I’m about to get really real, so you may want to pass on this post 🙂
It’s cool. I know this isn’t for everyone
It’s Alpha-1 awareness month! We’re getting ready to head out to the virtual walk. Before we do, I wanted to share a bit of my story.
When I was young, my mother died of bronchial pneumonia. I know this because I found and read the death certificate. I was in 7th or 8th grade when I found it in our attic.
It was bizarre. I had always thought that an autopsy would be hard to read because of all of the jargon, but I found it oddly readable. The only thing I can really remember reading were the words “bronchial pneumonia”.
For a long time, I thought of this as a freak occurrence. Sure, 60,000 people die of it each year, but those are mainly infants and the elderly. This shouldn’t happen to an otherwise healthy 30 year old.
I remember that my mom didn’t go to the doctor when she was feeling sick right before she died. Maybe we didn’t have health insurance and we were trying to save some money? I don’t know. I just remember that she wouldn’t go for some reason or another. For the longest time I blamed insurance and doctors for messing up.
Last year, I found a better explanation, but I didn’t find it by choice.
It was September of 2015, I was turning 40. I was in the best shape I had been in a long time.
I was on my way to a healthier weight.
I could deadlift and bench press more that my bodyweight.
I could run a 5k in under 35 minutes.
Shannon and I were going to break the 30 minutes mark in the Labor Day 5k.
It was going to be a great weekend!
Then, the week before Labor Day, I felt something weird in my chest on the right side.
Imagine a bubble level, except you’re the level and the bubble is floating around your chest, that’s about as close as I can describe it.
Into the hospital I go to get my lung re-inflated, huzzah! I came home the Friday before Labor Day.
Then over, the weekend, it happens again. Another collapsed lung!
This time, after the re-inflation I’m having surgery. They’re going to remove parts of my right lung (the very top and bottom to be specific) and perform
something called a pleurodesis where they get the lungs and the membrane surrounding the lungs to cling together to avoid another lung collapse.
Recovery takes a long time. I’m still recovering from this surgery.
It’s not just physical, it’s psychological too.
I feel helpless at times, out of control in others. Either way, there are things I can control and things I can’t.
I can avoid smoke most of the time. That’s the big thing for me. But I can’t avoid it all together when I go out. Things like that add up to where I feel like I have no control and this damn disorder will dictate my life and I HATE IT SOOOO MUCH!
What’s even worse is that this is a genetic disorder. But it’s not like the dominant/recessive genes we were taught where you needed 2 of these genes to have it. This is a bit more nuanced. With this, two normal genes is good, only one normal gene is ok as long as you live a certain way. Two non-normal genes can be awful.
I have one good gene and one non-normal gene. Shannon has two normal genes. We have 4 children, you do the math. This doesn’t just affect me.
Recently I went to Denver, Colorado. Sure I went there to regain the 40th birthday celebration, but more importantly, I went to prove to myself that I could. It was a really cool trip.
It sounds silly, but I really did need to get my groove back. I need to know that I’m not helpless in this and it’s not left up to chance.
While it feels like I have no control in the end, I do have some control. Sure it’s not much and I need to assert it more often to keep myself sane, but it’s what I have to do.
If you’re still reading, thanks.
if you’re ready to kick this disorder’s ass, more power to you.
Aside from me offering my body to science, you can help by donating and raising awareness.
If you can donate, join us on the virtual walk this month
If not, feel free to share this post with anyone to raise awareness.