The retrospectoscope

It's the time of year where people have a wee look back at what the last year has held for them and begin to wonder what will be in store for them in the next. I'm no different from anyone else but it's especially so because today, the 23rd, is my birthday. I'm 35 today.

I'm not just looking back over the past year but that's where I'll start. It's been a year where I feel I've aged about 5 with the stress of going through all the tests to determine whether I'd ever get put on the active transplant list and then to have the relief of the phone call telling me that was me on the list and it was now just a matter of waiting and staying stable until the day comes and it's my turn. I've had a lot of visitors recently who have said that they are absolutely sure next year will be a good one for me. I'm too pragmatic to let myself get carried away with that but the fact that people are talking in such a way tells you that the overriding emotion in the air at the moment is that of hope and I'm not going to rob anyone of that feeling. I've also been on the receiving end of some fairly barbed comments about just how healthy (fat) I'm looking these days. I'm actually the same weight I was at 20 but back then it really was all muscle and no fat and now the reverse is true because I simply don't have the breath to exercise. The folks that have been in visiting remember only too well how ill I looked when I was so seriously underweight and in a very bad way so their visits are much easier on us all now thankfully.

When I start to think back further than just the last year it actually kind of amazes me the way my life has panned out. When you're a teenager you want to be part of an identifiable group but then when you go to Uni, in my experience at least, you want to stand out from the crowd in your own way. Mostly this leads to lots of people trying too hard to be different and all ending up pretty much the same caricature of the introspective student type. According to my peers at the time I genuinely did stand out. This is something that has been repeated throughout all my education and jobs. For such a wee fellow I leave a bit of an indelible mark on people apparently.

I mention this because as well as telling me I'm looking well people have been telling me that they're still amazed at how I've dealt with everything that's been thrown at me so I've been going back over it all in my head to see if I did in fact do anything special. I've always felt that the Leukaemia diagnosis was shaped not only by my own pragmatism but that of those surrounding me. It was the response of my closest friends that allowed me to deal with it as well as I did. I'm honest enough to admit I did handle it better than most would have, but like I said, it was only because of those I had around me making it easier.

The other thing I've been thinking about is the steady decline in my lungs over the nine years or so between the Bone Marrow Transplant and whether I could have done more with my life in the time before my lungs failed completely in 2009. I look back now and can see all these little pointers that I ignored along the way that signalled that my lungs were still being attacked by Graft vs Host Disease. My years in Aberdeen I can now think of in terms of how difficult I found walking up the hill to the GP. After I left there to go to Belfast I went to meet the respiratory team at the hospital and they kept me in for a night because they couldn't believe I was operating normally with blood oxygen saturation as  low as mine was. So maybe with sheer force of personality I was getting more out of my life than I really had any right to. It's either that or I was pushing myself too hard and a fall was in the post. I got my answer exactly 5 years ago to the day ago. I was meant to meet all my friends for our Christmas meal and I went in to Glasgow to meet with them and very suddenly found myself very ill indeed. I couldn't get any sort of breath and had to phone my brother to come and get me to take me home (More on this story later). You'll notice I said home and not hospital. This is because I am, and always have been, a bit of an idiot and will put off hospital as long as is humanly possible. I had a terrible time over Christmas that year with a chest infection but I did get better but it wasn't long before I got my next reality check. In the following January an old friend from school got in touch and I arranged to go over to England for a weekend for a visit. I collapsed on the plane mid-flight and had to be taken off the plane by an Ambulance crew who only let me go under supervision after an hour or so of checking I was ok. A cold allied to the pressure change in the cabin was apparently a bit too much for my wee body to cope with. A weekend of very light activity then reassured me that I was ok but being honest I was really kidding myself on. 

Over the rest of that year I found tasks harder and harder and looking back I truly have no idea how I thought I could cope with the move to Liverpool and the rigours of doing the teacher training course I wanted to do. Not only did I manage it but on one of my placements they took me on for taking night classes in A-Level Chemistry. I was pushing myself really hard and it is only through blind luck that I got so far into the course before my lungs failed. I had been feeling exhausted almost permanently and blithely put it down to the course rather than my health. I got a bit of a rude awakening with the fungal pneumonia and it's been a waiting game ever since.

I used to think that I had been robbed of a large chunk of my twenties through my various health issues but looking back through it I did a lot more than a lot of people who had no health problems did and have to give myself credit for doing that. I know this whole post has been a bit self promoting but I'm coming to terms with just how amazing the life I have led has been. 12 years post transplant and with laughable levels of respiratory function I'm still confounding doctors and that has to be celebrated. There's an old Chinese curse that goes 'May you live in interesting times' that I love for it's acidic tone. Well my life has certainly been 'interesting' and myself as a student starting out couldn't have asked for more than that.

You'll remember I said earlier that there was more to the story of me missing my 30th birthday meal. Well that meant that my younger sister Janine changed her plans and went out with her own friends instead and met up with an old school friend, Tony. Well they started going out and today, exactly 5 years later, he proposed to her and she said yes so I have a wedding to hopefully be better for next year. They kind of stole my thunder on my birthday but I genuinely couldn't be happier for the pair of them.

I know the equilibriums there

See everything I said in my last post; that and more. That is to say that using the nebuliser (with saline solution) and the flutter device to help clear my lungs of the nasty things that normal people just breathe in and out is continuing apace. When sitting at rest I can get my blood oxygen saturation level (sats) up to 95% now where before it was a pathetic 85%. To place this in some sort of context a normal person will be near 100% oxygen saturated in their blood. Once when living in Belfast I went to the respiratory clinic and they found that my sats were 95% and kept me in overnight because they didn't believe that someone could be walking about casually with sats that low. That's the sort of level you'd get with a patient with a chest infection of one sort or another so they wanted to check I was clear even though I felt totally fine. The fact is my lungs were slowly decreasing in function but doing it at such a slow rate that my body was acclimatising as it was happening.

So what does this increase actually mean? Well the first thing it does is make me look healthier. The more oxygenated your blood is in your veins the more red the blood is and if there are veins close to the surface you have more colour about your face. That, allied to remaining at a perfectly healthy 60kg means people keep commenting on how healthy I look, in spite of the facial furniture of the the oxygen tubes. I performed a little experiment to satisfy my curiosity and didn't use my PEG tube for overnight feeds for four weeks and actually gained a pound so I'm obviously doing well with meals. I'll keep the PEG tube though for those times when I'm completely off food, which happens as soon as I feel even slightly unwell.

Let's place this in context though. These sats are while I'm sitting about doing nothing. As soon as I try to do anything even mildly exerting the fact that only 16% of my lungs are fully functioning kicks in and my sats plummet as I quickly go into oxygen debt. So while my newly improved oxygen level has allowed me to go out more often I do still feel quite weak at times.

On that note it being Christmas time my old school friends and I went out last week for our annual Christmas meal for the 17th year running. We've done it every year since we left school and normally we wait until the 23rd (my birthday) as that allows more people who live away from home to get back for it but it just wasn't suitable this time so on Saturday the 1st we went out for a bit of a meal and drinks. I also had friends up visiting from my time doing my PGCE in Liverpool up so they came along for dinner as well. I sat with them trying to catch up on everything that's going on. One of them was also a friend from my time in Belfast, and indeed put the idea of going to Liverpool to do the PGCE in my head so I've known her for a good few years now. She got married earlier in the year to one of the other guys from the course who was also up and it was gutting that I couldn't go back over the water for their wedding but they got to tell me all about it. The third visitor was one of my best pals from the course so it was really great to catch up with them all. 

I'm going out with the school guys again just after Christmas for drinks which should be great if I'm up to it. I've been so well, relatively speaking, for so long now that I'm becoming quite comfortable in the wait for lungs. No longer am I fretting about how soon it'll be because I seem to be relatively stable so the people in charge can wait for the best possible match they can find.

So let's set the world on fire

So if you go back a month or two you may recall that I have been getting some help from respiratory physiotherapists. They gave me a nebuliser and saline solution to take twice daily as well as a little device called a flutter, which you blow into and bounce a metal ball bearing, causes your airways to open up a bit. I don't know whether it's one or both of these two additions to my daily regime that has led to an improvement in my breathing but there has definitely been one.

I had the respiratory nurses out for their half yearly check that I'm coping ok at home a few days ago and when they placed the probe on my finger to measure my oxygen saturation level they got a figure of 92%. Compare this to just a month or so ago when my normal figure was 85%. It's little wonder I've been feeling so much better and able to do so much more just from having so much more oxygen coursing through my veins. I've even managed a few trips out to take advantage of it. A few weeks back I went out to meet my mate Marty who was over from Belfast for a drink. If you had told me months ago that I would be drinking Jaeger-bombs at any point in my future I would have laughed in your face but there I was happily throwing it back with the rest of them. Now, with the added weight and the extra colour about me from the increased oxygen sats it quickly became apparent that even in a wheelchair and with tubes going into my nose I was probably the healthiest looking person in the pub outwith the staff. Marty and I always favoured the perhaps less salubrious of drinking establishments in my two years in Belfast and the same held true over here. It was a REAL pub. I thoroughly enjoyed myself doing something a little bit wrong for once and, prompted by others, even got involved in a bit of a sing-song. A slightly tipsy, wheezy sing-song admittedly but a sing-song nonetheless. It may have been the drink talking but three separate men that night referred to me as a 'handsome wee bastard'. I will genuinely take compliments like that anywhere I can get them.

And so it comes up to the Christmas festivities. It's good to know that I'll probably be able to manage to go out to all the things we usually organise around my birthday and Christmas. There's usually a big meal with all the guys I went to school with and a decent pub session in between Christmas itself and New Year that gets a decent turnout from everyone who lives away from home. I'm even getting a visit from some of my friends from my time doing teacher training in Liverpool. I love this time of year.

Nothing more, nothing less, only love

I usually try and formulate what I want to say before putting a post together so I can come across all eloquent and intellectual but I'm going with a more stream of consciousness effect for this one because I've got lots to say and no really sensible way of tying the different threads together.

Firstly I had an endoscopy last week to replace the tube that goes into my stomach, through which I pump liquid food to keep me at my pleasantly plump (and healthy looking apparently) current weight. There really is no fun way of having an endoscope stuck down your throat to remove the old one by physically hauling it back up and out and the general misery of it is compounded when the sedation they give you hasn't really worked. It was a shite way to spend an afternoon and all the coffee and biscuits in the world didn't make up for it. I don't know if it really is linked to such a relatively minor procedure but I felt rubbish for the whole rest of the week. Anyway the replacement one is in and this time it is only held in place with a water filled balloon rather than the mushroom fitting of the old one. This actually means a bit more maintenance as you need to replace the water in the balloon weekly, for which I apparently need the help of the district nurse. She is coming tomorrow to show me how to do it and we've already agreed that if she's satisfied that I know what I'm doing she'll just supply me with the equipment and let me look after it myself rather than have her come every week for such an easy job. After all I looked after my Hickman lines perfectly well back when I had each one of them popping out my chest and that required a sterile environment and all manner of paraphernalia. Anyway, if all else fails I've got two sisters who are nurses and I'd rather use their time than a district nurse who probably has dozens of patients a day to see.

Secondly I feel I need to address something and this is the thing I'm really struggling to put into words. Today I was reading about a post lung transplant patient who is having complications and needs to have a biopsy done to test for lymphoma and it brought into sharp focus for me a bit of an issue I have. I worry almost incessantly about what life is going to be like post transplant for me. I do this because I've done it once before and know full well that the treatments doled out by the medical profession often come with horrific side effects. After all my current predicament of needing new lungs is a direct result of the treatments I had to cure me of Leukaemia. I have no idea what fresh horrors life post transplant could bring my way, I only know that I at least want to see what life has to offer me. In talking briefly to this other patient today I told her that it's ok for her to be scared and to let her friends know that because, and here's the crux of what bothers me really, I think that friends, with the greatest will in the world, mostly think that after a transplant you're past the worst and will keep getting better. Whenever some problem arises they are so used to us patients being brave or strong or whatever other adjective they want to throw about that they don't always see that we're just as terrified as they are, and that is our own damn stupid fault because we don't bloody tell them.

I have a few friends who think through all the consequences of what my post transplant life will be like and I'm very lucky to have them to talk to about these sort of things, but for every one of them there's at least five who don't really understand that my life post transplant is going to be a never ending drive to avoid infection because my immune system will be compromised. Even under the best scenario it'll also have a periodic round of bronchoscopies (tube up the nose and down into the lungs - a true joy) and biopsies for the rest of my natural life. I know normal is a figment of my imagination but my life is going to be so complicated for so many different reasons that I'm not sure that even I can comprehend it fully. So how can I expect other people to? The answer really is that most of the time I don't, but when I see someone clearly struggling with their lot in life and people are offering little other than bland platitudes about how they'll be fine because 'they're a fighter' or that 'you've beaten worse than this before' I reserve the right to get hacked off on their behalf because words like that don't help. Not really. Sometimes when you're crying through fear you don't need someone telling you it's going to be all right, you need someone to tell you they know that the situation is shite but that they'll hold you as you cry.

On a slightly lighter note, while I've never been a great James Bond fan, like most young boys I watched all the films and, being as obtuse as I sometimes am, I always loved the one that is generally regarded as most lowly of them, On Her Majesty's Secret Service. Yes, George Lazenby was rubbish but unlike most of the other films there was a somewhat coherent plot, a wonderful score and an ending that beats all the other films hands down. It ends with the Louis Armstrong song We Have All The Time in The World and I have made a promise to myself that post transplant I'm going to find a kareoke bar and sing that most appropriate of songs. I'll cry my eyes out when singing it and no doubt will take a few people with me but I want to do it.

With all that's gone before, my motives never felt so pure

So the respiratory physiotherapy I've been having is definitely having a positive effect. They're not miracle workers and they have commented that my lung function is particularly low, but at least it's a stable low and not getting worse, but that they can work to make the most out of what lung function I do have. I've already mentioned that they've given me a nebuliser to break up the stuff in my lungs that I can't normally cough up. Well last week they gave me another wee tool to hopefully open up my airways a bit more too, which should help me get the best out of my lungs. It''s actually a relatively simple little tool called a flutter which consists of a pipe which you blow down a tube into a chamber which contains a small plastic cradle for a ball bearing. Now when you blow into the tube the ball bearing lifts and then bumps off the roof and settles into it's cradle agaiin and this repeats again and again giving it the fluttering effect of the name.

With a little bit of practice you can get it to flutter at about 15Hz (15 times a second) which is apparently optimum for opening the airways because it resonates with the bronchi in some way I'm not entirely sure I completely understand but it's something to do with a positive pressure being created. It's obviously (along with the nebuliser) having a bit of an effect as I've felt I can breathe much easier in these last few weeks than I can honestly remember. 

I've even been out to the pub last Saturday night when my best friend was home from America, and quite a few other people I didn't really expect to see were out, which was just fantastic. One slightly dramatic side to that night out was that I was having such a good time that I barely noticed the passing of time and my liquid oxygen actually ran out. When the cylinder empties it doesn't do so in a linear manner, by which I mean when it's still half full that doesn't mean you've got the same length of time left that you've used up already. This is because when the cylinder starts to empty there is a greater space above the liquid for it to evaporate into so it can quite rapidly go from what appears to be half empty to completely empty. Thankfully one of my friends Lynn is pregnant so she could give me a run home in the car, which was most fortunate as it would have been an hour or so for a taxi. That said that episode did show that I can go for about an hour without oxygen and there aren't too many ill effects except for feeling exhausted the next day but that would have been the case anyway.

Seeing so many people on that night out and having a lot more visitors over the last few weeks or so has been absolutely great. It's far from a normal life but it's a new kind of normal for me and that makes it much easier to live with.

Come play my game I'll test ya

I have a new mechanical addition to my treatment regime. After a visit to the Respiratory Physiotherapist, ostensibly to learn methods of making the best out of the lung function that I do have through some techniques to clear my lungs of the sort of nasty things that everyone breathes in but can get rid of quite easily, I was given a machine to help. Lung tissue has small hairs called cilia (see accompanying picture) which all move in unison a bit like 

sea anemone do under water. This is important because it moves mucous in the lungs along in a fluid motion and hopefully out of the lungs. Where the cilia are damaged, like mine are, 

they all move in a disparate fashion so any mucous in the lungs really just kind of stays there and accumulates until, in my case at least, I cough up a nasty, solid lump. In the days leading up to that my breathing becomes even more laboured and wheezy because the mucous lines the airways making the pathways a bit thinner so less air can get in or out.

Like I said in healthy cilia the mucous gets carried along atop them but it's with the aid of a layer of liquid and this is something that I lack so what the Physio gave me is a nebuliser (a machine that makes liquid solutions into vapour for you to breathe in) and saline solution to hopefully coat the cilia that I still have to help clear the nasty stuff in my lungs. I've only been using it 5 days and already I can feel a notable difference. Normally I have a very dry cough and crackly sounds on my chest that I can hear even without a stethoscope but these have diminished markedly already. Now while it's not a terribly glamorous thing to talk about, the joy of being able to clear my lungs of nasty green stuff has made me genuinely happy.

We never got round to the breathing exercises to help further but I'm going back to see her in a week or so to get started on that. I've spoken to a few people who have Cystic Fibrosis about this and they say it makes a massive difference to them and they've got similar issues to mine so I'm very hopeful about being able to do even just a little bit more. I've even ventured downstairs more often than I normally do in the last few days so I'm clearly not as worried about the stairs as I normally am.

This has not been without incident though as I was down seeing my niece and tickling her the other day and she decided she was going to try and tickle me back and accidentally pulled on my feeding tube. Ouch. Thankfully a toddler doesn't have the real strength to pull it hard enough to really hurt but it did make the eyes water a bit.

I was out the weekend before last for an old school friends birthday meal which was fantastic as well. I went through a wee period there when I wasn't confident when going out of the house at all but I went along without even taking the wheelchair and just about managed. The meal was excellent and I even had a couple of drinks for the first time in a year or so. My best friend Dave is home for a few days over the weekend so here's hoping I can get out to the pub to see him. If not he'll come by but I'm beginning to place some importance on pushing myself so I'm determined I'll get out for a bit to see him. Confidence seems kind of self fulfilling, once you get a little bit of it, you just get more and more and more.

Na na na na, na na na na, hey-ey-ey, goodbye

I should know better than to start any post on here saying that nothing much is happening. Today, too much happened and not a great deal of it was much fun.

I was at the Beatson Oncology Centre for my monthly going over and Immunoglobulin (immune booster) transfusion. My consultation with the doctor went fine and I carried on just as usual to the day care unit where I was to get the transfusion. As well as that though I was to get the PEG tube (the tube that goes into my stomach to feed me liquid food overnight) replaced. Mine had been in a couple of months shy of three years even though they usually only stay in for two. Mine was still working perfectly so none of the dieticians or nurses saw fit to remove it as long as I could still rotate it and push / pull it at its entry site. I've still been able to do that so the only reason it was being replaced was because the tubing itself was discolouring from prolonged use and, due to having to cut it every time the end of it needs replaced, it was actually getting quite short. Now when it was inserted it was done endoscopically with a surgeon placing it into my stomach before puncturing just above my belly button and into my stomach and pulling the correct end of the tube out. It was secured by what they call a mushroom fitting to stop it coming out. This is where the problem lies. Even though I can still rotate the tubing on it's axis and move the tubing in and out the mushroom fitting which should, with a certain level of brute force and ignorance, be able to compress and come through the hole leaving a space for a replacement was steadfastly refusing to co-operate. Both nurses had a decent go at it but it was simply too painful to carry on. Without wishing to blow my own trumpet I have, according to many, many doctors at least, got a very impressive pain threshold. I've had loads of things done over the years where I haven't flinched regardless of what they've thrown at me so I feel I have an air of authority when it comes to pain, but this was a mixture of pain and outright discomfort that wasn't worth pushing (or actually pulling) any further. So now, joy of joys, I have to get it replaced the way they put the fecking thing in in the first place, with an endoscopy tube down my throat. I can get it done at a day surgery and it's not really that big a deal as it'll just be local anaesthetic and sedation for it but I'd still rather it have just came out easily today like they promised.

After they had given up on that the day unit nurses then took turns at using me as a pin cushion. It took three separate nurses 4 attempts to find a vein that they could use, and that was after placing my hands in a bowl of hot water and trying to heat them up with a small electric blanket and all the tricks they try to get your veins to rise to prominence. All through the last dozen years or so I've always had great veins for either getting blood from or for pumping drugs into but the first stop veins that have always been so useful have had their day. They've survived a lot longer than in a lot of patients so it is pretty much amazing that it took until now before they started to fail but it's still a real pain that they're gone. Each time a nurse tried to use one of those veins it looked good and then it just collapsed - a sure sign that they've just been used too often. So like a junkie we are now looking for less obvious veins to use and eventually they found one in my inner arm that was capable of holding a cannula in place so they could feed me my immunoglobulin goodness.

One nice aspect to my day there though was getting to see my old nurse from when I was admitted for the Bone Marrow Transplant all those years ago. Collette was in fact the nurse who shaved my head when my hair started falling out after my radio and chemotherapy. She now works in the apheresis unit which I rarely have to ever venture near so I only ever see her in passing but she came over for quite a long chat today. I was filling her in on where we are in the pursuit of new breathing gear for me and she was making me insanely jealous with her chat of leaving to go to Cuba on holiday tonight. It really was lovely catching up with her. She caught me a little off guard when she commented on how much I had, and still have, to go through and how I've dealt with it all in such a wonderful way. When my friends tell me things like that I tend to brush it off and tell them they'd be the same if it happened to them, but this is a nurse who has seen hundreds of patients like me and all their responses and she said that I have handled the shitty hand that I've been dealt with more grace and patience than pretty much any patient she's ever had to deal with. Allied to the testaments of my various consultants which echo what Collette had said I'm beginning to come around to the way of thinking that I have indeed dealt with what has been thrown my way in a relatively unique manner. 

I actually feel quite proud of myself.

You've Never Walked Alone

There's not really much going on just now but I thought I'd talk about the BBC programme Horizon from Monday night. It's almost always a great show and this was no different. It was on the topic of what are referred to in the popular press as 'superbugs'. I've never liked that title as they're just normal bacteria, evolving in a perfectly normal way to survive certain conditions imposed on them. That's just me being pedantic though. The reason I bring this up is that they are the things that really terrify me. They are bacterial infections that don't respond to commonly used antibiotics and so can kill people easily in an outbreak. Of course everyone can catch these infections but what usually happens is that people catch these resistant infections when they are in hospital for something else. I've got a greater chance of getting an infection that would require a stay in hospital so I, theoretically at least, have a greater chance of exposure to a drug resistant strain. Now I haven't been hospitalised for an infection for three years now so it's not that big a deal but this Horizon programme brought it into sharp focus just what a reality it is that we have misused the antibiotics we do have at our disposal. People demanding them from GP's, or in some countries just being able to buy them over the counter, for things that they have no efficacy for is a big issue but the widespread use of them in the food industry to allow animals to live in very close quarters to each other without infection spreading is also a massive issue.

The only other thing that's going on just now is that I've become a neurotic mess. Where I told you previously being put on to the active transplant list had given me a solace after years of fretting as to whether I would even be allowed on the list, I have now graduated to jumping every single time either the house phone or my mobile phone rings, wondering whether that's the call that will send me down for the transplant. I'm sure I will calm down over these next few weeks and that it will be when I am least expecting it that the call actually comes.

I've been deeply affected today by the news of the independent panel's findings on Hillsborough. I watched it all pan out on live television at the time and went to the tribute game that Celtic played against Liverpool a few weeks after it and stood with my family, arms interlocked with fans who had travelled up to Glasgow for the day all crying our eyes out. I was living in Liverpool when the 20th anniversary of the event came around and because I lived just round the corner from Anfield I walked up to the stadium and found myself amongst a massive number of fans of many clubs (and none) and found myself chatting to strangers from all over the country who felt they 'just had to be there'. Again there were streams of tears. The scenes in the front of St George's Hall in Liverpool today just set me going again. Now these people who have waited for 23 years for justice have a little consolation that their truth has finally come out. I have a tattoo on my wrist that says Quis custodiet ipsos custodes, which roughly translates as Who Watches the Watchmen? It is entirely appropriate to consider that very question today when our police force will fabricate stories to cover their own backs and nearly get away with it. The answer to that age old question is that it is up to us to keep the 'Watchmen' honest and if it weren't for the tenacity of the families of the deceased they might well have got away with it too. Now that the independent panel has ruled that the police and emergency services not only failed in their jobs but tried to cover up their failings, the findings of the previous inquest have to be readdressed. It is the very least the people deserve.

Give me a second I, I need to get my story straight...

I've been agonising over this post for weeks now primarily because I needed to get my fuzzy brain into gear and able to put down what I really think about the subject but also because I know it closely affects people that I care about.

You see I'm going to write a bit about a friend of quite a few of the people that I went to school with who unfortunately died as a result of secondary complications after a kidney transplant. She unfortunately developed skin Cancer which was misdiagnosed by GP's and the overall feeling is that she wasn't given adequate information to give 'informed consent' prior to her transplant. You can read more about it

here

Now what you may ask am I doing getting involved in something that is so emotive and you'd be right to do so. Well the reason for it is two-fold. Firstly I have to say that it is entirely at odds with my own experience of two transplant procedures (bone marrow and double lung) where I have been given nothing short of mountains of documentation and consultations detailing the risks of what I was to (or in the case of the lung op am hopefully about to) undertake, whether they be the immediate risks of operations or the long term risks of the mind boggling radiation levels I was exposing myself to, and the short and long term risks of the drug regime I would need to be on to suppress my immune system post transplant. In fact in my first meeting with my main consultant who took me through the whole process I was told eight times in a half hour consultation of how my treatment for the bone marrow transplant could kill me. To say I was given informed consent is to massively underestimate just how well drilled I was. The crucial point relating to the above case is that I was told expressly that both the radiotherapy and the immunosuppressant drug Cyclosporin that I would have to take would massively increase my chances of developing skin Cancer later in life. These things of course are relative because even massively multiplying the chances of developing skin Cancer by the normal prevalence in the population statistically leaves a relatively small risk. So Shaz was really, desperately unlucky to contract it.

That brings me to my second point - you are told of many such risks (like I said 8 different ways to die) but it is my experience that even armed with this knowledge that patients deal first and foremost with the thing that categorically is going to kill them and then worry about the statistical likelihood of developing other conditions based on your treatment should they present themselves in the future. So I get to wondering whether in the above case if they were in fact better informed of the risks associated with Cyclosporin (which is after all a group 1 carcinogen) would they have still opted to go ahead with her transplant? My own experience coupled with the dozens of other patients I know who have undergone transplants is that she would have gone ahead with it even accounting for the risks. Of course she may not have, and been the exception - I don't wish to speak on behalf of anyone, especially not someone with no option to correct me if I'm wrong. After all like I said earlier transplant patients are nothing but pragmatic and do tend to focus on the tangible threat in front of them and will only worry about the long term implications if they actually have a long term to even worry about.

All of this though is to miss the point entirely. My experience is palpably different from that of Shaz. She didn't receive all the information I did and I wonder why that is. Part of me wonders if it is down to just how tenacious I was when I was first diagnosed where I was constantly asking questions of the transplant staff coupled with them knowing I had a degree in Medicinal Chemistry so they were prepared to talk to me at length about what the treatments did. I also knew a fair bit off my own back from having studied anti-cancer drugs as part of my degree and have amongst my friends a pharmacist and a doctor who were always available to answer any questions I wanted clarification on. Most patients don't have that background or are fortunate enough to have friends that are able to help as much as mine though and so rely entirely on what their doctor tells them and here is the crux of this case. Shaz was desperately let down by her primary carers and by the doctors who didn't recognise a lesion as being skin Cancer even though her medical history should have set alarm bells ringing loudly.

And so to my conclusion. Even though it doesn't relate to my own experience I am firmly behind the campaign by Shaz's family to ensure that absolutely no patient is left without the power to give INFORMED consent for their own treatments.

I hope that everyone understands what I just wrote and gets just why I have really struggled to compose my thoughts about it. 

P

So tell me; am I looking better?

Well here goes - I am now officially on the active lung transplant list. All the administrative stuff has been done and now the wait begins. Now this doesn't make a single bit of difference to my everyday life but somehow it feels like a different kind of waiting to what passed before. Then the waiting was always tinged with a nagging worry that they would find something that would preclude me from being suitable (or even able) to be put forward on to the list. Now the wait is based on a much more comfortable premise; that some day in the near future I'll get the phone call to tell me to get ready to go down for the operation. That is, psychologically speaking, a totally different type of waiting. All I need to do is to keep my health relatively stable, which it has been for a long time now, and I won't have anything to worry about.

The only caveat to all this is that I need to let the transplant co-ordinator know if I develop an infection worthy of a course of antibiotics, as that will preclude me from being able to be operated on. In that instance I'd temporarily be removed from the list for the length of the course of antibiotics. It's up to me to keep them informed of any slight change to my health. I'll also need to go down to Newcastle every three months for an overnight stay to get the normal tests to see if there's been any tangible change in my condition, most notably what antibodies they find in my blood as these are imperative to finding a good match and having a relatively trouble free recovery. 

With the news that I'm now on the list the transplant team have requested that I have any dental work required done and I'm happy to report that I've had that nearly all done now - I just have a single filling that needs to be replaced to be done next week. They are also adding some mouthwashes to my repeat prescription list with my GP as dental health is a real marker for your overall body health. When I spoke to the maxillofacial consultant today she said that the x-rays have't shown up anything untoward and from her inspections there's nothing to concern the transplant team so she's happy to sign me off as being in perfect dental health. I mentioned to her that there are certain foods that seem to trigger blood blisters in my mouth and she said that isn't uncommon for people who have had the treatments I've had. It's a sensitivity to acidic things that causes it apparently and I deal with it through the use of mouthwashes like I have done since the bone marrow transplant, but she did say if I have even the slightest problem with it to give her a phone as she'd be interested to see a flare up to rule other things out.

As well as dental health I had to have a course of vaccinations which have all been completed now so all things considered I'm ready to go. I'm even getting my bag ready with clothes and all the other stuff I'll need to take with me down should I get the call.

Having read a few other people's blogs I know that getting the call doesn't necessarily mean that I'll get transplanted because the transplant team often decide that a set of lungs that were deemed worthy by the team who harvested them aren't actually good enough to be used for transplant. So it could come to pass that I could be halfway down and get told to turn around or I could even be all prepared and ready to go and they decide not to go ahead. This is just something I'll have to deal with should it happen and not worry in advance about as it's outwith my control. This is something that will hopefully become much less prone to happen with the advent of the ex-vivo lung perfusion process that is now being used, which makes many more sets of lungs viable for transplant so hopefully my first trip down will be the only one I'll have to make.

On the Saturday just past there was a requiem mass held for my friend Alice Anne, whom I have spoken of in my last two posts, which allowed many more people to pay their respects than the hastily arranged cremation service of a few weeks ago. Having a religious service clearly helped the family come to terms with their grief and even the deep rooted ex Catholic in me could see that it was a powerful force for good. It was lovely to catch up with even more people from my days in school but it was not easy in so many ways, one of which is down to my own vanity. I decided I was going to try and show how strong I actually am and so didn't take my wheelchair. Now the distance between the car and the church I could handle, just as I could the stand up - sit down - stand up again - kneel progress of the mass but what I hadn't accounted for was the standing about talking to people after the service. I managed for a while and then just had to resign myself to sitting down and catching people's attention and they would come over and talk to me where I was perched. It was a smidge embarrassing to have Alice Anne's mum running about after me making sure I had a coffee and something to eat but my mum told me to just let her do that as keeping busy was what was helping her to handle things. I had a wee chat with her which was absolutely heartbreaking because even in her moments of great personal grief she was telling me how she prayed for me regularly. Indeed that seemed to be the running theme of the day. The number of people who told me that I was the object of their prayers was humbling in ways that I can't possibly conceive to explain. I was also told by many people that they were really surprised to see how well I looked because, having heard of how grave my situation had been previously, they perhaps were expecting to see someone looking as bad as I did two years ago. I've always been wary of compliments since the days where people told me that I suited being bald after my hair fell out post-radiotherapy (I really didn't) but I took the compliment that I was looking well on Saturday entirely at face value because I've actually noticed it myself recently. The extra weight might mean I can't fit into a lot of my clothes now but I look a lot healthier than someone in my situation probably should.

I clearly overdid it, even sitting down talking to people and when I got up to leave I didn't feel so steady on my feet so when the offer came from my old friend Monica for an arm and someone to lean on while we slowly ambled to the car I took it without hesitation. This is a sign of progress for me as I can be terribly bloody minded about wanting to do things myself but I've no reason to let pride get in my way with such an old friend so when the offer of help was given I took it graciously. We all made the usual promises to try and see each other without waiting on something as dramatic happening and while I know that real life often gets in the way of these plans, especially now so many of them have families to deal with first and foremost, I do desperately hope we all see each other sooner rather than later as, like I said in my first post on the topic, these are the friends who knew you as you were actually becoming you, and that is a very sacred position. You never have friends quite like those you made as a teenager. Far be it from a heathen to express such thoughts but God bless every one of them.

Let it go, and so fade away

I've waited a few days till I felt I had my thoughts clear on the topic before I tried to articulate them on the events of the last week or so.

First off I have to admit that I've never found myself comfortable in a crematorium. I know that may sound a stupid thing to say considering the reasons you find yourself in them but I've been to dozens of funerals in churches that haven't felt quite as cold physically or metaphorically as the crematoriums I've had the misfortune to be in. I don't think it's helped by the fact that, and I really hope you'll pardon the expression here, but that they're a conveyor belt for saying goodbye. You have your one hour slot and that's it, you have to leave and empty the car park for the next group of grieving families and friends. As a direct result of that prompting I didn't get a fair chance to talk to or even say goodbye to some of the people that were there that had to get back to work, having foolishly just assumed that everyone has the same free time as I do.

Having said all that the service itself was genuinely lovely and the eulogy for Alice Anne was not only funny but it encapsulated certainly what I thought of her and knew of her. That a life can be compressed into a ten minute eulogy is of course to leave out a staggering amount of what made them the person that each of us loved in our own personal ways but it was a credit to those that put it together that it made me smile through the tears.

In the period before we were shooed away from the front of the building I had to wait to try and catch people's attention so they could come over to me as being stuck in the wheelchair meant I couldn't just go over myself. I had been a bit worried beforehand that those who hadn't seen me in the last couple of years might be a bit freaked out by the chair and the tubes but if they did they hid it rather well. It was a self centred conceit obviously but I was so worried that me appearing to be sick on what was an already very traumatic day might have been upsetting to some. Not a bit of it though, I was treated just like everyone else and rightly so.

When I caught sight of the girls from school I got up out the chair to give as many of them a hug and a kiss as I could before having to sit down again. I even got a great big hug from Maureen's mum who I hadn't actually seen in years but who asks after me regularly when she bumps into my own mum around town. I've always had a soft spot for Mrs B as she's one of the few people who saw me in the immediate post bone marrow transplant period when I was still bald and had a feeding tube up my nose and she spoke to me like there was nothing untoward at all about that and never saw fit to patronise me the way plenty of others did. She just simply asked me how things were going so she could pass on news of progress to Maureen.

When we moved across to the function suite for the post service coffee and sandwiches me, my big sis and niece Maria sat with the girls who had remained and had a lovely chat about what was going on in all of our lives. Naturally I hogged the conversation a bit, letting them know exactly what stage I'm at in the pursuit of a new set of lungs and that I'm staying at home while waiting. I hope that I can get some of these new old friends to become part of my roster of visitors because it really was wonderful seeing them all again. Like it always was with Alice Anne, the years just rolled away and we talked like no time at all had passed. I'd love to hear more from them all about where their lives have taken them in the meantime though.

When time came to leave we had a brief chance to speak to Alice Anne's husband who was impressed with my decision to wear my Celtic tie as he felt she would have found it entirely appropriate and I explained the story of her meeting my parents up at Aberdeen and the press photo from it which raised a smile, but because my oxygen supply wouldn't last much longer I had to excuse myself from going to join the remainder of people from going to the pub. He said that was certainly an original reason for someone to have to leave. I got wheeled up to the car park and went over to see all the girls off by again making the effort to get out the chair for another hug for them all. I've always been a tactile person and these hugs were entirely for my benefit. I just about managed to stifle the tears.

I don't know if anything will change as we've all been living parallel lives for so many years but as I said in my previous post on the subject the friends you make at school are the ones you feel know you the best and force you to be the most honest with.

When I got home my mind was still racing with thoughts of Alice Anne but then after a couple of hours I hit a brick wall and thought I would just have an hour or so of a snooze and woke up five hours later. The day had obviously taken an emotional and a physical toll.

One of the things that I've had to address in this last week or so is that I'm not prepared in case something happens to me, so I've started to consider the realities of the many varied ways in which I could find myself shuffling off this mortal coil. This isn't a morbid pursuit, it is entirely practical  because I'm at risk every single day, whether it be down to the fact I'm so open to an opportunistic infection destroying what little lung function I have before I even reach transplant or the very real likelihood that something could go wrong in the operation itself, should it come. How to let everyone know is the main thing that concerns me and I want to minimise the trauma that my sisters will have to endure so picking people that need to be phoned and told directly and those who can disseminate the news through my friends from my time in Cardiff, Aberdeen, Belfast, Liverpool and here at home needs to be done. I also have to think about how I want to be treated. Honestly in spite of my not considering myself Catholic these days I think that the fact that so many of my family and friends are would push me towards having an entirely Catholic ceremony and burial. From preparing the booklet for my dad's funeral service I feel I have a notion of what I want to be read and sung at the mass, as well as who I want to be delivering the readings, carrying my body in and out of the Church and even lowering me into the ground. I have such a firm grasp on these ideas because of what happened to me a couple of years ago. When I was in the hospital and weighing only 41kg and dangerously close to my organs shutting down I had plenty of time to think not only about the likelihood of it happening, but also that I wasn't at all scared of it. In a chat with my ex Katherine this week I even admitted for the first time that there have been the odd few times where I honestly thought I didn't have enough fight left in me to go on. I'd never admitted that to a single soul before and I was in floods of tears telling her but having been reassured by her that it would have been mental if I had never had those thoughts I feel it's safe to share with a wider audience now. Anyway, those feelings passed and it turns out I'm incredibly stubborn and got through it and now I couldn't be further from feeling like that.

So, it turns out that the death of a dear friend has forced me into thoughts that I really hope people don't perceive as self-indulgence and take at face value as the thoughts of someone who is now just a little bit more aware of how fragile life is.

Goodbye my friend

I'm struggling somewhat at the moment. I've barely slept over the last few days because my brain is buzzing, and not in a good way. If you'll indulge my self involvement for a moment I'll tell you why.

I found out late last week that one of my friends from my time at school, Alice Anne, had died. In fact she had taken her own life, I'm sad to say. Now this has totally and utterly pulled the rug out from under my feet. You see I've spent the last twelve years or so of my life living with the notion that, due to my incredibly complicated medical history, that my luck wouldn't hold out forever and one of the infections that I get would eventually kill me. I've come to terms with that, I had to when I was lying in a hospital bed in isolation and weighing 41kg and barely hanging on as my body of doctors fought to repair my bedraggled body. Now, aside from the permanent issue with the lungs, I'm the most stable I've been for years but still all it would take is one infection to beat all my defences. Now I've got rather good at self diagnosis and can spot something brewing and act accordingly but like I said I've always laboured under what now appears to be the misapprehension that I would be the first of what my best friend Dave today rather eloquently called 'The Old Team' to go. I was prepared for that; what I wasn't prepared for was this.

Just over a year ago I spoke of my friend Gavin taking his own life and how it affected me but this is just another level entirely. Gav was someone I knew as a fully fledged adult and you can only really know so much about your adult friends but Alice Anne was someone I went through secondary school with. Like Dave said, The Old Team, and they REALLY know your whole story, so you can't kid them on. Her parents were friends of my mum and dads so she was one of the first people from a different primary school that I sought out when I started there back in 1989. Hers was a family of seven kids and mine has five and there was a fair bit of overlap between our families. It seemed like every other year had a Devlin kid or a Kilday one. It's incredibly facile to eulogise about someone when they've died and ignore their flaws but from my perspective she was always one of the good ones. I think I liked her so because she was not only gregarious but there was a mischief with her that highlighted a very keen intellect. We sat together in our Standard Grade English class for only a short while as we were always getting the other one in trouble for talking, mostly in rather cruel terms about whatever literary 'masterpiece' we were being peddled at the time. She really did get me into trouble as often as I did her which I found to be a rare talent for a girl. As was the practice of the time (and probably still is now actually) in matters of the heart it is the best friend who tells a second year boy that he is no longer going out with her best friend and indeed it did fall to Alice Anne to deliver that news to me that I was indeed no longer her best friend Maureen's boyfriend. She took me aside and told me in the most caring and compassionate way that such a devastating blow to the fragile ego of a 13 year old can be delivered, giving me a big hug afterwards. 

She was a talented musician and artist, whereas I was far more maths and science so later years in school we were in fewer and fewer of each others classes but remained good, solid friends.

After we left school we met occasionally in the west end of Glasgow round about the Glasgow Uni campus and no matter how long it had been between these sporadic meetings we just lapsed back into the old routine and talked as if no time at all had passed between.

After Uni I moved away so even these chance encounters were to be no more but on very rare occasions she bumped into my parents at Celtic games and I would get an update on how she was getting on. On one of her meetings with my parenting team both they, my sister Janine and cousin Andrew as well as Alice Anne and her husband managed to get into a press picture of the crowd at the game up at Aberdeen so when she found out of my dad passing away she hunted it down and it still takes pride of place as the background on my mum's laptop. Later on the advent of Facebook allowed us to get back in touch and again we spoke like we had never been out of contact. I find that to be true of all the best relationships I have in my life. I can go months and even years without speaking to some of my friends and yet lapse into conversation like there's been no gap at all. 

I think that's what I'm struggling to come to terms with. Intermittent as they were, I always loved having a chat with Alice Anne and knowing that I'll never have the pleasure again is cutting me deeply. Of the stages of grief I'm still firmly in the denial stage thinking that it just can't be true. I've had a bit of a chat with the aforementioned Maureen about it all (she too is one of those friends I can go months without speaking to but don't miss a heartbeat when we start up again) and I can only imagine she's feeling it a lot harder than I am especially as she's had to break the news to a lot of people. I've done the same and literally talked myself hoarse going through the tragic story to the other members of The Old Team.

There is a service on Thursday at Perth Crematorium which is well within my range for my portable oxygen cylinder so I'm going up for it. Most of the people that I'll see there know that my health hasn't been the best but I hope they're not too upset by the sight of me being pushed in my wheelchair by either my sister Clare or my niece Maria (I've yet to decide which of them I trust more with steering) and with the tubes pumping the oxygen into my battered lungs.

As I learned through a similar thing happening with Gav, the only way I could find consolation is that whatever was going on in their lives and whatever demons they were facing, knowing that they are at peace now brings some comfort. It's not much comfort. In fact it's nowhere near enough but it's all I've got so I've got to cling to it.

Rest in Peace my friend - I hope you knew how much you were  loved

Paul

Who would know what could've been?

As someone who used to have a form of Leukaemia I receive a periodical quarterly called Journey, which is about all new treatments and stories about patients who have gone through one of the many varied forms of blood cancers.

I don't wish to be mean about it but they regard the stories as inspirational whereas I just find them to be saccharine sweet tales of how some family got through their own particular battle with their disease. They are usually double page spreads that simply don't allow for any in depth analysis of what happened to them and how they came through it, which I feel would be genuinely beneficial to other sufferers. The last thing patients need to be is patronised in my opinion and these pointless couple of hundred words can only really convey the message 'Look, this person didn't die so you might not too' and while that is an important and inspirational message it's quite simply not enough. 

What you also get in the magazine which I do like are updates on treatments that have been developed for individual types of blood cancer. This month it happens to mention my own type, Chronic Myeloid Leukaemia (CML) and the real progress being made in rendering that a disease that can be eradicated from the body. Back when I was first diagnosed there was a drug in trials called ST-571 that later became known as Imatinib (or Glivec) which was showing great results to that end. Over the decade or so in between some problems with taking that have been found and so the drug has been modified accordingly and the latest trial is using Diatinib and the results so far have been startling, showing large numbers of patients going into what is called major molecular remission, where the leukaemia cannot be detected.

Now part of me reads that with glee and another part wishes that it was me that was able to get such a treatment. Now that doesn't last very long as I'm crucially aware that we made all the right choices with the tools we had available at the time but my current condition is a bi-product of the treatment I underwent to cure me. There's no way of knowing what path my life would have taken if I had taken Imatinib rather than taking the Bone Marrow Transplant, especially bearing in mind that some patients who did take it then had to go on the Bone Marrow Registry so they could get a transplant because the Imatinib was no longer working for them. I was astronomically lucky to have a willing donor already and I regarded it as being a real kick in the teeth to those other patients who were waiting on a match if I didn't take my chance to be cured. I know you're meant to make decisions on your own health based only on what affects you but I wouldn't have been able to talk to the other patients again if I hadn't taken the plunge. I wish nothing but the best for the patients who are now receiving Diatinib and hope that it does prove to be the success it's currently looking like, but I'm man enough to admit I'm jealous of them.

These past couple of weeks I've been reading a lot about what my big operation would entail. The best information I have found is in patients' blogs. It's not something I'll talk about here as I know there are some who read this who don't want to read all the gory details but I will provide a link to one such blog of a recent transplantee who kept a tremendous record of what went on during the whole thing.

Tor's Transplant

You need to scroll down a bit past the latest posts about her life post transplant as it's in chronological order from the newest down like mine but the posts entitled Transplant 1 and Transplant 2 are what you're looking for if you're so inclined. It's far from easy reading so if you don't want to know all the grisly details then perhaps you're better not reading it. You will of course get all that stuff when it's me going through it but remember I am a different patient to the Cystic Fibrosis ones so there will be differences in the treatment during and post transplant.

The moment a million chances may all collide

On Wednesday I went down to the Freeman hospital again to be re-assessed by the Cardiothoracic team with the aim being that they could then put me forward for a double lung transplant.

If you remember my last visit they had given me the all clear regarding my kidneys but wanted to check my heart out for any problem that might prevent me from being able to endure the operation should I be lucky enough to be put forward for transplant and a match was found. That wasn't all plain sailing due to a temporary anomaly but eventually the Cardiac docs ruled that my heart was in perfectly good shape for whatever they could throw at me.

So, with that final hoop having been jumped through I went down to Newcastle on Wednesday morning fairly sure that I would be put on the active list, but as I got closer to the hospital I remembered that I had felt the same way the previous times I had gone down too so was a little more guarded when I got there.

When I did arrive my room wasn't ready yet so we took the opportunity to get all the tests that they do when down for assessment out of the way while we were waiting for the room to be cleared. The breathing tests were as much fun as they usually are with some poor technician screaming at you to just push that last little bit out of your lungs while you're feeling like you're about to flake out. In that time I also did the endurance test where I walk up and down a corridor for as far as I can in the 6 allotted minutes. I got further than I ever have before on that test which came as much as a surprise to me as it did the physio's and doctors.

A plentiful supply of blood was taken, firstly from my veins to be sent away for all sorts of screening regarding tissue typing and for antibodies present so that should it come to pass they can get the best match possible for me, and secondly from my arteries to check the make up of blood gases present. That hurts a bit but I'm getting used to it now that it's been done so many times. I can now even point the doctor doing it to the right spot where my artery is on my wrist which saves them rooting about, which is where most of the pain stems from.

Having been down a few times before I knew that I would hear from the team the following afternoon so I spent the evening with friends that live in Newcastle coming to visit and then getting a decent sleep. I was more relaxed than I have ever been in a hospital as I was so sure by that point that my fears were unfounded and that the next day would provide the good news I had waited all this time for.

By the time the team actually came round I was actually having a peaceful nap and they had to wake me. I didn't mind in the slightest as I could quickly do the maths and see that there were far more staff in the room than in the two previous trips when they told me they had to do more investigations. This instantly said to me that it was positive news as you can spot surgeons a mile off and they would only be there if there was stuff for them to explain so I was buzzing instantly. My consultant told me he wasn't letting them leave the meeting they had just had without universal agreement that I would be put forward as a candidate for transplant. I'd waited just over 3 years to hear that news and it didn't disappoint. After his blurb about the protocol, which I will endeavour to go over with you some other time, I had a bit of time with the surgeon who went over the practicalities of the surgery and then the anaesthetist who went over her role in proceedings both during and post transplant regarding pain relief. She wasn't shy at telling me how much pain I'll be in but reassured me with the options available and which are best when looking at how the surgery has gone.

After that it was a matter of some paperwork regarding who I would find it acceptable to receive donor lungs from. After deciding that while it seems beggars can in fact be choosers I wouldn't be passing up any set of viable lungs because no matter what they would still be a massive improvement on the current set. This paperwork also included the choice to opt in to a clinical study into what they call ex-vivo lung profusion where they take harvested lungs and place them in a modified heart-lung bypass machine and oxygenate then as well as giving them a solution that can help them identify much more clearly which lungs are indeed viable and in doing so making more lungs available for transplant. I've asked a few friends to do a bit of reading on that as it's entirely optional and while my instinct is to go for it as it will increase my chances of getting new lungs I want some less biased eyes to look for reasons not to do it and if nobody finds any or if I don't agree that what they say is a flaw then I'll be happy to accept lungs from that study.

The next few weeks is going to be filled with bureaucracy and I'll be glad when it's all out the way and I can  enjoy officially taking my place on the active list. The hard work has been done on my part getting this far, now I just need to keep myself well enough to actually stay on the list long enough to get fixed and get my life back.

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.