We never learn; hurt together; hurt alone.

I'm not a member of any patient groups because my condition is so convoluted so as not to really belong to any one in particular, but the one I identify most with because of the satellite lung transplant satellite clinic (and I suppose having similar symptoms) is the Cystic Fibrosis group. I don't know any of them personally but know a few of the names on the wider Glasgow scene.

This last Monday we lost a giant on that scene in Anders Gibson. Like I said I never knew Anders personally but recently I found out we have a lot of friends in common (one of whom shared a flat with him back when we were at Uni), so it's a wonder we had never met. You see Anders transcended the Cystic Fibrosis scene such was his force of personality. He did a lot of fund raising but as well as living the closest thing he could to a normal life he was best known for organising city wide football tournaments as well as doing stand-up comedy and performing music live.

He is a great loss to the CF community and I hope to get to his memorial service.

That's not exactly why I'm writing about him though. I am doing so from a much more selfish point of view. You see Anders got his transplant and then, sadly, rejected the lungs. This is my absolute worst fear. To get the high of a transplant and then for you to reject them.

Too many people, myself included sometimes, think of the transplant as the be all and end all; that I'll get it and then my life will take off again. It's much more complicated than that, which I should know fine well having had the bone marrow version all those years ago. It's never straightforward so I have to hope that any post-op complications are minimal. I know that my case is a little more complicated in that I already have two sets of DNA in my body, with my blood and bone marrow (which will be responsible for generating a positive or negative response to the lungs), and all my other tissue, which are the original me.

In other, slightly more light hearted news, I had a rather strange respiratory clinic this week. The doc I got said she recognised my name but didn't know where from and I definitely recognised her too so we spent a good few minutes going back and forth trying to place where. We eventually got to school which was a match but there was nearly ten years difference between us (definitely a feeling old moment) so how could I recognise her? Then it came to us. I had taught for a week in my school back in 2004 (or maybe 2005) as part of what was called the Researchers in Residence programme. As a research scientist I was to go into a school and convince the students that a career in science was the way to go. So I gave a lecture to the Sixth Year Studies class about the principles of rational drug design. She remembered me specifically because I always wore my Oakley protective glasses with orange lenses because my eyes are so light sensitive - christened the AIDS shades by my mate Olly some years previous. The other thing was that her dad who was supervising me on that week long introduction to teaching had in fact been my Sixth Year studies teacher some 9 or 10 years previously and was, depending on your stance, responsible or to blame for my choice of career. He was quite simply the  best and most inspirational teacher of my time at high school. Anyway the doc was brilliant and prescribed me some stuff that will hopefully stop the build up of mucous plugs that have been affecting my breathing until they clear. Prevention being better than cure, this stuff should help me clear my lungs easier before these sort of things build up in the first place.

I am also engaging in some more publicity work on a couple of fronts. Some of you will remember my brief appearance on the STV news a while back pushing for greater numbers to not only join the organ donor register but to have the chat with their families about what they want done in the event of something tragic happening. Well the team have been on touch again and are keen to use me in some way. The nature of which isn't known yet - it could be another telly slot or a press piece or even to be used in patient literature. I'd be happy to any of these. There's also been contact from the transplant team about whether I'd be ok if it so happened that I got a call for transplant when the BBC were in filming for a program on the ex-vivo lung perfusion process that I've spoken of on here before. Kirstie, the transplant co-ordinator said when I called 'Oh, we've just been waiting on you getting in touch'. Apparently they feel it's right up my street to talk about myself. I wonder whatever gave them that impression?

So, to Anders. The world is a slightly less bright place for your passing. I wish I had known you the way my friends did.

She's like a detuned radio

Well hasn't it been a while? I have genuinely not had much to say except for wee updates so I decided to keep them and lay them all out in one post.

Firstly I had to keep up with my profile for the transplant team in Newcastle by having blood and sputum samples done and a bone density scan taken too, as you need one done within the last two years to fit their criteria for fitness for the operation. I don't hear back about the samples unless something is wrong and I'm glad to say I haven't heard a peep so that's obviously all fine. I did hear back from the scan though and I've to stop taking the medication designed to boost bone density as apparently I now fall into normal parameters again. This is very good news as my period on steroids 10 years ago had left me with a mild case of osteoporosis. They measure the bone density of your spine and hip bones and compare them with the norm for someone of your age and sex and I was something in the region of 75% to 85% for them. I must be much higher now for them to remove the drug from my normal regimen. I've still to take the calcichews because, even though I don't need the boost of the calcium for my bones, they come packaged with vitamin D, which I need because I don't get enough natural sunlight.

At my last trip out to get Immunoglobulins I got a bit of a scare. My oxygen saturation levels were ad low as 82%. On a normal person you'll get somewhere between 97-99% and I'll (on 1 litre of O2) routinely achieve 91%. A normal person would be floored by that but my body has grown accustomed to it over time. When I lived in Belfast and had my care transferred to the respiratory team over there they didn't believe that I should be functioning with sats so low that they actually kept me in overnight, refusing to believe that I could function like that. They finally let me go when it was clear I was perfectly fine. Now back to the immunoglobulins. We decided to let me relax a bit and see if the sats would climb, which they did to 86%. Now all this time I was chatting away to the other day patients in the room and talking perfectly lucidly with the nursing staff too but when my treatment was over and my sats hadn't increased any further I asked them if a doc could check me over. No sooner had he done so and found nothing overtly wrong I noticed that my oxygen cannister was actually set at zero. I must have knocked it getting out of the car or maybe even went the whole morning without oxygen. Now it was a mighty relief to turn it on again and my sats shot up to 92% and so they let me go home but it reassures me that, if ever I do go out and something happens with the liquid O2, that it's not as scary a proposition as I may have previously thought.

This coming bank holiday weekend I'm getting visitors. On Sunday I'm getting my most regular visitor Claire coming over and on Monday I'm getting two old friends from my time at Glasgow Uni coming through and we'll maybe go out for some pizza. They both know a fellow that I seem to be linked with, albeit one step removed, through many of my friends who had a transplant earlier in the year. I don't want to talk about the details as they change so very quickly that you can never be too sure what is actually going on but he isn't having the best of times post transplant. I can only hope he recovers as, from the many people I know who know him, he is a widely adored guy in Glaswegian circles.

Monday also brings about the fifth anniversary of the day I walked into Liverpool Royal Hospital and this whole sorry mess started. From then it took two months of treatment for the original fungal pneumonia till I got swine flu and then my immune system went mental and started shredding my lungs with it's over-enthusiastic attempts to fight the infection.Another few months and another chest infection and I wasn't allowed out the hospital without 24 hour oxygen. I had lost a power of weight. I was 41kg so I had the feeding tube put in my stomach so I could gain the weight required before I could even meet the transplant team.By this time 6 months had passed already - time flies when you're having fun - and my respiratory team and I set about meeting all the criteria needed before you could even get on to the consultation list with the transplant team.It would be another year and a half before I got to see them at the satellite clinic after I had met all their targets (I was well over the Body Mass Index required by this point) and they asked me if I wanted to be put forward for transplant. After a fairly firm yes they agreed I was suitable enough to go through their boot camp of tests in a four day stay down in Newcastle. It took three of these stays before they agreed to put me on the active list, by which point I was just past the 3 year point of the first infection. I had fought long and hard to get there. Now 20 months have passed since I've been on the active list and I'm not ashamed to admit I'm worried.

You see, I am blood type O negative which means I can donate to anybody but they have to be type specific when donating to me or matching me for such things as a transplant. We O- types make up only 7% of the population so my chances of a match aren't great so it's really all down to blind luck if I get one. In the meantime I am slowly (very slowly, don't get alarmed) declining but I'm doing my best to keep that at bay as long as I can. I have my nebuliser to help me breathe a bit better and my muscle toning pads to try and keep some muscle in my legs at least, although I would be the first to admit I don't use it as often as I perhaps should. I'm noticing that I need to sleep a lot more and there's no point fighting it. This is frustrating. What is also frustrating is the time that I am awake my concentration span is pathetic. I've got piles of books to read and no ability to get through them. Same goes for films and tv series - I don't have the attention span needed for some of them and find myself lost in the more intricate plot details. I've talked before about how I lose my train of thought often and can even be mid sentence when it goes but the real kicker is when I can't remember something. The comedian Frank Skinner maintains that if you can't remember something you should never look it up as it allows the brain to be lazy. If you genuinely don't know something then look it up by all means but if you've simply forgotten it then you must force your brain into remembering. I have adopted this and so wasted four hours the other day trying to remember the word hyphen. When you value your mind as much as I do mine then it's a right kick in the stones when it malfunctions.

In other news I have a new, hospital style, reclining bed. I got it through the generosity of my sister's in laws when a member of their family passed away and I have to say it's been a revelation. A big double bed that I can tilt the back up so I can sleep in a more upright position is quite simply brilliant for someone like me. It aids my breathing no end. Right that should keep you lot going for a while. I'm away to sleep in some comfort.