As many of you will know I’ve been suffering with breathing difficulties since May. That was when I experienced a near fatal anaphylaxis. Since then I have never quite recovered and have now been housebound since the end of June.
A number of different diagnoses have been suggested but none of my doctors have really seemed convinced of any of them. It seems to have been more a case of ruling things out and if we still can’t find a reason we’ll call it X.
So this week I was finally down to a low enough dose of steroids, and doing well enough (relatively) to undergo spirometry testing. This is a fairly simple test that measures how well your lungs are working. In my case, once again I got some odd – that is atypical results.
The good news is that I was actually able to complete the tests on this occasion. Last time I was so out of breath that I couldn’t even manage the testing. So there is some improvement, which is really good as we’ve also been reducing my medications very slowly after the last month.
So I saw my Respirologist today to follow-up from these tests. He’s not as convinced as the Allergist was that I’m suffering with RADS (Reactive Airways Dysfunction Syndrome) though he’s not ruling it out either.
So he’s increased one medication, added another and is having me do a sleep study.
That made me laugh – I’m pretty sure that you’re meant to sleep during a sleep study.
Hmm not sure I can remember the last time I slept for than a couple of hours at night.
I’m also staying on steroids – the low dose I’ve just reached – for the time being.
Then he suggested that it might be time for a referral for a second opinion to a tertiary care centre. In this case that means Hamilton (an 8 hour drive away). I’ll deal with that part of it when, and if, I have to.
What’s being suggested is that I might benefit from bronchial thermoplasty. To quote the Mayo Clinic: bronchial thermoplasty heats the insides of the airways in the lungs with an electrode, reducing the smooth muscle inside the airways. This limits the ability of the airways to tighten, making breathing easier and possibly reducing asthma attacks.
Doesn’t that sound cool and really clever? So of course I looked into it further. It’s done over three outpatient appointments, under sedation, each appointment three weeks apart as you need a separate treatment for each of the right and left lower lobe and one for both upper lobes of the lungs.
It’s fascinating. I actually watched a video of the lungs being treated this way. It’s really interesting. What an incredible idea!
Then I really started to think about it.
They basically want to put a catheter down my throat (0r nose) and heat (sear) my lungs so that they can’t constrict as much any more. In the hopes that my lungs will become less reactive and the asthma component of my condition will be alleviated.
The benefits can last from 1-5 years, and it may need repeating as a consequence, and initially breathing is likely to be worse for a short period.
No surprises there – sedating anybody and putting a catheter into their lungs is likely to cause breathing issues for a little while!
You know what? I know just how sick I am and how frustrated I am with not breathing easily that this actually sounds reasonable.
Even trying to work out how to do what would likely be 4 road-trips to Hamilton over 3 months sounds plausible. I suspect that each trip might take me a few days as I can’t see me being able to do an 8 hour drive in one day just now. But I’ll deal with that when I need to.
For right now I’ll try the new medication regime and do the sleep study. Maybe there’ll be an answer there and I won’t need to do this.
In the meantime I’m going to stay away from looking up more information as it soon moves from being really interesting and fascinating, to being really quite scary, when I put myself in the patient’s position.
A fact that I hope my doctors remember! I’m a little tired of being the ‘interesting’ case and would really like to get to the point of being the case study that they write about and present at conferences.
The interesting patient that got well!