Nearly two months have passed since my LTR and amazingly it feels like ages ago now. Well, looking at how life has gotten hold of me again at full speed it’s no wonder. When I first had the stent removed, as well as after being discharged my breathing felt excellent. Sure, there was still healing going on, still is actually, so one can’t expect instant miracles. I started running after about 2 weeks (doctors approved it), and swimming once the stoma was sealed over.
To begin with, all felt great. However I did notice that fairly quickly, too quick for my liking, my breathing didn’t feel as ‘smooth‘ as it had done upon release. Now, given the fact that the operation wasn’t that long ago, you could say I was only being paranoid. I had actually been questioning my own perception with it all. Looking at my voice, I know what it feels like when the vocal cords meet. And I have not been able to feel that yet.
I kind of felt like a mini hypochondriac sitting there, almost fevereshly looking for signs of restenosis occuring. Because, this was exactly what it felt like all those times before. Like slowly being strangled from the inside. For those of you reading this, who would like to try an experiment, I was told of an interesting thing: Wanna know what it feels like with tracheal stenosis? Well, get a clothes peg and stick it on your nose so you can only breath through your mouth. Find a straw and a flight of stairs. Now run up and down, not a leisurly strole but a decently fast pace, breathing only through said straw. And welcome to the world of ISS. Only you are the lucky ones. You can get rid of the straw and breath normally again.
Understandable that after such an invasive procedure, the last thing you want is that feeling again. Particularly as most of us have had to deal with this for a number of years with endless operations, be it minor or major. So I guess also understandable that you listen to your body, your breath and any possible signs of breathing being obstructed again.
Some of you know how worried I had been coming up to October 29. That was when my consultant wanted to have his first proper look at my newly reconstructed thracheal interior under general anaesthetic. The last thing I wanted to hear was ‘We are very sorry to have to tell you, but……..‘ I had to show up at hospital at stupid o’clock and of course most of these wee hours of the day are spent speaking to the registrar and anaesthatists to get consent regarding the operation (I find it quite amusing, my talks always run along following lines: ‘So you have had this countless times, do you have any questions?’ – ‘No’. Ok, would you sign here please?‘)
The registrar, my ‘special friend from the ward‘ (yes, that was meant ironically) called me in and one of the first things he said to me was I sounded breathy. That was encouraging and discouraging at the same time. Encouraging, because it seems they are very observant, but discouraging, because it meant that apparently my built up worry was not just a figment of my imagination. But until they were able to have a decent look I was none the wiser as were they. So it was time to wait. And wait. And wait and wait and wait.
Now this is a paradox: I have never had so much fun waiting for an operation before. Grouped together with two other subglottic stenosis women and one subglottic stenosis man we took it in turns playing guessing games as to when we would be called to theatre, put on puppet shows with our sexy socks and discussed what each of us would be having as a meal had we been allowed to eat (nil by mouth is so not fun). Eventually we were all called one by one and, with this pre-set good mood I carried on having a laugh with the anaesthetist whilst waiting to be put under – before the happy drugs of course.
Coming round I was told I had to rest my voice – totally. Which meant I should not be talking at all. That came as a bit of a shock and all I could think about was ‘Damn, how am I going to go to work, if I am not allowed to speak???‘ Not that I was able to do much of that before this procedure, but still, not being allowed to speak at all would mean losing out on a few days salary. Luckily, once I was actually able to speak to one of the registrars, one of the best in the team I have to add, all my worries concerning my trachea – and voice rest – were blown away.
The reason my voice had not even remotely begun to recover was because there was a small nodule of scar tissue right between the cords preventing them from closing together to create sound. This, along with the scarring and crusting on the posterior wall of my trachea could be removed very easily and without laser or any ‘invasive‘ intervention. The following words were music to my ear: ‘I was actually very happy with what I saw when I looked down. Especially that we have a direct reason for your voice troubles.‘ So, now that this nodule was removed, my voice should gradually start coming back. Also, I was given the all clear to work thank goodness. I was told to try and limit my talking to the bare minimum as much as I can, which at work is doable, however, with a 5 year old child… Not always practicable.
All in all I can say yesterday was much more of a success than my very first follow up. My mind was put at ease a great deal. It may be that some more scarring will have to be removed, but to hear that things are looking great and are developing as planned and most importantly hoped was balm to my soul. And I have to say, again I can feel a difference to my breathing. Which leads to my personal conclusion. I wasn’t being paranoid. I know my body and these symptoms so well that I can determine when things are not as they should be. I can trust my gut instincts in this. Hopefully I won’t have to in the future anymore. But for now, I am glad I can say, I wasn’t imagining it.