61%

There are all sorts of statistics out there about pulmonary arterial hypertension.

Which ones are correct, I couldn’t tell ya.

When I was first diagnosed, the articles I read about this disease had me feeling like I was going to drop dead at any moment.

One number that has always stuck out to me though is patient survival rate X number of years post-diagnosis. Most commonly I saw stats for 5 years.

I follow someone on Instagram who also has PAH and she did a post where she listed off some of these statistics and the last one stuck out to me the most:

61% of patients diagnosed with PAH are alive 5 years post-diagnosis.

To some, 61% may seem like a positive thing. More than half of people diagnosed survive after 5 years.

At first glance though, I didn’t see it that way.

In a room of 10 people, 4 are dead. To me, those odds are atrocious.

But I also knew, I had to be part of that 61%.

…

The next day at school, I wrote “61%” on my back whiteboard.

Throughout the day, my kids kept asking me what 61% meant. They know me well enough to know that if I write something random on the board, it’s usually connected to one of my stories and has some deeper meaning.

I’m very open with my kids about my health conditions and the ways in which I’m working to heal. They are part of the story and they love encouraging me (and getting on me if I tell them I did something off track).

After sharing this new part of the story with the kids, I knew it was time to resume protocol, or begin again, rather.

I failed myself in 2024 and I let myself slip in the progress I had made on my health.

On January 2nd, I repeated a couple of tests I’ve had before and the results showed a slight decrease from the last time I took them. After seeing that, my pulmonologist told me that when I take my yearly echo in July, if the results are any worse than my last one, we would need to repeat a right heart cath and add additional medications.

I didn’t say it outloud, but in my head, there was a neon sign flashing “Nope.”

I didn’t get out of a toxic marriage and move halfway across the country just to end up with the same fate I had there. I came here to get better, not get worse.

So on January 3rd, I resumed the protocol I learned about from my friend Jami with A Body in Repair and have been on it since.

The phrase “do or die” never rang more true.

…

Despite how stressful teaching is, it interestingly may be part of how I heal. A couple of my current students in particular have said and done some things for me this year that I can’t even put into words. Let me just say, they are proof that God exists and has a bigger plan for my life. This, for example, is a list of goals one of my students created for bell work before winter break:

This journey is hard, but moments like these are what remind me why I am doing any of this. Falling off the wagon is normal and I know I shouldn’t feel ashamed, but there comes a time where the next time any of us fall off that wagon, there may not be a way to get back on it.

My Dad wanted to heal, God rest his soul, but he didn’t implement enough of what he needed, when he needed it most. Too little too late.

I have to learn from that. I don’t want too little too late. I want a whole lot in just enough time.

…

It has been 3 years, 5 months, and 19 days since I was diagnosed with pulmonary arterial hypertension.

I’m still here.
I’m still fighting.
I still believe I can heal.

Either way I’m coming for that 61% and plan to be around a heck of a lot longer than any statistic will ever predict about me.