Today I Have Exceeded the Age of My Life Expectancy

I am not on the life-saving medication...

Today I have exceeded the age of my life expectancy.

In 2020, the median age of death for anyone with Cystic Fibrosis (or anything vaguely akin) was 37 years old. Just 10 years before that, it was only 24 years old.

I think the fact that I grew up not knowing what was wrong with me was one of the best gifts I could have ever had (late diagnosed and thought that my increasing stomach troubles and walking pneumonias were just my being someone who “always gets sick”). My dad is a lot like me in, a way. He has significant hearing loss, a genetic heart condition that we can vaguely trace back to his father (who tragically passed away at a very young age, when my dad was only 5), and gets a cough nearly every single time he boards a plane.

But if I’d grown up thinking I was delicate like a tulip… equations and estimations might have become an identity piece; Adornment.

I am not on the life-saving medication that has extended the span of many with CF in just a few years (our new prospective timeline being somewhere in the 50s or 60s now)… but that’s okay with me. Because, even though my spine and digestive system have floored and landlocked me in a way I never saw coming recently… I hate numbers.

If I listened to them, I’d think that I’d only live until 40 years old based off my heart condition. Thankfully, I had my Grandfather looking out for me in a way many with Brugada never do, and we caught it before it was too late. Now, that number is no longer.

If I listened to numbers, I’d think that my years of high liver enzymes (thanks to the C-to-the-F) would be associated with a “high mortality rate”, or that the 75-percent-ish ability to live a full life without your colon or large intestine would knock a few years off the end date too.

What happens when you add all of those up? Who does, who would?

In the last year… the year of 37… I’ve had 6 surgeries and 9 hospital stays.

We fixed the pinched nerve in my leg (the side that’s most impacted by my stupid spine)… they entered through my stomach and replaced a disc in my lumbar spine, then entered through my back and put a cage around my lumbar as well as a fusion of my SI joints (basically: tons of screws and bolts). I had a few “pancreatitis attacks” (really my liver), 2 discs in my neck replaced (a revision of a previous one that had moved), multiple ovarian cysts and scar tissue taken out, and then my gastric pacemaker replaced just days ago because the battery was about to die.

In the year of 37, my left foot has stopped moving twice (it’s stopped moving 4 times in total in my lifetime). We will be checking to see if the nerve is being pinched again, occurring on and off lately - because the way my spine impacts everything else is a domino game I never hoped to play.

In a few months, we will go into my back once more and take out the screw that is incredibly painful to live with, but which I had to endure for a year so my SI could fuse (after 2 prior failed fusions). The third time must be the charm.

I’m unsure if we will re-up my fundoplication, but after 2 years of slowly feeling my aspiration return and my cough and infection rate rise… we certainly will be talking about its merits to protect my lungs again.

We discovered that what remains of my colon has begun to grow INTO the mesh that is in my lower pelvis (keeping some organs from prolapsing) and though the topic of an ostomy has continued to be on the table for years now… I continue to dance away from it. I doubt my year of 38 will involve an ostomy, even if I trust my colon doctor and his beautiful bluntness with all my heart. I am too scared and phobic, against all better medical judgements. (Someone feel free to fix my brain please)

If you met me 10 years ago, when I was the age of the 1990’s life expectancy, you would have met someone with 26% lung function, an oxygen cannula in her nose, a breathing machine desperately needed at night to help with mucus, and a body that was shutting down...

But then…

PART ONE.

Continued tomorrow!

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