I've had a pretty good couple of weeks and I wanted to go over it a little. Having thought of doing so I realise that, in recent times at least, I have been guilty of editorialising. It's not been by design but I realise I have definitely been more inclined to put fingers to keyboard when positive progress has been made than when there has been anything negative to report. It's not dishonest exactly but neither is it completely honest either.
When I was in the midst of the worst transplant related stuff I did try and report on the troughs as well as the peaks, albeit I recognise now how coldly scientific I was in reporting that stuff whereas I allowed myself to be much more emotive when any positive stuff was happening. This is only human nature and I'm not berating myself for it. I just thought it was something worth addressing.
To that end about 3 or 4 weeks ago I had the first real setback in a long while. To that point I had a slow but meaningful upward trajectory in terms of getting stronger and fitter and then, quite suddenly it felt like it was undone. I got a chest infection. Nothing too dramatic for what it's worth (a course of antibiotics eventually did the job) but the first few days I felt as weak as water and then there was a period post infection where I felt like I had taken a massive step backwards. Not only was I not capable of doing anything remotely like my physio but the everyday stuff of just getting about the house was difficult again. Looking back on it now I can rationally identify that it was really no worse or dangerous than if any normal person got a similar chest infection but that it just takes me a little more help and a bit more time to get over. When you consider the winter we have gone through, that I have had this infection and one more mild cold in about December then it really is quite remarkable.
The main annoying thing for me though was that the timing of it meant that I had to miss the wedding of an old school friend, and I was bloody furious about that. We have only been in touch again for a short while but I was really excited to go to her big do. She, having family that have undergone a lung transplant, understood completely and was simply concerned for me but that only served to bother me more as I wish she didn't have to. That's my problem though. Even though things are so much better in my life now I have to acknowledge that my new normal will still contain these odd times when I have to miss out on things, even when I am desperate to do them. I have to be smart about these things and then not let it bother me when I have made what is actually the right decision.
Anyway, somewhat belatedly getting back to the point, I'm feeling as good as I can remember in a very long while. The timing of this recovery was particularly good considering just how busy a week I had last week. On Tuesday I was in doing some clinical research study work with the respiratory team, on Wednesday and Thursday I was down in Newcastle for my quarterly transplant clinic visit, and on Friday I was in the leafy west end of Glasgow for a trip to the dental hygienist.
I've mentioned before that I try to help in any way with research stuff. I enjoy it massively even if most of the time the things that I'm helping out with are much more likely to help other patients much more than they will me but someone had to have that same thought process decades ago for the treatment I get now so it just feels right helping out. As has been pointed out to me by a few folk 'nobody is completely useless, they can always serve as a bad example'. That idea alone has led to some interesting conversations with doctors about how we only really find out how anything in the human body works when it breaks down. If everything is working fine it's actually quite hard to get a glimpse as to how it operates but if something goes wrong, and you can identify it, then you immediately have a better understanding of how it operates in normal conditions. I have mentioned the study I was in for on Tuesday before - it involves a new piece of equipment which uses electrical impedance to give a detailed, real-time picture of how the lungs are actually functioning. This is the machine that reduced every consultant who came to see it in action to uttering a single word: cool.
And it is. To be able to actually see what is going on visually rather than taking plots and calculating things is not only psychologically a massive step but the quality of information that can be gleaned from it is amazing. The doc could tell me, for instance, that there were obvious indicators that I had indeed recently suffered from an infection and was healing appropriately. It's not exerting at all - it involves having a belt with electrodes (and conductance gel) wrapped around your chest, just at the diaphragm, and you lie and breathe normally and it really does all the work.
Here's a couple of pics of what you get from it
As you can see you do still get the plots (you can see me breathing in and out just from the peaks and troughs on them) that can be used later to calculate all sorts of things but the amazing thing for me is that picture that I have expanded for the second pic. This is what I am talking about with respect to real time pictures of your lungs in action. It shows a remarkable amount of detail if you know what you're looking for, which is admittedly beyond my abilities, but the good docs tell me you can see the part of my right lung that doesn't inflate fully still as well as even being able to tell where the stent that is in my trachea is quite precisely and whether there are any growths around it. The docs are especially interested in what my pics look like pre and post bronchoscopy so have looked at that before but as they only had a short period with the machine this time we didn't have the opportunity to check that out again.
I am going in for a bronchoscopy in a few weeks again just to see how things are looking inside and the night before I am having a sleep study done. There is a thought that I might suffer from sleep apnoea so this will hopefully show whether this is the case. That both are getting done on consecutive days shows an excellent level of joined up thinking by the team at the hospital.
On the Wednesday my brother and I went down to Newcastle ahead of my trip to clinic first thing on THursday. We have now found a B&B which is right next to the hospital and is also right next to a really nice wee pub that does excellent food too. After we arrived we went out for a bit of food and to meet a few friends who live down there. As well as friends from my time doing teacher training I also try to meet a few of the nursing staff from my time as a patient down there, but that is always dependent on shifts and things.
Clinic went really well again. A few very minor issues arose but nothing terribly marked. The first of which is that I have developed a small hernia right where the scar for my PEJ feeding tube was inserted. It doesn't bother me and isn't painful at all so nobody really wants to bother with it as opening me up to fix it would almost certainly cause more problems that it would fix. I am perfectly happy with that. The second thing is that I have been getting some occasional pain and discomfort in the kidneys. Now my kidneys got damaged not only by the radiotherapy I had for the BMT but also the many, many drugs I take now do a biit of a number on them (especially the immunosuppressant cyclosporin) so we are always doing a bit of a balancing act of giving me enough immunosuppression to avoid rejection but not to damage the kidneys beyond repair. To that end we actually reduced my dose of cyclosporin slightly but we also took a look at my entire repeat prescription to see where else we could lose things that perhaps aren't needed any more. The obvious ones are pain medications, which I have been addressing myself anyway and stopping slowly as most of my pain was muscular anyway and exercise has helped massively on that front. A few other things have been stopped and doses of others have been altered too and even just a week later I can already feel a difference in that there isn't even a slight twinge in the kidneys on either side.
Having mentioned the recent infection the doc said that I now need to take a different approach when I feel such a thing manifesting. I used to keep a store of a specific antibiotic and start it straight away. This was a fine approach pre-transplant but having taken it for a number of years (and therefore risking bacteria being resistant to it) and there now being more concern post transplant I have now to call the transplant team at the slightest hint of an infection. This was perhaps a much needed reminder that we can't fuck about in these instances and I can no longer just self medicate my way through these events but need a proper going over by the team of doctors who really know what they're doing.
Chest X-ray looked much better and breathing tests also showed a marked improvement which I felt myself anyway.
The real thing to take from this visit to clinic though was the nature of the consultation with the doctor. He was one of the docs I saw regularly when I was down there on the ICU ward and was one of the ones I got on best with. With the greatest will in the world there are a few of the doctors in that department who are not blessed with communication skills - possibly a by-product of about half the patients being sedated and even more being unable to communicate with them - so they often huddle at the end of your bed when on rounds and don't talk directly to you at any time. This doc wasn't one of them. In fact he told me that he often sat next to my bed on night shifts worrying that I wasn't going to make it as I was fighting on so many different fronts at once. He kept repeating himself just saying 'You've got some fight in you'. I hear people say things like this all the time and I usually tend towards thinking everyone would fight just as hard if they were in the same situation, but hearing such things from an experienced doctor does give you a little pause for thought that you might actually be a little bit inspirational. In fact when I went up to the ward to say hello and drop in some shortbread that was the word that all the staff there kept using. I've said on here before that I don't get to be the one who decides if I am indeed inspirational. That I don't really feel it doesn't matter - it's what other people perceive in that instance that defines it. Being honest it is actually lovely to hear.
Before heading back up we had a bit of lunch with another couple of the nurses who had looked after me, which was fantastic, and then a lovely wee run up the road. I barely even fell asleep this time.
The journey and the exertions of the clinic meant I slept a little longer on the Thursday night but I had an appointment with the dental hygienist on Friday and it was at an unfortunate time that nobody could drive me so I decided it was time to make a go of public transport. The train drops me just at the hospital but the walk from the station to the hospital itself is further than I have walked in a very long time indeed. I decided it was worth a try and if I was struggling my brother said he would come and bail me out. I made the 400-500 metres or so in about 23 minutes with 3 stops along the way. Those who see me most often see me do very short distances just fine and then recover but this was a bit different. I did manage it though and also managed the return journey. My legs were properly screaming at me and I was out of breath but my recovery each time I did have to stop for a break was very pleasing. The hygienist was amazed I was there on my own, which also felt fantastic to hear. Both her and the dental nurse were so pleased that my progress was so very visible.
I have been back on the rowing machine and am improving on that on a daily basis as well. There's all manner of criteria on the little computer that I can use as a measure for that progress so it's been an absolutely tremendous purchase.
The other day I even picked up a guitar for the first time in forever as I felt like the tremors that have held me back from doing so since transplant are finally subsiding and managed to have a little go at some of my favourite practice songs just to get the fingers moving. It was a struggle, as it would be ffor anyone who hadn't picked their guitar up in nearly two years, but the tremors mean my fingers don't go exactly where I want them to so it is that little bit harder. That I could play something vaguely recognisable felt brilliant - the tremors even give a bit of a vibrato that wasn't present before. I'll take that.
Back to the original subject of editorialising I hope that what anyone takes from this ramble is that, while I can manage a lot more now than I could, there is still a cost to them. I may look much healthier (and I am) and look like I can manage most things that normal people do, I am a very long way from being able to get somewhere near a normal life. That doesn't bother me except at those points where people don't seem to understand just how long this is going to take. I have no idea what my eventual limitations will be or what I will even be able to do with my life just yet so unfortunately it just becomes infuriating when that is one of the first things people ask me. I know it comes from a caring place so it's not the person that bothers me as much as the question, if that makes sense.
Oh aye, just before I went out for the clinical trial stuff last Tuesday my old parish priest chapped the door to see how I was. Despite having not been religious myself for some time I have always loved that those who are take the time to pray for me so for the Monsignor to arrive in was just lovely. That we spent about as much time talking about Celtic as about my health is entirely consistent with how things were back when I was an Altar boy for him. My name is no longer on the sick list on the weekly bulletin. This feels like progress in some way too.
The real thing to take from this visit to clinic though was the nature of the consultation with the doctor. He was one of the docs I saw regularly when I was down there on the ICU ward and was one of the ones I got on best with. With the greatest will in the world there are a few of the doctors in that department who are not blessed with communication skills - possibly a by-product of about half the patients being sedated and even more being unable to communicate with them - so they often huddle at the end of your bed when on rounds and don't talk directly to you at any time. This doc wasn't one of them. In fact he told me that he often sat next to my bed on night shifts worrying that I wasn't going to make it as I was fighting on so many different fronts at once. He kept repeating himself just saying 'You've got some fight in you'. I hear people say things like this all the time and I usually tend towards thinking everyone would fight just as hard if they were in the same situation, but hearing such things from an experienced doctor does give you a little pause for thought that you might actually be a little bit inspirational. In fact when I went up to the ward to say hello and drop in some shortbread that was the word that all the staff there kept using. I've said on here before that I don't get to be the one who decides if I am indeed inspirational. That I don't really feel it doesn't matter - it's what other people perceive in that instance that defines it. Being honest it is actually lovely to hear.
Before heading back up we had a bit of lunch with another couple of the nurses who had looked after me, which was fantastic, and then a lovely wee run up the road. I barely even fell asleep this time.
The journey and the exertions of the clinic meant I slept a little longer on the Thursday night but I had an appointment with the dental hygienist on Friday and it was at an unfortunate time that nobody could drive me so I decided it was time to make a go of public transport. The train drops me just at the hospital but the walk from the station to the hospital itself is further than I have walked in a very long time indeed. I decided it was worth a try and if I was struggling my brother said he would come and bail me out. I made the 400-500 metres or so in about 23 minutes with 3 stops along the way. Those who see me most often see me do very short distances just fine and then recover but this was a bit different. I did manage it though and also managed the return journey. My legs were properly screaming at me and I was out of breath but my recovery each time I did have to stop for a break was very pleasing. The hygienist was amazed I was there on my own, which also felt fantastic to hear. Both her and the dental nurse were so pleased that my progress was so very visible.
I have been back on the rowing machine and am improving on that on a daily basis as well. There's all manner of criteria on the little computer that I can use as a measure for that progress so it's been an absolutely tremendous purchase.
The other day I even picked up a guitar for the first time in forever as I felt like the tremors that have held me back from doing so since transplant are finally subsiding and managed to have a little go at some of my favourite practice songs just to get the fingers moving. It was a struggle, as it would be ffor anyone who hadn't picked their guitar up in nearly two years, but the tremors mean my fingers don't go exactly where I want them to so it is that little bit harder. That I could play something vaguely recognisable felt brilliant - the tremors even give a bit of a vibrato that wasn't present before. I'll take that.
Back to the original subject of editorialising I hope that what anyone takes from this ramble is that, while I can manage a lot more now than I could, there is still a cost to them. I may look much healthier (and I am) and look like I can manage most things that normal people do, I am a very long way from being able to get somewhere near a normal life. That doesn't bother me except at those points where people don't seem to understand just how long this is going to take. I have no idea what my eventual limitations will be or what I will even be able to do with my life just yet so unfortunately it just becomes infuriating when that is one of the first things people ask me. I know it comes from a caring place so it's not the person that bothers me as much as the question, if that makes sense.
Oh aye, just before I went out for the clinical trial stuff last Tuesday my old parish priest chapped the door to see how I was. Despite having not been religious myself for some time I have always loved that those who are take the time to pray for me so for the Monsignor to arrive in was just lovely. That we spent about as much time talking about Celtic as about my health is entirely consistent with how things were back when I was an Altar boy for him. My name is no longer on the sick list on the weekly bulletin. This feels like progress in some way too.
