The prospectoscope

If December was a great time to look back on what had been an 'interesting' year then January should allow me time to wistfully muse on what the year ahead has in store for me.

One thing utterly dominates obviously - whether I receive the call for the lung transplant. The average waiting time for this is between 12 and 18 months and I've already been waiting 6 so if the law of averages does its thing then it should in fact be this year that I get the call. This was the opinion of most of my friends I met throughout the holidays too and while that is borne out of hope rather than rational analysis the idea appeals to me. I don't want to go through another full year of waiting. I'm 35 now after all and I'd like to get back to something approaching a more normal life. I know that my life will never be 'normal' but something approaching it would be nice.

I got a little bit of an infection over Christmas but it seems that I can recover from such things much easier than any point in recent memory, which is great. If I could go through the whole year with only these mild infections I would be a very happy man indeed.

One new thing that has come up is that I responded to an appeal from the press office of the transplant authorities to send them your story of transplants. Having had one and being in a holding pattern for another I felt my story might be worth telling, so I sent a brief synopsis (not easy for me) to the press officer who has got back to me and said that they would love to use my story in some way, whether that be in the media raising awareness of transplant donor lists and all that encompasses, or working in unison with the Scottish Parliament to do the same. I'd be thrilled to get to do this although logistically I'd need help with the oxygen for whatever they may require me for. 

I've always been keen on sharing my experience, as this blog alone shows, but it's not the only way I use my experience to aid others. I've given lectures to medical staff before about what it's actually like to be in the patient's bed throughout the whole process of diagnosis to treatment to post treatment care with very enthusiastic responses. I also get used any time I'm a patient in the wards for some reason. Registrars are always keen to use me to help train the medical students as I am very relaxed with them and usually put them at ease. I can even prompt them in the right direction should the situation arise that they need a helping hand. Once, in Liverpool after the registrar in charge had half a dozen students go through their paces with me, one of them broke off after the session to have a much more informal chat about my history and what I was going through at the time as they had never seen anything like that before and it was refreshing to have someone so comfortable talking about what they had gone through in terms of medical procedures as much as what they went through emotionally. It turns out that as soon as something is over a lot of patients choose to forget as much as they can about the grim things they've endured. I'm not like that apparently. It seems I'm too interested in the whole process to forget anything really, even with my somewhat fuzzy brain.

I was thinking about my fuzzy brain the other day. Your brain uses 20% of the oxygen your body takes in just to keep going. Whilst I only have 16% of my lungs functioning fully I still manage to get over 90% oxygen into my bloodstream, but even then I feel that I'm not working at full capacity. Not even close. I've said before that my body is working in an oxygen debt situation not that much different from altitude sickness. In that situation the first thing that shuts down (to preserve oxygen for your brain) is your stomach which is why mountaineers are sick above a certain altitude with low oxygen. After that they start to feel disorientated and that I feel is what I suffer from. Of course I've been that way for three and a half years now and my body is so used to the oxygen debt that I'm no longer sick all the time but I can't get away from the fact that I feel confused some of the time and will often lose my stream of consciousness midway through a sentence. For someone who holds great stock in his ability to try and get a point across it's a truly awful affliction. There's nothing I can do about it till I get new breathing gear though so I try to not get too tetchy about it.

There was a program on BBC1 Scotland last night about what are referred to as orphan drugs, which are highly specialised drugs for very specific cases that have different guidelines for use (and therefore cost) than normal, everyday medications. One of those mentioned was Imatinib (or Gleevec) which is the drug of choice to treat CML, the form of Leukaemia I had. It essentially renders CML a condition that you just live your life with, constantly treating it as you go (like type I diabetes for instance). This is a real point of contention for me as I think drug companies should be searching for cures rather than making customers for life with their incredibly expensive products. It brought to mind a conversation I had with two of my sisters (both nurses) the night before about how much has been spent on keeping me alive so far. In all honesty if the transplant team in Newcastle had told me "Sorry, you've had enough spent on trying to keep you alive already" I honestly couldn't have argued against them. Thankfully for my sake that's not how they do it but I know that I've already been incredibly lucky to have had the treatments I've already gone through as they are mind bogglingly expensive. I'll never be able to pay it back in tax and national insurance in my lifetime but that's the greatest thing about this country, we have a cradle to grave health service that helps those the most in need. It's not perfect; far from it, but from this patient's point of view it is absolutely peerless.

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.