I've been locked out, and I've been locked in

I'm not massively sure what I want to write about other than that I want to write about something. It's the anniversary of my walking into the hospital in Liverpool and it feels like I should address that somehow. The 9 years in between times have been pretty hrd going but it feels now like there's progress being made; the type of which I genuinely didn't think was feasible this time last year.

There's too much to really say about all that so let's just go back to the immediate time post trasnplant and what was happening. Prior to the operation there was all sorts of chat about how things tend to go for patients afterwards. As I've mentioned before the complexity of my case always left me feeling that it was going to be somehow more complicated than that, and so it panned out. Quite simply not being able to get enough wind in my pipes was such a concern that the dedcision to give me a tracheostomy and put my on a ventilator was made fairly early on and I subscribed to that fully. I knew I was in a bad way so it was an easy decision to make. In the immediate aftermath of that there was improvement and I was even making a bit of progress in getting out of my bed and into the chair next toit from time to time. It's amazing how your oxygen saturation in your blood rockets when you do that just from sitting in a much more upright position, where your lungs can fully inflate. I could only do it for a certain length of time due to the tube up my arse but it was still worth doing.

Anyway, it was a real day to day battle to see if I could slowly be weaned off the ventilator. On some days dropping the settings so I was less reliant on it worked exactly as intended and on others it went wrong and there was no great, obvious explanation for why most of the time. This was confusing the team of doctors almost relentlessly so every day required tinkering of some sort.

Aside from the deliberate movement to the chair and back, which was getting easier, everything seemed geared towards making sure I stayed as still as I possibly could as any movement resulted in pain of some sort. While it's in my mind the transfer between the bed and the chair was actually quite scary to begin with as it involved moving a lot of tubes and wires, and even the brief disconnection of the trachae tube, so it was not an experience I was always terribly thrilled about undertaking. The pain was well controlled broadly speaking at this point but sudden stupid movements on my part could still cause unbelievably sharp pains. Forgetting your predicament and reaching for something automatically is the greatest source of these events.

Other pain arose when things did go wrong on a slightly bigger scale. A few things took me back quite dramatically. On occasion they even took me back to the operating theatre. At the merest sign of anything going wrong in ICU you get a chest x-ray it seems but you're glad of that level of scrutiny when it reveals something like a pneumothorax. That generally requires a chest drain insertion, of which I was to have many over my time in there. On one occasion though there was something obviously much more wrong than that so it was proper CT scan time, which revealed that my new lung had herniated and was pushing through my ribcage. This was rather painful actually, although I thought it was just the general pain of a chest infection or something. I don't have much frame of reference for my lungs poking through my ribs after all. And so back to get a small procedure to fix that and all was well. Briefly anyway as that resulted in surgincal emphysema. My chest seriously swelled and had the giveaway sign of having a crackling feeling when pressed upon. My whole chest had been a sensory minefield for a good while anyway as immediately post transplant there was an epidural making everything in that whole area feel numb (which was tested regularly with ice poles to see if I could feel anything there) and then when I did get what they laughably called normal feeling back there was just a weird numb feeling across the whole chest that would take well over a year to start to resolve. I suppose massive surgery on that are will have that kind of effect.

Anyway, that emphysema issue, along with the pneumothorax took a while to resolve. Indeed it was a bit of a bone of contention between some of the doctors as to what point they had actually considered it resolved, which is fine for them as an academic exercise but a bit shite for the person in their bed worrying as to whether things can start to improve.

Round about this point I decided that I was taking a stand. By this point I could tell my mother was exhausted and needed a break. As fate would have it she had booked  a cruise with my younger sister's family way, way before I got called in and she kept insisting that 'we will see' any time I pushed to see whether she was going. In the end I insisted that she go as it became very obvious to me that I wasn't going anywhere anytime soon and she really needed the respite. I know that it's obviously hard on the patient but you wouldn't believe the draining nature of this sort of experience has on the close family. One of the things that I found hardest in that period especially was my own lack of ability to communicate. Getting your thoughts across to the medical staff is bad enough but when you're trying to have a conversation with your mother about how you feel she needs a break from it all it is incredibly frustrating if there is even the slightest misunderstanding of your meaning. Anyway, I got my way in the end and the mother was sent packing for a well earned rest. In the meantime I would have my uncle down for a bit and my eldest sister down for a good wee while too.

While she was away there was a bit of a change in tack with my treatment. As efforts to get me off the ventilator were not going as hoped we thought we'd try what they call an augmenting regime as a strategy. Upon first hearing this  I actually misunderstood and thought they were referring to an augmentin (a type of antibiotic) regime, which I didn't understand at all but I was so drained by this point that I just let it be. What it actually involved was a massive dose of steroids over 3 days to shock my system into re-setting and let me recover fully. It looked like it was working as well as after my time in isolation - massive doses of steroids completely buckle your immune system so you need to be in a side room - I was actually walking short but increasing distances. Then one Sunday I hit a brick wall. Not only could I not get up to walk but I couldn't even get out of bed and the ventilator settings had to be ramped back up again. Nobody understood why. It was round then that I had my first unfortunate experience with the team of doctors as they weren't always the best at communicating with you. During rounds they would stand in a circle at the end of your bed and discuss your case but wouldn't always deign to share their discussions with you. This led to one doctor let slip in passing that they had already began to wonder if I would ever get off the ventilator. Nobody had even suggested this so it was incredibly upsetting. When it got addressed the next time there was rounds the chat turned to the idea of me being shipped across yown to the Royal Victoria Infirmary to a specialist in getting people off ventilators so some good came of it but it still wasn't the right way to go about it.

While my mum was away a few other things happened that are worth mentioning. Obviously communication is an issue that I've mentioned a few times but then I not only couldn't speak but I developed tremors that were so bad that I couldn't write and struggled to type things on my phone ao I was genuinely restricted to lip reading. Some were better at that than others I have to say and it was incredibly infuriating for both parties if you couldn't get your thoughts across. The thing I hated most though was when someone who clearly hadn't understood you pretended they had - that really is no use to anyone but it's amazing how many did it. The tremors I mentioned also meant that I couldn't do things as rudimentary as putting my eye drops in myself. I have to use them so often too that it became annoying having to ask the staff. They also never seemed to understand that they weren't single use ones that got thrown away immediately after use. These were special ones that I had to get from home and could be re-used but trying to get this fact across to some of the nurses was an almost thankless task.The fact that I had to get them brought down from home meant that I was keen on preserving them so anyone just throwing them away just pissed me off. Just before I finish off I will mention that I had an NG tube in for feeding at this point but I was having lots of problems with them. That issue deserves a whole post of its own though so I'll get back to you.