It won't take much for me to show my life ain't over yet

The observant among you will notice a slight change in my blurb at the top of the page.

I am indeed now in 40-50 demographic. Don't feel any different but milestone birthdays do cause you to assess things maybe a bit more than you normally would. My birthday being at the end of the year means I tend to have a bit of a review anyway so that's what I'll be trying to do today, to basically compile my report card for 2017.

I'm going to start by cheating ever so slightly and taking you into the last two days of 2016. I was getting the latest in a long line of bronchoscopies. I already had a stent in place for strengthening the windpipe, but there was a suspicion that there was something else a bit wrong. I had been voicing concerns about this (admittedly through the medium of my sister and my mum as I couldn't speak myself at this point) for ages with little in the way of response. They had found some polyps that were in an unfortunate position and closing the airway a bit so the plan was what they call LASER ablation to burn the polyps off. I knew something had been wrong and nobody really seemed to believe me. It wasn't till they discovered these polyps that they acknowledged that these would explain why I had felt there was something wrong

Anyway, when doing the bronchoscopy, things went a bit awry and the opening to one of my lungs completely closed over, which caused the lung to collapse too. The surgeon, Sasha, said afterwards that they only got the airways open again through 'brute force and ignorance'. He said I was amazingly lucky that I didn't die on the operating table.

I was obviously totally unaware of this happening as I was totally sedated with propofol, which by that point I had become very fond of indeed, but I digress. When I woke up I thought everything had gone fine and I felt pretty good, all things considered. I knew something had happened though as it was obvious my mum had been crying. The nurse Gareth that she had developed a great relationship with in the first few weeks post transplant was walking towards her apparently after he had heard what happened in theatre, and she just knew something had gone wrong. Before even uttering a word he just gave her a much needed hug. That boy is a hero.

In light of all of this happening the docs at the Freeman came to a conclusion. They felt that they had tried their best with their expertise, allied with that of the team across the city at the RVI, and what was needed more than anything else was a fresh set of eyes on the problem, so we started looking at getting me transferred to the home ventilation team at what us punters still refer to as the Southern General in Glasgow. This was great news as it meant my mum would no longer have to stay in the pokey little accommodation down there away from the rest of the family. She could go home and sleep in her own bed and, most importantly of all for me, share the burden. She didn't have to come in every day (not that she wouldn't if you let her) but visiting could be spread out much more evenly. It also meant that my wee sis wouldn't have to do the drive down whilst heavily pregnant with a sick bowl in her lap in case of emergencies.

Of course this would take time and it meant that the docs down there weren't going to try anything new in the meantime, the logic being I could actually just do with a break. I pretty much agreed with that as I was pretty weary by that point, having almost died twice in the previous months. At this point I do want to address something regarding my care. In all the many months I was down there although I received tremendous care in terms of physical issues I felt that the team in ICU had real problems with communication, both with patients and families alike. On rounds every day they would stand in a huddle at the end of your bed and talk about you. If you got any comment from them at all about what the plan was you were very lucky indeed. Normally I'd have been going mental at this but with literally no voice and no real heart for a fight I let it go. One consultant confided in me that he had actually been brought in to the team to try and improve this after complaints to that end. He said it was infuriatingly slow to get them to change their habits even in the slightest. He also told me that another reason why they were keen on transferring me was because only a certain percentage of the beds in the ICU were allocated for transplant patients and, although my issues were much more peripheral now and not really transplant issues, I was still regarded as one. As such I was using up a bed that could be used for someone else as, at that moment they were closed to transplant patients as all beds were being used. Now I hope you don't think ill of this doctor for telling me this. He was the one that was perfectly happy to be frank with me about anything I asked. He was just being honest in saying it would be a relief if they could help someone else, especially as it was clear that they weren't helping me by that stage. 

I'd like to make an important distinction here. The nursing staff couldn't have been any better. They were amazing at doing what they could to make things better for me but ultimately the poor folks were pissing in the wind. You could see it was getting to them and I think they were genuinely worried for me. A couple of the doctors could learn an awful lot by paying heed to what these guys and gals actually do.

From the time the decision was made to move me the initial elation very quickly turned to massive bouts of depression. All told I spent 7 weeks from the decision to move me to Glasgow, mostly just waiting on phone calls. I was still doing routine physio and all the normal things to try and minimise any further muscle atrophy but that took up such a small part of the day that I was pretty much left to myself. To say they downed tools is an exaggeration but it just felt so endlessly bleak. Everyone spotted it, and indeed my wee sis commented that it would be kinder to just put a pillow over me and smother me. It's not that I wanted to die, but some part of me wanted it to just be finished, one way or another. One of my friends has told me that, for her anyway, the bleakest part was knowing I couldn't eat anything. That my stomach couldn't digest anything at all was indeed having a terrible effect on me. I was being fed through a tube directly into the jejunum, bypassing the stomach completely. I also had a tube up my nose to let out air that was building up in my utterly useless stomach.

The stomach was an issue because peristalsis, the contraction of muscles along your gastrointestinal tract is controlled by the same nerve that controls the diaphragm (or didn't in my case). That it was still not functioning was fucking me on two fronts.

After one missed opportunity to get up the road (due to some other person falling dramatically ill) I eventually got the nod to go up to Glasgow. Although it's exactly what I wanted I still felt massively anxious about the trip. I'm not someone prone to anxiety so this was an odd sensation for me. I requested sedation for the trip, which they were happy to oblige me with so, I got knocked out for all but the last 5 minutes of the journey in the ambulance. The nurse who came with me told me when I woke up it was a good thing I had been as it had been pretty hairy due to very high winds and icy roads. He gave me the biggest hug on leaving and made me promise to keep in touch regarding progress. He was another that my mum had developed a great relationship with, and that they still keep in touch now is testament to that.

That first day in Glasgow nothing happened at all except for swabs being taken for fear of infection as technically I was coming from a different country. I would spend that first week in an isolation room for that same reason too. That first night in Glasgow was just a bit weird. The poor nurse looking after me had to stay in the room with me all night with pretty much zero to do. She had to sit in the dark for nearly the whole shift and just watch me sleep, and not doze off herself. The self control of that alone was amazing.

The next morning the whole ICU team came around on rounds and the very first thing I noticed was that instead of huddling at the top of the bed they all stood in a semi circle around it, and I was involved in every discussion that took place. This was different, and I liked it a lot. The consultant explained to me that they have 21 of them operating in rotation and, while I'd see them all, one would be in overall control of the decision making at their weekly meeting about the patients. This was markedly different from Newcastle where I felt a few of the consultants had contempt for the practices of others and would happily bad mouth their colleagues in front of junior doctors and the patient. Again, I liked this change.

I then met the home ventilation team who were ultimately in charge of my care. They were brilliantly honest with me. The consultant Scott said that, after all I had been through, he hoped that (with a bit of luck and a following wind) I would get home only needing the oxygen on overnight and with just a mask rather than the trachae I had in place then. In his mind this was a 6 month project really as weaning me off the ventilator was not going to be easy.

It was by no means immediate, but it was only a few weeks later when things started improving. I want to make clear at this point that this would still have happened in Newcastle too, but the visiting public were convinced it was the move back home that propagated it all.

This feels like a moment for a pic to show you what it was like.

On the topic of the visiting public, I had lifted my embargo on friends visiting. It wasn't so much that I didn't want them to visit me in Newcastle, but I realised early on that a lot of the time down there I was either asleep or getting some sort of procedure or another. I feared that anyone coming down would do so and not actually see me at all. A seven hour round trip for nothing would weigh on my mind so I told them all not to come. I couldn't stop the family obviously but even if I wasn't terribly responsive (if there at all) then they at least got to spend a day with their mum. Very quickly in Glasgow I started getting my friends dropping in to see me and most visits went the same way really. The first wee bit just involved them looking at all the monitors and probes and trying to digest what my new normality was. You just had to leave them to come to their own level of comfort with it all, and it was intimidating seeing all these machines on your friend, so different people took different lengths of time. That was fine though, as everyone is entitled to their own response. Once it's out of the way though it is remarkable how quickly things return to conversational norms and we're back to slagging each other off again.

Having friends visit again also took some more weight off the family. It wasn't without flaws though as most of these folks have got real lives and responsibilities and so would occasionally have to cancel at the last minute. When you've spent your whole day looking forward to seeing someone and they suddenly can't make it it's upsetting, even if you totally understand the reasons why. It took me a long while to realise that it's not like when I was first sick with the leukaemia and we were all priority number one for each other. Now other things take precedence, as they should.

Part of the home ventilation team was the physio Dave and wasn't really bothered by how much physical exercise I was doing at that point, so it was just getting up out of bed to sit for a while and back again, just like Newcastle. What he did do that was different was respiratory physio, which involved pushing certain points in my ribcage to realign them. He was basically moving my ribs around to allow my lungs to function more fully. It sounds mental but, as my ribcage is now basically held together with bits of wire and scaffolding (which makes my chest x-rays look pretty cool I have to say) it's not quite as rigid as it would normally be. So Dave stood  at the head of the bed reaching over and basically pushing and pulling at my ribs one at a time and working out what to do with each one, and it was magical. The next time Scott came in I asked him about it and he just said 'None of us really understand what Dave does, but it works so we just leave him to it'.

By this stage we had been slowly reducing the settings on the ventilator and I was coping just fine with that. One slight issue with the big ventilator that we could never resolve was that it kept alarming thinking I had stopped breathing because I didn't take enough breaths per minute for its liking, so the sleep apnoea alarm would go off all the time. Thankfully it wasn't long before they thought it was worth trying the portable ventilator that I would eventually have to use when I got home. It is a considerably more basic piece of kit but that lack of sensitivity meant that I wasn't getting this alarm going off all the time. I did have to go back on the main machine briefly when I got an infection but as soon as that cleared I was on to the portable again.

As well as that I was trying periods where I was just on humidified oxygen, which meant that it was all up to me to do the breathing rather than the ventilator doing it for me. This started just when I decided I was going to try some food again, as if my stomach was starting to work then the theory goes that the diaphragm would follow as it is the same nerve that controls them. They couldn't directly look at the diaphragm before this as the ultrasound scope they use is affected by the ventilator, but you could tell by just looking at me at that point that every breath was coming from using the intercostal muscles. They are there for a bit of extra help, but are in no way strong enough for normal breathing alone, so it really shows that you're having to work hard for every breath. Scott had by this time noticed that I wasn't having to exert myself quite so much that he was beginning to suspect that I was indeed using my diaphragm again. I started off proving this by eating tomato soup for a week or so then slowly thickening things up until the point where I could try solid foods and keep them down. At this point we decided it was time to take the cuff of the tracheostomy down for short periods to see how I could cope. The cuff sits above the vocal cords and makes your respiratory system sealed so you get all the benefits of the oxygen getting pumped in. When it's down some of it escapes up the way so you have to work a but harder. What it does mean though is that eating is easier and you can talk when it's down. That was massive for me.

From a starting point of just doing 10 minutes a few times a day to building up to doing hours and hours of it, we very quickly managed to improve things and the next stage was reducing the size of the tracheostomy itself. There were a few mishaps along the way but essentially I was recovering quicker from these mishaps than I had done before, which was all to do with getting stronger and stronger too.

Between the periods with the cuff down and being just on the oxygen I was improving in such a way that there was simply no doubt that my diaphragm was working again as there was simply no way the intercostal muscles could conceivably do this much work on their own. It's too tedious to go into all the details of the steady improvement at this stage but the physio team in ICU were getting me to do exercises as well and, exhausting though they were, there was a strange euphoria to managing them too. Don't get me wrong, some days I couldn't do them at all because I was so fatigued, but the team mostly recognised that it was a case of couldn't rather than wouldn't. At least the experienced ones could assess that. The younger ones weren't quite so good at that but that's not really their fault. That will come with time doing the job.

One day I had decided that I was going to try 24 hours off the portable ventilator. It was a Friday. I stayed off it over that whole weekend until the Monday, when we decided that, while that was amazing, it was best if we gave me a rest again before doing it all over again. We kept reducing the size of the trachae and in fact kept on reducing pretty much everything else too.

Eventually, after A LOT of hard work, the doctors were happy to move me next door from ICU to HDU. In the first few days there I had a fight with a physio and then another one with a nurse. As it happens I was in the right both times. The physio was fine about it as it had been a breakdown in communications but the nurse hated me for it. I had basically told her she didn't know her job and her ignorance was dangerous. My mum was sitting with me at this point and she had this curious mix of horror and pride on her face as I laid into this woman for being so wrong that it beggared belief. One of the doctors came over and agreed with me about it (it was all to do with IV drugs vs tablets) and she was really just being lazy because she couldn't be bothered with the hassle of giving me the drugs intravenously.

Anyway, all this improving had to lead somewhere. At first it led to me having me first shower in something like 276 days. It was amazing. Getting a bed bath every day is not actually that much fun, not least of all because you never feel like you're properly rinsed off, so this shower felt like it was getting the months and months of soap off me. It was like getting sandblasted really.

I was doing much more physio now, which involved walking up and down the corridor just next to my bed and seeing how far I could manage. As you'd expect that got farther each day and, perhaps more importantly, my recovery between these exertions was improving too. I was getting a lot of visitors at this time and two nights in particular stand out. One night three of my friends came in and I laughed just about as much as I had in years. One of their faces after he made the mistake of asking about the main surgery itself will stay with me for a long time. He looked proper horrified when I was explaining the clam shell incision. One of the others brought me in a box of tampons for sticking in the trachae site, which we were just going to try and take out the next week. The cheeky bastard. The next visitors were my ex Sam and one of my friends from school and University, Alaine. It was another fabulous night but one where I didn't so much tempt fate as much as downright goad it. My best friend was arriving in the country the next day and we were going to take the trachae out that day too and I joked with them that Dave would never believe that I even had the breathing tubes in at all.

That Wednesday started off with a promise. The nursing staff had been on at me for ages to maybe put on my own clothes for comfort but I didn't want to because it would just get in the way of the trachae and, to be honest, I didn't see the point in wrecking my own clothes when I was actually perfectly comfortable in the gowns they provided. I said to them though that when the trachae came out I would put civilian clothes on. It had become a proper marker of progress in my head.

When it came to it, it was pretty low key. One consultant and one senior nurse came and literally pulled this piece of plastic from my throat and waited to see what happened. Nothing happened. I was ok. I was still on oxygen at this point, incidentally. And so I decided to fulfil my promise and put normal clothes on. I slowly put a t- shirt on followed by a pair of kecks. I was just pulling my shorts on; I had got them to my knees when everything went wrong. It was full on crash wrong. I could not get a single breath at all wrong. Very suddenly I had pretty much the full team working around me. Even though my oxygen sats had dropped from the mid 90's to 61% I was still awake and aware enough to notice that not only was the ICU consultant there with his whole team but Scott, the man in overall charge, had arrived. Normally if you paged him he would be down in about half an hour. Then it was less than 3 minutes, which I didn't take as the best of signs really. They had to keep me awake for some of the tests they had to do, which was horrific in ways that I can't begin to explain, but as soon as they could they knocked me out. I woke up a few hours later back in ICU with my family all around the bed. Again, not a good sign.

It turns out that hat had happened was that, as I had spent about 9 months with this piece of plastic holding my airway open, all the muscles and  tendons and things just weren't strong enough to keep it open on their own, so my windpipe collapsed completely and my right lung collapsed too for good measure. They had to put a trachae back in and I was back on the ventilator. I just felt like crying.

The docs came to explain what had happened and reassured me that this, for all it was shocking and I nearly bloody died again, was a setback that was only going to be weeks rather than months. I was strong enough on all other fronts to eventually get the tube out successfully. One doc would tell me afterwards that it was only about the 3rd time in all his years as a doctor that he had been properly scared. My lips hadn't just gone blue through lack of oxygen, my whole body had and it had done so rapidly.

What this meant though was that when Dave came to see me I couldn't talk to him and we were back to lip reading. He was, by some distance, just the worst at it and it was so infuriating for us both. I had a present for his new baby daughter's christening and when I managed to finally communicate with him to get it out the bag it was he looked at it, said it was lovely and then went to put it away again. I was basically silently screaming at him that it was for his daughter but he was just not getting it. Eventually he got the point and simply went 'Oh, right. Cheers mate'. Looking back on it I can laugh but at the time it was torture. I think he would probably admit that he found that visit horrendous. I had been looking forward to it for so long and it was just so difficult on us both.

After the collapse of the windpipe though there was still obviously something wrong as I was periodically desaturating. My airway was held by the trachae tube they had reinserted now but for some reason something was blocking things. The docs had collectively decided to perform surgery on me the following week to fix the airway completely. This needed two surgeons operating above and below the voice box to basically strengthen everything and also to apply a paste to the scarring in my lung that was causing it to occasionally collapse. Getting these two on the same day as well as having the drug they were going to apply is why there was a wait required. Unfortunately these desaturation events were now happening so regularly that the ICU consultant asked the ENT surgeon who would be doing the top bit of the operation around the voicebox to just have a look down with a scope to see what was going on. Within about 5 seconds he said 'Well Paul you've just gone and ruined my Sunday as we're going to have to take you to surgery straight away'. Turns out I wouldn't have made it to the Wednesday. The other surgeon (Respiratory) got called in too, in shorts and t-shirt just to highlight it was a Sunday off, and everything was prepared for enough of an intervention that would keep me safe until they could do the full job on the Wednesday.

The anaesthetist that came to see me explained that what was happening was that the opening to my lung was closing over 'as if someone has placed a nut over it' and then it was clearing itself, but the unpredictable nature of that was obviously not good enough so they went down to fix it. As it turned out this whole affair was actually going to benefit me massively in the long run. They did the rolling repairs on the Sunday (in fact the ENT doc did his whole job and so wasn't needed on the Wednesday) but Chris, the respiratory consultant noticed that there was actually more that he could do when he was going to go in again. It turns out that as well as this periodic problem of the airway closing, that when it was open it wasn't open very much. He said it was like I had been trying to breathe through a straw for months. He planned to fix that, and he bloody well did.

When I came round on the Wednesday not only was I not on the ventilator but I was on pretty minimal oxygen. As well as the work on the scarring in the lungs he had significantly widened the airways and within hours I came off the oxygen altogether and was breathing normal air, with no aids whatsoever for pretty much the first time in 8 years. It was incredible.. Now again I felt like crying, but for very different reasons. 

Within a week of this happening I got the trachae out with no problems at all this time and was on my way to a normal ward. They didn't even bother with the step to HDU. It was straight to the ward. When I arrived in Glasgow nobody, and I genuinely mean nobody, thought this was possible. The notion was I would get discharged direct from ICU to home but with all manner of machines to help me breathe. Now I was breathing and doing physio and only using the oxygen for recovery. It was at this point that I had to change consultant as I suddenly didn't need the home ventilation team any more as I no longer needed ventilation at home. The surgeon who operated on me from the respiratory side of things took over. This was both sad and amazing at the same time. These people had worked wonders getting me to this point. Scott and the head nurse Allison who had looked after me came in for quite an emotional send off.

When I got to the ward the physio Dave came to see me to come up with a regime for me. He said it would take about 8 weeks for me to get home from then. My sister was due her baby in just over 6 weeks from then and so I set about destroying his predictions too. Being in a room on the ward was very weird. I had gone from a completely open ward with masses of machinery beeping constantly at one thing or another to a room on my own with nothing hooked up to me and complete silence. That I actually had to get up to use the bathroom was a bit wobbly at first but I could literally feel my strength coming back. Just like the weaning plan to get me off the ventilator the physio regime was designed to help me slowly improve muscle strength and it was important that I do it correctly as doing too much can do as much damage as doing nothing. Having said that I was improving at such a rate that we just kept moving the goalposts.

Here I am at the start of it all when we were using the oxygen still. I was simply marching on the spot for a minute or so before recovering and going again. The zimmer frame is there to stop me wasting energy wobbling from side to side, which was still a struggle.

After a few weeks of this I went outside, and it was amazing.

Things were accelerating. It seemed like miracles were just following other miracles. After a wee while I even managed a walk. This was a massive deal.

If you're thinking the tracksuit is a bit 'Thriller video' then rest assured that joke has been made many times but I don't care. In a very short time indeed I had:

Learned to talk again

Learned to breathe again

Learned to walk again.

The 8 week plan had been thrown out completely and Dave, who trusted me so much that he very rarely actually came in to see me do the physio. He only really came when we were trying something new. Very early on I actually requested that we didn't use the oxygen mask even for recovery as, even though it is giving you more oxygen, you can't take big, deep breaths well with it on. In fact it can feel quite suffocating. The docs had nothing but good things to say at this point and I was only really being used by them as a guinea pig again for teaching junior doctors. They were happy to discharge me as long as Dave said I was strong enough to cope at home. We came to an agreement that I would stay past the point where I could just about cope at home to a point where I could cope fairly easily, which involved stairs and such things. I think I managed to prove I was strong enough during a couple of visits. Two friends from Uni came in with their kids to see me and because I mentioned that I could walk a bit now their daughter just grabbed my hand and took me for a wander down the corridor. Secondly, one of my closest friends (and the love of my life when I was 16) came in and got the shock of her life when I just got up out of bed and gave her a hug. This was a truly happy moment for both of us as should be clear from this

As fortune would have it all this progress resulted in me getting home on my sister's birthday (two and a half weeks ahead of schedule by the way). She knew that was the plan but her daughter, who I hadn't seen in 11 months and who still used to check and see if I was in my room any time she was at Granny's house, didn't know and it was just amazing surprising her by appearing like that. The wee soul was all confused and grabbed on to her mum and said 'but uncle Paul's in hospital'. After a few minutes she totally came round and I got this

In case it isn't obvious I was crying by this point, just like I am now recanting it. Just three days later my wee sis had another baby girl. You can see why I was so keen to get home that week.

The day after this I went in to Glasgow for the afternoon for a small get together for a home stag do for my best friend Dave. That I got to speak to him this time was so good for both of us. One of the other people there that day was the aforementioned mate who had got a bit queasy when I had talked to him about the transplant operation and how they open you up, and even in the fifteen minutes or so we spoke I got so much from chatting to him that it was brilliant. He helped me realise that it was OK to feel what I was feeling on a number of fronts.

Physically I was improving daily and when I went to see physio Dave at the end of August he said he simply didn't need to see me anymore as I was clearly doing the work required without prompting.

Round about this time I got a bit of mental whiplash. All the physical things that had improved at such a startling rate meant that I hadn't really had time to process each individual part of it and my brain just couldn't cope with it. Throw in the predicted depression that most transplant patients get surrounding the 'OK, now what?' question and even further on top of that, I was missing my best friend's wedding due to it being in Slovakia and that was still way beyond my capabilities. I was meant to be best man too. Round about then I was waking in the middle of the night, often in an awful state. When this happened I would regularly try and write down what was bothering me to crystallise it in my head. I would send these messages off to a few old friends who had been particularly helpful previously when I was struggling in some way, unwittingly or not, and I think I freaked them out a bit. It was too much to offload on people, which I can see in retrospect, but wasn't all that clear to me at half two in the morning when I couldn't sleep. I've written about this in previous posts so I'll not labour the point any more.

This issue was massively helped by the fact that Dave had a wedding reception do in Glasgow for all the people who couldn't make it over to Slovakia and I got to deliver my best man's speech after all. After I had finished the maid of honour came over for a chat and asked if she could be blunt with me. I said of course she could and she explained that she had heard bits and pieces about me from both Dave and her husband but not enough to really understand. So I told her the bullet points version of getting from leukaemia to here. When this was over it just happened to be time for the married couple to have their first dance. Said maid of honour asked me if I wanted to try and join them with her. So she took me by the hand and for 25 seconds or so I felt normal. Turns out I even made some people cry. It was exhausting and, truth be told, it felt like I was just hanging on while she moved around but it was just fucking brilliant.

The bulk of the rest of the year has been me slowly getting better and better, with me taking as many people as I can out for dinner so we can catch up properly on what's going on in their lives as well as mine. I had one trip to the transplant clinic back down in Newcastle too and it went tremendously well. Everyone is amazed at my progress, not least the doctors who it certainly appears now didn't think I was getting out of hospital at all. I didn't do it to prove them wrong or anything but their surprise definitely added a little something. I'd be a liar if I pretended otherwise.

Most of my care is looked after by the respiratory team up here and I have a wonderful relationship with them. I have to get occasional bronchoscopies still but I don't mind that so much as I've had so many by this point. Chris jokes with me about this saying I'm not only the record holder but I'm going to start lapping people at this rate. I had my latest one just a week or so ago and everyone is happy with how things are looking under the bonnet. 

As quite a few people have phrased it I am the luckiest unlucky person on the planet. It's really hard to argue against that.

Being me I wanted to mark everything that has happened by, well, literally marking myself. I gave my tattooist an idea of what I wanted and he came up with something pretty much perfect for what I wanted. The Chimera is a creature from Greek mythology that is composed of three animals (traditionally the body and head of a lion, an extra head of a goat and the tail of a snake) and, because I now have three types of DNA, I felt that was appropriate so I now have a tattoo of something representative of that on my chest. We didn't fixate on the actual animals as it's a myth after all so let's not get too hung up on details and this is what I now have on the right side of my chest. Cheers Tim.

As fortune would have it this year it was my 40th birthday and the old cliché about how that being when life begins was sitting in my mind (the fact this is my third chance at it means I really have to do something with it I suppose) so I decided that I needed to make a big deal of this one and organise a party. Having had such a crappy birthday the year before it just seemed important. Having organised it and sent out the word to all manner of family and friends I then began to worry about who would and wouldn't turn up. It was two days before Christmas after all so quite a few people couldn't make it but an awful lot did and it was just fantastic. The last week has been pretty much perfect in fact and it's a very nice way indeed to conclude what has been an interesting year.

I know I've said on here before about the Chinese curse 'May you live in interesting times', well I could use a little boredom for a while if that's ok.

I know I still have a long, long way to go (I still have to use the wheelchair for long distances for instance) but at least I am heading into this year improving rapidly rather than the previous 8 where I was always declining.

I will leave you with a couple of videos from my party. I think they just about explain themselves.

Just as a final thought, a special mention must go to my mate Andy who has been on to see me almost every week even when it was clear that it was horrific for him. He's been a total hero.

I went through some nights consumed by the shadows

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.

Everyone has been burned before, everybody knows the pain

I'm still struggling to gather what I want to say about the transplant time itself but please humour me while I struggle to get it all sorted in my head. I'm always loathe to blame medications for my addled brain as I'm sure the overall trauma of the whole thing alone has been enough, but coming off the doses of opiates I have been on (as well as steroids which I think might be making me a seriously moody prick at times) hasn't been the easiest process on my brain.

I said a while back that I feared re-entry issues after 325 days of institutionalisation as an in-patient, and I think I can see the ways in which it has manifested. My mind had a lot of catching up to do with my body when things finally started going well and I don't think I coped with it as well as I could have. I now have the whiplash that I expected to show up at some point.

It's possible I'm repeating myself here but I can't be bothered going back to check. It seems that over the very nearly two decades now that I've been unwell to some level or other I have deliberately underplayed how much danger I was in at any given point. This was, to borrow from the psychologists for a second, my coping mechanism. It wasn't just to help my friends and family cope, but for me as well. That I chose to do so was a short term tactic that then became my modus operandi. Unfortunately when you choose such an approach it can lead to people not really realising when there genuinely is danger because you've spent so much time reassuring them that you'll always be fine.

Obviously that doesn't quite apply to the last year or so as it would be a real discredit to those who care for me to suggest that they didn't know how dangerous what I was undertaking was. Maybe each person's level of understanding differed but I think it's fair to say they all knew I could die at several points.

And now to the crux of things. I feel a bit lonely at times. I'm not actually very short of company but I do feel a wee bit isolated. When I stop and try and be rational about it this is almost certainly a product of being quite badly ill for most of my 30's and while all my friends were building lives and families I was being deliberately obtuse and pushing people away for fear of getting hurt myself. I absolutely do not want pity for this as it was my own doing but fucking hell it was stupid.

While my friends were building these lives they started to take on responsibilities that I never even considered and so, even though I have no doubt each of them would like to spend as much time with me as was the case back when I was diagnosed with Leukaemia, it just isn't logistically possible for them to do so. For a wee while there that was getting to me as people would have to cancel visits with little or no notice and my mind would go to dark places. Was I not worthy of their time? Were they choosing to do less depressing things instead? Then I had a Damascene moment of clarity. I'm not actually the centre of the universe.

I know, hard to fathom isn't it?

Before I got to that point though I had reached out to a few very old friends and vented my frustrations on the topic and they deserve an apology, mostly because I have no idea what was, or indeed is, going on in their lives. It was incredibly selfish of me to offload all my gripes and groans on them and I hope they understand the mitigating circumstances behind it. I'm not trying to excuse the fact I was being a bit hysterical but I was, for a while there at least, very scared about my future and I automatically went to the people I used to go to way back when. I have always preferred to go to friends than medical professionals at times like this as I've never been very well served on that front I don't feel, but it genuinely never entered my mind till recently that the burden I was maybe easing on me would then be bearing down on them, and that truly wasn't fair and I regret that now. Those who were on the receiving end will hopefully realise that I'm talking about them and take this mea culpa at face value.

For what it's worth I do feel I have turned a corner on this front recently mostly because I am strong enough now to get out and do much more. I am getting a lovely, steady stream of visitors and we are no longer restricted to sitting in my room but are getting out and about too, whether that be for meals or just down to the pub on an occasional Friday night. A lot of visitors are old school friends and becoming re-acquainted with many of them after my years moving around the country has been a bloody delight. There is always a brief period where I have to explain just what the fuck happened to get to this point but once that is out the way we have definitely reached the point where they get to talk about their lives just as much as I slabber on about mine. I think it was during one of these chats that I realised I was happier like that and not being 'the most important person in the conversation' that I started coping better.

I'll not name them but recently I met up with a few old friends that I hadn't seen in a very long time and it reminded me of a conversation I once had with a nurse about the 3 general responses you get from people, empathy, sympathy and pity. On this one day I got such a healthy dose of empathy that it really made me realise I didn't need to pretend with them on any front about what I had gone through. This empathy stemmed mostly from one person's familial experience and it allowed us to talk in the most conversational way I've managed to do so with almost anyone about some of the medical stuff outside my own family. Now obviously I would have preferred it if they had never had such experience to make these comparisons and ask such pertinent questions but I would be lying if I didn't admit it was quite liberating to. Having admitted though that I offloaded too much on some friends just a few paragraphs ago I don't want to make the same mistake and just offload on this person and possibly suffocate them. I do hope we can meet up again soon enough and continue to just chat away as it really was great.

Now I'm more comfortable with the idea that I can do much more the responsibility has shifted from other people coming to me to maybe me doing some of the stuff that I had forgotten how to do over the 8 years or so I spent in bed and show everyone that I am thankful for their roles in my life instead of focusing wrongly on whether they could have done more. It's my life and it's about time I started taking more control of it back.

I'm sure I will make plenty more mistakes over the next wee while in these attempts at my new normal but I hope everyone can see the honesty behind them. 

Take these lies and make them true somehow

I think this task is going to be even harder than I had thought. Day +1 onwards is so very hazy for me that I have to rely on everybody else's version of events as well as trying to put it together with the little bits that I can remember from flitting out of consciousness.

With this in mind I have started putting together a timeline of everything that has happened from Facebook status updates and the likes and I will spend the next wee while reading back over it to get the chronology right in my head before trying to make any vaguely insightful comments about it. Don't worry, in doing so I'm not going to avoid the less insightful ones - if anything has to be worthwhile about this as an undertaking it has to be about the truth of it all and not just some intellectual posing exercise. As such I'll warn you all now that, just as happened at the time, all dignity will be going right out the window. You're going to learn more about me than you maybe thought you wanted to but I just don't see there being a purpose in doing this unless you get the bare (arsed) truth.

Now even looking back on my post about transplant day itself tells us something important. My recall of events is not perfect; far from it. I have been absolutely sure that it was getting towards midnight when I got taken down for the main operation but it turns out it was only about 8 o'clock. I have no idea why I was so far out with that but it was certainly through the night that the main part of the surgery was done. One thing I do remember is being woke up temporarily in the recovery room post-op and having severe stomach cramps. Three full bed pans later the docs all commented that they had never seen anything like it in their whole careers, but it seemed the antibiotics that they used during the operation had obviously been a bit much for me and my body decided to just evacuate everything. Three full pans is, by some distance, a new record apparently. This has always been a side effect of antibiotics for me, just not on this scale. I don't remember much for the next few days after that to be brutally honest so lets rely on other people for that, which I will add to later.

One thing I'll say at this point though is that truth is elusive. What Janine put in her updates is what she felt she could share with everyone on any given day, and sometimes that was more positive than was actually true. Not often, but sometimes it was just too hard to write some of that stuff down. I've done it myself when I took over writing the updates. I'll sometimes put the best foot forward and fairly often will, through particular omissions, make out that I am getting on better than is actually the case at a given point. I get a lot of comments from people that they admire my honesty but they really don't know the half of it just yet. I'm hopeful that looking through the retrospectoscope I'll be able to really say what happened as best as I can. 

I do specifically remember 3 of the nurses who looked after me in that immediate time post-op. One big tall fella who just joked his way through the shift, another who was all business with me but was particularly careful with my mum (curiously always calling her mum I seem to recall) and another who took the time to just talk to me while cleaning me. I remember vividly that while I was being cleaned on one side she would stand at my head and talk to me about her preparations for doing the Great North Run. While she did this she would slowly circle her fingers on my arm so she wasn't just holding me stable but comforting me at the same time too.

There were other nurses looking after me as well but these were obviously in charge at times where I was completely sedated or I simply have no recollection of dealing with them but I could recognise that the family had well established relationships with them, which I found incredibly comforting. These folks aren't just there for the patient at hand after all.

For the first few days I remained mostly sedated and intubated. They did start taking chest drains out at this point though. I think I had four in and they took two out, which wasn't too bad at all. In fairness I was so wired to the moon on pain meds at this point that pain wasn't much of a problem in any regard but the removal of these drains was more about timing your breaths in and out than anything else.

Right, now I've started on this I will start doing it much more often as I have definitely found it rewarding but it has been exhausting today.

Speak soon my lovelies

Paul

And I'll dream of the things I'll do

Sunday August 28th 2016 began just like every other Sunday really. My mum would trot out to Mass while I lay in bed still, enjoying a good quality lie in. I had long since given up going to Mass as I had felt that good came in the acts of people, not divine intervention. It honestly wasn't some hysterical 'Oh I've got cancer, where is God now?' affair. I hate that sort of thing as much as I hate death bed conversions. Hedging your bets like that just offends me, and it should offend those with actual faith too. It was a long and considered decision for me. That said I do still like it when people tell me they pray for me, as much as anything because it helps them make sense of things and I would never wish to deprive them of that.

After Mass was over the mammy would return usually with one or more of my siblings and their kids in tow. My brother Mark's daughter Chloe would usually come up to see me and ask if I wanted a cup of coffee. This Sunday when she came in the phone rang, and I answered it, as you would. 

At the other end of the line was a transplant co-ordinator (not my usual one unfortunately) and she started the conversation with one of the strangest opening gambits you're ever likely to hear. She said "Paul, we have a set of lungs that are a match for you. Would you be interested in coming down?".

Would I be interested? 

It took me right out of the moment as all of a sudden it felt like a cold call for windows or car insurance or something. I had dreamt of this phone call for years and this wasn't really how it was meant to pan out. Then, quite suddenly, I snapped back to reality and said "Of course I would. What do I need to do?". At this point I said to Chloe to go and get her dad as this was very important.

The co-ordinator told me the ambulance was on its way and I'd probably have about 15 minutes to get ready. No time for a shower or anything, but that was fine as I'd need to get one down there in preparation for surgery anyway. So I got myself dressed and Mark got the last few things I needed for my travel bag ready. My 'pregnant lady' bag had been prepared for some time already. Then I just sat on the stairs waiting and sent a few emails and text messages to the people I promised I would let know in the event of this actually happening. I was remarkably calm. I think I was the only one. The chaos around the house had unfortunately upset Chloe a bit and so attempts were made to convince her that this was actually all good. She was still a bit teary as I left but she seemed to understand that it was ok. It was a lot for a 6 year old to take in really.

The ambulance arrived and the paramedics got me on board and as comfortable as you can be in those things. Mark went to get some stuff of his own and followed us down. I had the full benefit of the lights and mee maws when traffic got in the way. I had a light snooze for part of the journey and carried on sending messages to (and responding to) people for the rest of the journey. I know I'm repeating the point but still at this stage I was very calm. 

I feel I should explain that, at this point, things had not been going very well. Finally, after years on the transplant list, and the deterioration that came with it, I was getting a bit too close to the point where you can be removed from the transplant list. This happens when you're just too dangerous to operate on. I was very weak indeed. I had actually started thinking about how my life was going to end. Again, this was not hysterical but a sober assessment of how things were going at that time. I was scared I wouldn't survive another winter is basically the crux of it.

So I expected to be quite overwhelmed if and when the call came, but I just wasn't. Even arriving at the Freeman, where my life was going to change quite dramatically in the next day, I was just all business.

When I got there we had to go through nearly all the same tests that I had undergone at the assessment stage, just in case anything had changed, like liver and kidney function for instance. For those I had to get a venflon in my arm, which isn't always easy as my veins can be a little elusive. A few attempts though and it was in. I had an ultrasound on my heart and an ECG, which showed no problems at all. I did the lung function tests too, which were a much less rigorous version than those used at assessment thankfully. Then I did the walk along the corridor. All of these were to see if I was strong enough for the surgery, and everybody was very happy that I was.

All this took a bit of time so we were well into the afternoon and early evening by the time I got the shower I so dearly craved. Prior to that though I had to get my chest shaved, which was an odd experience that I simply hadn't thought of beforehand. Of course I would need it done but it just hadn't occurred to me. So that was done and then I got showered very slowly indeed and with hibiscrub to make sure I was as clean as I could be. I got my brother to take this picture just after I got out as a bit of a 'before' photo. This is pretty much what I feel I look like. It will be a long while before I look like that again, if ever really. Don't get me wrong, I know I was frail and very poorly then but at least I was physically just about well balanced and not hooked up to a million lines, tubes and monitors. 

At this point there was a lot of bureaucracy as several consent forms needed to be filled in. I spent a good time with the anaesthetist going over the procedure and it became obvious quite early on that, even though I had read voraciously on the subject when put on the list, there were things that I had simply forgotten as well as the fact that there had been advances in surgical techniques in the intervening time. One of the things that I had plain forgotten was that post operation there would be a sort of scaffolding structure in my chest post-op to basically hold my rib-cage together. Of course nothing was going to stop me going ahead with it at this point but I had to get my head around it all to give genuine informed consent. Almost everyone assumes that the surgery requires the saw cutting down the sternum to open up the chest cavity but what they do is called a clam shell incision. As the name suggest they literally open you up like you would a clam shell and get access to the chest cavity from underneath instead. There are many reasons for doing this but they don't really add anything to this story.

Now the operation was always going to be done overnight but it was at this stage that the actual surgeon arrived to make his displeasure known that a lot of the peripheral things for the operation hadn't been addressed yet. I actually found it terribly amusing to watch but I could also see why he was getting so annoyed as these things are genuinely time sensitive. I've always had an affable relationships with the cardiothoracic surgeons but it isn't warm by any stretch. I suppose they just don't (pardon the pun) operate that way. Once they've done the surgery and the immediate post care their job is done, and that is absolutely fine.

By this stage Mark had got his accommodation for the night sorted and I gave him the last of my personal stuff to keep and gave him the code for my phone should he have to contact anyone with it. I was wheeled along to the theatre suite just prior to midnight and I got myself from the chair onto the operating table where they went through all the same safety checks again to make sure they weren't going to slice open the wrong person. Then, after a short conversation with the anaesthetist, I started counting backwards and it all went black.

All my words come back to me in shades of mediocrity

I have been getting asked for a while now when I am going to start writing this blog again, specifically in regard to my experiences since I got the call for my lung transplant. This short post is to tell people that I plan to really get my teeth into it as soon as I finally get home, which I now believe to only be a few weeks away.The first post will deal entirely with the events of Sunday August 28th 2016. It was a bit of a day.

The reasons I never wrote it all up while it was happening are fairly simple. I genuinely wasn't capable. The first month or so post operation I was so frazzled by the assorted medications that I was on that I couldn't adequately communicate with people in the same room as me on even the simplest of levels never mind put my thoughts down in anything approaching a coherent form. I was, as they say, oot the game. I promise I will go into some of the details of this at a later date. Some of it is funny; other parts significantly less so, but I will try to address it all from the relative safety of the future. The very fact that I was so disconnected from reality for that initial period means that, for the chronology of events at least, I am pretty much entirely reliant on the Facebook updates that my younger sister Janine was writing about my progress. She is an absolute hero for doing that for me. What I'll be trying to do is put some meat on the bones of them and tell you lovely people exactly what and how I felt at the various stages along the way. I was also not helped by the fact that the Internet access in the ward I was in down in Newcastle was pretty much non existent and I could also barely get any phone signal when there either. All things considered I went into radio silence for pretty much the whole 6 months I spent down there. Even my closest friends were getting all their information about my progress second hand at best. It was far from ideal.

Now, since I've been feeling much better I have kind of taken over the reigns in regards to those status updates, and while I have had a lot of fun with them, they are also incredibly difficult to compose still. My brain is getting closer to a decent operating speed with every day that passes but trying to compose my thoughts on any single aspect of the last year of my life is still a bit of a struggle. Even just the few paragraphs that make up those occasional updates are written and re-written because I fret constantly about getting the tone of them right and that's what I want to make sure I have a handle on when I start writing these blog posts in earnest. I want to continue in the vein I hope I had managed before the transplant where what I wrote was informative and interesting but not too heavy on detail; light hearted but not flippant. I want people to know and understand just how serious this whole affair has been but also to show that it hasn't all been miserable. Even at some of the bleakest looking points in the course of it all there was a bit of light relief. I am warning you now that it will be brutally honest, simply because I don't know any other way to tell this story and retain its value.

I am hopeful that the very act of facing it all back in my head and then putting it down here will give me as much an understanding of it all as I'm hoping to impart on you folks. At the moment a lot of it is a jumble of incredibly mixed emotions and this really is the best catharsis I can imagine for that.

Right, that will do for now. I will speak to you all soon, I promise.

Pico P xx