physical update

hmm
I have spent all evening wondering if I should write this and how to attack it if I do write it.
But I began this blog, in hopes that if someone was going through something similar they would know they are not alone. Mainly I wanted to share my experience with all aspects of it, so I am going to detail it.
However, I want to make it clear to myself and everyone, that this, this isnt a rant or a moan or anything like that. Its just how it is right now.

In my usual hospital, I have gained a bit of a reputation. All of the staff there know me and they all know that if I start to get ill, something needs to be done pretty quick. I am known for going down fast.
Every time I have gotten sick, I have gone from well to needing hospital in 2 days if not 2 hours.
This time is different. Yes I have been feeling tired, but nothing that has overly worried me.

Over the last few days, I think I have started getting more breathless.
Its not much, its not something that would be noticed on a day to day basis.
But when I got back from London, 2 weeks ago give or take, I could walk fairly fast up the stairs. Yes I would be panting when I got to the top, but I would be able to carry on with what I was doing or picking up whatever I had gone up for.
Tonight, I have just walked, fairly slowly up the stairs as I was behind mum, but when I got up stairs, I had to stop and sit down for a few minutes till my breathing settled.

I noticed this a few days ago, but I put it down to being a bad day.
I still am hoping it is/was a bad day.
But in my mind, I'm spotting other things.
The problem is, are these new things real? is my breathing getting worse?
Or am I panicking? Is it stress? Is it psychosomatic?
These are answers that I dont know.

Usually, when walking, if I start to feel excessively breathless, it usually means my inner tube as clogged. I am able to take it out and change it and clean the old one. This has pretty much become an automatic movement, kinda like getting a tissue out to blow your nose. Today, a couple of times, I found myself in the midst of changing the tube, however, when looking at the tube I was taking out, it was pretty much clear, not how I would expect it to look if it were clogged.

When I got home, I thought I would pass a suction tube just to make sure there was nothing blocking the end of the tube just incase. If I am honest, I have been avoiding using my suction. I dont like it, but I dont want to get used to having it, I would rather work on strengthening my cough.

The tube passed with only a small amount of resistance, which is odd as there isnt normal any resistance. But it felt kinda different. It felt tighter, more restricted. However, im not guaranteeing this as a symptom as it has been a while since I passed a tube, so it might just be me working myself into a worry.

I'm not overly concerned yet. As I said it could be all kinds of things. My chest could be too dry, it could be the beginning of a chest infection, it could by psychosomatic, it could be that I am over tired, it could be a whole host of things.

The thought is still in the back of my mind though.
Mum said, that while in London, the surgeon said that my lower airway was also narrowing, as in below my trach tube. I didnt know this was possible and I'm still not sure.
I didnt hear him say it, but then that could be a result of crappy hearing and/or post anesthetic brain.

I have not mentioned this to anybody yet. This isnt something I am overly worried about, sure its on my mind, but there is a lot more ahead of it in my mind.

I trust my team and I know that, should it be something like lower arway narrowing, that they will look after me and sort it. In like 9 days time I have an appointment with my surgeon up here where x rays will be run, the week after that I have an ENT appointment with my other surgeon, then I have London. And worst case, it is bad when I get to london, I will be going to theatre that day anyway so they can get a proper look and sort it. In between that, I can (well mum can) phone my ward or the GP will fit me. And of course there is the option regular people have of A&E., though I am told , where possible to avoid A&E. A&E tend to like to want to fiddle and save the day. They like to do procedures in ressus in the name of stabilizing you or assessing you. Heres where memories of being put on CPAP come flooding back so that the doctors can lie me flat enough to attempt for the 12th time to insert an arterial line. Plus A&E, is riddled with infections, which would be bad right now.

So the plan is, to continue to ignore this. I am pretty sure it is going to amount to nothing and I have back up plans. And I am feeling ok in my head space. I can deal with this. This isnt scary, this isnt forever and things ARE going to improve.