4 pics of me, the one where I am lay down was the day after surgery as is the one where I am sat up....
The other 2 are from during week 3 of being in Papworth.
The scars have healed amazingly and the surgeon is an absolute genius with a needle and thread!!
I got out of Nottingham on Thursday the 18th of June, and i was over the moon, i didnt feel great but i couldnt wait to spend the weekend away with Em after not seeing her properly for what felt like forever due to me being in Notts and her working, i got out around 1pm and it was time to start our weekend of freedom with myself booked back into Nottingham for sunday afternoon because we knew i'd need ivs again after three nights off them. Thats how unwell i'd become. We arrived at the caravan around 4pm, we went to tesco and got some goodies for the weekend. We got back to the caravan and didnt go out because we had another two nights to do that. So we settled in with the telly on and relaxed until around 1am then we went to bed.
I was awoken on Friday the 19th of June to the ringing of my phone, I got the call at 5.55am, I answered the phone without taking off my NIV as it was just a mobile number and I had been told it would either be a mobile number or a private number that called me if it was a call for lungs. I said hello and was greeted with the words 'hi is that callum? It's ??????? Calling from Papworth, 'we MAY have some lungs for you' I was shaking and ripped my NIV off and said are you being serious? I couldn't believe it. I lent over and woke Em, she was in total shock and started crying telling me she wasn't ready for it to happen, that's about as much as I remember from the initial call and as you can see I don't even remember the transplant Co ordinators name which I feel pretty bad about!
I jumped out of bed because they said the ambulance car was on its way and proceeded to throw on my new nike shorts that have a matching jacket with trainers to match like I was going to a place where my appearance was going to be judged! It's such a crazy time and a lot of it thinking back, I think why did we do that when I'd had the call for lungs! We tidied up the caravan as much as we could and Em even had a shower washed dried and straightened her hair and had chance to put makeup on!! We waited for the car to arrive and he took what felt like an absolute eternity. While waiting I called my mom dad brother and nan to let them all know I'd had the call and obviously so my mom and dad could start to make their way to Papworth as they lived closer than we were so wanted them there for when me and Em arrived. I also had a call from the ambulance dispatch centre to say the car had come from Walsall amd would arrive with me by about 7.30am. The ambulance car finally arrived roughly about 7.30am and we was on our way. Blue lights and siren all the way,120mph around country lanes then speeds over that on the A roads made for a hair raising journey and at points it felt like me and Em were going to become donors rather than me receive the transplant I'd been hoping and waiting for!
We arrived at Papworth in less than an hour and a half, a journey which should take more than 2 hours! When we arrived at Papworth I was taken straight to Mallard ward and checked in. I was told that they didn't think they would have time for me to have a shower to be ready for theatre so I was washed with alcohol wipes across my Chest and made to shave my chest completely and both my groins incase I needed to be put on the bypass machine if my one lung and heart weren't strong enough to keep me alive during the operation.
After I had done this what we shall call a very long wait ensued!! I sat there and sat there and sat there, David the transplant Co ordinator kept coming back to see us but each time he returned there was still no news on the lungs as they hadn't been retrieved yet from the donor, as the wait got longer I asked if the extensive wait would have any negative effect on the usability of the lungs and thankfully David told us that the organs were being kept at their premium quality and had been improving results wise all day, the sats and blood gas results had gotten better and better through out the day while the organs were waiting to be removed from the donor body.
Around 4pm David came back and told me that he had received news from the donor hospital that the lungs were being removed and the next time he came back it would either be to take me to theatre or tell me that the lungs were no good so it was a very tentative time waiting for him. We was all sat there hoping that he would come back with a wheelchair and tell me to get into it and be wheeled away! We sat and waited a bit longer and everytime someone walked past the bay my heart went into my mouth, we was told that if my transplant op was going ahead then a lady in a side room wasn't having her planned surgery, when my dad went to the toilet her overheard a conversation saying that the lady was being sent home and having her op rearranged but I didn't believe him when he told me as he's a proper wind up merchant, and I was waiting for David before I got excited,nervous and I'll admit it scared. After about an hour from when he last seen me which was around 5pm David came walking into the bay with a wheelchair and I was told to quickly use the toilet, put a gown on and get my boxers off because it was all good to go and they wanted me into theatre asap to start extracting my lungs! He gave me 300mg of a drug called Itraconozole then
I was wheeled to theatre and I gave mom and dad a kiss and gave Em a cuddle and kissed her, but with that I had to turn my head away because I started to fill up with tears. All that was going through my head when I kissed Em was what if this is the last time I see her, what if that goodbye wasn't enough, but as David wheeled me through the doors where only staff and theatre patients can go at bang on 5.15pm, I thought to myself it was just a see you later not a goodbye.
Once I'd wiped my eyes I began to chat to David but I couldnt tell you what we spoke about! I was then taken into the aneathatist room and I got onto the table and they commenced with sticking defibrillator pads onto my body and ecg wires and sats probes and a cannula was inserted for sedation, once the nice Australian guy put the cannula in I don't really remember much and for the next 2/3 days I have relied upon Emily and My parents for all details.
I was in theatre until around 3.30/4am of the morning of the 20th of June, and Em was the first person to see me after the op at about 5.30 in the morning. After she seen me and spoke to me while I slept my parents came in. I slept through them being in the room too, they were told by the staff they was going to try and wake me around 9am to see how I was. The clock rolled around to 10.30am and I still hadn't been woken up, but I'd had a bronchoscopy and the doctors had been around to see me. They were over the moon with how surgery had gone and there were no complications, They hoped I could be taken off the ventilator that day once I was awake and I was showing I was strong enough to breathe on my own.
Once I'd woken up a bit I was still in and out of sleep but I can remember asking for the vent to be taken out by using hand signs, and I can also remember telling Joe saying that if I woke up more then it could come out, and my dad saying hear that cal, with that I threw my eyes open as widely as possible but still being so tired they closed pretty rapidly! I was signalling with my hands I had some phlegm in my throat and I was trying to clear it but as I still had the vent down Joe had to use suction to clear my throat twice but he could see I was trying to do it myself against the ventilator, After about an hour and a half I was finally allowed to have the ventilator out and it was heaven, I can remember being able to take a breath that was bigger than any breath I have been able to take in a long time, however the pain from being cut open and my chest drains was agonising. As Saturday went oeverything began to deteriorate, i began to go into lung failure, so obviously the doctors were on scene immediately to discuss and attempt to solve the reasons behind me going into lung failure, two doctors had conflicting ideas on why this had happened and my dad said they had had a 'professional' debate, which he later explained was a full on argument as to which course of action to take, one doctor wanted to re ventilate me because they believed the reason for the problems was my breathing, the other wanted to give me an epidural ,he believed all my vitals were being sent off because of pain. Luckily the second doctor won the argument and I received and epidural which settled my pains dramatically after trying several different pain killers including ketamin which I had great pleasure telling Em and dad I was about to have when they came into the critical care room. To say industrial strength horse tranquiliser did nothing may begin to explain the pain I was in! Once the epidural went in the pain subsided a bit, thank god the doctor who thought the lung failure was caused by pain was correct and won the argument.
After getting the epidural I was able to start Sunday the 21st in a little less pain, I saw the physio who wanted to get me out of bed and sat in the chair in the room so my new lungs could be stretched out and I could begin to take larger breaths and start to use the muscles I hadn't used for many months, possibly years due to how poor my old lungs had become.
The physio was sorting out my chest drains and catheter bag with the nurse when I swung my legs over the edge of the bed and before they could say ready I had stood up. To say the nurse and physio screamed when I stood up would be an understatement. But I looked at them both with massive confusion and said isn't that what you wanted me to do? And they laughed and told me they just wasn't used to people getting up without warning, and with that I shuffled to the chair and sat out the bed for about 30 mins while they made my bed and freshened me up. Later on in the day I was given gas and air so that I wasn't in pain while they took out two of my four chest drains, after several large breaths on the gas and air my new lungs took plenty of it in, and to say I was floating would explain the lovely feeling of gas and air, however, I still felt the drains come out and it wasn't the most pleasant feeling. The only thing that made it better was the fact my one drain hole began to make a very amusing noise when you're high, my chest drain hole made the longest farting noise I've ever heard!
Monday went by without much change, apart from my blood gas results, I had a cannula in my right wrist that was into my arterial vein so they could monitor my carbon dioxide levels in my blood to make sure the new lungs were behaving and doing the job the was supposed to be doing of dispelling the waste product from my lungs and take in enough oxygen to keep my organs alive and my blood oxygen levels at the right level. I was having blood gases taken every half hour but thank god the cannula worked well until late on the night when it had to be redressed and repositioned as it decided it no longer wanted to give blood.
Tuesday 23rd started pretty relaxed and there had been faint whispers on Monday that if my blood gases stayed stable through the night that I would be allowed out of CCU and onto Mallard ward for the rest of my recovery after transplant. The news finally came through that I was allowed to move to the ward and in came the physio with a big smile, her thought was that we should see if I could walk as far as I could with a wheelchair behind me for if I needed a break at any point, I got out of the bed and said to myself this is going to be hard, but I'm going to make it to the bed on the ward. I was very light on my feet and still in quite a lot pain but I was determined to do it. I walked out of the room, and out of CCU mom dad and Em were sat outside the ward and I could see the look of pride on their faces and mom and Em filled up with tears. They said while they had been waiting everyone that had moved from CCU to Mallard had been pushed in a wheelchair, that made me even more determined to make it to the room. I carried on at a slow pace but I knew I could make it, it felt like I was walking a marathon in distance to the room. I got to the room and sat on the edge of the bed and was over the moon with my achievement but was absolutely exhausted! I don't remember much more from that day, apart from the Sahara desert heat in the room and the stench of the food as I was opposite the kitchen.
Wednesday and Thursday passed without much change lung wise, but I did have a few set backs, from MRSA, to C Diff, to a positive swab for bacteria by my bum! These few things as well as a chest infection made my stay on IVs last 6 weeks in total! 3 weeks in Papworth then 3 weeks at home once I got home. I had my 3rd chest drain out one of these days but I can't really remember which day as I was floating in and out of sleep an awful lot, I was having oral morphine and tramadol on top of the epidural so I wasn't that with it. As I was sleeping a lot and my appetite was awful I was told off by both consultants and my surgeon,as well as mom dad and Em, I was trying my hardest but felt that tired I wasn't hungry and had no energy, but I was read the riot act by Em and the folks and it gave me the kick up the arse I needed.
Friday, Saturday and Sunday marked a week post tx, the 4th and final chest drain came out and my breathing was getting stronger and stronger each day and I was feeling well within myself but struggling for the heat in the room! I was on a morphine pump after my epidural was taken out as my pain got an awful lot worse, i was able to have morphine 12 times an hour, when the nurse checled the pump i had pressed the button over 40 times in an hour so they became well aware just how much pain i was in, so they upped my morphine dose, checked again an hour or so later and over 3 hours i had pressed the pump in excess of 300 times when i was only able to have 36 doses! It become clear very quickly that i needed a different form of pain relief so i was switched onto oral morphine ad regularly as i needed it and tramadol. This significantly helped the pains! I was moved from the sweat box of a room to a lovely room with a view of the grounds with two big windows that opened slightly more than the other room. My dad had to come home to get things sorted an thankfully he bought back my Dyson Fan (which was fund raised for by Popas Bar Anderby Creek) bringing the fan helped massively as it was the hottest week of the year!!
After few more days Jaz the consultant said I needed to walk more, so I began walking around the ward with my parents or Em between walks with the physio, I even managed a walk down to the duck pond to feed them and sit outside for 15 minutes. I'd mastered the walking so my dad made me do it several times one day in the hope it'd aid my road to recovery but the day after I was in a mess and my legs were killing and I was so tired I couldn't go for a walk. Once I got moving the next day there was no stopping me, and I was walking as much as possible.
The time that follows until I got out all rolled into one day so I will just fill you all in with things that happened.....
My weight had dropped pretty dramatically because my appetite was still awful so I was put onto my night feed, I was given 2000kcals in 1 litre of milk overnight, but because I started my night feeding I needed to start insulin because my blood sugars began to become erratic. The weight was still dropping even on the feed so we decided to up my intake to 1.5liters per night which meant I was getting 3000kcals a night! Eventually I began to start gaining weight but my appetite was still poor.
I had two bronchoscopies while I was in Papworth and aware of what was going on, both of them showed that the joins within my lungs were healing but also showed I had an awful lot of mucus still down there. Hence the stay on IVs. I personally felt well enough to leave after around two weeks but scars still wasn't healed on the outside and I was told the minimum stay was 21 days.
My second bronchoscopy was done a few days before I was due to go home and it was decided that I needed more ivs, this was gutting but I accepted I needed them for the best start for the lungs, the only thing that didn't go down very well with me was the fact I was told I had to stay an extra night because I couldn't go home on one of my iv antibiotics because they couldn't give me a pump to leave with, so I had my drug changed which meant they needed to do a blood test to make sure they dosing was correct so I had to stay an extra night and I let the junior doctor and reg just how unhappy I was. I let them know in such a way I got a massive telling off from Emily after they left and I felt that bad I apologised the next day after ward round.
I took several trips to the duck pond over the 2nd and 3rd week and I had visits from my best pal Connor twice, a family friend who plays in a tribute band to The Jam (a band who I love) came on his scooter from north of Birmingham all the way to Papworth, my Nan and my Uncle came too on another day and my mate Rich and his GF came on another day. It was great to have visitors to break the day up but it was also very very tiring having visitors.
I'd like to thank my Mom Dad and Emily for everything you did for me while I was in Papworth, you took some shit off me because I was 100% emotionless for the time I was in there. I was snappy and I was horrible, I cannot apologise enough for being an idiot over the time in there, and I cannot thank the three people I can always rely on in life enough! I love you all more than you'll know.
I'm lay here doing my best to remember other things that happened, however my parents are away watching Tom Jones and Em is in Kuwait with work so I have nobody to confer with.
My final note on this blog is to say anything else I remember or get told I will put into another blog. And I'd like to say a massive thank you from the bottom of my heart to my donors family for honouring his wishes and allowing his lungs to go to someone in need. You have saved my life, and given me the chance to live the life I have dreamed of having with Emily. Your selfless act is amazingly kind and you will forever be in my thoughts, Emilys thoughts, my families thoughts. THANK YOU!
The next blog will be an update of what I've done since being out of Papworth :) I'm sorry this blog took so long to publish!!
