I had my own, personal D-day this Wednesday gone. It’s really strange, I am actually having trouble thinking about what to write about it.

It was basically a straight forward appointment. I was rather annoyed to find that my consultant was not running the clinic that day – considering it was him I had wanted to speak to and had taken time off work to do so. I was curious to find out what the tracheal site looked like. Wanted to ask a dozen and a half questions about the dilation and the coming reconstruction. And wanted to untagle my coiled up mind to a degree.

After I left I was pretty relieved that I got to speak to the registrar who put me at ease and spent a good part of half an hour with me. Not once did she make me feel as though my questions were silly or annoying. Or that she wanted to be rid of me as quickly as humanly possible. She actually encouraged me to ask whatever questions I felt like asking, however trivial I thought they may be.

I was shown the pictures of the stenosis before and after dilation. It was rather shocking to be told, or shown rather, how wide a healthy trachea should in theory be. And how narrow mine actually was prior to the op. That photographic evidence brought out the medical person in me though and I have to admit, I did end up pestering the poor doctor, who called me in first, with my pretty detailed interest in it all. But it was just ever so fascinating. I had never seen such a numerous display of before-after pictures of my condition before.

My main concern was to find out exact details of the procedure, including risks involved and success rate of past operations. It was reassuring to hear that in most cases this major operation seems to have been ‘the cure’. I guess I (like all ISS sufferers) will be life long patients. I think it is vital to keep an eye on this, even if things appear to be ‘sorted’. But the main benefit is regaining a decent quality of life rather than having constant procedures and most of all fearing the dreaded permanent trach. The biggest ‘risk’ (other than the well known that go along with any general anaesthesia) is that this surgery will prove to fail. However this seems to have been the case only a few times and those patients have had other systemic diseases present at the time. Thankfully I do not.

Another concern is my voice. It was interesting to see that the cuneiform and corniculate cartilage on my right sight is slightly prolapsed. I have a right sided vocal cord paralysis and the prolapsed cartilage may be contributing to my ability to communicate. Naturally I wanted to know any vocal damage could be dealt with once the situation has proven to be stable. Apparently there are possibilities. But that is a long way off yet.

The one thing I am more than relieved about is the fact that I will not be aware of the trach being placed. I made the mistake of reading up about the whole procedure, risk factors and outcomes. When I was pregnant I refused point blank to even go near any literature simply because I didn’t want it to drive me crazy. Well, I didn’t seem to have been good in following through with that in this case. I had visions of being conscious, if yet sedated when they preform the procedure. Also because I remember the surgeons telling me when I had my last one done that it couldn’t be preformed under a full GA. I cannot for the life of me remember what they gave as a reason, but those few words etched themselves permanently into my memory. I was reassured that as it is a planned and controlled procedure I would not be aware of nor awake during it. The two weeks post op are going to be hell enough, thank you.

I was told I could be operated on within the next 6-8 weeks. But I have decided to postpone that into late September. I had a long term hospital stay and recovery during the summer months previously (not that we get much of it in the UK but hey….) and it wasn’t fun. Not that it would be, having it done during the cooler months. But less bothersome.

Tomorrow I will meet a patient who has had this procedure done last year. We have had brief contact over the last few weeks and she said that she has been feeling so well since having it done. That she could lead a life exclusive of coughing, fatigue, breathlessness and worries.

And I am now waiting. Waiting for the date. Waiting for the admission, the procedure but most of all, waiting for normality. 

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