Passover

I won’t post pictures, because I’m firm in my belief that most adult males –especially those whose feet have spent many years in combat boots– have no business exposing their toes to polite society, but trust me when I tell you that my feet are grotesquely swolen.

My left foot is much worse than my right –a dead giveaway of the pulmonary hypertension and the heart failure that goes along with my disease. For years, as soon as doctors or nurses would hear of my emphysema, they would immediately start poking around my feet. I always felt so lucky, so gratified, to be able to respond that I didn’t have any swelling.

I also didn’t have much congestion. I would read horror stories about end-stage emphysema patients who battled constant congestion and obstruction, fighting for every breath –drinking pineapple juice for hours a day in a vain attempt at relief.

The thing was, in most of those stories, their lung function was better than mine.

In emphysema patients, the number you’re most concerned with is the Forced Expiratory Volume, or FEV1. It’s a measurement of how much air you can clear from your lungs in a given amount of seconds. Contrary to popular belief, emphysema isn’t about not being able to get oxygen in, rather it’s about not being able to breathe air out and clear the CO2 that builds up. Your lungs are like a balloon that you can’t empty, and thus can’t fill with new, oxygenated air.

Your ability to clear your lungs is measured as an expected value, based on what the average healthy person of your age would be able to do.

For the last 10 years, my FEV1 has never been higher than 23%. I am currently around 14%. You can basically think of that as my lungs function at 14% of what they should, for my age.

But most patients –and doctors– shorten all of that until the FEV1 simply means “lung function”, regardless of age, so that people just compare their raw FEV1 number as if it were a hard metric of what you could expect

For years I would measure myself against others who had my disease based solely on FEV1. I was at 23%. Someone else was at 30%, but dealing with never-ending congestion and hypertension. I dealt with neither. I concluded that, like the Israelites in Egypt, I had somehow been passed over. I heard horror stories about what this disease was from people whose FEV1 numbers were far better than my own, and falsely concluded that I had been spared.

What I failed to take into account was age.

Most emphysema sufferers are elderly. The FEV is adjusted for age. Their 30% was not at all applicable to my 23%. Most 40-year-olds do not have emphysema. I was a statistical outlier.

I thought I had skipped out on the hypertension and the congestion and the burning, ripping pain of it all. But I hadn’t. It just hadn’t happened yet.

And now it has.

My left foot is so much bigger than my right. Every time I inhale it sounds like drawing chalk across a slate. When I cough I sound like a seal barking. I had deluded myself that I was immune to it all, but in the last six months, every month brings a new, cruel reminder that –not only will I not beat this– but that I am fast running out of time.

So I hope I get some stories written down before I go. I hope there is something meaningful left behind. I hope that, when it all comes to a head, and then passes like a summer storm, that there will be something left of me that was worthwhile.

I hope I will have left something that justifies all this suffering; some potentially profound beauty that outweighs all this tragedy.

But even if there isn’t–even if I leave nothing of substance, and am never remembered beyond the memorial service– I hope that those of you who have known me have been touched enough by my existence that you have found some happy interaction, or token, or memory, that is precious enough that you will have judged my life worthwhile.

And if not, at least let it be said that I never wore sandals in public.

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