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!
