Sunday, 27 October 2013

Update Número Deux: One Lung or Two?

If you've been reading this blog since its inception, it probably won't have escaped your notice that my lungs are a bit, well, broken.

As in: humongous-black-voids-of-nothingness-where-there-should-be-alveoli-and-stuff* broken. As in: a-total -lung-capacity-of-less-than-35%-and-that's-on-a-good-day broken.

Yep, like I say, broken.

Since my untimely entrance into the world it has long been debated how best to tackle my condition.

The thing is, you see, I was a rare case. They simply did not know what to do with me. As for a prognosis? It wasn't so much bleak as non-existent. There was no literature, no bench mark, no precedent. I was the precedent.

Aside from prolonged incubation, cocktails of drugs and, later on, oxygen therapy, all they really had to offer me were non-committal shrugs and a distinct lack of answers. In the meantime, however, we must 'wait'.

And if I wasn't waiting for answers, I was waiting for appointments; waiting for tests; waiting for results; waiting to see this Consultant, or that Specialist.

My entire life has been one big waiting game.

It was mooted, when I was around three or four, that perhaps I should undergo a lung transplant? Almost as soon as the suggestion was raised, it was brushed aside. Too risky, too invasive. Perhaps as a very last resort. Maybe.

And that was that. It was never discussed again.

Until May this year.

I'd been referred by my GP to our local respiratory team, just as a precautionary measure, for an elevated heart rate coupled with extreme shortness of breath. Which is to say, more short than usual.

I didn't really think anything of it as I waited (more waiting...) patiently for the consultant to call me in.

It was a gentleman I'd never met with before and my first thought upon seeing him was 'but, he looks exactly like Hercule Poirot...' followed swiftly by 'hang on, what's David Suchet doing here...why's he moonlighting as a Consultant Respiratory Physician? Did he secretly retrain or something?'

I think it must have been a good half a minute before I stopped staring.

The poor man.

Once I'd got over the my-new-consultant-is-in-fact-a-fictional-Belgian-Detective shock I obediently followed him into his office.

To be told that, having looked at my scans and (many many) lung function tests, he felt I was in need of a lung transplant. Within the next five years.

This shock was not nearly as much fun. In fact, I cried. A lot.

The poor man.

It was only ever meant to be a last resort. It was not meant to happen in the next five years.

He talked about suitability, pre-transplant assessment, waiting lists...

Somewhere between 'you'll need a transplant' and 'an Echo-cardiogram has already been ordered to rule out Pulmonary Hypertension' I stopped really taking anything in.

Before I knew it, I was being ushered out with the promise that a follow up appointment would be set for a few months' time and the situation would be assessed again.

Three months', two Echo-Cardiograms, one Electrocardiogram, and a whole heap of heartache later, my appointment finally rolled around.

The good news was: he still looked like Poirot (hurrah). Oh, and I didn't have Pulmonary Hypertension (double hurrah).

The not-so-good news: my lungs were still rubbish.

In fact, so rubbish that, if I didn't opt for a transplant, he estimated I'd only have ten (count 'em) years left to live. And that was him being generous.


On the plus side, he felt I was an ideal candidate for something called Lung Volume Reduction Surgery. This suggestion was not wholly new to me. My previous consultant had alluded to it a couple of times over the years but, again, only as a 'down the line' kind of thing.

Clearly, I was now down that line.

And instead of taking a scalpel to me, he discussed a new type of LVRS in which valves would be fed into my airways endoscopically via a Bronchoscope. In fact, it would go a little something like this...

The valves would prevent air from reaching the parts of my lungs that are, essentially, dead, thus causing them to collapse in on themselves and reduce the overall volume. The remaining, healthy(ish), lung tissue would be used much more efficiently with nothing going to waste.

And this, dear readers, is where I am now. With this minimally invasive procedure on my horizon in the next year or so. Of course it can only ever be an interim measure, a stop-gap, before the real deal, but at least I get to keep hold of my lungs - every rubbish bit of them- for a little while longer.

Every cloud!

*Actual medical terminology. Totally.

1 comment:

  1. Posting comments as I'm reading along your blog...
    I never heard about LVRS before, and there is a lot of hope in what you have written.
    Let me know how it goes for you...