this can trigger the bleeding or make a hole in the lung causing it to collapse. Luckily I had neither as an issue! I was slightly disappointed I wasn't allowed out of hospital for dinner for a few hours before returning to sleep but instead my dad being the superstar he is got me a takeaway from pizza express for me! Much better than hospital food!
After my bronchoscopy, feeling sleepy
Pizza for dinner! 
The next morning I had to wake up and get ready to leave the ward and go to clinic to recieve my results of the biopsy. I was absolutely thrilled to hear I had zero rejection and no sputum in my lungs. Below shows the x-ray of my transplanted lungs!
Xray of new lungs!
Whilst I was in the waiting area for clinic I met with Vicky and Derek who are the manager and chair of freeman heart and lung association sport team. With the transplant games scheduled for July/August 2015 I was determined to join the team and take part! After talking with my doctors they agreed that despite not meeting the 6month post transplant criterea I was allowed to take part in the games and they happily signed the forms allowing me to compete! The only condition was I took it easy and didn't do every event under the sun! So I signed up to do a 5k cycle and a 3k walk/run. I was welcomed to the team with the kit and all the information about the national transplant games, excitement was an understatement!
Celebratory meal before heading home! 
After clinic we went for a lovely meal to celebrate the good news of no rejection and being able to compete in the transplant games! As soon as I got home I couldn't wait to try on my kit, and felt so proud to be able to wear it! It was a great motivator in getting me out exercising and building up my lung function! The games are being held in gateshead July 31st to August 2nd, my parents and I are going up and staying in a hotel with the rest of the team and look forward to socialising with other trasnplantees and their families!
Freeman sport team kit
I had Clinic number 3 on 11th June, a simpler clinic that only took up the morning, x-ray, bloods and lung function plus a review with my doctor! All was fabulous so we managed to escape by lunchtime and went to the coast to make the most of the weather and have a picnic before we headed home!
X-ray gown
My parents walking on the beach
Enjoying the sunshine on the beach!
On the 20th - 24th June I started to feel extremely tired and had a reduced appetite as well as a slight wet cough and the sniffles. These are all signs of rejection or infection and so on the 24th I decided to ring clinic and ask their advice on what I should do. They asked me to go to my local CF clinic to get an X-ray and lung function and fax it to them for them to review and decide upon the next course of action. So on 25th I attended my CF clinic extremely anxious and upset to get to the bottom of my fatigue etc. My lung function was marginally down but was within the limits of what could be a stable lung function due to the difference in calibration between the Leicester machine and the Freeman machine. To be on the safe side, my transplant doctors asked me to go to clinic the following Tuesday 30th June to confirm my lung function on their machine. It turned out my lung function was stable and hadn't declined, the drop in my one at Leicester was as thought, due to variation in machines. It was such a relief to hear that and I was allowed back home without needing a biopsy to check for rejection which they would have had to do if my lung function had dropped. The conclusion was made that I had suffered the symptoms due to over doing it and not resting enough! I need to pace myself more which is hard when I'm such a doer and go-getter! 

Due to pre-made plans the last 2 weeks has been extremely busy but I am pleased to say I will be taking it easy this 2 weeks at the coast! I'm taking my bike with me and plan to train for an hour a day for my 5k event but apart from that I'm going to get my creative head on and get making things!

My next clinic appointment is 28th July,  just before the transplant games so I think we will end up staying the whole week in newcastle and maybe visit northumbria whilst we are up north! July is turning into a very happy month indeed!