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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!
4 chest drains, a central neck line and the dressing on my scar
My epidural in my back for pain control
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!
Punching my physio with gusto!
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 was easily helped with an ice lolly!

Everything seemed to be going okay until gradually I started swelling up on my legs, ankles, face and neck and on the 24th feb when I woke up this is what I looked like:
my right cheek started to balloon out and my neck swelled 
Weds 25th, swelling increased, could barely keep my eyes open!
                                             
I awoke on Wednesday 25th February happy and free of pain however the swelling had got even worse and moved up to my eyes to the point I literally look like I've been morphed in a fat booth iPhone app but nope, this is real life 'surgical emphysema' where the tissues fill with air. Nobody really fully knew but the guess was that the air had been leaking from my lungs into my body tissues. There is no way of getting rid of the air except to wait for it to go by itself. I must say we all had a giggle at the fluid and air that had gone to my ankles, with my feet squished into my little 'granny slippers' I looked the true part of a granny!

Swollen feet and ankles in my granny slippers!
Despite the swelling I enjoyed my first fry up since transplant! However at mid day the doctors instructed that my epidural was removed but what nobody seemed to realise was that I didn't have substantial oral pain relief levels to take its place. As the epidural wore off, the pain got to agonising levels, particularly from the 4 chest drains, it felt like I had 4 red hot daggers in me. Things are a bit of a blur but basically the nurses didn't realise the extent of my pain and at 2pm I was sent of for a CT scan that a doctor had ordered that morning without realising the epidural would stop and the pain issues that would arise. Just getting wheeled on my bed to the CT department was torturous, every little bump caused a tsunami of teeth chattering pain across my chest leaving tears dripping silently down my cheeks. I was taken into the CT scanner room where I had to be transferred from my bed to the scanner, this alone was a tricky task as I had so many tubes coming out of me, trying not to pull at any or tangle them together needed about 4 peoples hands! Eventually I was laid onto the scanner and they could begin the scan, I thought to myself as long as I just lay here like a statue I can cope with this pain. To my absolute horror, I was instructed to raise both my arms above my head for the entirety of the scan, I felt like screaming and howling in pain, I have never in my life felt anything like it. My entire chest was on fire, it felt like it would burst open, tears poured down my cheeks as I squeezed my eyes shut willing the scan to finish, the scan lasted 10 minutes and by the end of it my body was uncontrollably shaking from the pain, I was grey faced and felt like I was going to pass out. On my return to the ward, the severity of my pain was realised when I rated my pain score of 100 and the scale is only 0-10! The pain nurse was sent for straight away, she arrived and was devastated to see me in such a state and rallied around to try and find a solution. In the end she had to go and get an anaesthetist from intensive care to come down to me and actually inject local anaesthetic around my chest drain sites at 2 different depths. The sting from the local anaesthetic being injected on top of the current pain caused me to cry out helplessly. I don't remember much after this, I think I was finally able to cope with the now reduced pain level and was a bit of an exhausted rag doll willing for things to get better...
By the evening my pain was under control and I was comfortable just in time for the arrival of my sister at 7.30pm, I was so so happy to see her and have my mind distracted from the days events!

The next day, Thursday 26th, I woke up to see my face had miraculously halved in size much to my relief!
Slight more recognisable!
It was a positive day in which I had the 2 basal (higher) chest drains removed and my catheter removed meaning being able to move around became a lot easier! I now only had 2 drains to navigate and keep untangled and so the physios decided that it was the perfect day for my first walk, I was able to walk the length of the corridor on the ward completely unaided even if my legs did feel like jelly and look like Bambi! My day was spent in my wonderful sisters company,  and we were treated to yummy homemade food from mum and dad and we enjoyed a 'family' (minus my brother) meal in the confines of my hospital room, salmon and veg risotto!

The following day Friday 27th, 10 days post transplant was what turned out to be the most scary and horrific day of my life. I awoke at 6am drenched in sweat with an extremely high temperature of 38.6'C, I felt terrible and rang my mum panicked asking her to come to see me straight away. Mum arrived which reduced my anxiety but nothing could cool me down. At 8am I started to cough to try and shift some mucus but ended up having difficulty breathing. I was put on oxygen and my sats were still only 87% (below 95% is bad) with the standard oxygen making no difference I was put on humidified oxygen at a higher setting. I sat on the o2 in a daze, all I could do was think about breathing and keeping myself alive, I could feel my heart beating faster and faster as the hours past which caused my anxiety to rocket in turn making my heart beat even quicker and my breathing even harder. I was poked and prodded for arterial blood gases and peripheral bloods to test infection markers. I was struggling so much I sat limp not even flinching when they pricked me. Listening to my chest they could hear an abundance of crackles, suggesting an infection. By the evening ITU had been alerted to my declining situation but they had no beds available for me so an outreach ITU team was sent and it was decided by them at 10pm I would be put on a C-PAP machine until I could be taken to ITU and assessed there.

By the early hours of Saturday morning I was still on the C-PAP and getting weaker and more exhausted with each breathe, I was in a nightmare, I thought of all the things I hadn't said to people and worried I hadn't planned my funeral enough because quite honestly I thought I was about to die. I was finally transferred to ITU at 7am I think where I continued to be on the C-PAP. I had reached desperation point and I turned to my mum and told her 'I want to die, I've had enough, just let me go'. They were the hardest words for me to say, ones I never thought I would say and obviously for my mum they were heart breaking. She squeezed my hand and stroked my head sobbing telling me 'NO, don't give up, we love you so much and can't live without you in our lives'. And so, despite trying to stop my self breathing the C-PAP didn't allow it and I continued on the rhythm of breathing. The doctors who witnessed all of that realised it was time to let me rest and re-ventilate and sedate me. I was told to say 'see you later' to my parents as I was warned I could be sedated for a while which I understood. Finally at 10am my struggle ended as they sedated me and re-ventilated my poor brand new little lungs. I awoke after the re-ventilating procedure and was able to see my parents once more where I mouthed 'I love you mum' before the sedation was increased and I entered dream world.

I was started on high dose steroids, a cocktail of 9 antibiotics and dialysis in the hope I could recover.

Fully tubed up in intensive care
To be continued...

Holly
x

I hope you understand that writing these blogs is very emotionally draining for me and so it is a slow and steady process meaning I have had to divide them up so you're not waiting forever for a post as there is so much to write! I will tell you the full story in good time I promise!


Comments

  1. Amazing ...

    I am full of pure admiration.


    Sending you all of my love and blessings from Germany,

    Mark x

    ReplyDelete
  2. You are amazing Holly. Much love to you xx

    ReplyDelete
  3. And I thought game of Thrones was good, brilliant to hear your story from your side and to be able to feel through your words the torcher and pain you have had to go through jus the to stay alive, You truly are an inspiration to everyone. 😘 looking forward to seeing you and your family soon.

    ReplyDelete
  4. Hi Holly!
    I discovered your blog by chance watching CF videos in Youtube and I’d like to thank you for sharing your story. You’re so brave and inspiring not only to CF community but to everyone.
    I’m Yasmina Gavin, I’m 26 years old and like you I have CF. I’m from Barcelona and I’ve been following your journey through transplant in Twitter since the very beginning. Although I haven’t gone through transplant I do identify with you in all the other sides of the disease.
    I’d like to keep contact with you online and share our stories. Feel free to follow me on Facebook, Twitter or Instagram.
    Sending you all my best wishes and love from Barcelona! 

    See you !


    ReplyDelete
  5. Such an inspiration. Thoroughly enjoyed reading this, even though it made me feel so sad. Sincerely hope things are on the up for you and really looking forward to reading more.

    Love x

    ReplyDelete
  6. A very hard read! Do keep us posted

    ReplyDelete
  7. I can't believe how similar our experiences are! I didn't have to be re-ventilated, but everything else is so similar. I'm nearly 17 years post and doing incredibly well. I can't wait to read your next post! Big love from across the pond in Australia XO

    ReplyDelete

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