Just when you're thinking things over.

I got out the house the other day to go to the cinema. It makes a massive difference to get out and do something that has nothing to do with hospitals. I went with my brother and my friend Stephen to see the film Prometheus. The three of us are big Alien fanboys so we were genuinely excited to see it and it didn't disappoint. It turns out the persistent chest infection I had last month was a full blown pneumonia so it's a good thing the antibiotics we picked to treat it was the correct one. Taking a tablet every day is infinitely preferable to having to stay in hospital and get IV antibiotics. These particular tablets don't make me feel as sick as some can either so I was very lucky all things considered. Not long ago a friends sister died from pneumonia and it serves as a reminder of how lucky I've been on that front. So I have a couple of weeks till my next monthly trip to the Beatson Oncology Centre and then it's only ten days till I go to see the transplant team in Newcastle again. They need a repeat bone density scan done but that shouldn't hold me back from going on the active transplant list.

Don't you sometimes wish your heart was made of stone?

Nothing is happening right now. I am filling the tedium with the massive backlog of films and tv series I have recorded though.

That's not to say I have nothing to tell you but right at this moment I am just waiting.

So what is it I have to tell? Well the final hoop has now been successfully navigated, although I did make rather heavy work of it.

The pericardial effusion that was found on the contrast CT scan of my heart was indeed viral so the week or so between that first CT scan and subsequent echocardiogram saw it shrink from 20mm to 0.6mm suggesting it was indeed just something viral that had caused it and it would clear itself up completely of its own accord. Considering the needle they use to drain these things (which happened to another patient while I was at the clinic after a rapid growth in their effusion - all very dramatic) is 0.5mm in diameter, the chances of them actually hitting the tiny bit of fluid that was left, even if guided by ultrasound, are incredibly small so there was no chance they were going to bother with that. The cardiac consultant then told me he'd be sending a letter with lots of phrases like 'trivial' and 'not an issue' when writing a letter back to the referring physician in the respiratory department, who would then pass that on to the transplant team in Newcastle. So I am now at the behest of the vagaries of NHS bureaucracy. I think I might even forego the waiting game and just phone up the transplant co-ordinator myself and let her know what's going on. Things might move a bit faster that way now I come to think about it.

Addendum - Just off the phone to transplant co-ordinator and I am going down on June 27th. Also got to check and see if my latest bone density scan is within two years, and if not to get another. I'm sure it was fairly recently but I'll get that checked out when I go to the Beatson for my monthly check up on Monday.

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.

Tonight I'm wound tighter than a watch-spring

This is the longest period I've went without actually putting something in the blog and it's really remiss of me to do that because people might worry than something has gone wrong. I'll not do it again.

I don't have any great reason for not posting anything other than the fact I couldn't get my own thoughts on the looming trip to Newcastle for the repeat test on my kidneys clear in my mind. I was very calm about it mostly but just every now and then the enormity of it hit me that if my kidneys potential inability to deal with a full dose of the anti-rejection drugs I would need post transplant was to come to pass then I would have no other options and would have to consider what I could make of my life.

So the repeat test last week was the only part of the 4 day assessment I had gone through at the Freeman in Newcastle last June which I didn't sail through so it was a concern, but all manner of investigations into my kidneys could only find a recurring peak in my creatinine levels. Both the Renal and  Urology docs could find nothing physiologically wrong with the kidneys so they put this anomaly down to an intermittent blockage, possibly caused by dehydration.

I was very nervous going down but the staff there quickly put me at ease, although they did tell me they were going to do lots of other tests too while I was there to see if I had deteriorated since I seen them last. The exertion test I didn't manage as far a distance as the previous time but that can be put down to the fact I'm getting oxygen at 1 litre/min now compared to the last time when I was on 2. It was reduced because it was causing me to retain carbon dioxide in my blood. So blood gases were also checked to see if a difference had been made by reducing it and indeed it had. Arterial blood gas samples are notoriously difficult to get because there's so many tendons and things in the way on your wrist (this is why many people who attempt suicide by cutting their wrists don't actually manage to get the artery) but I have a freckle on my left wrist which is a good guide for them and I don't really feel the pain of it anymore. It's really no worse than getting a tattoo done. My oxygen saturation in my blood is down but again that's because my oxygen was decreased. It's at 86%, where it had previously been at about 90%. No big deal really.

Being in Newcastle I got a visit from my friend Annie, with whom I did my PGCE in my time in Liverpool. The time just flew by while she was there, which was great at taking my mind off how big a few days I was having. She also brought me fudge and a 6 pack of creme eggs, which I gave to Kirsty the transplant co-ordinator as it was her birthday. She's been absolutely brilliant to deal with through all of this.

I also had the Social Worker come in for a wee chat to make sure I was fine and that transplant was still the route I wanted to take which was also lovely.

The GFR (Glomerular Filtration Rate) test itself was done on the Thursday and it pretty much went without any problem. It's just a matter of injecting you with a radioisotope in one arm and then see how quickly the kidneys can filter it from your blood by taking measurements of it in your blood at two hourly intervals. Unfortunately due to a bit of a scheduling problem the transplant team were going to have their weekly meeting to discuss all the patients' status before the final sample of blood could be taken but I would get the results on the Friday.

After their meeting the team came round and were incredibly positive about everything else and said that the only barriers now to my being put on the active transplant list were the results of the GFR and, because of my family's colourful cardiac history they want to do an angiogram, primarily to satisfy the surgeons and anaesthetists that I would be safe to operate on. They concluded that they would probably do a contrast CT scan type of angiogram rather than the more intrusive procedure where a probe is injected into the groin and manipulated up to the heart to determine how well the heart is working. They said this was a formality really because I am young and, up until they started pumping high fat liquids into my stomach overnight, I had low cholesterol and essentially a pretty good diet.

So we came home not knowing what the main test I had gone down for was showing but I was curiously relaxed about it at that point. There wasn't anything I could do to affect the outcome so why waste energy worrying about it. Then on the Friday Kirsty called to say that because the test had come back as being borderline to what they would accept they were going to run it again and just regard that one as inconclusive. She also told me that even if the test wasn't quite right we were going to continue doing it until we got the result we wanted, but that I could just get it done in Glasgow rather than travelling down for it, which was massively reassuring. When the whole team had been in on the Thursday I got the feeling they were all desperate for me to get the result I wanted because I had been through so much and had done everything asked of me without question. They really were rooting for me. The calmness I had on the way back up the road was gone though - even though the situation was the same and I couldn't do anything to change things I had a very stressful weekend waiting for Monday to come round. Sleep did not come easy.

As it happens I had my monthly jaunt to the Beatson to receive my transfusion of immunoglobulins on the Monday morning so I had something to take my mind off the wait and it wasn't long after I got home that Kirsty phoned to say that the repeat of the blood tests had shown that I was well within the range they find acceptable for transplant. She then told me she was so happy she was away to have a creme egg to celebrate. I just burst out laughing, but in all honesty laughing was the only thing keeping the tears away. I was so relieved I can't begin to put it into words. A massive weight had been lifted. My mum phoned my wee sister at her work and she really did start greeting and I left it up to my mum and my Uncle Stephen to spread the word through the family, which it did like wildfire. I've had so many messages of support from friends and family that I can't thank everyone individually but rest assured I am a very thankful young man for all their thoughts.

Now we just need the angiogram done, which will hopefully be soon and then I can go on the active list. It's taken nearly three years to get this far so I'm not in any real rush. It'll get done when they can get it organised. I'm back to being calm again.

And so now I can come off Cyclosporin, which will be lovely, as I would hate to have gone through all this only for it to cause damage to my kidneys while I wait for transplant. Being on it also means I have to take lots of other drugs and it would be nice to have a much smaller drug regimen for a while, just to give my body a break.

When I was born they looked at me and said...

...what a good boy, what a smart boy, what a strong boy.

I have an uneasy relationship with Valentines's Day. It's given me some of my finest memories of shared intimacies with various girlfriends but it is also incredibly bittersweet because of a single Valentine's Day when I realised that the relationship I was in (with the previously mentioned Sam) had to end because it didn't move me the way it used to.

It was the longest relationship of my life, even now, and the real burning sadness of knowing that the love that had been so fierce had faded to the point where I wasn't excited about opening my card from her. We struggled on for a few more days fighting to keep it going but we both knew it was done. Don't get me wrong I still loved her but neither of us was built for a long distance relationship and it was doing us both real damage. In the end it was a song lyric that prompted me to make the decision to finally cut the cord. The line, since you ask, is from Crowded House's Better Be Home Soon and it goes 'It would cause me pain if we were to end it, but I could start again you can depend on it'. It just resonated perfectly with the moment.

There was no chance of a complete break from each other simply down to the circles we moved in so we decided that, tough and awkward as it may be we would fight to remain friends, and I think we've successfully done that. It's not been all easy going and we've definitely driven each other mental at points over the last decade or so but we remain close still. We don't get to see each other regularly unfortunately but Sam still remains one of the first people I go to if I feel I need a kick up the arse as she is wonderfully clear and won't pander to my feeling sorry for myself. I still love her dearly but not in any creepy ex-boyfriend way, but in the way that (I hope) we both know what we meant and continue to mean to each other.

I wondered once a while back what my life would have been like if I had been sensible to go and register with a doctor when I moved to Cardiff, as they would invariably have found the Leukaemia even a year before they eventually did, which would have meant I would have had a girlfriend with me all the way through my treatments. On reflection though I concluded that the best thing to happen was what actually did as I got to spend a good wee while taking advantage of all the trappings of a single man in a different country with an accent that, for reasons I don't understand, seems to attract women, and Sam got to move on to get together (eventually) with the man that is now her husband and dad to their son and upcoming new child. You see I know just how much me being ill hurt Sam; I saw it in her face every single time she came to visit. I could even hear it in her voice when she occasionally phoned me on the ward post BMT. I am sure she would have been brilliant but I rapidly realised when thinking of this abstract idea, that I didn't want it for her, or anyone for that matter. I had a few people showing an interest in me at that time and I couldn't help but think it was out of pity so I never entertained them. I've done the same this time round even though I know it's a horribly cynical outlook. So yes, she'd have stood by me and come to as many appointments with me as possible and in general looked after me amazingly but I didn't want it for her in this imaginary scenario. Of course none of this happened, I didn't register with a doctor and I was really careless with the feelings of the woman I loved but on reflection us breaking up was the best thing to happen for both of us. She now has Kev, who I always liked, and their wee family now and I couldn't honestly be happier for them. The due date of their new baby is 7th March - the same day I go to Newcastle so Kev and I have tentatively agreed to go out for a drink to wet  the baby's head and hopefully celebrate my going on the active transplant list when I get back.

Now when I was admitted to the Beatson a couple of years ago and was down to 41kg, Sam came to visit because I had kind of scared her in an e-mail I sent about just how bad a state I was in. She and my pal Gerry who had brought her just sat and talked for hours - they didn't leave till half eleven in fact but the nurses weren't bothered about them staying as I really wasn't well and it honestly could have been the last time they saw me. We talked about how jealous we were of certain aspects of each others lives which was curiously refreshing.

Thankfully, I'm in a much better way now and there's hope on the horizon. I just wanted her to know how much her help has done for me and that I hope I never have to return the favour.