So I have been a little out of it of sorts since I got back from London. Think I was over tired and it kind of amazed me how long it took me to recover. I mean I am what, 24 and 1 day trip, where I was only really walking around from about 4pm till 9pm, so 5 hours and it took me 2 full days just to recover enough to wash my hair. When I think that it was only last July that I was down in London and going for about 5+ hours day for 3 and 4 consecutive days. I thought i was recovered yesterday, with being in a good mood, but today I can barley keep my eyes open. Went the shop with mum earlier and fell asleep in the car just driving to the shop.
Anyway, onto other things. So whilst I was recovering I didnt want to sleep permanently (though I pretty much did) so I began making the video that I said I had the urge to make. I have done the bulk of it, just needs about another hour spent polishing it up, playing with sound levels and fixing a couple of transitions.
Tell me what you think so far please. I know it will never do Eva justice, but as I said in an earlier post, this is more for me, to remember her by so Im not even sure if it is going to go anymore public than this blog. Plus there is the whole copyright thing to think of.
My next challenge if I decide to go public with it, is to get around the filters on youtube as it keeps muting the audio. It wouldnt be such a bad thing, but it mutes all the audio, not just the music, so I lose all the voiceovers too. I either need to find different music (but im kinda attached to the stuff I have, especially the last bit) or find a way around the detector.
So seeing as I am working backwards in time pretty much, im going to put down what happened at the hospital in London. I will eventually post a second post of what I did in London, but I am still in the middle of fixing the pics I took. (No tripod and it was wet and miserable so there are not many good ones)
So we get to the hospital, and it dosnt look like a hospital, it looks more like an old fashioned shop (again look out for pics.) I saw the consultant he is supposedly the best surgeon who deals with tracheas in the UK. He had not read through the letter so he glanced down it while we were sitting in the room. Then he asked to see all my medications. He laughed when I pulled out a big bag and was a little shocked at the amount of them.
Once that was done with, came the icky part that I knew would happen but was hoping it wouldnt. He decides to put a scope down while I'm sat there. So first off he sprays my nose with the icky tasting stuff that numbs it and up goes the camera. Now I have had this done a fair few times in the past and it always feels like I am chocking on it, however it was gentler this time as he couldnt go very far down due to my trach (bonus!) I was a little disappointed still though. In my usual hospital when they put the camera down, the images are displayed on a big screen behind me, so I usually ask to be turned around before they start meaning that I get to see the screen myself. (Yes I am a fan of gore) This one however was only a little one with an eye piece.
Anyway. he basically said that my upper air way is very red and very inflamed and it shouldn't be. He therefore thinks that something must be causing the inflammation. He agreed that I should have as much gunk on my chest as I do and that it shouldnt be as thick as it is. So he thinks that something is irritating my throat, creating the inflammation and the gunk. He asked if I had had a swallow assessment (which I hadnt) as it could be something like food or drink going down the wrong way causing it.
He has asked my surgeon here to organize a video fluoroscope, which is where you have to eat and drink different things while being observed and x-rayed. He also wants to get me in for another Bronscopy with an over night stay so he can get a better look. And if the professor person I emailed is free he wants him to sit in on it.
Ultimately, further action will depend upon the outcome of those 2 tests. He did talk a little about tracheal transplant as he knew that was what I had spoken to the other surgeon about. He said if nothing else works, then the transplant will definitely work to fix it (YAY!) However, it is not yet a licensed procedure in the UK. Which means that it could be years before the can legally perform the surgery on me, but im still hopeful. He also said that the success rate is much better if I lost some weight. So thats something I am going to have to work on.
He also looked at my neck, where it has been red and sore. He said it looked like Pseudomonas which is a bacteria that is fairly resistant to treatment. He said if it was this, then the chances of treating it would be extremely rare as it is hard to get rid of given its position. The next morning the nurse swabbed it and sent it off for cultures anyway just to be sure. I do have some bactroban there, but I am reluctant to use it. The bactro ban is a cream that can help clear things like MRSA up, however if you use it to much it wont work any more, so I am only going to use it when it gets to the point of being to sore to manage with normal painkillers.
And I think thats everything. so its all a waiting game at this point. It will probably be June when I next go down to London as the surgeon is away for April and I am away during May.