Today, I have existed in a bubble. My mind feels likes it has melted to mush. Maybe I am over tired, or perhaps its some form of protection. Either way, I hope it goes soon, I hate feeling this spaced out.
So, surgery and consultants. I saw my main surgeon just before I went under, told him about how hard I was finding it to get air into my lower lungs. I also asked if I could see him the next day in clinic, to which he agreed.
Fast forward to Wednesday morning. A few other people had requested to also go to clinic, so I was not alone down there, but I was determined to stick to my point and get some answers to where I am at.
We started by reviewing what had gone on the day before in theatre. He confirmed that, even though it had only been two weeks, there was a large amount of granulation already at the same location. I was down to about 5mm (20% of what I should have) and so Grade 3 blockage. It confirmed to him, that I was right in what I said, when I say, I dont get any relief between lasers, as even at the best expected point, my airway is still not adequate.
We went on to discusse what we can do from here. and the answer is not one that pleases. Transplant is out of the question. Unless things get to a matter of life and death, transplant, can not be considered. that leaves two options. Carry on as we are, every month to surgery, every month getting that bit worse and generally feeling like crap. the other option is to go back to a permant trach. Given the pain and issues I have had with the last stents, they are not a viable option.
I said, I dont want to lose my voice, which I fear I will with a trach. He thinks, that if he alters the tube, and puts it in at such an angle, that he can keep my voice. He wants to try some differnt tubes, possibly some Silver tubes, but these will be alkward to connect to my current equipment.
I think, the way things are working, we are going to have a go at a trach, but there will be some points put into place first. Its possible that the trach will cause further damage to my airway, the possbility of losing my voice is still there.
As I say, my head isnt making much sense and so this post is hard to write. But, I think it is going to be along the lines of this; In one months time, I go in and have a peramant trach fitted once again. In 6 months, it will reviewed. If my quality of life has gone even further down, or my voice is still missing, then the trach is to come back out. We will then see the condition of my trachea at that point. And the condition of my lungs, not to mention my record for infections.
It is all that can be done at this point. Its about quality of life, its about making the most of what I can. Until a time when such changes either come about by law, or I have had enough.
I cant go on with what I have. Things get tougher every time I go in.
some of my favourite nurses where on the ward when I got back. They asked how I had gotten on. These nurses have been caring for me for 2 years, through big ops and little ops. It was sad to tell them, im going back to the trach. I held my head up high, told them the truth, watched there faces change, that look first off that says, nah cant be true, until the penny drops and the look changes to sympathy.
And with that, I leave the ward, until I go back next month and we begin this new road.