Sunday 23 December 2012

The retrospectoscope

It's the time of year where people have a wee look back at what the last year has held for them and begin to wonder what will be in store for them in the next. I'm no different from anyone else but it's especially so because today, the 23rd, is my birthday. I'm 35 today.

I'm not just looking back over the past year but that's where I'll start. It's been a year where I feel I've aged about 5 with the stress of going through all the tests to determine whether I'd ever get put on the active transplant list and then to have the relief of the phone call telling me that was me on the list and it was now just a matter of waiting and staying stable until the day comes and it's my turn. I've had a lot of visitors recently who have said that they are absolutely sure next year will be a good one for me. I'm too pragmatic to let myself get carried away with that but the fact that people are talking in such a way tells you that the overriding emotion in the air at the moment is that of hope and I'm not going to rob anyone of that feeling. I've also been on the receiving end of some fairly barbed comments about just how healthy (fat) I'm looking these days. I'm actually the same weight I was at 20 but back then it really was all muscle and no fat and now the reverse is true because I simply don't have the breath to exercise. The folks that have been in visiting remember only too well how ill I looked when I was so seriously underweight and in a very bad way so their visits are much easier on us all now thankfully.

When I start to think back further than just the last year it actually kind of amazes me the way my life has panned out. When you're a teenager you want to be part of an identifiable group but then when you go to Uni, in my experience at least, you want to stand out from the crowd in your own way. Mostly this leads to lots of people trying too hard to be different and all ending up pretty much the same caricature of the introspective student type. According to my peers at the time I genuinely did stand out. This is something that has been repeated throughout all my education and jobs. For such a wee fellow I leave a bit of an indelible mark on people apparently.

I mention this because as well as telling me I'm looking well people have been telling me that they're still amazed at how I've dealt with everything that's been thrown at me so I've been going back over it all in my head to see if I did in fact do anything special. I've always felt that the Leukaemia diagnosis was shaped not only by my own pragmatism but that of those surrounding me. It was the response of my closest friends that allowed me to deal with it as well as I did. I'm honest enough to admit I did handle it better than most would have, but like I said, it was only because of those I had around me making it easier.

The other thing I've been thinking about is the steady decline in my lungs over the nine years or so between the Bone Marrow Transplant and whether I could have done more with my life in the time before my lungs failed completely in 2009. I look back now and can see all these little pointers that I ignored along the way that signalled that my lungs were still being attacked by Graft vs Host Disease. My years in Aberdeen I can now think of in terms of how difficult I found walking up the hill to the GP. After I left there to go to Belfast I went to meet the respiratory team at the hospital and they kept me in for a night because they couldn't believe I was operating normally with blood oxygen saturation as  low as mine was. So maybe with sheer force of personality I was getting more out of my life than I really had any right to. It's either that or I was pushing myself too hard and a fall was in the post. I got my answer exactly 5 years ago to the day ago. I was meant to meet all my friends for our Christmas meal and I went in to Glasgow to meet with them and very suddenly found myself very ill indeed. I couldn't get any sort of breath and had to phone my brother to come and get me to take me home (More on this story later). You'll notice I said home and not hospital. This is because I am, and always have been, a bit of an idiot and will put off hospital as long as is humanly possible. I had a terrible time over Christmas that year with a chest infection but I did get better but it wasn't long before I got my next reality check. In the following January an old friend from school got in touch and I arranged to go over to England for a weekend for a visit. I collapsed on the plane mid-flight and had to be taken off the plane by an Ambulance crew who only let me go under supervision after an hour or so of checking I was ok. A cold allied to the pressure change in the cabin was apparently a bit too much for my wee body to cope with. A weekend of very light activity then reassured me that I was ok but being honest I was really kidding myself on. 

Over the rest of that year I found tasks harder and harder and looking back I truly have no idea how I thought I could cope with the move to Liverpool and the rigours of doing the teacher training course I wanted to do. Not only did I manage it but on one of my placements they took me on for taking night classes in A-Level Chemistry. I was pushing myself really hard and it is only through blind luck that I got so far into the course before my lungs failed. I had been feeling exhausted almost permanently and blithely put it down to the course rather than my health. I got a bit of a rude awakening with the fungal pneumonia and it's been a waiting game ever since.

I used to think that I had been robbed of a large chunk of my twenties through my various health issues but looking back through it I did a lot more than a lot of people who had no health problems did and have to give myself credit for doing that. I know this whole post has been a bit self promoting but I'm coming to terms with just how amazing the life I have led has been. 12 years post transplant and with laughable levels of respiratory function I'm still confounding doctors and that has to be celebrated. There's an old Chinese curse that goes 'May you live in interesting times' that I love for it's acidic tone. Well my life has certainly been 'interesting' and myself as a student starting out couldn't have asked for more than that.

You'll remember I said earlier that there was more to the story of me missing my 30th birthday meal. Well that meant that my younger sister Janine changed her plans and went out with her own friends instead and met up with an old school friend, Tony. Well they started going out and today, exactly 5 years later, he proposed to her and she said yes so I have a wedding to hopefully be better for next year. They kind of stole my thunder on my birthday but I genuinely couldn't be happier for the pair of them.

Monday 10 December 2012

I know the equilibriums there

See everything I said in my last post; that and more. That is to say that using the nebuliser (with saline solution) and the flutter device to help clear my lungs of the nasty things that normal people just breathe in and out is continuing apace. When sitting at rest I can get my blood oxygen saturation level (sats) up to 95% now where before it was a pathetic 85%. To place this in some sort of context a normal person will be near 100% oxygen saturated in their blood. Once when living in Belfast I went to the respiratory clinic and they found that my sats were 95% and kept me in overnight because they didn't believe that someone could be walking about casually with sats that low. That's the sort of level you'd get with a patient with a chest infection of one sort or another so they wanted to check I was clear even though I felt totally fine. The fact is my lungs were slowly decreasing in function but doing it at such a slow rate that my body was acclimatising as it was happening.

So what does this increase actually mean? Well the first thing it does is make me look healthier. The more oxygenated your blood is in your veins the more red the blood is and if there are veins close to the surface you have more colour about your face. That, allied to remaining at a perfectly healthy 60kg means people keep commenting on how healthy I look, in spite of the facial furniture of the the oxygen tubes. I performed a little experiment to satisfy my curiosity and didn't use my PEG tube for overnight feeds for four weeks and actually gained a pound so I'm obviously doing well with meals. I'll keep the PEG tube though for those times when I'm completely off food, which happens as soon as I feel even slightly unwell.

Let's place this in context though. These sats are while I'm sitting about doing nothing. As soon as I try to do anything even mildly exerting the fact that only 16% of my lungs are fully functioning kicks in and my sats plummet as I quickly go into oxygen debt. So while my newly improved oxygen level has allowed me to go out more often I do still feel quite weak at times.

On that note it being Christmas time my old school friends and I went out last week for our annual Christmas meal for the 17th year running. We've done it every year since we left school and normally we wait until the 23rd (my birthday) as that allows more people who live away from home to get back for it but it just wasn't suitable this time so on Saturday the 1st we went out for a bit of a meal and drinks. I also had friends up visiting from my time doing my PGCE in Liverpool up so they came along for dinner as well. I sat with them trying to catch up on everything that's going on. One of them was also a friend from my time in Belfast, and indeed put the idea of going to Liverpool to do the PGCE in my head so I've known her for a good few years now. She got married earlier in the year to one of the other guys from the course who was also up and it was gutting that I couldn't go back over the water for their wedding but they got to tell me all about it. The third visitor was one of my best pals from the course so it was really great to catch up with them all. 

I'm going out with the school guys again just after Christmas for drinks which should be great if I'm up to it. I've been so well, relatively speaking, for so long now that I'm becoming quite comfortable in the wait for lungs. No longer am I fretting about how soon it'll be because I seem to be relatively stable so the people in charge can wait for the best possible match they can find.