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.