Levels of Damage

I didn’t get a chance to update this yesterday, time seems to fly lately.
I had my first appointment with my surgeon since being discharged 10days ago. He basically made sure that there had been no emergencies and that I was still coping with all the nebs and had managed to get them from the doctors.

I asked him what the level of damage was to my Trachea. A question I have never thought to ask before, perhaps I was scared of the answer. I have approximately a 40% occlusion that spans approximately half of my trachea. Your trachea is approximately 10cms, so I have 5cm of damage. My surgeon stands by the fact that the length of damage is to much for resectional surgery to correct it. However, when researching the subject the other day, I’m almost positive I read about someone who had it done with 7cm of damage. So perhaps this is a more positive note to look into.

He still keeps suggesting that I have a T-Tube put in. this would be like a tracheotomy but can be closed during the day and just opened when you need to suction. I am still insisting that I don’t want any type of Trachy. He said he understands that, but it might come to a point where I don’t have any other option. If the stent is causing lots of problems and they take it out, chances are my trachea will not hold itself open.
I am going to do more research. Im sure there must be other options. I don’t want a trachy, I would rather die than have one that is how opposed I am. There is a surgeon I have been told about in Boston who specialises in this type of surgery, but obviously not living in America, this option might run expensive.

While I was speaking to the surgeon, I asked him about my hand tremor. Since I was discharged, my hands have been shaking all the time, but especially of a morning. He asked me if I was scared or if I had been having nightmares. I said I hadn’t, but in truth my PTSD has been playing up and I have been having lots of ‘images’ recently. I never thought about the shaking having been a result of a psych complaint. I have a GP appointment on Thursday so I might ask her opinion as well.

So much work I should be doing. Work for Uni, researching surgeons, sorting the spare room out. Yet no energy for any of it. I didn’t bother doing my nebs yesterday morning before going to clinic and when I got back I was tired so spent the afternoon napping. As a result, by 9pm I could hardly breathe. It felt like someone was pushing against my throat. Eventually I went to bed after running a couple of nebs through and it seems better this morning though I did have a major cough when I woke up.

Speaking of sleep, perhaps I shouldn’t have napped yesterday. As much as I love day sleep, I struggled to sleep last night finally drifting off about 6am. So I think I will have to be strict with myself tonight and have an early night to make up for it.