Tuesday, June 03, 2014

Rock and a hard place, but its not to bad.

Ive been meaning to write for a few days/weeks now. But the words have been lost to me. In here, I often talk about how I feel, but right now, I dont know what I feel. I guess, my current outlook is nothing has changed in the grand scheme, but I guess I should stop being so damn cryptic. This maybe a long one, but hopefully not to depressing.

So the last couple of months have been a bit of being here there and everywhere. My chest started to complain a while back, cue a week of oral antibiotics, which was extended to two weeks. Things didnt clear and began to get worse, so next came a course of 2 weeks of IV antibiotics. Things still didnt feel right, but I was due to go away. I had an amazing 10 days in Turkey, but struggled to keep my chest moving. Coming back, I had a emergency, where I almost blocked up. That scared even me, without my experince, I dont know if I would have survived it to be honest and at least not without major intervention.

This led to another admission for IV antibiotics, this time 3 weeks, yet I still didnt feel better. Culture results came in and I have 3 types of bugs growing in my lungs, which are all resistant to a lot of medication. Fun times huh. I had another course of oral antibiotics, to get me through my holiday (My parents took me to Greece for a wonderful week (more about that shortly)). but I still feel crap. We have decided however to wait and see how things go, before attempting to clear this set of bugs.

In between that, I have been to clinic down in London. That wasnt particularly inspiring either. After a discussion with my surgeons, we agreed that I am pretty much out of options. He said that he has seen a fair amount of patients get to where I am now (though not as quick) with repeated infections, that become resistant to medication. In the end, the infections kill them. One of the major downsides of having a trachestomy, as you bypass the normal preventative methods the body has for avoiding infections, to add to that, I have a lowered immune system to prevent my body rejecting my transplanted liver.

We spoke about the potential to put in place a T shaped stent, but we mutually agreed that it would not work for me due to my chest issues. So I am stuck at this place, where I keep getting more infections and treatment gets less useful. And there isnt an option there.

He wants me to go for transplant, when the opportunity arises, but I dont think that I want to go for it. It is hugely risky, with a poor outcome. Even afterwards, there is no guarantee that breathing will be any better for it. Previous cases are experiencing a lot of problems.

In short, it comes down to either, staying as I am and knowing the infections will kill me, or go for transplant with no idea on what the outcome is likely to be. Its almost like choosing which way you want to die.

And yet nothing has changed. I found a way to be able to use inhalers so that I dont need to be tied to my neb during the day, which is a good thing. My chest team are being excellent, trying for funding for meds that they hope will help.

As I say, for the time being, nothing changes.

And I still feel ok overall.
Just back from greece, where I was spoilt rotten and put on about a ton of weight. It was hard work staying well and harder still being discplined enough to stay in the room running treatments, when I just wanted to sleep in the sun.

The holiday was chil out time, time to relax and do not very much and belive me I feel better for it. (photos to follow)

And Saturday morning, the parentals are taking themeselves, me and my niece to devon for a week. Again change of scenery. but should be some good bonding time.

So right now, I am working hard on clearing my room. I never seem to be on top of it as I am never home. Its starting to look good now and I cant wait to be able to move around it properly.

It truly is the little things. I appreciate them a lot at the moment. The holidays, the time with family, relaxing. So whilst I know that the future doesnt look as bright as it once did, I know that the current time and the past are exactly how the should be, enjoyed, remembered and never discount the small things.

(I actully feel asleep whilst writting this, before posting it. Posting it now, but I am back from Devon, update to follow shortlyish.)

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