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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