I've tried to write about the week post transplant a few times now and deleted it all to start again as each time something hasn't wrung quite true on each attempt. I just can't get the order of things in my head and so I am just going to say a few things that happened and what I felt (or at least thought I felt) at the time.
Let's just get the most grim stuff out the way first. When you are in the ICU anywhere dignity is not a big part of your life. Being bed ridden for almost 24 hours a day every day means you need to get moved around to stop you getting bed sores and the nurses develop an obsession with your arse to make sure your skin in that area remains in the best condition. A real issue in that situation is that you don't always get enough warning to get a bed pan and so accidents happen. It's utterly mortifying the first few times it happens but then you see that the nurses have seen it all before and they do their best to make sure you're not too upset by it all. Having a catheter in makes the liquid part easy but solids could often be a problem. Things actually got so bad on that front that I had what they euphemistically call a bowel protection system put in. In other words I had a plug and hose stuck up my arse. It was not a joyous experience having that inserted even through the fog of some serious medication. For all the good it did by the way. Nobody was ever happy with it and so my bed would often need changing anyway and the persistent diarrhoea was indeed beginning to cause my skin to break up a bit. Having a massive tube up your hole also meant that I couldn't sit out of bed for any length of time as it was just too uncomfortable.
In the first couple of days post transplant I made what felt like bits of progress but it was nowhere near enough. The big picture was that I got the breathing tube down my throat out and was on what they call the CPAP (Continuous Positive Airway Pressure) mask to try and keep my oxygen saturation level up. After a short while I had to be re-intubated as I wasn't doing well enough on my own with the new lungs. I also needed a couple of days of dialysis as my kidneys weren't working well enough to deal with everything they were hitting me with. I'd love to tell you more about this stuff but I was totally out of it at the time. I have only the vaguest memories of things that happened during that first week or so really. I remember for instance being told that my sisters were there and I can just about remember rolling on to one side to wave out the window of my isolation room to them. I was flitting in and out of consciousness a lot at this time and it all just seems so hazy now. It felt pretty hazy then too, which leads me to a point. While the pain for the clam shell scar from the big operation was dealt with by an epidural I was also on pretty serious doses of Morphine. It turns out it and I don't agree so much. I had some pretty serious delusions and quite a few hallucinations as well. There's little more dull in life than hearing other people's dreams so I won't bother you with that stuff except to say my mind managed to come up with this weird sci-fi story about three warring families that controlled the globe between them every time I fell asleep. It was so very vivid that I was convinced that I had some magnificent insight into how the world works. Utter nonsense obviously but this stuff was ready and waiting for me every time I dozed off. I'll get back to the hallucinations at another point, but they were at least funny. It wasn't long before the docs sussed out that we needed to try something different from Morphine as I was losing a bit of grip on reality.
When I was awake I was managing tiny amounts of physio with the move from bed to chair being something that would become crucially important. When in bed your lungs compress a little purely by virtue of gravity so it's important that, if you can, you sit upright in a chair. It's actually pretty amazing to watch your oxygen sats fly up because you're just inflating your lungs that little bit more. As I said though I could only sit comfortably for a short while before I had to get back into bed. I really can't tell you how hard that period was. Even in the chair though it seemed that nobody was terribly happy about the numbers they were getting on any number of factors.
I wasn't an infection risk by this point so could move out into the main ward which felt good but I was struggling quite badly still. The decision was finally made to give me a tracheostomy (I actually ended up shouting at one of the doctors who kept changing his mind about whether to do it or not) and have me hooked up to a ventilator to basically do my breathing for me for a while and give me a chance to recover a bit of strength. This was when the notion that my diaphragms weren't functioning properly was first aired. You see the operation for the removal of the old lungs means severing all the nerves that stimulate the muscles for breathing and then reattaching them and literally hope they just fire up again. Mine very much didn't.
I wasn't really paying much heed to what was happening in the outside world but on the day of the trachae insertion it happened to be the day Celtic were playing Rangers and I got woken up post operation by a fellow Celtic fan anaesthetist simply holding up his fingers in delight telling me that it was a 5-1 win for the good guys. I properly laughed but made absolutely zero sound. This was to be my new normal for quite some time. No food, no drink and no speaking. I could get a breath though and at that moment that was such a relief that the rest didn't matter quite so much.
Night time became hard during that period as the aforementioned nonsense dreams were putting me off going to sleep but I was also getting terrifying visions at night too so I could spend hours just staring at the ceiling stuck in the relentless misery of my own mind. I was so distraught at some of these points (as well as then being in some pain) that there were a few long dark nights of the soul where I wished it would all just stop. I didn't want to die but I was so very tired of feeling the way I was that I just wanted it all to stop. I got sent a psychiatrist to assess me and she just kept talking about developing 'coping mechanisms'. I swear she told me at one point to imagine myself relaxing on a beach. This was one of the first instances of me trying to communicate through lip reading and neither of us were very good at it. I wasn't enunciating clearly enough and she just wasn't used to it. It was one of the most infuriating things I had to endure in the whole time I was in there, and I include having hoses shoved up my arse in that.
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