So if you're lonely you'll know I'm here waiting for you

In the Great Gatsby F. Scott Fitzgerald noted that 'life is much more successfully looked at from a single window, after all.'

Now while the bold Mr Fitzgerald was obviously being metaphorical I can take that little phrase as literally as just about anyone. I spend almost all my time in the one room with one window to look out at the world. So what I take from this little phrase is that I, in my isolation, have a more focussed viewpoint on my life. I think that's probably true. I have more command of how I feel about things (even through the occasional medicinal fog) than I've ever had in my life.

My situation is one that you wouldn't wish on your worst enemy but I have embraced it as my own and so have a clarity of thought regarding what I can and can't do with my life, for the moment at least.

With the upcoming tests to see if my kidneys can handle another tough regime of immunosuppression I'll have to see if this clarity can continue.

Obviously I'm hoping that the transplant team conclude that they can let me go forward to the active transplant list but I have to consider that the damage done to my kidneys is too great and that there's no point performing a lung transplant only to leave me needing dialysis for the rest of my life. That would be no improvement from now. When thinking about this I think about it from the doctor's point of view and the Hippocratic oath premise that a doctor should first do no harm. The transplant team described that course of action as reckless and I agree with them completely.

So I am preparing myself for what will happen if I can't proceed to transplant. There are two options:

1. Remain on low level immunosuppressants to prevent Graft vs Host Disease attacking my lungs again. This would leave me open to opportunistic infections but I've largely remained free from hospital on that regime for 18 months now (not including the trip to Newcastle). I would have some sort of life similar to that which I'm leading now.
2. Come off all the drugs that suppress my immune system and see if my body is still being attacked by itself in the form of Graft vs Host Disease. If it isn't I'll be safer as I will have a greater resistance to infection but it is a big risk.

With either of these choices I'll have to come to terms more with the life that I have and perhaps find ways to spend more time away from that solitary window. I've no shortage of helpers who will do everything they can to make the most of the situation. That's all I think anyone can ask of their life.

Come play my game I'll test ya

I knew there was something I forgot to share with you. Counter-intuitive as it may seem the transplant team at Newcastle decided to decrease the amount of oxygen I'm on. Now that may sound ridiculous for someone who can barely breathe at all without extra oxygen. It would be straightforward to think that increasing my oxygen flow would improve my oxygen saturation in my blood, and it does.

What comes as quite a shock though is that oxygen can actually poison you.

The level of oxygen being forced into my lungs through my concentrator wasn't allowing what we'll call exhaust gases to get out, leading to a build up of CO2 in my lungs and arteries.

I get checked all the time to see what my oxygen saturations are and on a good day with my oxygen on they can reach the heady heights of 95% which is damn close to normal. Remove the oxygen and within a single minute they'll plummet to about 84% without even moving. Even those of you not terribly good at maths can spot that's not good.

What very rarely get checked are all your blood gases and I'm incredibly thankful for it because it requires arterial blood to be taken. Getting blood out of veins barely even hurts and that's only because of the tiny little pin prick from the needle itself. Getting blood out of arteries is totally different because arteries are positively brimming with nerve endings, thus making plunging a piece of surgical steel through them a rather painful process. I have one reliable artery on my left wrist that I can point doctors directly at so they're not rooting around, which is an unbelievably painful but sometimes difficult to avoid effect of this procedure. Before I found this particular old faithful artery of mine I had a few rather botched attempts at finding the equivalent artery on my right wrist which I'll just say did not go well.

The exertion tests I talked about in my last post I performed under the new lower level of oxygen and I have to admit I surprised myself. Even a few days of the amended therapy might have helped my lung function. I've to get my blood gases taken again in a week or so and hopefully that'll confirm that there's less CO2 hanging around making a nuisance of itself.