Part 4

“WOW”, was all I managed to whisper.

I have never had a breath like that. A full, easy, deep breath!
It felt massive! A breath I will never ever forget. Ever.
They got me all settled and my dad rang round to let everyone know I was awake properly and the vent was finally out; I was breathing for myself.

Later that day, I was suddenly in a lot of pain and very uncomfortable. Having tubes and wires all over the place and being very drugged up and weak due to muscle wasting over the past few months, I needed help moving. On that first day, I couldn’t even manage to lift my own hand up or turn my head. So the nurses ‘roll’ you to change sheets, let you use the bedpan and frequently move you to prevent bedsores on pressure points. The nurse I had that day was called Chloe. She and the student nurse had me in every position possible. I felt so bad for them but I knew I had to be honest with them. I wouldn’t be able to settle if I was uncomfy or in pain. So they moved me, stood at the bottom of my bed and asked if I was comfy.
I shook my head.
This process was repeated over and over and over and over again. Eventually, I had a little break down and told her it was pointless and I was sorry for messing them around. She was so lovely and told me not to be daft. She said, “This is my job to keep you as comfy and pain free and happy as I can. So I am determined to figure this out. Let’s look at your pain relief.”

So we tried, IV Paracetamol, Oromorph, and IV morphine. Nothing was getting on top of it. It was decided I was to have a PCA machine. This allows you to self medicate safely by allowing you to press a button when you need a top up of pain relief. It only allows you to push the button every half hour so you’re never able to give yourself too much. I also pinpointed where the majority of the pain was coming from and was most unbearable.
On closer inspection, we found the culprit!
The day before I was woken up, they put in an epidural. However, they had to have a fair few attempts at it. The anaesthetist said due to my small frame, it was very difficult to get the epidural in the right spot. So Chloe had the anaesthetist team come to check it; when they came they saw that it seemed to be working just fine. She then noticed that one of the failed insertion sites was looking very aggressive. When she placed her hand over it I winced in pain. EUREKA!
We’d figured it out. The next plan of action was to find out how to stop the pain.

Chloe popped some emla cream (numbing cream) on a sticky patch and placed it on the sore. It stung at first but when it kicked in, the pain subsided. I was finally pain free so I had a little nap before my visitors came. I woke to see my mum peering at me. I hadn’t quite found my voice yet; I think I was just so overwhelmed by everything. I had nothing I wanted to say or could think to say. So I didn’t. I just wanted to listen to everyone else and take it all in. I was actually alive. I had new lungs and I was alive.

Shaun came to see me too but again I just couldn’t think of anything to say. I think it was nice for everyone to see me awake properly and with no NIV or ventilator. It was with Shaun that I had my first drink since the Thursday night before transplant. Nearly a week ago. Liquid was very much welcome on my dry lips. They were so sore, broken, dry and chapped. My throat was dry and sore too from having the vent there. Chloe brought me a little sippy cup that reminded me of those Tommy tippee cups that babies have. It had a straw and my next challenge was to use it. So I attempted to get the straw into my mouth but my hand, eye co-ordination was really off and continued to be for the first few days. I couldn’t even touch my own nose, which everyone found amusing. If I had an itch on my cheek, I couldn’t scratch it, as my hand would be over near my ear instead!

Once I finally got the straw, the next challenge was to get the cordial out of the cup and into my mouth. This was very challenging! I realised quickly that I was going to have to learn to do some things again; i guess I had lots of drugs still in my system and so my reactions were still delayed. That first little sip was so heavenly! My expression must have said it all! Well that or the very loud, “AHHHH” I exclaimed afterwards.
Swallowing was really difficult but I was told that would be trauma on my throat from having the ventilator there.
My first day fully awake was coming to a close and it was time to sleep. Something I found very difficult now it was medically induced with sedations. The night was very long!

Thursday was full of physio, I had nebs, chest clearance, breathing exercises and I stood out of bed for the first time with lots of help.
Standing up felt good, dizzy for a little while but then really good. Laura the transplant physio said I had strong tummy muscles and this would help regain my balance again.
Once physio was done, I had my first chest drain out. One down, 3 to go! I sat out in the chair for a little bit but first I had a wash with the help of the nurses. I sat on a chair while they used dry wipes dipped in warm soapy water to wash my body.
It was the first time I got to have a look at my little wounded body.
I had a dressing over the main attraction, so I couldn’t see the scar from the transplant yet. I did see the 4 drain sites with three remaining drains still in situ. I then also found a new little scar on my groin. I was suddenly filled with wonder! What the bloody hell had gone on there?
At this point I was unaware that I had been on ecmo.
I didn’t ask any questions though yet, I just enjoyed the warm water over my skin and the gorgeous smell of my shower gel.

After transplant, you really become 100% reliant on the nurses. They moved me in bed and out of bed, they washed me, they got me drinks, got me pain relief, did my hair, gave me support and they even had to wash my little peach after using the bedpan. I had a catheter in but unfortunately for all those involved, you got to go when you got to go and there isn’t a catheter for the other end. Yes your dignity has to be put to one side. Honestly, as mortifying as it was at the time, It’s a teeny tiny price to pay for how I feel now! The nursing staff on ICU do an incredible job. After the first few times, I felt very comfortable doing what had to be done either on bedpan or commode and being washed by them. There really is no reason to feel embarrassed, that isn’t going to stop you being but the nurses know this is part of their job and all they want to do is help you, make you feel comfortable and at the end of the day, walk out of ICU healthy and well on your way to heading home!

Friday was a big day.
I was one-week post transplant and they wanted to do a bronchoscopy. I was SO nervous for this. I’d never had one whilst awake before. I last had one in the children’s hospital but under general anaesthetic. My nurse was Stacey on this Friday, she was super lovely and explained everything she was doing and why. That morning I had my epidural out, my second drain out and also the central line in my neck out. I only had an arterial line, catheter and two-chest drains left.
It was time for the bronch at lunchtime, I was so anxious! It was uncomfortable but over very quickly. I had a few visitors that evening and was shattered by the end of the day. Here is a picture of where the central line was.

Saturday was one of the best days I’d had so far. The doctors were very pleased but felt I needed to use CPAP to make sure I was taking full, deep breaths. I was new at this. I literally had to learn how to breathe properly. I was so used to taking quick, sharp, shallow breaths from the tops of my lungs that I didn’t know how to breathe from the bases. Taking ‘normal’ breaths felt so strange to me and didn’t feel normal at all at first. I sat out in my chair all day, did some marching on the spot with physio and clearance.
My appetite was still so small so all I managed that day was snacks form lunch and a sandwich and some grapes for my tea that night.

Monday was even better!
I did more marching on the spot with the physio using a walking frame. I got moved form Zone 2 of ICU and into Zone 1, which is a step closer to the transplant ward. My appetite had grown overnight and I ate so much that day. I even had my first krispy kreme post transplant and a chippy tea. I had the PCA machine taken down today too so I was just using oral pain relief and I had oromorph as back up for when I really needed it. All my visitors kept saying when they came to see me was how healthy I looked with colour in my cheeks. I did my first walk around the bay using my little zimmer frame and I did it with no oxygen! I went to sleep with a massive smile on my face. I felt great and was excited for what was to come. This is me with my zimmer!    

And this is a little view of my bay in ICU

I woke early Tuesday morning with bad chest pain around 3am. My sats were really low and I was needing more and more oxygen. I had an emergency x-ray which looked okay to the on-call doctor so I had to wait for the transplant team to come on the ward round. I was worried and very breathless now.

 

 

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Part 3

So the christmas buzz was over and done! Everyone came back to work on the ward and the physio was tiring but worthwhile.

It was New Year's Eve's Eve very early morning, literally one exact week since the last one and I was woken up again to be told to ring my mum, dad and shaun as they'd called again with potential new lungs for me. I was feeling a lot calmer this time. It knew i wasn't nervous, I slept most of the day while we waited to find out if it was going ahead or not. it was a slow, agonisingly long wait. It got to 2pm in the afternoon and I just knew this was not gonna be the one. So when they came in at 4pm to tell me it wasn't going through, I was okay with it and felt very emotional for the donor's family. They'd agreed for this to go ahead but it didn't get to and I was just very thought provoked all evening about it. 

I'd had two calls come in just a week of each other! They certainly were trying to find me these lungs and I was so thankful for it.

It was New Years Eve and I was ready for a party! My mum, sister and andy came early that evening to help me get ready! I had a visit from a family friend, Tony Kenny who had smuggled in a bottle of champers and a massive balloon. It was lovely of him.

Charlotte and Lisa Hepp were the nurses working New Year's Eve and i had decided I wanted to bring the new year in, in style with a party! 

My auntie shirl came to visit with Chelsey before shaun turned up.

When they had left, shaun spent the evening here and stayed the night. We counted the new year in with the nurses in my little room!

"5... 4... 3... 2... 1... HAPPY NEW YEAR!"

We let off around 45 party poppers that night. 

2015 had started with 45 BANGS from the party poppers. I hoped this year i would get that call i needed. That call wouldn't be a false one. It would be the real one and it would be a successful. Positive Mental Attitude?

Come on universe.. I need this!!

 So after a very crazy New Year's Eve party, this was me the morning after! 

Fun and games were over and it was time to work. My physio's Mairead & Fiona were amazing with me. Pushing me and keeping me motivated. It was time to keep on going till my transplant time was here. I would often fall asleep during physio sessions, but i was often falling asleep throughout the day regardless. I was getting weaker and I was feeling totally wiped out. I was managing teeny tiny walks with oxygen running through the V60 ventilator but they were the best I could do. I just hoped they would be enough to keep these rubbish, tattered, knackered old lungs going. 

15th of January 2015, i had just tuned in to big brother and not long said goodbye to my dad when the nurses on the night shift, Carl and Paula came bursting through my door telling me to stay very calm, but it was happening again. I needed to call my dad, my mum and shaun because the call was here for the 3rd time! 

"3rd time lucky!" I said as i rang round everyone. There just felt something good about this one. I could not stop thinking about the donor who was willing to save so many lives by doing this and of their family who was accepting to grant and respect their loved ones wishes at the hardest time of their life. 

They got me prepped for theatre as it was the same situation as the first call. If the donor passed away once the life support was switched off, I would have to be fast asleep in theatre asap! 

Me and my nurse Paula popped a name tag on my minion teddy, whom i had named after the nurse Carl. Carl the minion would be staying right by my side the whole way through as my transplant mascot! 

I fell asleep again while waiting after watching the dark knight on itv2. I was woken up at 02:50am on Friday the 16th of January 2015 by the transplant co-ordinater in scrubs, 2 theatre nurses, Carl, Paula, my mum, dad and shaun all in my room looking at me. 

"It's happening, the lungs are good and it's a go ahead!"

Autopilot sophie took over and i nodded with a smile on my face in a dazed state from my dreams. It was a chaotic journey down to theatre with me on the bed, my NIV and huge oxygen tank and the entourage of people!

At 03.05am i had had a cannula and arterial line put in and soon realised they were putting that milky coloured liquid into my cannula.. it was time to say a very quick and rushed "see you later and I love you" to my mum and shaun. I gave them both a kiss and my eyes were getting so heavy. I tried to fight it to say goodbye to my dad but it was kicking in quickly.. my eyes were closing as i signed 

I... love... You... to my dad. The last thing I saw was my dad smiling away at me. I was in the land of nod at 03.10am on the 16th of January 2015.

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The rest of this blog from this point will be written with me going off what i was told by everyone and also by using things written in a journal that was provided by the ECMO team on the ICU as i was sedated for 4/5 days after the operation.
This is the journal that nurses, friends and family wrote in during my admission after transplant.

The operation took 10 hours. From the lobectomy i had in 2008, my right lung which has always been the worst lung was a bugger to get out. It was stuck to my chest cavity and the surgeon had his work cut out for him trying to get all of the lung out. They put me on two machines during the operation and kept me on them when i came out of theatre and into CCTCU. 

One of the machines is called an ECMO machine, Extra Corporeal Membrane Oxygenation. This is basically does exactly what your lungs do for your blood. It's used to put oxygen in the blood and remove carbon dioxide from the blood. It provides support to the lungs and if needed the heart. I had two large plastic tubes connected to the ECMO machine and inserted into my body. One went into the open wound from the transplant and the other went into a large vein in my groin. This is a picture of the  ECMO machine.

The other machine is called a cell saver machine or Intraoperative blood salvage. This machine suctions, washes, and filters blood so it can be given back to the patient's body instead of being thrown away. One advantage to this is the patient receives his/her own blood instead of donor blood. I was needing a lot of transfusions as i was loosing lots of blood due to a bleed. So this machine allowed my  blood to be recirculated. I don't have a very clear photo of the cell saver machine.

So the transplant had been successful but as i said, i was loosing a lot of blood due to this bleed. 

It was now Saturday the 17th of January, a critical 24 hours had passed and the bleed was not slowing down, they called my dad back in during the early hours of Saturday morning because they wanted to take me back down to theatre to see if they could stop this bleed! Whilst my dad was just giving me a kiss goodbye all the alarms started going off around me. The nurse started shouting for help and my dad was ushered out of ICU. 

The crash team was called but not needed and once i was stabalized, i was taken to theatre so they could find where this bleed was coming from. 

When i was back, they had managed to slow down the bleeding but it still hadn't stopped. 

Later that afternoon i was taken back down to theatre for the third time to have another go at stopping this bleed. When i came back to ICU around 5.30pm on Saturday 17th, the surgeon was 95% certain he had found the problem and cortorised it to stop the bleeding. I was no longer needing anymore donor blood. I was managing just fine on the cell saver using my own recycled blood! 

It was Saturday evening when I started being responsive. I was still obviously heavily sedated but I was squeezing my dads hand.

He came in to visit me and said, "your little dads back and holding your hand" and i nodded! Taken aback, he asked if I knew he was there and i nodded again. Flabbergasted he then asked me to grip his hand if I knew he was there.. so I did and then began to open my eyes. He told me my mum had been and I nodded again, told me shaun had been and just left so i mimed, "I know" 

He told me my nana Flo had been asking about me and I smiled :)

The nurse asked if I was in pain and i shook my head. My blood pressure was rising so they decided it was best to increase my sedation so as she did that, my dad told me he loved me and night night but I was refusing to sleep. I kept nodding and smiling. I eventually dozed back off after lots more sedation. 

I vaguely remember my dad telling me my little dad was here but I don't remember any of the other things or opening my eyes. 

The nurses took a few photos for me including a selfie of me and carl the minion. I have cut me out of the picture incase anyone found it upsetting ... so here's carl, right by my side as promised! 

I was clearly fighting the sedation as I am told i kept drifting in and out of consciousness. Squeezing hands, smiling and frowning.

It was sunday the 18th now and they decided to take me off the cell saver machine as I was no longer loosing any blood. Physios came to keep me mobilised. They just move your arms, legs, hands and feet around for you whilst you're sedated. 

Sunday was a good day and the plan was to take me off ECMO the following Monday so they could begin bringing me round. 

The big day came and I was taken to theatre first on the list on Monday 19th to have the ECMO machine taken out and to have my chest wound finally stitched up! I got back on ICU just before lunchtime and it was decided I would be left sedated and on the ventilator for another day so I could have another chill day. 

Tuesday 20th, at 11am i had an epidural so that once the sedation was really weaned down i would hopefully be in hardly any pain. They reduced my sedation down so I was more awake but still had the ventilator in as i wasn't taking any breaths for myself. I think due to being on the V60 for so long before transplant, i had become used to allowing vents do all the work and not used to being capable of taking those breathes for myself. The surgeon who performed my surgery was going away on business that day so he came to say goodbye till he got back, I can remember shaking his hand and him telling me to squeeze hard so I did and he smiled.

I began to get tearful later that day as I was frustrated that nobody could understand me and I couldn't communicate with anyone due to the ventilator. I was given a pen and paper but it was just as hard figuring out what I was attempting to right with all the sedation still lingering and pain relief. I remember being so relieved when someone figured out what I was trying to say or ask and so annoyed when they couldn't. 

I was given more sedation for overnight so I could get a good sleep ready to have the vent removed the following day!

I clearly remember things from this point on. Wednesday 21st of January started at 03.30am for me. I woke up completly confused and distressed, i had no idea where i was. It was dark, noisy and I couldn't move or see anyone! I could feel my heart racing as panic struck in and I felt tears run down my face when a stranger appeared at my side asking if I was in pain. I shook my head.

She asked if I was okay, I shook my head.

Still crying I tried to telepathically tell her I wanted my mum or dad or shaun or anyone familiar!! I just felt scared and alone but I had a ventilator down my throat preventing me from telling her this. A guessing game again!!

I signed for pen and paper and strained to see straight enough to try to write the word MUM and DAD.

I gave up on the word mum. The 'M' was too difficult in this weary drugged up state. I drew two big D's and a very strange looking A before she finally asked, "dad.. Do you want your dad?" 

My face lit up with relief and I nodded. 

"Sophie. You need to calm down, it's very late at night and your dad is sleeping. He can't come now"

I was distraught! I began to cry unconsolably. Alarms were ringing as my heart rate and blood pressure flew up. She put more liquid into my cannula.. It was some sort of sedation but I was far too awake now.. it did nothing. Still I cried. As I was coming round more, I was coming more aware of the tube down my throat. I started to gag and heave because of it! 

She made me promise to stop heaving (as if I could help it!) if she contacted my dad. I nodded knowing full well I wouldn't keep my part of the bargain as long as this tube stayed in!

It felt like hours but it was actually only a few minutes as my dad was staying in the hospital accommodation incase of emergencies whilst I was in ICU. I calmed down once I saw him. That's all I needed was just someone I knew.

Well.. That and this tube out.

I was heaving again now and pointing at it furiously, miming the action of pulling it out. I was doing this to try to communicate my question of when can it come out?

I was awake, what more could they want? I didn't understand that i wasn't breathing for myself so they weren't allowed to just pull it out, that and it was around 5am!! I kept my eye on the clock and counted every minute till it was 9am, I knew the doctors came at 9am and they were the only people who were gonna make the decision for this vent to come out. 

Finally they appeared and I looked willingly at them but they told me I wasn't taking enough breaths on my own. My nurse for the day Chloe explained to them that she believed i was more than capable and was just not realising that i wasn't doing the breathing but when reminded i breathed for myself just fine.

Thankfully they agreed and it was time to get this tube out!

Suddenly I was petrified.. what if they were wrong, what if they took the tube out and I didn't breathe for myself. What if I couldn't breathe for myself?

My dad tried to calm me down but I was so scared as 3 nurses got everything ready remove the ventilator. 

It was Wednesday 21st of January 2015, 09.06am.

"Okay Sophie, we are ready now. I am gonna count to 3 and on 3 I need you to have a big cough and we'll pull this tube out for you"

Its not usually the case that people remember the tube being taken out but I do. My god do i ... 

"1.. 2.. COUGH!"

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Part 2

"You're not dying yet. You are not dying yet because we are not giving up on you. This will be your last christmas if that call doesn't come. We as a team will do everything we can to keep you going till that phone rings. Even if that means ventilating you. I will ventilate you."

I repeated Proff's words to my dad when he came back in after my private chat. I decided to get my mum, dad and Shaun in the room that evening so i could tell them what had been said. 

That night, i figured that if this was to be my last christmas that it would be a bloody good one, regardless of being in hospital on the V60 or not!

As christmas approached quicker and quicker, my family huddled round me to give me what felt like a christmas week! 

I had my cousins, Samantha, Kristian and Lucie-Jo come to decorate the room into a santa's grotto! I shall pop a few photo's here:

Every year since i was a little girl, me, my auntie and once my sister beth was old enough; would watch a christmas film a few days before christmas and have a mini feast of sweets, popcorn, crisps etc. 

This year we all got round the hospital bed with an iceblast they had brought from the cinema on their way to the hospital and we watched one of my favourite christmas films, Elf. 

My best friend Emily and Paddy came to have an early christmas day as theyd be spending the actual day with their families. So we opened each others presents!

At night when everyone had left and i was unable to sleep, the nurses and i would play board games (obviously when everyone was sleeping) 

The final Tuesday (23rd of December) before christmas, i had a little christmas sing-along with my physio Fiona and the Nurses Charlotte and Nia! 

"Snow is falling all around us, children playing.. having fun!"

I went to bed that night so happy and looking forward to christmas with my family and my other family here at the hospital on Pearce ward. 

At around 11pm that night on Christmas eve eve, the nurse come into my room and told me to stay calm as the transplant co-ordinators had rang and they had a possible set of lungs for me. I rang my mum, dad and Shaun to all make their way back to the hospital and explained that it wasn't for certain and we would be in for a long wait as had been explained to me.

This was my first call in just under 2 years of being on the waiting list.

I was so ready for this, i needed this more than i ever had and most importantly, i knew my time was running out fast. 

One thought that kept buzzing round my head was, "but it's christmas in a day.. someone has lost their life, people have lost their loved one and it's christmas."

My mum, dad and shaun turned up and the nurses started preparing me for theatre. 

I was ready for theatre by 1am but we had heard nothing still. 

I was getting more & more nervous now. The what if's had time to creep in and i don't know what it was but something in my gut was telling me it wasn't right. 

I just put that down to the nerves and tried to fall asleep for an hour or so. 

I was woken at 3am to be told the donor was on life support and they were going to switch the machine off, however, there would then be a time frame for the donor to actually pass away for the lungs to be able to be used. 

I think this is 4 hours. So from the time the life support is switched off, the donor had to pass away within 4 hours or the lungs would be classed as unsuitable for transplant. 

I was taken down to the anaesthetic room to be prepped so they could rush me in theatre as soon as they were given the go ahead. 

We sat in that anaesthetic room for what felt like days. 

It must have been around 6 or 7am when we were told the donor's heart had not stopped beating and therefore the transplant would not be going ahead. 

I thanked all the staff who had come in overnight and wished them all a merry christmas before getting wheeled back down to Pearce ward. 

There was an ounce of dissapointment but if i am being honest, i felt more relieved. Something was just telling me since the start that that call was not the one. More than anything i felt an overwhelming exhaustion.

 I think all the emotions, thoughts and adrenaline of the night had wiped me out as i slept the day away and woke around 5pm to have a little christmas dance party with my nurse Charlotte who i had promised a chirstmas party before she left work on christmas eve. I felt much better after my dancing with her. I'd also realised I had gotten this massive sense of hope. I was loosing my faith in that call coming so to receive a false alarm give me so much happiness that i was on the radar, i did have a match out there and it could happen! 

Another one of my nurses Nia had been Charlotte's secret santa that year and had asked my dad to dress up as father christmas and give Charlotte her secret santa present before she left on christmas eve. My dad, chelsey arrived back down that evening and we were going to have a pre christmas party but first he had a duty to fulfill. He hid in the bathroom till i got charlotte to come into my room and when she did, he burst through the door with the present and gave it to her. Her face was a picture.. no literally, i got a photo and it's amazing. I shall insert here:

We had an early night and we woke up bright and early on Christmas morning! 

I was a sleepy girl christmas morning but my dad had slept over and I woke to Father Christmas in my room with a big bag full of presents all for me ....

All the nurse who were working Christmas came in to wish us all a Kerry christmas and it was just such a lovely morning! Visitors were scheduled to pop in throughout the day so I was never alone. My dad stayed with Chelsey all morning and my cousins Christian, Lyndsey and Auntie Maxine came just before lunch time too.

My mum and Andy came christmas afternoon and they also brought me a home cooked Christmas dinner courtesy of my granma! 

After Christmas dinner, I had a little bit of time just me and shaun. Soon after it was time for a christmas party as my cousins, ella, jojo, samantha & kristian came with my auntie and uncles.. auntie sharon, uncle neil, auntie shirl and kimjiwoowoo!

once everyone had left, me and shaun had a sleepover in my hospital room! I was so tired after one of my best christmas's!

I can't express how thankful I am to everyone who made a crappy situation into the best. I am such an incredibly lucky person. My family and the staff at manchester adults cystic fibrosis centre are the only thing that kept me from going crazy in the little room over the festive period and the whole of the whirlwind admission! 

It was time to put some work in now.. I needed to keep fit and strong so I could spend another christmas with this crazy but amazing family i have! This would not be my last christmas, certainly not!

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