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!!
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.
--------
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.
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!"
0 comments:
Post a Comment