Sunday, October 27, 2013

A Change of Place

Table Rock as seen from Wiseman's View
One of the great things about having a place in the mountains is that Todd and I can sneak away from town for the weekend at the last minute. That was exactly what was in order for this weekend.

It was a hard week. In addition to the physical and mental strains of being in the hospital and experiencing various side-effects from my antibiotic, I also had a bit of a shock that caused first meltdown and then a period of pensiveness.

What happened?

Not entirely pleased with how I was feeling a week into being on antibiotics - no increased lung functions, and just not feeling great in general (there was some improvement, mostly noticed at first, but that seemed to plateau after a few days) - I was looking over my sputum (lung goo) culture results from the last year.

I had been under the impression for the last couple of years that I had one very resistant (or "pan-resistant") bacteria (we'll call this Bug 1), one that had good susceptibilities to antibiotics (Bug 2) and another couple who move through like a revolving door but are nothing too serious.

Come to find out, according to my last two cultures, I essentially have not one but TWO pan-resistant bugs. When I asked my doctor about this, he said that Bug 2 has fluctuated in being sensitive or not over the last several years, but that yes, it is tending to become more resistant.

This was incredibly upsetting to me.

It also, in my mind, explained why I've been not able to recuperate my lung function since my back surgery at the end of May.

And it was why I really felt the need to get away to the mountains this weekend. It's funny how a change of place can change how your brain operates. Up here, I can think freely about things health-related. I'm not sure why that is. Just being in a different environment maybe. But it's invaluable to have this time and place.

Fall family portrait

So what does all of this mean?

The answer is two-fold. In one sense, nothing we are doing is going to change and there's nothing I could have done differently up to this point. In another sense, this has me butting up more closely than ever before to the lung transplant issue. My doctor hasn't said this, but the game seems to be changing here.

Transplant is something that I have long resisted, but with the caveat that my mind wasn't completely made up. Lungs are one of the trickiest organs to transplant and people with CF don't tend to do as well as some other populations because of our history with chronic infection. It's not something you want to do unless you really have to.

As I've said before, my doctor does not think I am to the point for transplant referral. But I can't help thinking whether or not having two resistant bacteria should hasten the process.

Not that I am anxious to do it...  I still don't even know if I would. I will save my pros, cons and reservations for another blog post. But suffice to say, this has all been a lot to take in and process and my normally positive persona has gone on a bit of a sabbatical.

For now, I am concentrating on getting the most out of the antibiotics I'm still on for the next week or two. Before I know it, it will be time for fun, sun and relaxation in Belize!

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