Thursday, 31 December 2015

My thanks for 2015

Well, as 2015 draws to a close, I can honestly say I am truly blessed to have been able to make it to my 25th birthday and also Christmas. None of this would of been possible if it wasn't for my donor and his donors family, and all the hard work that Papworth hospital have done! I want to take this chance to thank everyone who has made it possible.

To all the staff at Nottingham University Hospital Wolfson CF Centre that were there through the worst times I can ever remember health wise, you kept me sane and we're the catalyst in me getting my lungs. You didn't stand by and watch me deteriorate anymore unlike others, you actively forced me through and onto the transplant list and saved my lives so to Dr Dewar and Dr Clayton and your simply amazing team THANK YOU!

To Jas and Debs, and all the team at Papworth thank you for giving me the chance to go into the waiting list and believing in me to change my compliance issues around, thank you for allowing me to see another birthday and Christmas and hopefully countless more, and giving me the opportunity to try for a family, get married (eventually) and live a long and prosperous life!

To my donor and you're family, I cannot put into words just how much you have changed mine and my families lives. You have sadly lost your life at such a young age, and now it is my duty unto you to do the things in life you were destined to do, I am not going to sit back and waste the extra time you have given me! I am planning my future with Emily, and we plan to have children, get married and travel as much as possible, all while working hard and hopefully running our own house! 2016 is a year that I would not have seen if it wasn't for you or your family and now it is my chance to excel and kickstart a career that I've wanted to do for over 5 years! Thank you so so much for what you have done for me. You're families selflessness is beyond words and now I will live my life not only for myself and my family, but for you and yours! Thank you to the stranger I never met who saved my life.

2015 has been a massive year for organ donation and Cystic Fibrosis and both have gained way more media attention this year than any other year in my life i can remember. I hope that 2016 builds upon the attention and we eventually see the opt in system changed to opt out and many more transplant operations going ahead! I know many people who have passed away this year waiting for a transplant, I also know countless that have been as lucky as me and received a transplant, but unfortunately not all of them have had the success I have so far had, and they also are no longer with us. I also know way too many people struggling at home and in hospital awaiting double lung transplants! I sincerely hope 2016 brings the gift of life to as many of you as possible and you all come out the other side and do as well if not better than I have done!

I'd like to thank you all for reading my blog and following my journey this year and I'd also like to say that although I haven't updated much since transplant I will be looking into doing a catch up blog in the new year, it will involve details on my new job and also a challenge I have set myself to complete in 2016.

I wish you ALL a very happy, healthy and prosperous 2016 good luck to you all and I hope your wishes and dreams come true!

Thursday, 17 September 2015

Mental journey through transplant

This is a hard topic to get down onto paper to help others as we are all so different when it comes to dealing with everyday things in everyday life, never mind having to come to terms with the possibility of dying depending on your own actions and choices. My experiences and will be completely different to anyone else's who has had a transplant of any type, it'll be a similar story, and on the whole a similar recovery but the only unique part is each recipients mental progress/thoughts and emotions before and after the transplant.

I'd like to think of myself as a very positive person, but before I went to Papworth for my initial meeting I struggled to sleep the night before and was worried sick that they would say I wasn't unwell enough to be considered, I was scared that if I wasn't unwell enough with less than 17% lung function with no quality of life, how unwell did I have to become. That was my first emotion I felt towards transplant other than hope!

As you can imagine I went through a roller coaster of emotions from the minute transplant was mentioned. The first emotion I experienced if I'm honest was relief, I was over the moon the consultants at Nottingham Wolfson CF Centre agreed with me that we had tried everything, and nothing was improving my lung function or even sustaining my health at the poor level it had reached. I was completely relieved that I was going to have a safety net put under me, a safety net that would possibly be the saviour of my life one day.

From the time between transplant being mentioned and my initial assessment I was anxious and asked on a daily basis how long it'd take to get the paperwork sent off to Papworth and how soon they'd see me, I was excited at the thought of having new lungs and being able to live a normal life, I was at no point worried about not coming out the other side or anything going wrong, this was my one and only chance now nothing else worked, so in my head it was going to happen and it was going to go well and work!

After being listed the first week my head was all over the place, I didn't know what to do with myself, I was in hospital and bored but also feeling really unwell so most the time was taken up watching my phone and having a mini heart attack every single time it vibrated or the lights came on wishing it was my call, it probably took a little over a week before that stopped, but the entire first week I said to everyone I wouldn't wait long, I was convinced I'd have my transplant within 6-8 weeks at the most and I'd had that feeling all my life. The first week I was all over the place mentally not knowing if I'd done the right thing or if I was ready, then I'd think to myself are you stupid, without these new lungs you'll be dead and your not ready to die yet! For me the help mentally was sought by talking to ANYONE on the ward while I was an inpatient throughout my time on the list, I'd ask anything at all that came to mind, be it a really serious deep question, or a trivial silly question that I just wondered about there and then. As it transpires no question is a silly question as you'll ponder about the answer forever if you don't ask.

After the first week of being on the list some family members were still telling me it isn't a quick fix to a long term problem, and asking did I realise the magnitude of what I had signed to go through and if I'm honest, I have never sat and thought of the transplant as major surgery, or even considered that I've been through a massive trauma. I still have complete numbness across my upper body along the chest area, but that's normal so I don't mind now.

As you all know I was on the list for 29 days in total and I would say I had negative thoughts and doubted I'd ever get a transplant for less than 24 hours in that whole time. I was certain I would get my call and certain it would go well. I have the benefits of being tall and having a big frame on my side as well as other medical results that made my chance of a match pretty good. I would wake up and be gutted I hadn't got the call in the night as that's the most common time to receive your call, but I'd get on with the day as best I could with the limited energy and health I had. I was positive and excited that I'd get my new lungs, not much entered my head prior to the op that was bad.

I often lay in bed at night and moaned that I hadn't had my call yet, but then I got bought back down to earth by Emily when she said you've been on the list for 10/12/15 days, it'll come just keep doing what you have to and you'll get the call. I would be lay there saying I would give anything or I'd trade a bad recovery for the lungs this week or oh I hope I get the call tonight, but obviously the call didn't come on those occasions.

Once the call came, I didn't have a chance to feel any emotion until I got to Papworth other than hoping the lungs would be a match and the op could go ahead, as the day went on and the wait got longer I began to start to convince myself at times that I wasn't going to get the yes on this occasion but then I'd convince myself five minutes later that they'd be starting the operation in the next 15 minutes, I was a strange day for emotion, but my overpowering feeling for the day was boredom!

After the transplant my emotions appeared to disappear for around 2 weeks, other than amazement at how I could breathe and how thankful and grateful I was to my donor and their family I felt no emotion at all, I even said on several occasions I don't feel up but I don't feel down, I felt flat, like I didn't feel like I could be happy as that was disrespectful to my donor, but I also couldnt be unhappy as I'd been given the chance to restart my life and do all the things I've ever wanted to do! It was a very very strange couple of weeks. Once my emotions started to return I was overjoyed at my own progress, and how quickly I had recovered for the operation. However, on the days I struggled I questioned if I had made the right decision but of course I had, even though when the pain was unbearable and I couldn't sleep or get comfortable or didn't want to eat looking back of course it was worth it and I hate myself for feeling like that. I feel extremely ungrateful for feeling like that, but of course I am grateful and over the moon with the gift of life!

I couldn't believe how short a time I spent on the list, but deep down I knew it wasn't going to be long. I was asked by several people including close friends and family if it was bravado or I genuinely thought like that and hand on heart I felt like it, I had the same conversation with many people and now I've got the lungs I can say I genuinely believed I wouldn't wait long.

I don't think this blog will really help many people because we are all so different, wether you are a naturally positive or negative person our time on the list will be filled with different highs and lows, you may recieve false alarms i was extremely fortunate not to, but that will evoke many different emotions as well. However I hope it's an insight into what I went through, and I hope it helps you guys understand my journey a little more. If it helps one person during their time on the list though then the blog will be worthwhile!

Wednesday, 9 September 2015

It started with the flu, it could of ended so much worse!

So where do I start......

I caught the flu around 2 and a half weeks ago which required some anti viral medication from Papworth, the tables I was given were a 10 day course in the hope it would stop the flu getting any worse and luckily that happened. However, after the flu went away, I was left with a slight wheeze.

As the days passed by, the wheeze gradually became more of an issue, so I called Papworth to ask their advice, they were happy with my numbers  (temperature, weight, blood sugars and lung function) the 4 things I have to record daily along with all the meds I take and the times taken, because all the data was ok the hospital wasn't worried and said to keep my appointment for September the 10th but if I deteriorated before then not to hesitate and call them back.

A few days passed and the wheeze was getting worse and I was beginning to become breathless when walking, so once again I called Papworth but yet again all my numbers were still ok and I was informed I'd receive a call back if the consultant was worried or wanted to change any medication. I wasn't called back so I wasn't overly worried with the symptoms I was showing.

Friday 4th of September morning came and I woke up wheezing so badly I sounded like an air raid shelter siren. I called Papworth again and was advised things were ok because my numbers were still behaving. As the weekend passed by I called Papworth again Sunday morning and was told to call later if symptoms got worse if not call Monday morning to speak to the team and they would advise on what to do, this finally gave me a little relief and I was trying to get through the day without losing my breath or struggling with the wheeze. I wasn't managing well, but still decided to go and watch the Solihull Barons play ice hockey against Telford in Solihull ice rink just down the road from where I live. I got to the rink and really struggled to walk around the ice pad to where I usually sit with my group of mates and when I sat down I was struggling so badly I felt like I had my old lungs back and was struggling to get my breath back. This happened three more times while at the rink and when the game ended I called Papworth immediately and was advised by the doctor on call to attend A&E to have a chest xray to rule out any possible collapse, pneumonia or infection within the lungs and have a nebuliser to attempt to relax my lungs.

I got to A&E with Emily and I was taken straight through to majors and seen straight away. I was sent for an xray and thankfully it showed that all looked well within my lungs. I was given a neb and I seen the doctor, he took a full blood count and proceeded to prescribe me with IV antibiotics and tell me I needed to be admitted, this came as quite a big shock to me as I thought I'd go there, have a couple of nebs and be sent on my way with extra nebs to get me through until Thursday the 10th.

This wasn't exactly what happened and I was moved to AMU, from AMU I was told I was going to be transferred to a ward and spend the night in heartlands hospital..... that's another story for another blog once that's all sorted out.

I got out of heartlands at 6am Monday morning after arriving around 10pm and went home to have 2 hours sleep before waking Emily up wheezing so loudly. I got up and called Papworth as soon as I knew there would be someone in clinic and was told to get here asap and been seen by Jas (transplant consultant) to be checked over and possibly have my bronchoscopy bought forward from Thursday.

When I got to Papworth I was told there was a bed waiting for me on Baron ward, so me and Emily made our way up to the ward and waited to be seen by Jas and to be told what the plan was. When Jas came up to see me I explained all my symptoms and told him what had happened. He got me to display my wheeze to him and straight away he said he had an idea what it was that was causing the wheeze. He told me that he suspected I had a possible narrowing with my airway and he would go and look at previous pictures taken from my other bronchoscopies and see where it could be so he knew where to look the following day.

He went away and told me that he would have me down for my bronch Tuesday afternoon and we could get the wheeze sorted out. Jas popped back later that day and told me he believed the narrowing was in the left lung and he could sort the problem with the bronchoscopy, so I was hopeful the wheeze would be gone and I'd be on my way home either Tuesday night or Wednesday morning.

Tuesday soon came and I was nil by mouth from 10 am so I could have the procedure done without any additional complications. I waited from 10 am until 2pm as this was the earliest I could go down for my bronchoscopy, I was eventually taken down to have it done around 3.30, and that's where it all began.

I got to the room like normal and proceeded to get onto the table and be set up to have my bronchoscopy. I confirmed my date of birth, who I was etc and they began setting to work on numbing my throat and then ultimately sedating me. Once I'd fallen asleep they were all ready to start my procedure when my oxygen levels started to drop at quite a rapid speed, when they hit 58% (anything below 95 isn't great for new healthy lungs, anything below 90% is dangerous for anyone) the call was put out for the crash team to rush to the room I was having my bronchoscopy, by the time the team reached the room I was in respiratory arrest, and my oxygen levels had hit the lows of 45% amd I'd stopped breathing. Thankfully the crash team bought me around and I was woken up to make sure I was ok and to keep making sure everything was ok, at the time I had absolutely no idea what had happened or what was going on, i remember small bursts and flashes but mainly i remember being extremely confused, i rember asking if Emily had been called to inform her something wasnt right even though i didnt realise something wasnt right. I was rushed from the bronchoscopy room around the hospital via ambulance to the Critical Care Unit. Once there I was given general anaesthetic and an emergency bronchoscopy was performed and the narrowing of my airways was confirmed, the airway which should be the size of roughly a 10p in diameter had narrowed to a pin prick in size.

They quickly froze my excess tissue that was built up and grown within the airway to kill it and remove it and a balloon was inflated to dilate the narrowed airway. After Jas had done this he took out the bronchoscopy scope and allowed me to recover in CCU over night. Once this was all done Emily and my parents arrived and I saw them in the CCU however I hardly remember it and I don't remember the conversations I had with them.

I woke up on Tuesday evening and got my phone to contact Emily and my mom to find out actually what had happened to me to make me end up in CCU! Mom and Em both explained to me what had happened and I was in a little shock myself. Of course everyone at home was really shocked and shaken up. I didn't manage to get a wink of sleep in CCU but this was simply because I wasn't tired so I sat up all night chatting to the nurses while they worked away all night doing the best job with each patient they had to look after on a 1-1 basis! The staff in Papworth CCU are second to none, it is the second time I've been in there and both for major things, and I have felt safe from the second I've been compusmentus both times! Excellently trained staff who know their job isn't just to nurse but also care! I cannot fault a single thing they do!

After spending the night on the CCU I was moved back to Baron ward as I no longer needed 1-1 care and was off oxygen and breathing well with little wheeze. I saw Jas and he showed me the pictures and explained that I needed another bronchoscopy tomorrow (Thursday) and that he wasn't 100% sure what would need to be done, he said he would like to freeze some more of the excess tissue which will remove it from the airway, but he doesn't know what it will be like until he goes back in, he said he may have to fit a stent, but that then comes with a list all of its own of complications after its fitted, or he will redilate the airway and see what it's doing and make his decision once he has eyes on the affected area of my airways! I myself won't know the results or what he has had to do until I wake up later Thursday afternoon when I receive my results and a summary of what's happened during the procedure.

Tomorrow is going to be a very anxious day for me as I don't exactly know what's going to happen once Jas is inside the lungs, and it's going to be an anxious wait to go to the room as I is the first time of being sedated after almost dying!  I know I'll get through it and whatever happens ill have the support of my family and my best mates and of course everyone reading my blog!

I will overcome whatever I need to to live the life I want with Emily! I cannot thank my donor and their family enough for this second chance in life, and I will do everything possible to live the life I deserve!

Saturday, 15 August 2015

Post op pics

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!!

The long awaited update

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!!

Tuesday, 16 June 2015


All my teenage life I thought I was invincible, I thought nothing would stop me. I didn't listen and I didn't care. I would get unwell and my lung function would drop, but I would come back out of hospital after IVs better than ever and I thought I was unstoppable.

I didn't need to listen to the doctors, I didn't need to listen to any of the other patients because I wasn't them it wasn't going to happen to me I was invincible. I was told by the consultants, the nurses, the psychologist, the dietician, my parents, my brother, my grandparents, friends of the family, my friends, other CF patients that were older than me, but I didn't need to listen or pay any attention to that I am Callum, and I was invincible.

Well turns out I'm not, turns out everyone was right. They wasn't just saying it because they had nothing better to be doing with their time. They wasn't saying it so that it improved their health or the length of their lives, turns out they were all doing it because they all cared about me. All them people telling me the same thing but I knew better!

Fast forward to 2015, I'm now 24 and im giving the same lectures I had to younger patients and praying they listen but knowing deep down they won't pay an ounce of attention until that life changing event happens and they almost lose their life like I did! Nobody is invincible when it comes to CF, we all fight against it, but ultimately it will always have an upper hand on our body and the only tool in our armour we have is to do the treatment we are prescribed and keep our lung function as high as possible for as long as possible, but when your lung function is high, treatment isn't high on the list of priorities because 'you can afford to lose a bit' well in reality you can't!

I look back at life and often wonder would I do it any different if I had my time again, and I'd love to say I would, but hand on heart I provably wouldn't. So what gives me the right to tell others what to do? I don't suppose I do have a right, however I just want the best for everyone else, like everyone wanted the best for me!

So if your reading this and your not very compliant with treatment, you miss your tablets, or nebs and think to yourself it'll be ok, I can hand on heart tell you, you won't!
Do you want to be on oxygen 24/7?
Do you want your bedroom being bought downstairs as you can no longer climb stairs?
Do you want to have to be washed by family members at 24 because you haven't got the physical energy to do it yourself?
Do you want to spend like I have recently and will be until I get my call for lungs around 80% of your life in hospital?
Or ultimately do you want to be waiting for a call for a chance of a second shot at life aged 24 when you can live a lot longer with your own lungs?

If the answer to any of those questions was no then I plead with you please try and up the amount of treatment you do as something is better than nothing and everything is better than something!

Tuesday, 9 June 2015

Creeping up to 3 weeks

I've been on the active list now for almost 3 weeks, and boy has it been filled with ups and downs.

The day I was listed it felt like a massive weight had been lifted off my shoulders and I felt massively relieved that I was finally active and that call could come at any moment. I was over the moon with the speed at which I had become active on the list as well so all in all I was pretty happy with the outcome.

Unfortunately that happiness was short lived, and within a day or two my happiness and positivity had sunk to rock bottom and I was feeling proper crap! I'd gone from having deadline dates to have everything sorted for to 'wait for a call' a call that could come anytime, it could be in an hour, a day, a month or a year, we have no idea at all when it'll come and to me that's the hardest part to deal with. I am a really impatient person, so to not have a date or goal to aim for is so so hard.

We all know what it's like waiting for a delivery when they give you a window of 8am-8pm and you rage because you want to do things with that day and you joke that as soon as you go the toilet the door bell will go, well imagine being told, you'll get your call, it'll be between now and the day you die..... its a little frustrating to say the least!

After the first week of feeling down in the dumps and fed up with things,I gave myself a kick up the arse and my mood has gradually picked up with regards to waiting for my call.

However making things worse/harder has been the fact that I've been in hospital for what feels like forever,I had been in a week before I was listed and ended up doing a 3 week stay on IVs to no real change in my chest or breathlessness, so I struck a bargain with the team that if they let me leave for 6 days so I could spend time with Emily during her days off work I would return for another 10 day stay for IVs when she flew back off to work and they were happy with that. So I'm now back in after my 6 day stay at home which was amazing! The best 5 days I've spent with Em for a while and it was long overdue! But I'm back in NUH now for 10 days then I'm escaping again so I can spend the weekend away with Em before she jets off again with work!

My consultant has written to the consultant at Papworth to let them know the changes in my health and to let them know I am deteriorating slightly at the moment just so that Papworth are fully upto date with my situation which is good. I call them every other week and let them know how I am and the hospital call them with every blood test result I have to keep them updated with that.

I haven't got the energy or breath in my lungs to wash myself at the moment and I am relying on Emily more and more each day, I'm 24 and I am like an 84 year old with my mobility and health! I struggle to walk 5 metres to the toilet and I have to sit down when I get there to get my breath back, life is getting pretty difficult for me at the moment, I know it may not be permanent but for now it's really draining emotionally and physically. Having to psych myself up to go for a wee isn't something I ever thought I'd have to do at the ripe old age of 24! Life is definately a lot different to how I imagined it but with the power of science and the beautiful NHS I will get my life back and live the dreams I have with Emily and live a long happy and healthy life!

If anyone is interested in signing up to the donor register follow this link and it's literally 2 minutes and you could save several lives!!