No-one said it would be easy...

It's entirely possible I'm about to become what I believe they call a patronising bastard but forgive me my assumptions. I'm also probably going to be guilty of really crowbarring an idea in where a simpler and better explanation almost certainly lies. Again forgive me this but I have a lot of time on my hands.You see I've been thinking a lot about fractal geometry and my condition. They're particularly beautiful mathematical forms, as you can see below, but it's what they represent that I think is most interesting.

You see the thing about fractals is that at no matter what scale you look at them, they contain a repeating pattern. That is to say that if you zoom in on a particular area, you will simply see exactly the same pattern as you seen previously. This is, either depending on your point of view a symbol of increased simplicity or increased complexity. I'm not sure where I stand on that to be honest which is why I worry this analogy is a bit of a stretch. The reason that I mention this is because every single scan I get sent for these days seems to lead to the requirement that I be sent for another one because of what they found in the first one, and with this being the case I got to wondering whether that would actually be true for everybody. That we are all in our own quirky ways, kind of fractal in nature; that if you looked close enough at every human being on the planet with enough detail you'd find something that merits looking at in more detail. Yet when you do that you have to go into more detail again because of what you found and repeat ad infinitum.

Scientifically I also let my mind wander towards the idea that the more we analyse something and find answers, the more questions we invariably raise for future generations to study. We are the giants whose shoulders future generations will stand on and see farther (this is a massive overstatement of my part in the realm of science but I liked the thought behind it). I look at my T-Shirt with the Rutherford model of the atom (like the geek I am) and think what complexity we've unearthed in the relatively short time since he found out that atoms were mostly made up of nothing with a tiny wee solid bit in the middle. We've gone from there to muons and leptons and hadrons and the like and we'll no doubt find even greater complexity the more we look. Maybe that was a better analogy I was looking for now I come to think of it. 

The reason for this bout of navel gazing bollocks is that the relatively straight forward final fecking step in the extensive spectrum of tests that I've endured in the pursuit of a new set of lungs has turned out to be not so simple at all. The CT cardiogram revealed what they call a pericardial effusion which is fancy talk for saying there's a 2 cm long pocket of liquid in my pericardium, the sack that surrounds and protects your heart. Now this might be absolutely nothing and I'm worrying about fuck all but it could just as well be something, and that eats at my brain. I don't like not knowing things. I can only praise the docs involved because as soon as they found out about the effusion I got sent the same day for an echocardiogram which gives an ultrasound image of each part of the heart. I also only have to wait until wednesday to see the cardiologist to hear what they think which is an astonishingly rapid response from a clinic that I know is always packed because it's across from the respiratory clinic I go to. It might only be down to a virus or the chest infection that I'm still carrying about weeks and two courses of antibiotics later, but again I get to thinking it might actually be something and that's what led me to this musing on whether anyone would actually pass completely through the level of scrutiny I've gone through. I honestly think if you look hard and long enough at everyone you'll find a fault and I don't want to be ruled out of transplant because of mine.

I'm tired of being poked and prodded and stabbed with needles. By the end of the week it'll be three years since I walked into the hospital in Liverpool and it all went catastrophically awry for me and I'm feeling rather sorry for myself. I hope you'll pardon me for that but I think I've bloody well earned it.

Kiss me like a final meal

I've had a very busy few weeks. I've had lots of visitors, pretty much exclusively old school friends funnily enough, some of whom I see fairly regularly and others where it's been years, so it's been absolutely marvellous catching up with wherever their lives have taken them. It's a delicate balancing act because the ones you see most often you can just have a casual chat about what the latest goings on are in my pursuit for a new life before lapsing into talking about whatever comes up, like you would in any normal conversation. With the ones you haven't seen for a lot longer though you have to go through the whole story stretching back almost three years and it can be quite a tedious process going over it all again but I've got the story down so I could tell it in less than ten minutes now and still have time for questions.

There's always a worry in my mind that people will be really taken aback by the nasal canula I have on permanently to feed me oxygen but nobody seems at all arsed by it. I sometimes fret that my nieces and nephews take it all so much in their stride because I don't want this to be the norm for them. I want their thoughts of their Uncle Paul to be of the funny one who comes back home at holiday times and who tells them wildly inappropriate stories about their parents and who showers them with gifts. I don't want them to be the ones who pretend that they need to go to the toilet every half hour just so they can check and see that Uncle Paul is ok upstairs in his room as I recently found out my 7 year old nephew Daniel does. I only found out because I asked his mum if he was ok because he was going to the toilet all the time and she let me in on what he was up to. Now does that not just make you want to burst? It absolutely breaks my heart that I cant go out and play with my two nephews as both Daniel and Ewan are at such an interesting age that I could have a whole load of fun with them, predominantly by acting like a child. I don't want their memories of me of being in bed for years with tubes to help me breathe.

Getting back to the point, visitors are great but even on the reducing dose of immunosuppressant drugs I'm on I don't have the strongest immune defences so I've spent the last couple of weeks coughing up some nasty looking green stuff, but thankfully it seems to be clearing now. It could have been any one of the visitors I had that were just carrying something that a normal immune system can deal with easily so they would be none the wiser. Anyway, it's better feeling a bit rough for a couple of weeks and getting visitors than just living a solitary existence and being totally infection free. I think if I was to be too strict with people then I would never get any visitors at all and I'm not keen on that as an idea. A single visitor can perk me up for days afterwards so I'll take as many as I can get.

On the medical side of things, after my last trip to Newcastle and the long wait for the positive results, I was to be sent for a contrast CT angiogram so they could see if my heart was in good enough shape for the surgery required for a transplant. This was just a precautionary check because my family's cardiac history isn't very good, but as I'm only 34 nothing was expected to show up, it was just a final hurdle to jump through. 

Well I had it on monday and they had real trouble slowing my heart rate down to a level where a scan would give them useful information (my feeble lungs make my heart work overtime). I took dose after dose of beta blockers and eventually they got it low enough for the scan to take place. The first part they could report back to me immediately and that was to say that there is no plaque in my blood vessels or the heart to worry about but I won't get the full report back until it's looked at by the consultant radiographer. So, I may hear something when I go to the Beatson this coming monday but it's more likely that I'll hear from Newcastle as it was them who referred me for the scan so the results will be reported back to them.

Whenever they get in touch again with the results I've to go down and between the whole transplant team we'll decide what course of action for me is. They're satisfied I could cope with the surgery, the drug regime and the psychological aspects of it all, mostly because I've been through something similar before, so the only question now is do I really want to go down a path from which there is no turning back? At the moment I have some sort of life so is it worth risking that for the chance to get a shot at a new life that, for any number of reasons (like rejection), could fail and would almost certainly in that instance lead to my death?

Just as with the Bone Marrow Transplant all those years ago it seems a very easy choice for me to make.

I do have a life right now but I could have a more complete life if I get this chance so it's a very obvious yes from me.

After all, I've been promising all these visitors that I've had that I'll visit them when I'm well and I can't renege on that now can I?

I like to tiptoe round the shit goin' down

Well when things do start happening they do seem to gather pace quite quickly. When last we spoke I was telling you that even though my kidneys had come through their stress test with flying colours my family's colourful cardiac history meant I had to go for an angiogram to make sure my heart would be strong enough to cope with the rigours of a lung transplant operation. This isn't expected to be an issue as I am, besides the obvious stuff, a relatively strong, young man.

So it was quite a surprise when I went for my monthly trip to the Beatson for immunoglobulins yesterday that I was told that I have an appointment in a fortnight (Mon 16th) at the Jubilee Hospital for the angiogram. I have to take some medication on the previous day and the morning of the scan itself to slow my heart rate right down so they can analyse it more accurately. My heart rate is particularly fast because my pathetic lungs need to work so hard to get oxygenated blood into the body, so the heart beats quickly to manage this. The two weeks will pass in no time and hopefully they'll be able to tell me on the day whether anything has shown up and that's it; the final hoop jumped through. Then I need to go back down to Newcastle for one more stay where we decide on how to proceed. 

There was all sorts of bureaucratic nonsense in the hospital yesterday with my immunoglobulins not arriving despite being ordered and someone having to go over to the sister hospital Gartnavel to get some from them and then them not letting the nurse get them till they actually had all the paperwork in hand as well as the electronic order. So I was sitting twiddling my thumbs for a bit but they got there eventually. We've found that I don't take any bad reaction to them over time so rather than slowly ramping up the rate of infusion we just put them on full speed from the start, which was just fine. That was good because it went so much faster and we were already running a bit late for my Uncle Stephen to pick up Stephen Jr's fiancé to take her to the dentist. We got back just in time thankfully, or I'd have felt terrible.

One thing the nurses told me yesterday was just how much each dose of immunoglobulins costs and it turns out I'm costing the NHS a fair old bit. It got me thinking about how much I've cost over the years simply keeping me alive. It's a good thing I plan to be a public servant the rest of my days so I can try and make it worth their while going to all this effort.