It’s been a couple of weeks since I last posted and I’ve been pretty busy with life and health things so time for an update?!
First of all, Rome was amazing! Really busy, really really hot, really really really tiring but oh my goodness, it was all I imagined and so much more! Crossed a few things off the bucket list 😀
Had the time of my little life, and ate loads of great food!
I ended up taking about 3 weeks off work including the time I was in hospital so I had a bit of time to get over my admission, go to FSY training in Nottingham for the weekend then off to Roma. Life is a bit of a whirlwind lately. Lots going on with family and friends, and I’m glad that I’ve had some good days and great memories in amongst all the crazy parts too. I’ve been back working night shifts, and managed my first long day shift in over a year! It flew by, but I’m not making a habit of them!
Because of my last admission, I missed my second Speech and Language appointment. I was a bit annoyed with myself missing it as we seem to be getting a fair bit done in them. No new speech therapy, but a quick check over my technique, a few questions about when I do the exercises, how many times etc and thats the main point of the appointment over. But my speech therapist has been amazing recently. She used the appointments more as a way to coordinate all my care and plans. I was glad to make it to my third and last appointment. We went over things I had questioned in the first appointment, she had sorted everything and had all the answers and plans that we discussed, and she had more. I answered a few questions which the consultant had asked her so that they can discuss again in another MDT meeting before seeing me and planning what to do next. But we went through the list of things that were being thrown around as possibilities.
1 – same as what always happens at the end of a speech and language course, I need another nasendoscopy and SLT always book me onto the list were my consultant will be present too so we can discuss and move ahead without having to wait for weeks and weeks for a clinic appointment.
2 – they want to see how midazolam effects my vocal cords. Apparently when other people have IV midaz with VCD it usually tightens their vocal cords, making matters a whole lot worse. But for some reason it works for me. I told her it’s usually a whole load of midday before I fall asleep and it makes everything settle, sometimes for good, sometimes just for a little while and it flares back up again pretty soon after. So I may or may not be having midazolam during the nasendoscopy if we can set off my VCD and see what effects it has.
3 – she asked if I wake through the night and/or get VCD attacks during the night. I said yes straight away, when I’m really unwell with my VCD it always flares during the night which can lead people to think it could be my asthma. Up until very recently it has always been thought that VCD does not effect people during their sleep as you’re relaxed and so your vocal cords shouldn’t be strained or effected during this time. Apparently my consultant was really excited when he thought I may have nocturnal symptoms. I wasn’t so excited to find out that there is recent evidence that VCD can flare during sleep because I’ve always been told that the worst that could happen to me during an attack is that I will pass out from lack of oxygen and then because my body is essentially in sleep mode, everything relaxes and the VCD attack should be sorted and you are safe at least until you wake up and it flares again. If they now think it can happen during sleep, is that still the worst that can happen? Can they rely on the fact that if I were to pass out it would all sort itself out? I didn’t think of this during the appointment so I didn’t get to ask, but its on my list for August!
4 – Because I have night time symptoms they may send me for a sleep study. I don’t know what will happen there, I don’t always get symptoms of a night that I can tell, so not sure what the plan would be with this.
5 – I need a repeat 24hr pH test and the other thing I went to Salford for a couple of years ago. Preston will be doing the tests themselves so they want to repeat mine and see for themselves what goes on.
6 – I could be a guinea pig to trial CPAP for VCD. I would have it at night and then also for during an attack. Follow my usual steps of increasing exercises, heliox plus exercises, and then add in CPAP before my usual last step of hospital for midazolam. Apparently the idea is the pressure from the CPAP would force open my vocal cords when they’re closing over, or at least force in some air. I don’t know though, thats not how we have ever used it in work, but I’d be their guinea pig so if it doesn’t work then at least we tried.
So yeah, lots of things for them to be thinking about and I could end up doing all of the above or only a couple. We will see. But if we don’t trial all of them, I’ll always think that the one we missed could be the one to fix it all. I’m a try anything type of person, if it could help, and improve my quality of life then I am all for it, no harm in trying!
Anyway, I’m not long home from camping in Wales and my bed is calling my name!