The reaper he reaches and touches my hand

It's taken me a few days to get my head around what I think of last Thursday's trip to the clinic at the Beatson Oncology Centre. It's my 'home' clinic, if you will and the first place I call when there's something wrong. It's completely random which doctor you'll get as the docs will just take the file from the top of a pile but this week I got the boss, who has been looking after me for thirteen and a half years now. Those with an astonishing memory of my case may remember me telling of how when my case first got referred to Glasgow from Cardiff I had a half hour consultation with Anne whereupon she told me on eight separate occasions about how the treatment I had opted for (Bone Marrow Transplant) could kill me. She is nothing if not frank about the topic at hand and I've always been extremely thankful for her forthright approach to patient relations.

This Thursday as I walked in we exchanged pleasantries and I threw a line in about how there's much more of me than since she saw me last, to which she replied she was thinking of a polite way of saying the self same thing without sounding like she was calling me fat. We concluded that my being a little overweight but steady with it was no mean feat and I should just continue along those lines unless anything changes. It was then she kind of floored me. She said "It's actually great to see there being so much of you because there was a time not so long ago when there was nothing to you (41kg fact fans) and being honest I wasn't convinced you were going to make it. None of us were. You were just too poorly from constantly fighting infection after infection."

It was at this point that I interjected with my standard line about how everybody would be the same under the same circumstances. You just keep on going knowing that tomorrow it'll be better. You just do.

She then said  "Don't kid yourself on Paul, you're far from being a normal patient. A normal patient would have died years ago after what you've been through. You are genuinely one of a kind, and not just from a medical point of view with the BMT and the need for new lungs, but with the manner you have handled it. You're a very special patient."

As I've said I tend to rail against this sort of chat, even when it comes from my best friends who appear to be of the opinion that come the nuclear holocaust it will be me and the cockroaches left, but when a consultant of some twenty years experience in the field tells you that you are indeed a bit special you begin to take a bit of notice and even a wee bit of pride. Pride, of course, comes before a fall and I had barely given myself the opportunity to revel in my stature of super patient before my inquisitive nature got the better of me in the consultation. I mentioned to Anne that a guy Patrick I know from my time at Glasgow Uni is doing some amazing research work on the more resilient forms of Chronic Myeloid Leukaemia (CML), the type that I had. She told me that in her field CML is regarded as a bit of an outsider as it has a pathology as a disease that is quite unlike any other. It is caused by a very specific genetic mutation (the Philadelphia chromosome). This makes it very special and gives much greater scope for a targeted treatment which minimises side effects of the drugs. This is a good thing, clearly.

I am well aware of how lucky I was to be born in a time when there was any treatment available for CML, brutal though it was. It was still a cure and it's not every form of the disease that can claim to have that available. Back then the drug Gleevec was still in its infancy and the analogues of it weren't even thought of yet but such has been their success now that giving people a BMT is very much a third or fourth option for treatment. I mused on these pages a while back about how I sometimes feel a bit bitter that the side effects of the radiotherapy led to my current position on the lung transplant list but I still think that we made the right choice back in 2001 with the information we had at hand at the time. I have to remember that or bitterness will consume me. Yes, if I had taken the course of being placed on the trial for Gleevec I might have gone on to lead a perfectly healthy life but there simply wasn't enough data at the time to suggest that it was the right course of action. The new generation of drugs based on the Gleevec starting point are proving to be even more effective and with fewer side effects and phrases like 'complete molecular remission' are being bandied about. This means there is no trace of the disease in the body and in fact there is talk of even conducting a trial where they take people off these drugs to see if the drugs have indeed proven to be a cure. I'll admit I've found that hard to handle over the last few days. Not even the most eternal optimist could have foreseen that such a silver bullet treatment would have been found and that there could be a cure that doesn't nearly destroy you in the process. That said, what if I had taken the Gleevec route and it hadn't worked for me and I had a resistant form of CML (the type Patrick is working on) then I would have been sicker than the perfectly fit 22 year old that I was and the BMT would have been much harder. You can't spend too much of your time thinking that way. There's nothing wrong with musing on your misfortunes but dwelling on them is counter-productive.

I have spoken to a few close friends and they're wondering why Anne told me about all of this in the first place as they can see why it may be upsetting but that's simply the relationship we have. She's never bullshitted me, not even from the beginning, so she's not going to start now. It was only upon my asking about it that I got the whole story and now I've had a few days to digest it I'm glad I did. I'm especially glad for those people who are avoiding the BMT (only doing 3 or 4 a year now compared to about 2 a month when I was done). This is what research into Cancer is meant to do so I can't get annoyed when it comes up with results that just didn't suit my timescale. 

After the consultation I went for my monthly transfusion of immunoglobulins and it's getting harder to find veins that won't just collapse. It was only on the third attempt that we got one this time and even then the nurse admitted it was more luck than good guidance as the vein wriggled a little just as she pierced it. They've just been abused over the years so instead of using the back of my hand we are going to just try and find useful veins further up my arm to use.It is these immunoglobulins that I reckon have kept me out of hospital as much as the extra weight and general good health. They provide the immune system with a hell of a boost so I've just been fighting the wee infections away without much bother really and nothing really big has come my way in a long while. So many rotations of doctors have passed now since my last admission that none of the ward doctors actually know me, except by name and, it turns out, reputation. Long may it last.

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.

Go placidly amid the noise and the haste...

...and remember what peace there may be in silence.

So says the start of the Desiderata by Max Ehrmann, which hangs in a frame at the front door of my house. I often sit and read it as I am filling up my portable oxygen cylinder before any venture out into the big, bad, scary world. I say scary because I now find myself to be a little anxious when I am outside my house and away from the safety of the oxygen concentrator and it's permanent supply of oxygen. It's not so bad when going to hospital appointments because I know there's always help at hand when I'm at one of those fine establishments but recently I have knocked back every offer of going out somewhere, in fear that I won't be comfortable or that something might happen with the liquid oxygen cannister. All very stupid when I stop and analyse it but there you go, it's there. Paul Stefan Kilday is actually scared of something.

Before putting fingers to keyboard tonight I decided to re-read this whole blog from beginning to end and while I do have a certain turn of phrase I can go on a bit. This post will probably be no different but if I make a point I have a terrible habit of repeating it. This tautologising bollocks isn't down to my thinking that you, my lovely audience, aren't getting it. It's simply that my drug addled mind has forgotten that I had said that point before, or that I thought it was so clever that it bore repeating.

The other thing I noticed is that I am almost relentlessly upbeat about my position throughout my posts. A few dips here and there but nothing utterly bereft of hope. That isn't to say that this is representative of my time, only that these more lucid moments where I am in general good spirits happen to coincide with the times I decide to put something down in writing. When I'm not feeling the best I don't feel much like typing it all down.

With that it mind I'm going to try something unique. Whilst in relatively good spirits, as proven by my actually typing this, I'm going to share my worries about my potential treatments with you from a coldly clinical point of view.

• Firstly I have to address the heffalump in the room. There is a chance I'll get an opportunistic infection before I get a transplant that is strong enough to not only take me off the list, but to shuffle me off this mortal coil. I take all manner of drugs to stave off the worst infections and haven't been an in-patient in well over four years now so I'm doing well but that doesn't stop me from worrying what the next infection could do.
• Secondly, the transplant itself. 10% of patients die on the operating table. That's just a stone cold hard fact of the matter. All these patients are in real danger of not surviving the process because of their condition and it is an incredibly invasive procedure. It actually amazes me the stats aren't worse than they are.
• Thirdly, rejection rears its ugly head. My body, thanks to my dear sister's bone marrow, struggles to accept that even my own internal (and external for that matter) organs are my own, albeit less so lately, so what are the chances it will cope with a third set of tissue in my body. Will it be able to tell self from non-self and if it does will it wildly over react and reject the lungs? A massive drug regimen is in place to cope with all this stuff - I've been through it before so I know what I'm signing up for and hopefully it'll work well.
• Worry number four is that, even if I do escape rejection that peripheral bits of damage that have been done to my body in the last five years (in reality since Oct 2000 when I was diagnosed really) will mean that I won't be able to go back to my preferred career of teaching. After all, who thinks it's a good idea working with kids when you have a suppressed immune system? Of course I have a plan for this, I go back and complete the PGCE and then work in a Further Education College. I did that as part of my training and they gave me a job on top of my training to take the night time A-Level class and I loved it so maybe that's where my path lies.

So there you go, the worries of a tired and frustrated man, all through the prism of a relatively clear mind. No point really worrying about them as they're all outwith my control but then it's never the things over which you have control that you fret over, is it? I'll try and stay as positive as this blog paints me out to be. It won't take much effort - I'm mostly that guy anyway.

Although loneliness has always been a friend of mine...

So I took a decision much against the wishes of the medical team over this last week past. At my monthly trip to the clinics I mentioned to them that I wanted them to remove the gastrostomy tube that I've had in for four years now to help me maintain my weight.

I honestly wasn't being rash, I had thought long and hard about it, especially after the period where the site for it on my stomach was leaking acid all over my skin and burning it. It was happening every time I sat upright which is kind of important as those were the times I was, for instance, using my nebuliser and eating. One Saturday night when I had a friend in visiting I was sitting up talking to her and all of a sudden noticed my t-shirt was saturated and my skin was burning as my stomach juices were literally pouring out and burning the flesh. I lied to her (obviously) and said it didn't hurt but it wasn't the most comfortable evening I've ever had. I called out the District Nurse on the Monday and she came out and replaced the tube and gave me a spray that would act as a barrier on my skin to any more acid that did come out. This was great at its job but the fact is acid was still coming out of the site when I sat up, which was clearly not right.

Now I hadn't used the feeding tube in three weeks anyway so, in my mind at least, I could maintain my weight simply with the meals I was eating but I had to convince my consultant that it was ok for me to survive without it. Their fear was that, even though I was a stable, decent weight that if I caught an infection I could lose the weight that I have spare quickly and fall under the limit imposed by the transplant team. I calmed their fears by telling them I had got a chest infection over the holidays and lost the grand total of 1kg, which left me another 6 to spare. All of which was achieved without resorting to using the overnight feeds.

Another, longer chat with the dietician along the same lines ie that I was doing well without the feeds, and I eventually got them to agree that I could get the tube out. So this Thursday just past I got the nurse out to the house to remove the piece of plumbing that's been sticking from my stomach for four years. So, in what would turn out to be remarkably low tech procedure, the nurse took the water out the plug that held the tube in place out and then simply placed a dressing over the hole to let it heal all on its own. The only thing I had to do was give it a bit of time for the internal wall of my stomach to close over enough to cope with food and drink. I now have what looks like a second bellybutton that feels very strange as it starts to heal and knit together to heal completely.

In the first night I did what I promised I was going to and slept completely starshaped spread out all over my bed on my front, without any bit of plastic to stop me. There's lovely.

I don't know what else to say but I think you get it

I am still here, I just have very little to report.

It was my 36th Birthday yesterday and I was having a really good, enjoyable day with all the family till about half five when I suddenly felt drained and weak and had a tickly throat. I've had a chest infection this last week - nothing serious but enough to warrant a course of antibiotics - and I've now got a wee cold on top of it. It meant I had to pass up going out for my birthday meal with a bundle of friends. We've been doing that on my birthday since we left school and it's rare for me to miss one but if I don't feel great there's no point pushing it and then spending Christmas day miserable. I knew this morning that I had made the right decision as I feel a bit worse today. I do hope it passes quickly. I have plans for the weekend that I definitely don't want de-railed.

So in lieu of there being anything to talk about from my life I'm gonna vaguely talk about the more neglected part of my blog title, the love aspect, specifically something that I've noted over the past couple of years. Anyone over a certain age will have gone through a period in your mid 20's to early 30's where there are just weddings everywhere and monotonously regular. Well now, 7 or 8 years later some of these marriages appear to be breaking down. It got to me to wondering if there is such a thing as the 7 year itch. Are some relationships just designed to wear out? Now let me qualify that by saying nearly all my married friends are still happily so but in the last 2 years I can count 8 break ups amongst the married couples I know, and 2 on top of that who called off their wedding very close to the actual day. I hold special admiration for them because it can be the easiest thing to just carry on regardless with the wedding plans and then realise it was the wrong decision at their leisure. It takes real guts to stop a wedding train in motion. From what I see of those two it was the best decision they each ever made as they seem to be thriving having made it.

The reason I'm mentioning any of this at all is that each one of them has shocked me quite badly. They were all relationships that I thought of as absolutely concrete, which just goes to show how little any outsider knows about the inner workings of anyone else's relationships. 

One of them recently told me that they now don't believe that they can prosper in long term relationships. To them I repeated my mantra that you should always 'sing like nobody's listening, dance like nobody's watching and love like you've never had your heart broken' which is a terribly easy thing to say but I truly believe that it might actually be self fulfilling if you have a defeatist attitude. Your relationships wont work because you won't let them.

There are no answers to any of this but it's been fermenting in my brain for weeks so I thought I'd put it down, hopefully without betraying anyone's confidence.

Right, I'm signing off until the New Year so I hope everyone of you have a lovely time over the Christmas festivities. I know I will.

P

Blood, sweat and tears really don't matter...

This Sunday past was the anniversary of my Leukaemia diagnosis, a full 13 years ago now. At that time the prognosis was such that, while the disease was in it's chronic phase, I would have less than 5 years (probably notably less if my white blood cell counts were to be believed) before it went into the acute phase and then the terminal blast phase. That being the case only if none of the treatments they had for Chronic Myeloid Leukaemia were successful. Regular readers will know that I got a bone marrow transplant and even taking into account my current health issues 13 years is actually an impressive stat on it's own.

So, as happens when this time of year rolls round, I get a bit analytical about what has gone on in those intervening years. I've said before on here that I feel I was deprived of a decent chunk of my twenties and while that's perhaps a smidgeon over dramatic in the case of that decade, it is undoubtedly true for my thirties. I did a lot in my twenties, something that I seem to need other people to remind me of before I'll believe it. My thirties started off under a bit of a shadow with the recent death of my father and my career - shot to smithereens by my lack of desire to put the effort of completing my PhD thesis leading to my contract at Queen's University in Belfast coming to an end. That shadow was soon cast aside when I started working as a lab tech in a school to see if I fancied life as a teacher, something I had always fancied for myself but had put off, not just because of my career as a researcher, but because I felt I was too young and wouldn't exude the necessary authority to do it till I was at least in my thirties. 

I can justify not putting the effort in to write the thesis in a thousand ways but the overall truth of it is I just didn't want to put the effort in. My supervisor once told me that if I put in half the work he did I would be his boss. The old adage that hard work beats talent when talent doesn't work hard springs to mind. I would beat myself up about being lazy up until the point where I actually started teaching, whereupon I found something that I really wanted to work towards. I would get by on four hours sleep each night after spending the wee small hours preparing lessons and the early hours of the morning traipsing all over Liverpool to get to the school or college I was placed in. I even took up a position of lecturer for the night time A-Level course at the local college one night a week on top of the work I was doing for the PGCE. I had found something that I really wanted to work towards and wasn't afraid of failing at it. A further bout of honest soul searching has me thinking I was scared that my work in the PhD wasn't up to the required standard and I'd have failed at it. There's no empirical basis for that  in fact I don't think but it doesn't stop it creeping up in my thoughts every once in a while - that I'm not actually as clever as I sometimes think I am.

Another thing that crops up in my musings over these times are the people who I spent them with. I found out yesterday for instance that one of the guys I spent a few years at Aberdeen (and a further period in Belfast) with got married two years ago to one of the girls I worked alongside in Belfast. I had no idea this had happened because I hadn't spoken to either of them in just about 5 years. For some reason I thought I had them on my Facebook friends list but hadn't so I hadn't kept in touch with what each of them were doing. I had kind of been out of the loop firstly because I was so very busy in Liverpool but furthermore because I was subsequently so very sick in Liverpool. The next year saw me perilously close to the blade of the Grim Reaper's scythe so I was kind of preoccupied and I lost touch with a lot of people, these two included obviously. Recently, I decided to throw off the shackles of restraint that hold me back from quite simply begging for visitors as I've found that it's the squeaky door that gets oiled. I've had more visitors in the last month than any single one in the preceding four years. That's nobody's fault - as I've said often on here real life just tends to get in the way. I make a point of telling people on their way out at the end of their visits not to promise to visit more often as we both know that such promises aren't kept as often as they should be. I've got back in touch with so many people through Facebook - if I haven't got to you yet for an update don't fret, I've got nearly 300 people to get through. I'm not particularly methodical about it. I just see someone post something and I think "Oh, I must message them". I really do have to make more effort with people.

In transplant news I had another in my long line of lovely chats with Kirstie, my transplant co-ordinator who was perfectly adept at allaying my fears about something. You see, every four weeks I get a transfusion of a blood product called immmunoglobulins, or the goblins as my friend Claire calls them, and they are essentially the antibodies harvested from donor blood. My worry is that if antibodies can keep you from being a match with a donor set of lungs then surely getting lots of them every month or so just decreases your chances of finding a match. The kicker is that these are the basis of much of my immune system and are, as far as I'm concerned at least, the reason I haven't been hospitalised in four years now so to do without them would put me at risk. So to put my mind at ease Kirstie went through all my previous blood antibody samples and found that I haven't gained any in between samples being taken so it looks like it's safe for me to continue receiving this treatment without affecting my chances of finding a matching set of lungs. Kirstie went so far as to tell me that I actually only have 8 antibodies that they specifically test for in terms of potential rejection risk, which is miniscule apparently. So the fact that I matched 5 out of 8 with that set that became available a month ago is what we, in the scientific community, would call a curious statistical anomaly.