The doors to the ambulance opened, I stepped outside and as I took a breath the cold air engulfed my tiny crippled lungs. The journey had been long, I had been tired and the ambulance man had been irritating. The fresh air gave me the waking call I needed as I'd been laying down for most the journey, battling the warmth and keeping calm the thoughts in my head. No distinct thoughts, just focusing on trying to sleep and occasionally sending a text here and there to inform those close to me where I was and where I was going.
My brother and father arrived at the hospital the same time as Elaine and I, this despite the fact we were in the ambulance and had the blue light flashing. It was only at the entrance to the Freeman hospital that we passed them, so you could suggest I could have had an easier, comfier and less annoying ride had I gone with my brother and father. However, my brother and father are quite annoying, so it's six and two three's. Also, from what I gathered my father slept all the way down and he has quite a snore, so it wouldn't have been too relaxing either. Yes, I've mentioned my father's snore as annoying in the past two blogs, that's how annoying it is! Anyway, the doors had opened to the ambulance and I was told by the ambulance man I was to go to ward 30. Prior to this visit I had been to Newcastle twice for assessments and so I knew where I was going and so I made a bee line for the ward, everyone followed on. My focus was just to get to the ward and get on with the transplant and find out what the news was with the lungs.
So up to ward 30 we went and to the nurses desk.
'Hi, I'm Anders Gibson, I'm here for a lung transplant'.
'Oh . . . yes, here is your name, you're in room XX'.
So along to the room we went, Elaine, brother and father. Various people came in to see me, an auxiliary nurse, a staff nurse, a phlebotomists, a junior doctor and a senior doctor, but no Consultant.. I can't remember the order in which they all appeared. I required a few tests, an ECG, a X-ray and some bloods. We had most dealings with the auxiliary nurse, taking my blood pressure, temperature and oxygen saturation. He was a very nice guy, quite jovial and had decent chat with my family, which saved me from having to chat to them. As people came and went all I could feel was my the warmth on my face and the tiredness in my body. As part of the pre-transplant assessment I needed to go and have my tests. My brother joined me for my tests, wheeling me about the hospital taking me from ECG to X-ray.
Now, what with the impending transplant I think my brother had strategically decided to come and wheel me about, he didn't have to, a porter could have done it. A porter did join us for the first part of the journey, but then headed off and my brother took over. I think my brother saw this (and I could be wrong because I'm sure he's not that bright) to take the opportunity to talk to me about some of those things you don't want to talk about. No! Not parents having sex. All throughout the trip down, throughout the 9 months plus of waiting I've been determined I'll make it through transplant, there is no other option in my mind. However, the truth is I may not make it through, there is a chance things could go pear shaped, and when I was talking to him while waiting for my ECG, that unmentionable possibility that I don't like to utter was potentially hours away. I've never really discussed funeral possibilities with my family much, I feel it's like opening a door to something I would like to keep shut, it's like I've accepted doubt in the possibility of transplant rather than focusing on the positive. I guess I'm as guilty as those who don't talk about transplant with their family as they feel it will bring forward their death, almost welcome it. However, I should know, and I should be smarter than that. I bang on about people needing to sign-up, but maybe I haven't given my own mortality thought as much as I should, or at least I haven't been open about it. The truth is, and my brother discovered this, that a group of my friends do have an idea of what I want when I die (Which won't be for a long time! I'm hoping to make it to an age near to my parents current age of 65. My parents have reached a point where I think I will enclose Dignitas leaflets with their birthday and Christmas presents, just a subtle nudge of course) and they know what I want. I'll write my wishes now so if anyone forgets or is unsure then they can check on my blog. Yes, very personal thing to open up about, but something I think all CF people contemplate, more so than their contemporaries. Anyway, death is inevitable, so one day these wishes will have to be used, just not for a long, long time. Also, I imagine my funeral will be televised as it will be of National importance and so you'll get to see it all anyway and so why not give a sneak preview?
Ok, let's get this sorted, a few funeral details. Songs - Frightened Rabbit/Heads Roll Off, Crowded House/Together Alone and Flight of the Conchords/Angels. Give them all a listen. A strong New Zealand presence in my songs, that goes back to my Maori roots. Ok I don't have Maori roots, but still quite a Maori influence. Ok, as for ashes, I want them scattered in either the Glasgow Botanic Gardens or the River Kelvin that passes through the Botanic Gardens. Not a bin in the Botanics! My friend Elaine said she'll just stick them in a bin. Whilst convenient and quick, not exactly what I'm planning for. Oh . . . and finally I want a Quaker style funeral. I was brought up a Quaker, wouldn't say I was one now, but I do like their style. Also, as for organ donation, I will donate whatever I can to whoever needs it more than I do. Anyway, that's death chat over with, back to the story.
So my brother wheeled me about the hospital and confirmed he'd spoken to Elaine about my wishes, which to some degree saved me talking about them. After having a tour of the hospital via the ECG and X-ray rooms my brother and I returned to the ward and my room. My dad disappeared at some point as it seemed my mum was going to make it to Newcastle and he wanted to greet her at the train station. When I first got the call I didn't think she'd make it to the hospital in time, but she did! Hurrah for my mum! After sometime my father returned with my mum in tow. To be honest this is all a blur, my Dad may have disappeared during the tests, the main thing I can remember between 9am and 1pm is me lying on a bed, feeling warm and tired. I was so tired I was thinking 'give me a general anaesthetic so I can get some sleep'. Everyone in the room seemed to be chatting, whereas I was extremely quiet, I felt calm, as cool as a cucumber. I had no time for chat, just wanted to be quiet and focused. Also at this point it had become apparent to me that my call had been leaked on Facebook. It wasn't something I wanted leaked on Facebook, as unless there is something to report, why report it? Unless the operation was going ahead I didn't see any point in saying anything. Anyway, it was leaked and messages were piling in. Whilst I wasn't planning for the news to get out that I was in Newcastle, the messages and good will wishes were really appreciated.
I was trying to stay focused, taking each little step one at a time. The ambulance journey, checking in with the nurses, going for the tests, waiting to hear my blood results and waiting to hear the condition of the lungs. I guess you can't go into such an operation thinking of the bigger picture, you just have to face each small item and deal with it one by one. There was so much waiting, so little seemed to be happening, but yet it was hectic and intense at the same time, a strange dichotomy. The lungs had arrived the same time as me at the hospital and were put on the rig, they were lungs that needed a boost before being transplanted. If you check my previous blog post on ex-vivo lungs, well those were the lungs I was going to get. In the past the lungs I was going to receive would have been put in the bin, but not this time, they were going to be used for me. So they said they were waiting to see how the lungs were. The lungs spent a few hours on the rig trying to get them up to standard for transplant. In the meantime the junior doc had been in, I had asked what my CRP (C-reactive protein, a blood result that indicates inflammation and therefore infection) as I had a feeling I wasn't quite right. She replied '70', at which point I was a little confused, but too tired to compute what it really meant in my head. Then after a long time of waiting I was told 'you're going down within the hour, you need to get showered and gowned'.
This was the first point in the entire time I really though 'Ok, this is actually happening, I'm actually going through this. There is no turning back'. I had been given the standard NHS gown, one that would display my bottom to the world. I was in a room full of people who had seen my bottom, so I had no issue with that. I'm not one to get my bottom out, but at these times prudish thoughts disperse. I was also given hebi-scrub, a special medical cleaning detergent. So off to the shower I went, I left with focus and determination in my mind. I turned left as I left my room wandered around, but couldn't find a shower. Then after asking another nurse I found the shower room. Now this was the first time I had really been alone since the call came. I was all by myself in the shower, all alone and preparing for the biggest event of my life. The enormity of everything dawned on me. This is it, no more chances, no opportunity to step away. 8 years ago I gave up work to focus on my health, to give myself the best chance of transplant. I had focused on my health and worked so hard to keep myself going and now it was all coming to a point, this transplant is what I had been working for. While I was nervous, while it seemed like a huge leap to take, it was one I had to take, it's one I've wanted for so long. While it could be the end, it was potentially the beginning of something great. I know I was about to hit a huge bump in the road in my life, and for the next wee while there were going to be bumps on the way So I stood in the shower, I applied the hebi-scrub to my chest. I had been told to pay special attention to my chest as that's where they would be opening me up. As I scrubbed I was only too aware this would the last time I'd have my lungs in my chest, next time I won't all be me, I'll be me and someone else. So I scrubbed, I contemplated and then dried and gowned up. I noticed the shower had leaked and I had soaked all my clothes, pants, socks and trousers were drenched. I picked them up off the floor and headed back to the room.
I got back in the room and then just waited, it wasn't a long wait until the Consultant came into my room. I was ready to go down to theatre. . .
Now, as like the last post, here is some media stuff I've done and some wonderful medical research I've been involved in. You might even be able to find me singing, let's hope not though. ;)