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!