If December was a great time to look back on what had been an 'interesting' year then January should allow me time to wistfully muse on what the year ahead has in store for me.
One thing utterly dominates obviously - whether I receive the call for the lung transplant. The average waiting time for this is between 12 and 18 months and I've already been waiting 6 so if the law of averages does its thing then it should in fact be this year that I get the call. This was the opinion of most of my friends I met throughout the holidays too and while that is borne out of hope rather than rational analysis the idea appeals to me. I don't want to go through another full year of waiting. I'm 35 now after all and I'd like to get back to something approaching a more normal life. I know that my life will never be 'normal' but something approaching it would be nice.
I got a little bit of an infection over Christmas but it seems that I can recover from such things much easier than any point in recent memory, which is great. If I could go through the whole year with only these mild infections I would be a very happy man indeed.
One new thing that has come up is that I responded to an appeal from the press office of the transplant authorities to send them your story of transplants. Having had one and being in a holding pattern for another I felt my story might be worth telling, so I sent a brief synopsis (not easy for me) to the press officer who has got back to me and said that they would love to use my story in some way, whether that be in the media raising awareness of transplant donor lists and all that encompasses, or working in unison with the Scottish Parliament to do the same. I'd be thrilled to get to do this although logistically I'd need help with the oxygen for whatever they may require me for.
I've always been keen on sharing my experience, as this blog alone shows, but it's not the only way I use my experience to aid others. I've given lectures to medical staff before about what it's actually like to be in the patient's bed throughout the whole process of diagnosis to treatment to post treatment care with very enthusiastic responses. I also get used any time I'm a patient in the wards for some reason. Registrars are always keen to use me to help train the medical students as I am very relaxed with them and usually put them at ease. I can even prompt them in the right direction should the situation arise that they need a helping hand. Once, in Liverpool after the registrar in charge had half a dozen students go through their paces with me, one of them broke off after the session to have a much more informal chat about my history and what I was going through at the time as they had never seen anything like that before and it was refreshing to have someone so comfortable talking about what they had gone through in terms of medical procedures as much as what they went through emotionally. It turns out that as soon as something is over a lot of patients choose to forget as much as they can about the grim things they've endured. I'm not like that apparently. It seems I'm too interested in the whole process to forget anything really, even with my somewhat fuzzy brain.
I was thinking about my fuzzy brain the other day. Your brain uses 20% of the oxygen your body takes in just to keep going. Whilst I only have 16% of my lungs functioning fully I still manage to get over 90% oxygen into my bloodstream, but even then I feel that I'm not working at full capacity. Not even close. I've said before that my body is working in an oxygen debt situation not that much different from altitude sickness. In that situation the first thing that shuts down (to preserve oxygen for your brain) is your stomach which is why mountaineers are sick above a certain altitude with low oxygen. After that they start to feel disorientated and that I feel is what I suffer from. Of course I've been that way for three and a half years now and my body is so used to the oxygen debt that I'm no longer sick all the time but I can't get away from the fact that I feel confused some of the time and will often lose my stream of consciousness midway through a sentence. For someone who holds great stock in his ability to try and get a point across it's a truly awful affliction. There's nothing I can do about it till I get new breathing gear though so I try to not get too tetchy about it.
There was a program on BBC1 Scotland last night about what are referred to as orphan drugs, which are highly specialised drugs for very specific cases that have different guidelines for use (and therefore cost) than normal, everyday medications. One of those mentioned was Imatinib (or Gleevec) which is the drug of choice to treat CML, the form of Leukaemia I had. It essentially renders CML a condition that you just live your life with, constantly treating it as you go (like type I diabetes for instance). This is a real point of contention for me as I think drug companies should be searching for cures rather than making customers for life with their incredibly expensive products. It brought to mind a conversation I had with two of my sisters (both nurses) the night before about how much has been spent on keeping me alive so far. In all honesty if the transplant team in Newcastle had told me "Sorry, you've had enough spent on trying to keep you alive already" I honestly couldn't have argued against them. Thankfully for my sake that's not how they do it but I know that I've already been incredibly lucky to have had the treatments I've already gone through as they are mind bogglingly expensive. I'll never be able to pay it back in tax and national insurance in my lifetime but that's the greatest thing about this country, we have a cradle to grave health service that helps those the most in need. It's not perfect; far from it, but from this patient's point of view it is absolutely peerless.
