I’ve had so much to blog about lately, and not enough energy to sink my teeth into it.
The press release from the Coalition for Pulmonary Fibrosis, coupled with my drug trial anniversary coming up, has had me thinking lately.
Sometimes it seems surreal. Yes, I have the occasional day when I need my albuderol inhaler, or am having some other HPSish issue, but I don’t feel “sick.” Yes, my life is interrupted by health issues way more than it should be – yes I don’t always have the energy I wish I had – but I just don’t feel “sick.” I know plenty of people who are very “sick” and thus sometimes I hesitate to ever complain. I do complain here, mostly because I wouldn’t be keeping a very good record if I didn’t – but there are days I feel very guilty about it.
Then I read something like the press release below.
There’s nothing there I didn’t know already.
It isn’t as if I somehow ever forget what I know about pulmonary fibrosis. I can rattle off the average life expectancy, the fact that there’s no approved treatment etc. in my sleep.
But every time I see it in black and white – every time I actually read it – it’s a bit jarring.
A few years ago I was with Donna representing the Hermansky-Pudlak Syndrome Network at the American Thoracic Society meeting. We were sitting in the back of a scientific session scribbling down notes with questions to take back to our researchers. This is a meeting of doctors, not patients, and when doctors are amongst themselves, they speak differently than they would to a patient crowd. This is rightly so. I would never want it to be otherwise.
But I remember one doctor stating in his presentation that he felt pulmonary fibrosis was worse than a cancer diagnosis because at least he could offer his patients with cancer a treatment. Personally, I see no value in comparing which disease has it worse. There are plenty of people with untreatable cancers who might have a bone to pick with him. The point is it rattled me to hear it. This was a schmuck in a white coat, an expert, essentially telling all of his expert buddies how hopeless it all is.
At the same time, there is so much happening in the world of research. It’s amazing the things we know now that we didn’t know just a few short years when I was first diagnosed with HPS. And every year that passes we’re learning more and more.
Most patients don’t get diagnosed with pulmonary fibrosis as early as I did, and thus never get the chance at early treatment. On my NIH trips I take every chance I get to pick the brains of our doctors about what I’ve read and what they’re working on these days.
Psychologically, however, sometimes riding the wave of medical research means having a foot in two bizarre worlds. One part of me knows the raw facts and figures, the stark reality that unless science finds a way to stop it, this fibrosis will be fatal. The other part of me marvels at all the exceptions to the rules, the advancements, the progress, and the reality that God is the only person who ultimately knows how this is all going to play out – and I start to think of this more in terms of being an ongoing chronic illness rather than a terminal one.
I suspect that as science marches on, there are a lot of people in that place. It wasn’t long ago that cancer patients didn’t have many options. It wasn’t long ago that patients with H.I.V. didn’t do so well, developed full-blown A.I.D.S. and died. As long as research continues there will be a point at which any given diagnosis goes from terminal, to chronic to cure.
We all want to be in that group. But, the tricky part is you don’t know if you are along the ride.
The press release from the Coalition for Pulmonary Fibrosis, coupled with my drug trial anniversary coming up, has had me thinking lately.
Sometimes it seems surreal. Yes, I have the occasional day when I need my albuderol inhaler, or am having some other HPSish issue, but I don’t feel “sick.” Yes, my life is interrupted by health issues way more than it should be – yes I don’t always have the energy I wish I had – but I just don’t feel “sick.” I know plenty of people who are very “sick” and thus sometimes I hesitate to ever complain. I do complain here, mostly because I wouldn’t be keeping a very good record if I didn’t – but there are days I feel very guilty about it.
Then I read something like the press release below.
There’s nothing there I didn’t know already.
It isn’t as if I somehow ever forget what I know about pulmonary fibrosis. I can rattle off the average life expectancy, the fact that there’s no approved treatment etc. in my sleep.
But every time I see it in black and white – every time I actually read it – it’s a bit jarring.
A few years ago I was with Donna representing the Hermansky-Pudlak Syndrome Network at the American Thoracic Society meeting. We were sitting in the back of a scientific session scribbling down notes with questions to take back to our researchers. This is a meeting of doctors, not patients, and when doctors are amongst themselves, they speak differently than they would to a patient crowd. This is rightly so. I would never want it to be otherwise.
But I remember one doctor stating in his presentation that he felt pulmonary fibrosis was worse than a cancer diagnosis because at least he could offer his patients with cancer a treatment. Personally, I see no value in comparing which disease has it worse. There are plenty of people with untreatable cancers who might have a bone to pick with him. The point is it rattled me to hear it. This was a schmuck in a white coat, an expert, essentially telling all of his expert buddies how hopeless it all is.
At the same time, there is so much happening in the world of research. It’s amazing the things we know now that we didn’t know just a few short years when I was first diagnosed with HPS. And every year that passes we’re learning more and more.
Most patients don’t get diagnosed with pulmonary fibrosis as early as I did, and thus never get the chance at early treatment. On my NIH trips I take every chance I get to pick the brains of our doctors about what I’ve read and what they’re working on these days.
Psychologically, however, sometimes riding the wave of medical research means having a foot in two bizarre worlds. One part of me knows the raw facts and figures, the stark reality that unless science finds a way to stop it, this fibrosis will be fatal. The other part of me marvels at all the exceptions to the rules, the advancements, the progress, and the reality that God is the only person who ultimately knows how this is all going to play out – and I start to think of this more in terms of being an ongoing chronic illness rather than a terminal one.
I suspect that as science marches on, there are a lot of people in that place. It wasn’t long ago that cancer patients didn’t have many options. It wasn’t long ago that patients with H.I.V. didn’t do so well, developed full-blown A.I.D.S. and died. As long as research continues there will be a point at which any given diagnosis goes from terminal, to chronic to cure.
We all want to be in that group. But, the tricky part is you don’t know if you are along the ride.
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