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!

Holly 
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