So if you're lonely you'll know I'm here waiting for you

In the Great Gatsby F. Scott Fitzgerald noted that 'life is much more successfully looked at from a single window, after all.'

Now while the bold Mr Fitzgerald was obviously being metaphorical I can take that little phrase as literally as just about anyone. I spend almost all my time in the one room with one window to look out at the world. So what I take from this little phrase is that I, in my isolation, have a more focussed viewpoint on my life. I think that's probably true. I have more command of how I feel about things (even through the occasional medicinal fog) than I've ever had in my life.

My situation is one that you wouldn't wish on your worst enemy but I have embraced it as my own and so have a clarity of thought regarding what I can and can't do with my life, for the moment at least.

With the upcoming tests to see if my kidneys can handle another tough regime of immunosuppression I'll have to see if this clarity can continue.

Obviously I'm hoping that the transplant team conclude that they can let me go forward to the active transplant list but I have to consider that the damage done to my kidneys is too great and that there's no point performing a lung transplant only to leave me needing dialysis for the rest of my life. That would be no improvement from now. When thinking about this I think about it from the doctor's point of view and the Hippocratic oath premise that a doctor should first do no harm. The transplant team described that course of action as reckless and I agree with them completely.

So I am preparing myself for what will happen if I can't proceed to transplant. There are two options:

1. Remain on low level immunosuppressants to prevent Graft vs Host Disease attacking my lungs again. This would leave me open to opportunistic infections but I've largely remained free from hospital on that regime for 18 months now (not including the trip to Newcastle). I would have some sort of life similar to that which I'm leading now.
2. Come off all the drugs that suppress my immune system and see if my body is still being attacked by itself in the form of Graft vs Host Disease. If it isn't I'll be safer as I will have a greater resistance to infection but it is a big risk.

With either of these choices I'll have to come to terms more with the life that I have and perhaps find ways to spend more time away from that solitary window. I've no shortage of helpers who will do everything they can to make the most of the situation. That's all I think anyone can ask of their life.

Come play my game I'll test ya

I knew there was something I forgot to share with you. Counter-intuitive as it may seem the transplant team at Newcastle decided to decrease the amount of oxygen I'm on. Now that may sound ridiculous for someone who can barely breathe at all without extra oxygen. It would be straightforward to think that increasing my oxygen flow would improve my oxygen saturation in my blood, and it does.

What comes as quite a shock though is that oxygen can actually poison you.

The level of oxygen being forced into my lungs through my concentrator wasn't allowing what we'll call exhaust gases to get out, leading to a build up of CO2 in my lungs and arteries.

I get checked all the time to see what my oxygen saturations are and on a good day with my oxygen on they can reach the heady heights of 95% which is damn close to normal. Remove the oxygen and within a single minute they'll plummet to about 84% without even moving. Even those of you not terribly good at maths can spot that's not good.

What very rarely get checked are all your blood gases and I'm incredibly thankful for it because it requires arterial blood to be taken. Getting blood out of veins barely even hurts and that's only because of the tiny little pin prick from the needle itself. Getting blood out of arteries is totally different because arteries are positively brimming with nerve endings, thus making plunging a piece of surgical steel through them a rather painful process. I have one reliable artery on my left wrist that I can point doctors directly at so they're not rooting around, which is an unbelievably painful but sometimes difficult to avoid effect of this procedure. Before I found this particular old faithful artery of mine I had a few rather botched attempts at finding the equivalent artery on my right wrist which I'll just say did not go well.

The exertion tests I talked about in my last post I performed under the new lower level of oxygen and I have to admit I surprised myself. Even a few days of the amended therapy might have helped my lung function. I've to get my blood gases taken again in a week or so and hopefully that'll confirm that there's less CO2 hanging around making a nuisance of itself.

My castles stand upon pillars of salt and pillars of sand

I've just got back from my four day stint at the transplant clinic at the Freeman Hospital in Newcastle. To say I was put through my paces is to underestimate somewhat. I had test after test, some of which were just blood tests so involved no effort at all from me except giving up my blood, but others required pushing me as hard as they possibly could.

Day one (as I feel inclined to say in a Geordie accent) I had a few chest X-Rays and the barrage of blood tests as well as a full medical work over to make sure there was nothing untoward other than the obvious and all the paperwork was done to admit me as a patient. In fact it was done in triplicate as I had to answer the exact same questions to three separate people.

Day Two was the start of more intensive tests, the first of which was the test (GPR test) to see whether my kidneys were working well, which involved injecting a radioisotope into one arm and then taking blood at periodic intervals to see how much of the radioisotope marker is still present. As soon as that was out the way I had to do the one thing I was dreading the most, the exertion test. I was taken to a corridor in the hospital which is of a specific length and has 10 metre intervals marked on brass plates on the skirting boards. They measure how far you can walk at one minute intervals up to a total of six minutes. I managed along the corridor and back before needing to take a break before trying a little bit more. They were very pleased with how I managed. This test is to ensure that you are strong enough to make it through the surgery if you are ever to be put forward for transplant. After a little recovery time I went for an ECG and a Cardiac echo to see if my heart is functioning, which I can tell you is fine, although a few of my medicines and my lung condition mean I have a very rapid heart beat.

I also met the Social Worker in the department that day and she was pleased to hear I had a decent handle on the benefits I'm entitled to but also provided me with literature that will allow me to apply for to help pay for the trips I will need to make down to Newcastle.

Day Three held my least favourite of all the tests I was going for - the dreaded pulmonary function tests, which calculate your lung capacity amongst other things. The last time I tried these tests I was so weak I couldn't even get the machines to register. This time it wasn't bad at all and I managed to do all the tests they required. Don't get me wrong the results are still on the shocking side but at least they could get a result this time. After this I got to spend a fair amount of time in the ultrasound room where all my internal organs were checked out. Following that I got injected with another radioisotope and then had a gamma ray scan of my lungs done. I'm beginning to wonder with all these radioactive materials and gamma rays just when my superhero powers are going to kick in. By the time I got back to the ward the transplant team were doing rounds and the Prof popped in to see me just to tell me they were collating everything and they would have their meeting at lunchtime the next day and let me know where we go from here straight after.

So Day Four was just a waiting game for this meeting. I thought I would be anxious but I sat there just passing the time until they arrived. The news was very much what they call a mixed bag. On almost all fronts I was a perfect candidate for transplant but there was an issue with my kidneys function and an issue with my cholesterol level. The cholesterol issue is easily remedied and it is only high because of the artificially high fat content of my diet over the last year or two when trying to put weight on. Now I have the right body mass I can just maintain it and take drugs to bring my level down. The kidney function is an another issue altogether. My kidney function is a problem because the immunosuppressant I take, Cyclosporin, has the side effect of damaging the kidneys. In the last few months I've slowly been lowering my dose of it in the hope of coming off it to see if my immune system is still attacking me but the plan now goes in the complete opposite direction. The doctors are advising that I start taking the full dose I would receive if I were to get a lung transplant to see if my kindeys can cope.

So the short version of things is that I'd be fine to get through the transplant operation but I might die of organ failure because my kidneys fail. As the idiom goes 'the surgery was a success but the patient died.' It would be reckless to proceed towards surgery at this point, not knowing how I would react immediately post transplant.

So what does this mean? It means that I have a few months ahead of blood tests to check kidney function and then I will go back down to Newcastle in three months to do the same GPR test to see how well my kidneys can remove the radioisotope.

I am now essentially on a provisional list as otherwise I am ready and just need this one big thing sorted.

On the drive home I started thinking about it in terms of cars. You can either look at it as an MOT where I need one major and one minor thing done to make me roadworthy. The other way I thought of looking at it is like a driving test where I had one major mistake and one minor - I'd have got away with just the minor but not the major one. Now I need to eradicate that major one and get this show on the road.

It was a real shock when the consultant Prof. told me but the knowledge that I only have three months to wait and only need to go down for a day and not have to go through the whole barrage of tests again was quite reassuring. He was very considerate in telling me everything whilst still making the facts clear which is a lot harder than you might think.

I also heard afterwards that none of the other patients who had come for assessment have been put forward without also having to do something particular to their own case to be put forward to the active transplant list. This made me feel better, even though I felt for those people, because it made the whole process feel like just a step on a road rather than the be all and end all. I'm still a lot closer to the active transplant list than I was on Monday and I need to keep that in mind.

There's mischief and malarkies....

A few of my very favourite things came together this week.

One of the radio shows I listen to is called the Infinite Monkey Cage. You might remember I went to see a related live show called the Uncaged Monkeys a few months ago. It's about all sorts of aspects of science and is just brilliantly clever and amusing.

You can find it on the Radio 4 page on the BBC (here) or download the podcast from itunes. I really can't recommend it enough.

One of the guests this week was the writer Alan Moore who wrote two of my favourite comic books ever in V for Vendetta and the Watchmen. Those of you who actually know me will know that I have a tattoo round my wrist that says 'quis custodiet ipsos custodes?' which roughly translates as who watches the Watchmen (or who will guard the guards)?

The answer to that question of course is that it is we, the civilian population, who are meant to keep the police honest. I got that tattoo done when I lived in Belfast which is a place where nobody trusts the police, and for very understandable reasons. It was to remind me of the place.

After I left Belfast and moved to Liverpool to do teacher training though, it began to mean something more to me. It was more about trusting any person with a position of authority. I was now the figure of authority and had to take that very seriously. As it's on my wrist sometimes a pupil would see it and ask what it means and I would explain it to them and tell them that it also means that they are the ones who need to keep me honest. I don't have all the answers and will on occasion get something wrong and it's absolutely necessary for them to tell me when that happens.

Anyway, listen to the show but more importantly go and buy the comic books - the films aren't awful but they haven't done the source material any favours at all.

Baby got back

I knew there was something I forgot to mention from my trip to the hospital on monday. As part of the endless hoop jumping that I have to perform before being allowed to the assessment down in Newcastle I need to be screened for MRSA. This involved swabs being taken and cultures being grown to see if there is any indication of MRSA.

The only reason I mention this is because as well as the standard nose, mouth and throat swabs they require a perineal (If you don't know where the perenieum is go have a wee search) one. Instantly this set my mind wondering whether the nurse taking the swab would approach from the front or behind for this one. I knew either way I'd be rather exposed in front of a nurse for about the thousandth time. As it turns out she simply got me to pull down my breeks and kecks and lie away from her. She told me she'd have to just move a cheek to get to the right area - I burst out laughing, not because I was nervous or anything, but because it proves that for the first time since I was on steroids I actually have an arse to speak of. Normally I'm so thin that my back just kind of turns into legs with no discernible arse area inbetween. This really is proof that I've put on a good bit of weight. Mind you it's amazing how many people stopped me on monday and told me I was looking great so I'm obviously carrying the weight well.

The doctors at the Beatson got in touch yesterday to say my kidney function tests were showing rather unfavourable results so I've to go a few days without taking my immunosuppression drug Cyclosporin as it's the most likely candidate and then resume taking it at a lower rate than I had. I'm slowly reducing the dose of that drug at the behest of the lung transplant team so we can see if my immune system is still attacking me. If I come off it totally I can come off lots of other drugs too. That said if I do get a transplant I'll be right back on them all for life so I'll not bother getting used to it.

I wanna speak louder than ritalin

I had a wee adventure yesterday. I made the mistake of not keeping a close enough eye on the level within the liquid oxygen cylinder and it was completely empty so I had to make my monthly trip to see the haematologists at the Beatson without any facial furniture to help me breathe. Curiously I didn't actually feel bad but when they checked my blood oxygen saturation level it was 84%, a good 15 fewer than a normal person and ten lower than I can usually manage when actually using oxygen.

It was strange to feel that my body has got so used to being oxygen deprived that I can't notice when it's really quite badly starved of the stuff. I got the mask on to bring it back up to acceptable levels as soon as I could though, and it turns out that it actually made me feel much better.

All I can really garner from this is that I can go for periods without oxygen but that I have no clue as to when I'm at a dangerously low level. I will therefore never be letting the cylinder run dry ever, ever again.

So two weeks from now I'll be getting poked and prodded to within an inch of my life by a team of doctors and nurses. I don't actually know what I'm walking into to be honest. I don't know what type of tests they've got planned for me and nor do I want to know because that is a surefire path to insomnia and thinking too much about it all. At the moment I'm really content because there's visible progress and that's all I need for now.

Oh aye, other things to tell you. My immunosuppression is being slowly stopped to see how my body copes without it ie will it start attacking itself again, and my weight is all of a sudden 57.2 kg. I've gone up 3 kg in a month. I am absolutely delighted that I'm retaining some weight, although the number of comments from people saying that I look healthy when the word they are really looking for is chubby is amusing me greatly.

Just look them in the eyes and say 'I'm gonna do it anyway'

Everyone's face is asymmetrical but mine has been, and still is in fact, a good bit more asymmetric than usual. I had a surgical extraction of a wisdom tooth done on Tuesday that has left the left side of my face almost as puffed up as when I was on steroids. Having noticed that I realised that I have more about the cheeks in general than I have had in a very long time. I'm by no means fat but I've got more of a face than I've had in a very long time. All of that is a product of the quite wonderful PEG tube that pumps liquid feed into my stomach overnight and a few drugs to stimulate weight gain.

So I'm now at a weight that is acceptable and have fulfilled all the other criteria the transplant team wanted and now I even have a date to go down for my assessment. Mon 27th June is my day for being admitted and I should get home on the Thursday. They can accommodate one person but as both my mother and younger sister want to come along they're going to book into a B&B for those few days. I feel slightly bad for them because they'll be coming down and I'll be getting tests done all day so the only time they'll be able to visit will be at night. I'm sure they'll occupy their time easy enough.

So it's finally arrived - after two years of assorted infections, massive difficulties with weight gain and another few hoops to jump through, I'm now at the stage where they assess every single facet of my condition and what results mean for my condition. This is when I find out if I am suitable for transplant. I've waited for so long for this and I'm so very excited that it's so soon now.