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 channel5.com/giftoflife 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:
https://www.organdonation.nhs.uk/register-to-donate/

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!

Holly
x








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!

kyaking! 
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!

Holly
x