Skip to main content

The home straight!

I awoke bright and early on Tuesday 7th April, to blue skies and sun, both my renal doctor and transplant doctor came to see me and were delighted with my progress, my kidney function was finally almost back to normal so I could stop having a liquid count everyday (writing down everything I drank and measuring everything I peed out!) and I was also allowed to ease off the potassium free diet which I had hated (no chocolate, crisps, fruit juice, tomato sauce) so yippee, I was in good spirits when my dad arrived! We went for my daily x-ray and a second lung function test, my x-ray looked great and my lung function had doubled since my first attempt! When we got back to my room I was corned by the physio to get on my bike and do some cycling! I managed 3 and a half minutes which impressed them enough to leave me alone for the rest of the day! With the weather so beautiful outside I wished so much I could go out for the afternoon to the seaside, I told dad this and he thought it was a lovely idea so when mum arrived with croissant and tea we told her our idea and she agreed if the doctors said I could go then we would. I asked Lucy my nurse to ask the transplant team so she rang them straight away to find out, next thing I knew the ward sister was knocking on the door to come in and straight away I thought this meant bad news but nope, she said Prof Corris thinks it's a splendid idea, go and enjoy yourselves! So 7weeks post transplant, 7 days of feeling good  on the 7th of April I left the hospital for the first time with my new lungs, we have decided 7 is our lucky number. It was very strange getting in a car for the first time in 7 weeks and being driven along, the world had changed so much in my absence, winter had turned to spring and once leafless trees were now flourishing with blossom. Below is the first view I got of Tynemouth beach, one of the best views I have seen!

Tynemouth beach
We sat on the bench overlooking the beach below and I just enjoyed the fresh air and sun on my face, it was still chilly and I felt the cold even more due to my tiny frame so I was wrapped up with so many layers and a blanket on my knee!
So happy to see the sunshine!
Stood overlooking the beach
The fresh air gave me an appetite and so I was finally getting my fish and chips from 'Marshalls' (all the nurses had recommended it when I was in ITU) that I had dreamed of for weeks. To finally be where I had wanted to be so badly, well enough to go out for the afternoon was the best feeling!

FISH AND CHIPS!!!

On Wednesday I got a note saying there was a parcel in the postal room for me that needed collecting so off dad went to collect the mystery gift! He returned with an oblong box wrapped in brown paper, we ripped the paper off to be met with an converse box, at first I thought my cousin who had been to america had relented and got me my request of converse as a souvenir but when we held the box it was too light to have shoes in. So I eagerly opened it and there before my eyes was the most beautiful bunch of daffodils, knitted and crocheted by my 3 crazy daisy knitting ladies! They'd even provided a vase with their daisies on it and a little message!

Bouquet of daffodils all knitted by hand.
My physio arrived again and I managed a whopping 4minutes on the bike WITHOUT oxygen for the first time! My oxygen saturations in my blood stayed at 97% which was great! I also did 10 squats for the first time, probably the hardest 10 squats of my life! The channel 5 crew then arrived for a chat and to arrange some filming opportunities, they want to film a physio session and also a teaching session that I had with the nurses all about life after transplant! I was due a teaching session that afternoon so agreed they could film it! Finally I had an hour to get showered and dressed and make myself look less of a patient! Just as I'd finished getting ready, Prof Corris came to see me to say 'goodbye' he was off to a conference in Nice for a week and thought I'd most likely be discharged before he returned! He said I looked too well to be in hospital and the sooner I got home the better! This was the most uplifting moment, it was the first time home had been mentioned to me, so I was overwhelmed with joy at the thought that home wasn't so far away now, I just had to do one last push to get there! 
Ready for the day!

At 4pm my nurse Jenny and the film crew arrived for my teaching session, it was all about learning the signs of infection or rejection and what to do in each case. It really made me realise that even after transplant life isn't always plane sailing and that you still have to be so careful avoiding infection like I did with my CF lungs. Teaching done, it was too late for a trip to the seaside so instead we arranged to go out for a meal at a lovely fish bar/grill with my dads cousin! I had a tuna steak with green beans and fries and a salsa! It was delicious! Also the waitress that served us was the same waitress that we had had on our previous visit in November 2013 when I was in newcastle for my transplant assessment! It was such a coincidence that we all even figured it out but she was over the moon for me that I was visiting them again this time with my new lungs! It just shows that the miracle of transplant touches people that you don't even know! 

I had a great night sleep and woke up Thursday excited for the day ahead, my friends Jess and Emily were coming to visit me to film the final part of their documentary for their university project that they had started filming with me all the way before christmas! We had supposed to do a days filming in February the same week I got my call so obviously that got cancelled and then with me being so poorly this was the first opportunity since then for them to film me, just in time before their hand in date! They were due to arrive at 1pm. In the meantime I was sent for x-ray, heart echo scan, lung function (10% increase) and saw both the transplant and renal doctors, all who were very pleased with me! I had just enough time to 'glam' myself up before my 2nd film crew arrived! It was so lovely to see Jess and Emily, they bought me some lovely treats, including a fab coral nail varnish! We spent the afternoon filming, I talked about what had happened, how I felt now and they way it had changed my life. We also spoke about my dear friend Emma Kingston, who died from CF in July 2013 and whom inspired me to chose to live and get a transplant.
Emily, Me, Jess, 'it's a wrap!'
Below is the finished film that Jess and Emily won best audience prize for. It's a fantastic film to promote organ donation and I am so grateful they chose me as their subject to help raise awareness of CF and transplants. 


After the busy afternoon filming I wave Jess and Emily goodbye! Dad arrives not long after with a home made lasagne mum had made me, I was in seventh heaven, lasagne being one of my favourite foods, it truly was a divine dining experience! 

Friday was another big day of filming, this time back with Channel 5 crew! We filmed a good half an hour session of me in the gym, I had such good fun, I did squats, the treadmill, core work on the gym ball, played catch with a ball to help to stretch my arms out! It was a giggle! Then physio finished it was back to my room to shower and get ready for another grand day out to Tyne mouth beach for more fish and chips with the film crew in tow! We had a great afternoon overlooking the beach with our fish and chips on our laps, enjoying the view! We had to be back at the hospital for 4pm as I was finally allowed to have my Vascath out because my kidneys were back to normal so I would definitely not need anymore dialysis! Yay, this was the last medical line to be removed! I enjoyed a second helping of lasagne left over from the day before and it was just as tasty if not more so! I was just about to get settled in bed when I was called for an x-ray at 10pm, I joked to my dad it sounded like we were off to the club x-ray on a Friday night, raving with radiation! 

I had a nice slow start on Saturday, enjoying being comfortable and cosy in bed, as the sun started to come out though I was up and ready for a day out, todays trip was Whitley Bay! We managed to find a betting shop just in time for me to put a bet on the grand national, the only occasion I ever bet! We bought fish and chips and sat overlooking the sea eating them whilst listening to the grand national on the radio, it seemed even more tense and exciting listening and not seeing it! I did well and true to form won £33.50 with Many clouds! 
Mine and dads betting slips!
Then we went to Delevals Ice Creams to get the biggest and best Ice cream ever! It was sweet sticky deliciousness! All the nurses had recommended it to us and it didn't dissapoint,  it took me forever to choose which flavour as they all looked so yummy, I decided upon a winnie the pooh honey comb pieces and choc chip ice cream in a choc sprinkle cone with lots of chocolate sauce! 
Monster honeycomb ice cream with loads of chocolate sauce! 
We drove along to St Marys lighthouse and parked up to enjoy our ice creams with the view! We got out for a photo but swiftly got back in the car afterwards as it was very blustery and cold!
Me and dad by the light house, ice creams in hand! 
Lovely evening sky by the lighthouse! 
On the way back to the hospital after a lovely day! 
On the way home we had a quick trip to Silverlink, an out of town shopping park, because it was so late all the shops were near empty and about to close, so I was allowed to pop in and have a look, I managed to get a big floppy hat and some sunglasses to protect me from the sun. Post transplant due to the anti rejection medication your skin becomes extremely sensitive to the sun and is more likely to develop skin cancer so it's essential to cover up as much as possible and wear factor 50 when out and about in the sun! Back at the hospital I had a few rounds of marmite on toast, an ovaltine and then was off to sleep in a blink!

Sunday 12th arrived and I enjoyed a lazy morning snoozing, dad woke me up at 10am! The biggest lie in I'd had! I had my morning bowl of fruit loops and a cuppa along with all my medication, dad then left to go help mum with brunch, we had the lovely Becky our sound lady from channel 5 joining us for brunch as the rest of the crew were home for the weekend and she had become like my adopted sister! Whilst everyone was gone, Prof Corris burst into my room, back from his conference asking 'why are you still here, I told you you could go home!' I laughed and said I had told the nurses so he opened my door which was right by the nurses station and announced to them all 'Holly go home, she doesn't have to go into the rehab flats she can go straight home, get it all sorted!' I couldn't help grin from ear to ear! Finally after 8 weeks home really was in sight and my new life could almost begin! At 11am, mum, dad and Becky arrived for brunch, Becky had bought some delicious Italian sweets from a local deli and mum had bought croissants with ham, cheese, jam, fresh fruit! It was a lovely continental brunch! We all ended up chatting until 3pm when we suddenly remembered my dads cousin and my great aunty were coming to visit at 4! Dad went and met Mary and aunty Agnes in the car park as aunty Agnes had hurt her foot and needed a wheelchair to get from the carpark to my ward! They arrived in my room with beaming smiles and bags brimming with treats! I had a lovely hour or so with them chatting and had this lovely photo taken!
Me, auntie Agnes and dad! 
After my visitors left I had a shower and got into my pyjamas! My favourite nurses were on nights so I went to gossip with them and also asked if I could 'lay flat' as up until that point I had being laying slightly propped up to help the fluid in my lungs reduce and I was now desperate to lay down properly! They gave me the answer I wanted, YES! The lovely Collette came to join in chatting she is my transplant buddy, she also has CF and had her call exactly a month after me so we met on the ward when she got put in the room next to me! We both chatted about food, going home and what we were looking forward to doing! Me and dad then shared some marmite on toast and I had my ovaltine ready for bed at 10.30pm!
Ready for bed! 
On Monday we made the decision with my doctors and nurses to go home on Thursday 16th April! Over the the next few days it was all hands on deck to get me ready, I had to do a stairs test to check I was able to go up and downstairs without a struggle! I had to do a 6 minute walk test to check against the one I did pre transplant! I had to do a full in depth lung function testing all aspects of lung volume and gas exchange!
practising going up stairs! 
Made it to the top! 
We also managed a final trip to Tynemouth and this time I actually walked along the beach with mum and dad and went right up to the sea! It made me so excited for the summer and spending it at our caravan by the coast!
Thumbs up on Tynemouth beach

Wednesday arrived and the mammoth packing job began. My room which was decorated with my lovely card displays had to be dismantled and the little annex to my room that I'd been using as a walk in wardrobe/pantry had to be emptied!
card display 1
card display 2


dad emptying my 'wardrobe'
All my dresses hung up needing to be packed! 
My room looked so bare all I had left was my leaving outfit, shower things, tablets and teddy! I couldn't believe it was my last night in hospital, 1 day short of 2 months, I was finally going home! 
I woke up early on Thursday as you can imagine, I got myself ready and did all my medication by myself before having breakfast! The film crew arrived at 11ish to film me leaving the ward and saying my goodbyes! Mum and dad also arrived and I did my final walk along the transplant ward as an inpatient! It was both happy and sad to be saying goodbye, I was going to miss all the wonderful nurses but was so happy to be going back home to live my new life! I also went up to intensive care to see all the nurses and say a massive thank you, I was so lucky that all but one of my favourite nurses were on duty, it was so surreal being back on the ITU as a healthy person! It took a minute for them to realise who I was as I no longer had my french plaits and looked like a poorly 12 year old! I was in a dress with flowers in my hair and walking and standing without any struggle! When they realised it was me they all shouted to each other 'It's Holly' and they all flocked towards me engulfing me in a massive hug! It was so lovely to see them and personally thank them for saving my life, they all said how good it is for staff moral to see me looking so great and healthy! 

With all our goodbyes said we finally left at half 12! I was overwhelmed with happiness and relief, I got into the car and just smiled to myself in disbelief that this was it, I'd done it! Even as I sit here now the whole experience is surreal, I have healthy lungs thanks to the selfless act of my donor, I have a future and so many exciting opportunities waiting for me! 

In the car on the way home! 
We arrived home at 6ish, the familiar sound as the tyres pulled up on the gravel drive and yet everything seemed so unfamiliar now, we had a house! Hospital wasn't our home anymore and we just couldn't wait to get in and bask in the comfort of proper beds! 

H x



Comments

  1. You truly are a remarkable woman, Holly! I have very much enjoyed getting to know you and your health journey towards new lungs and a new life! You keep inspiring me with your great strength and the incredible outlook you have on life. Thank you for sharing your story with the world! You have truly made a difference in my life. I can't wait to see what wonderful things you do with your new life! xoxo Vanessa :)

    ReplyDelete
  2. So happy for you! The video was brilliant too. Enjoy your new life x

    ReplyDelete
  3. Such an inspiration. I'm so glad your story had a happy ending - best of luck for the future :) x

    ReplyDelete
  4. Well Done .......so good to read your Blog, a happy ending indeed. Live each day and enjoy x

    ReplyDelete
  5. <3 You're such a strong and positive young lady. Never stop being exactly who you are. I've enjoyed reading and watching your videos and look forward to seeing and reading more. May you continue to have many more exciting opportunities and adventures.

    ReplyDelete
  6. I'm sure that you'll be up and running in no time. Just pace yourself; three or so minutes of cycling is a good start. Trust in your physio and your other doctors to help you on your way to recovery. Take care!

    Emmett Fletcher @ CK Physio

    ReplyDelete
  7. Thank you for all this I'm about to do my testing for transplant I hope my journey is as great as yours

    ReplyDelete

Post a Comment

Popular posts from this blog

New beginnings...

Hello, it's been a while, 18 months or there about since I last posted to this blog.

I don't have any singular reason for the long break there were numerous reasons. I wanted to reclaim some privacy that I felt I had lost through blogging so openly and regularly about my life, I also got caught up in the busy nature of adult life and I never seemed to get the same opportunities to sit and write a blog, if I blog I want to do it properly, not a half hearted attempt. But none of that matters now  because I'm back, with fresh eyes and new ideas on what I want this blog to be, both for myself and you guys reading.

First of all I would like to reassure the many people that have followed my story for the last 6 years that I am alive and well. I am now 2 years, 1 and a half months post transplant which is a fact that boggles my mind, I still have to regularly pinch myself to check it is true and not a figment of my imagination! I still have to attend hospital appointments to moni…

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…

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…