Skip to main content

The only way is up!

I awoke early for my first morning (Saturday 28th March) back on the civilised ward 38 as today was the day I got my first set of visitors! I had been looking forward to the weekend all week as 2 of my best friends Emma and Emily were travelling up from Leicester to visit me all weekend by staying over in a near by hotel! Dad arrived first to help organise my new found favourite breakfast, honey on toast with a cup of sugary tea! He then helped organise all my medicines and nebuliser with the nurse so I was all sorted for 10am when mum arrived to glam me up! She helped me shower, shave my legs, wash my hair, moisturise, comb and blow-dry my hair and even painted my nails! I even put a tiny bit of make up on for the first time in weeks! Nothing was going to take the smile off my face that day!

Waiting for my friends to arrive 
At 3pm they arrived and it was all smiles and big bear hugs! We had so so much to catch up on so spent the next couple of hours talking for england before my mum and dad arrived baring a picnic for us! So we all sat round my tiny 'over the bed' table on wheels and tucked in to baguettes, ham, cheese, fresh salad, crisps and fruit it was delicious and the first full meal I ate with out feeling nausea! After scoffing our faces we played cards, a game called 'mammoth' which I was terrible at! Then I made a big achievement when Emily decided she needed a fizzy drink from the vending machine which when we asked happened to be on the next floor up in the relatives room so I decided to test out my matchstick legs and see if they could manage the distance! I succeeded and we had a celebratory selfie in the lift together!

Lift selfie! 
After a few more hours chatting and playing cards Emma and Emily left for the night and I got cuddled up in bed! I was finally allowed back onto my normal overnight feed formula instead of the special formula I'd been on due to dialysis. I was so pleased with this news as I knew that I could tolerate my feed, how many enzymes I needed with it and that it did help me put weight on!

On Sunday morning I was greeted with John who although I only had look after me 3 times in total, was my one of my favourite nurses! This made being woken up at 8am for a blood test slightly more tolerable especially as he had my tea and toast ready and waiting for as soon as the doctor had finished! I'd barely swallowed my last mouthful of toast when Dave my porter arrived, he was pleased to see me back down on the ward and hoped I stayed down now! He took me to have a chest x-ray where I got to see the lovely Diane who worked on reception and always treated me like a princess and gave me stickers despite the fact I'm 23 not 5 years old! 

At 10.30am Emma and Emily arrived and both took a shine to John, like me, they thought he was hilarious and we spent far too long doing my medication just so he could chat to us! At 12ish dad arrived with some croissants for Emma and Emily and a full roast dinner from the canteen for me! I had decided that I wanted my first roast dinner as I'd been craving one for weeks and surprisingly the hospital canteen did a nice one! 

With the weather not looking too bad I decided that I would like to go for a trip to the great outdoors in my wheelchair, baring in mind I hadn't breathed in fresh air for a total of 40 days! I had been confined to the hospital and its air conditioning system all that time! John agreed Emma and Emily could take me out so they wrapped me up in about 6 layers plus 3 blankets for my first outing! Our enthusiasm wasn't even knocked when we saw it had started to drizzle in the time it'd took to get ready, it just meant we had to go to one of the sheltered entrances! As the automatic doors opened I got a good blast of northern air and breathed in with relief! The wind whipped around my face and I shut my eyes in appreciation of this wonderful air filling my new lungs, taking those deep breathes was one of the first moments I started to feel the benefit of them. 
Fresh air time! 
At 5pm we all gave each other hugs and said our goodbyes as they had the long drive home and work to attend on the Monday! Once they had left I was given my 'little red book' which was exciting as it was the first step in the education you have post transplant and another step closer to home! My little red book contains all my medications in a list and their dosage for that day. I have to fill it in every single day so my doctors know exactly what levels of drug I have been on and when. I also have to record my weight and temperature in it. This red book is like my bible and I have to take it to every clinic visit for the rest of my life (obviously one book won't last forever!). It was a really positive step for me as I felt back in control of my medication and educated and informed on what I was taking and why.

Monday morning I woke up with the blues, the weather was awful and I guess I was on a bit of a downer being back on my own after the wonderful visit all weekend from my friends! Mum soon sorted me out with some pampering! I had to have a session of intermittent dialysis that afternoon which lasted 3hours, they took off a litre and a half of fluid and amazingly did a 500ml wee straight after it had finished, this was super news as it meant my kidneys were returning to normal function! We found out from my blood levels that I had low iron and that it would be monitored so they could decided whether to give me a blood infusion or just an iron infusion. Dad had been and bought scrabble so the 3 of us, me, mum and dad, sat and had a game that evening which mum won by miles before we called it a night! 

Filming re-started in full force on Tuesday with lots of interviews asking about what had happened over the last 6 weeks (we hadn't allowed any filming in ITU) and how I was feeling now! My doctor visited me with good news that my kidneys were doing well still but he felt that this week it was important to do a bronchoscopy and biopsy to check for rejection and infection. We decided the sooner the better so I was scheduled in for the next day! My sister arrived by train later that evening but I didn't see her until the next day! 

I had an absolute barrel of laughs on the 1st of April with it being April fools day of course! I played numerous pranks on both the nursed and my sister! I went for my first lung function test post transplant which was both nerve wracking and exciting! I had to breathe into a machine as fast as I could for as long as I could 3 times to get an average %. My % had increased slightly since pre tx but my X-ray was showing I had fluid gathered in the bottom of my plural cavities that stopped complete expansion of my lungs and so as the fluid gradually reabsorbed into my body I was told my lungs would inflate bigger and bigger improving my lung function substantially. My bronchoscopy went well, I was awake throughout but in a woozy state from the slight anaesthetic they gave me! I got to see photos of my new lungs and where the connection was, it looked all pink and well healed! 

I awoke to blue sky and sun on Thursday with my first thought being, more fresh air! I was visited firstly by my doctor with great news to start the day, my bronchoscopy results showed no infection or rejection, all captured by the film crew! My mum dad and sister then arrived with brunch which we enjoyed before finally wheeling me out of the hospital for more fresh air! They took me on a nice little ride around and I had this lovely photo in front of the first spring daffodils!  
Katy, myself and my dad!
The day was filled with even more good news when my renal (kidney) doctor came to tell me that the intermittent dialysis they had planned for that day were cancelled as my kidney function was increasing each day by itself! The afternoon was spent with Katy doing crochet and chatting (whilst also being filmed some more!) I then had a power nap before my Auntie arrived to see me with treats galore! 5 minutes later mum and dad also reappeared and 5 minutes that my uncle arrived so I ended up with a room full! It was a lovely few hours of catching up and feeling very loved by everyone!

When my sister arrived on Friday she had come via the train station to pick up her boyfriend Nile who  had also come to visit me, she walked in asking  'Do you want to build a snowman?', 'YES!' I said and out from behind the door popped a massive Olaf balloon! I was grinning from ear to ear and couldn't stop giggling he was fantastic! 
Me and Olaf loving life!
The physios also bought me a gift in the form of an exercise bike, this didn't quite get the same reaction to Olaf I must admit but I knew that building up my strength was the next building block to getting me home! On my first session I managed 2 minutes, with 2l of oxygen on. I was bent over double after and breathing deeply but... no coughing! I was determined now to go on the bike everyday and build up my stamina so I could get to 10minutes!

Another weekend had come around and this one also bought promise of new faces! 4 of my closest friends were coming up for the day on Sunday and I had decided to ask one of them to go to my house to get me some clothes and my make up and I'd only packed pyjamas and jogging bottoms in my transplant bag! So after spending half an hour on the phone with pictures of my wardrobe being sent and me choosing clothes I was satisfied Ginny would bring all I needed! Katy and Nile spent the day with me whilst mum and dad got a much deserved day off and went out for lunch together. Me and Katy crocheted again and Nile read the papers then we had a game of cards called 'shithead' which I won every time so was luckily never declared shit head haha!
Having a wander around my room!
Dad returned to see me after his day out to keep me company whilst Nile and Katy went to cook a curry for us all for dinner! It was delicious! Afterwards we had a game of scrabble... 

Intense scrabble game! 
On sunday my dad arrived at 8am to help with my tablets and breakfast, Katy, Nile and my mum arrived at 11ish with a lovely picnic breakfast, warm croissant, ham, cheese, jam and fresh fruit! My sister then helped me get ready for the arrival of my friends! At an impressive 1pm, (it's over a 3 hour drive) Ginny, Robyn, Annie and Mark arrived to see me! My mum, dad, Katy and Nile left us to it and went to the coast for the afternoon! I had a lovely afternoon with the girls and Mark, they'd bought me gifts and my clothes from home! It was a lovely blue sky and sunny day so we went on an adventure around the hospital grounds to make the most of it!

Me and my girls! (Annie, Robyn, me, Ginny)
squinting in the super bright sun!
At 6.30 my lovely group of friends had to leave to hit the road and get back home! My sister and Nile arrived just after they'd left with my dinner, chicken curry again! I made the most of my evening with them as they were leaving in the morning and had told me it would be quite a while before they could visit me again! By 9pm I was exhausted after such a busy day and settled into bed ready to sleep by 10! I felt so positive about my first week back on the ward and knew that the only way things would continue was upwards! 

H x


  1. Great to read this holly. Glad your getting stronger and you will now live a full and healthy life.xx ben wynne fb me

  2. Also meant to say hi to your parents. Lovely people!!


Post a Comment

Popular posts from this blog

Sleeping beauty, or not!

After being re-ventilated on the Saturday morning 28th February, the doctors had a meeting with my parents explaining the seriousness of my situation and even suggested to them to call my brother who was working on a ski season in Austria and tell him to get the first flight to newcastle because of the high chance I wasn't going to survive. They were told my lungs were completely infected with pseudomonas along with a secondary infection of pneumonia and on top of that I had septicaemia. My X-ray showed my lungs were a total white out, my feet and hands were purple and frozen to the touch, my mum said I was like a corpse. Along with my struggling lungs my heart was at full stretch, I had now had a dangerously hight heart rate of over 170bpm for over 24hours. My mum, dad and sister took it in turns to be by my bedside constantly, holding my hand and talking to me, willing me to get better.
By Sunday morning 1st March, things had took a turn for the worst, my heart rate was still ex…

The start of the roller coaster...

On the 19th February I was taken to the brand new transplant ward in the state of the art centre of transplantation, I was given my own room and en suite that could easily pass as an apartment it's that big! I still had 4 chest drains in and had an epidural to control my pain so I wasn't able to move from my bed except for the comode (toilet on wheels) due to all the wires and tubes!
I had daily physiotherapy sessions in which the aim was to restore my balance and regain muscle. I started off with marching on the spot, raising my knees nice and high and punching the hands of my physio or doing very gentle arm weights!
Despite working hard at my physio I was finding it hard to cough up the gunk from the operation and so it was decided to do a bronchoscopy to do a lafarge in which they flush out the lungs with saline and suck back any mucus that is there. I was under general anaesthetic for this first bronch and it went smoothly, I just awoke with a slightly tender throat which …

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…