So, tomorrow it will have been a week since I went into hospital for my consultant to have a look at my subglottic condition. I am now waiting another nail-biting 10 days for my follow-up appointment to find out what the actual situation is, what he saw and how he plans to proceed.
Is it weird that I am rather nervous about it? I mean after all, I have had these kind of follow-ups countless times. But I guess this one is rather different. I am curious as to what he has to say. One thing I forgot to ask before they put me out (or, gave me the Gin & Tonic with a Vodka chaser as we joked) was if he could take a picture whilst doing the microlaryngoscopy. I would so love to see the state my trachea is/was in. Gosh, people with chronic illnesses are quite strange in that respect.
I was quite affected after the procedure this time around. I could definitely make out the irritation in the stenotic area. And not only that, my vocal cords were more irritated than before. Two days after the operation I could hardly make a sound. Not the most ideal of conditions when you actually need to talk in your job. And there was a lot more coughing than usual. A strange thing, something that was a first, was that I was extremely thirsty. I don’t recall ever having the need to rehydrate like that after any other procedure.
One thing I can definitely confirm is that, during the MLS some laser dilation was carried out. It was a question of whether or not it would be necessary. And I wasn’t sure if it had been done due to the after-effects. But having gone swimming yesterday I could feel a substantial difference. Swimming length after length felt so effortless from a breathing perspective. I am planning on going running tomorrow. I wonder if it will feel the same.
It is a great but at the same time dangerous feeling for me. It weans me in a false sense of judgement. If achieving breathing is so easy, so straight forward, why consider going through everything that would be to come? Surely I can manage like this, going into hospital every so often, have a bit of dilation, a bit of topical drug application done and skip and frolic off for a good few months as if not much had happened.
But that’s precisely it. A few months. That’s generally all I, like most ISS patients have to feel at least half-way normal. With that knowledge comes the longing for longevity. The longing for no more constant hospital trips. The longing for peace of mind, of not wondering or worrying how long the current stretch of effortless breathing will last. Because you start to detest noticing the initial signs of the returning stenosis: The ever so slowly increasing breathlessness. The coughing. The fatigue. I try to ignore it at first. Try telling myself that it is just the stress of daily life that is catching up with me. Until others start noticing and pointing out that this seems worse than a few weeks ago, or that. And you are pushed into a spiral of denial, frustration, upsetness and finally acceptance that, yet again you are faced with the same procedure as every time.
I am asking myself, do I want that for the rest of my hopefully still long life? Quite frankly, no, I don’t. But I am still nervous…