Hanging on to hope, when there is no hope to speak of

There will come a time when anniversaries of things that have happened in my ridiculous medical history will pass without me even thinking about them I'm sure, but that time is not yet now. Today marks a year sine the last time I almost died and that I feel is still worth acknowledging, not least because now I can tell the whole story of how it all unfolded.

Everything had been going really well. I had finally been moved from ICU into HDU, which felt like a massive step towards the exit door. The previous week had been pretty great on lots of fronts actually. I had a veritable revolving door of visitors - I had a few old friends in one evening and laughed more in that one night than I had in years, especially when taking to the task of seeing just how far I could push my pal Kev with details about the surgery (he was going quite an impressive colour when hearing about it). I also managed my first shower after 266 days of bed baths, which was amazing. It felt like somebody sandblasted a layer of skin off me and I finally felt properly clean. Even the night before I had a visit from two great friends, one of whom is still the other part of the longest relationship I have managed in my life. It was a truly wonderful evening, although in retrospect us joking about how the very next day I was to get the tracheostomy out and that my best friend (who was arriving the next day after that from Slovakia) might not believe I had ever had one in at all, may have been foolhardy. Having had these visits as well as those from family and just everything really had left me so upbeat it was ridiculous. I had proper hope coursing through me as to how my future was going to pan out. At this point the feeling was that while I would get home, I still had to learn to walk and talk and breathe properly again, which was going to take time obviously, but at least I didn't need to be in the critical care unit and could do all of the recovery in a conventional ward. The odds were that I would still have to use a portable ventilator overnight but considering what I had gone through to that point I was absolutely amazed at even that possibility.

I had a long standing deal with the staff in critical care that when the trachaeostomy came out that I would put normal clothes on instead of the gowns I had been wearing since my admission. Many of them had asked if I had wanted to change into civilian clothes before that but I had always maintained that I didn't want to destroy my own clothes as having a gaping hole in your neck isn't always the cleanest of situations. Anyway, I was always quite comfortable in the gown and the idea of pulling a t-shirt over my head was somehow quite daunting but if the tube was out and the hole covered I thought I would give it a go.

And so, on the morning itself I was quite giddy. 257 days of having the tracheostomy in had passed and it had taken a slow and methodical process to get to the point where everyone felt we could take it out and any oxygen needs could be met with nasal prongs or a mask. The team came by on rounds and said the plan was indeed to carry on with the plan we had talked about with one of the consultants coming round once they were done going round everyone and we would take the tube out. The process we had gone through in the weeks and months beforehand in reducing the size of the trachae tube itself had let me know that it was a strange sensation getting it removed but it wasn't in the slightest bit painful so I wasn't worried at all.

When the doc came round and actually removed the thing it was so incredibly low key that it beggared belief. It was such a massive deal but it was done in such a cursory way that I couldn't quite believe that it was as straightforward somehow.

And so, just like I had promised, I decided to try putting some clothes on. I (very slowly indeed) got my shorts and t-shirt out and placed them on the bed and set about trying to get properly dressed just before lunch was due to come around. I managed the t-shirt and a pair of kecks and had my shorts at my knees and was just about to hitch them up over my arse when something felt very, very wrong very quickly. I still had a few monitors on and the one that was suggesting that something was awry was my blood oxygen saturation level (sats). I had almost instantly gone from 95% oxygen down to just over 60%, which was a new record for me. I have learned since that if you drop below 60% there is an immediate threat that your heart could just stop. I didn't know that at the time and it wouldn't even have mattered anyway as the more pressing concern was that I couldn't get any sort of breath into me at all. Everything was operating still on what I already had in my body and that wasn't going to last long. I was sitting in an upright position when it happened and had to stay that way. It was absolutely agonising as my back was arching so much with my body's futile attempts to suck some oxygen in. Even with high flow oxygen pumps operating on trying to force some of the good stuff into me it was barely making a dent. Something had clearly gone wrong structurally and the oxygen just simply wasn't getting into me to help. It was so rapid and dramatic that it wasn't jut a case of my lips going blue - my whole body did.

The previous couple of times I had almost died I had been totally unaware of because I was unconscious for almost all of it but this time I was fucking wide awake and all too aware of what was happening. I genuinely thought that I was on my way out.  It's maybe worth mentioning at this point that by that stage things had improved so much in my recuperation that if you paged the home ventilation consultant he would maybe amble down about 45 minutes later to see what was happening. That he arrived within 3 minutes of all of this hullabaloo starting I didn't take as the greatest sign. This was a proper crash like you would see on telly. The number of doctors and nurses around me by this stage was phenomenal. To say that it was terrifying is as big an understatement as I've ever made but I was frightened out of my wits. It was also so sore by this stage that I was pleading as much as I could for them to just knock me out. Unfortunately for some of the checks they had to do they had to keep me awake so I had about 15 minutes of barely being able to get any breath in and being in agony before they finally got the propofol into me and I got the relief borne of unconsciousness.

When I woke again I was back in ICU and my mum and my sister were at my bedside. Again I thought this wasn't a sign that things were in any way ok. I could feel that a replacement trachae tube had been put in and the cuff was inflated again so I couldn't speak. It was all a huge step backwards and I just felt like crying. This isn't a conventional reaction from me at all as I am generally just very stoic about things but right at that moment I just thought of what my chances of ever being rid of machinery to help to breathe were.

After I spent a bit of time with lots of the family, who had descended after getting either emergency phone calls or having someone else turn up at their work to get them, then the docs came round and explained what they felt had happened. After having had a piece of plastic holding my trachea together for so long removing it led to it collapsing, even though there was a stent in there that should have held it at least a little bit open. The cartilage that keeps it rigid had just wasted away and my moving around had just caused it to fail. The insertion of another trachesotomy had eventually sorted this but it had obviously been a bit dangerous. As well as this one of my lungs had decided to completely collapse, which nobody could quite explain at the time. By all accounts the before and after x-rays of my chest looked like they could have come from different patients when they got the lung re-inflated. One of the doctors that I had become quite close to confided in me later that day that it was one of only about 3 times as a doctor that he had been properly terrified when it was all happening. He was so apologetic about having to keep me awake when it was obvious as to what level of distress I was in. In his previous rotation he had worked with one of my sisters and I think the thought of having to tell her was in his mind as much as the other stuff.

I calmed down slowly over the next few hours and even managed to put out a post on Facebook to let as many people know as I could what had happened, and that I was OK. I had indeed nearly died (again) but the really crucial thing was that I hadn't. The docs in fact were (I felt at least) fairly inappropriately upbeat when talking about my prognosis. They all seemed to be of the opinion that this was a setback that would only hold me back weeks rather than months in terms of recovery. This was amazing to hear, even if I doubted it right then.

All this meant that when my best friend Dave did arrive in to see me a day or so later I couldn't actually speak. I had so much I had wanted to tell him and I could barely get even the most rudimentary point across. Everyone's first attempt at lip reading goes badly and then, over time and a few visits, they just tune into it. We never had that opportunity as he wasn't back in the country for long enough so the time he spend with me was torturous for us both. It did at least get a little bit comical when I told him to get a bag from behind my bed. In it was my gift for his new born daughter's christening. He quite simply didn't understand that was what it was and each attempt I made to explain to him that it was for her just wasn't getting across and we were each getting more and more frustrated. Finally, after getting as close to shouting at someone as you can when you have no air going across your voicebox, you cold literally see the penny drop and he replied 'Oh, cheers mate'. Fecking idiot that he is.

As well as coming over to see me it was also Scottish Cup Final weekend (I'll leave it to you to decide which of these was Dave's greatest priority btw) and Celtic were going for the treble. The last time they had achieved this was the very season I had got my bone marrow transplant. Never let it be said that I don't go to extreme lengths for my team to win things. From the incident on the Wednesday I had a couple of repeat showings, albeit much less dangerous than that one because I had the trachae back in, where my sats just plummeted and I had to get the rapid oxygen supply on to get me back on an even keel. The same day that Dave had been in the team of consultants decided amongst them that I needed surgery to basically rebuild the whole structure of my windpipe and to do a bit of repair work on the lung that had collapsed. For this they would require to assemble a team that would comprise the respiratory surgeon and an ENT variety to do below and above the voicebox accordingly. To get that team together would take until the next Wednesday, especially as they had to get a special drug brought in to treat the scar tissue that was, at the very least, partially responsible for the lung collapsing. The episodes where my sats were dropping were an inconvenience, but everyone thought I was going to be ok to last until the Wednesday. I watched the football and the last minute winner made me feel amazing for about ten minutes, and then another plummet in sats led to me just dropping out of consciousness for most of the Saturday night. Things were not very good - I knew that.

On the Sunday morning my own nurse was helping out at the bed next to me with a patient who was properly sedated and I jokingly said to her that I wanted some propofol just for a wee break from her patter. Almost immediately my sats dropped again and the consultant in charge that day called the ENT surgeon who came to see me and within 30 seconds of him arriving and sticking his scope down for a nosey he had decreed that "Paul, you've gone and fucked up my Sunday as you're going to surgery, and soon". Very shortly after my respiratory consultant arrived in shorts and t-short (apparently I had somewhat interfered with barbecue plans) and then a specialist anaesthetist arrived in to talk me through what they were going to do. Obviously they couldn't do the full surgery as the full team couldn't get in at such short notice on a Sunday so they were going to do the repair work above the voicebox as well as what they could do below it. The anaesthetist explained that what seemed to be happening from a look at the scans they had rapidly performed was that there was one rogue piece of skin that was flapping over the entry into my lung and occasionally blocking it. In her words it was like someone was periodically sticking a peanut right on the entry to my lung and that's why it was only every now and again that things were going wrong. What was immediately clear though was that it needed sorted because quite simply I wasn't making it to Wednesday if it wasn't. I instantly joked with my nurse that I'd be getting that propofol after all.

As promised the ENT doc did all his work there and then and so wouldn't be needed on the Wednesday and I was stabilised enough to mean that I could wait until the rest of the team was assembled (along with the arrival of the necessary drugs) before doing the proper repair job. That was when the most incredible thing happened. During that main surgery the team noticed that, because of assorted structural failings) I had basically been trying to breathe through a hole the size of a straw. The surgeon, Chris, decided to widen this substantially and the effects were remarkable. Within days of that surgery it was not only possible to remove the tracheostomy tube without fear of the windpipe collapsing again but we also tried taking me off the ventilator. I could breathe normal air.

When I arrived in Glasgow from Newcastle my diaphragm wasn't working and so I couldn't breathe at all without the ventilator and the home ventilation team told me that only with good luck and a following wind would I get home without having to use the ventilator for at least part of any day. In their opinion it would probably take 6 months to get to that point too. That was their best case scenario. 

Now I was sitting up and able to breathe on my own with no extra oxygen, and it all stemmed from the doc finding a structural flaw that he wouldn't have found if my windpipe hadn't collapsed when we took the trachae tube out the first time. I can't quite say that I'm thankful that it happened as it is, by some distance, the most traumatic thing to ever happen to me but the result is incredible. I got out considerably earlier than the home ventilation team had even conceived possible and did so without any of the machines they expected to send me home with.

Now, a year later, I will be heading into Glasgow on the train to go to the Dental surgery at Gartneavel on my own. It is still ridiculously difficult and takes all my energy to manage it and the recovery after is a struggle too but that I've come this far in that time is miraculous.

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.