Being known when everything feels unknown.

“Good morning, Alana. Take a seat and we’ll be with you shortly!”

That’s exactly what happened this morning when I walked into the heart hospital. I’ve been here enough that they no longer ask my name, no longer ask why I’m here…they just know me.

Now, granted, I suppose I do stick out a bit…I’m the youngest one here by a good…30 years? And I’m also pregnant. So I suppose I am memorable. But still.

It’s a familiar feeling, being known at the doctors and hospitals I frequent. When I was a teenager, every single person in the orthopedists office knew my name and my story. I was unique, and a frequent flyer.

People were interested in me.

It’s no different now. I’m “high risk” I’m unique, I have a story and a diagnosis that isn’t well documented or understood.

What I just found out, that I should have known a few months ago…is that back in May when I had my last echo, I was borderline for being in heart failure. My ejection fraction was only 53%, and anything under 55% is abnormal and headed into dangerous territory.

My follow up echo is this morning, and while only 3 months ago I thought things were fine…now I’m facing much more uncertainty.

I’m 28 years old and dealing with things that I see a hospital full of people dealing with 30, 40 years beyond me. It’s scary. I’m scared, I won’t lie.

If my echo is worse today, I don’t know what’s going to happen. They will either induce me and end this pregnancy early, or, less likely, they will hospitalize me to manage my condition better. I’m only 32 weeks pregnant, and baby boy would be 8 weeks early if he were born now. On top of his already preexisting genetic disorder that we know he has…I just worry. I worry that he won’t be okay, that I’ll have to leave him, that we won’t get that typical newborn experience I’m always trying to recreate since losing my first son.

Everything feels so unknown and scary. I don’t want to be in heart failure. I don’t want to have my baby 2 months early. And I don’t want to face these things that I shouldn’t have to be facing yet.

I know my story is “unique” and “interesting”. I know that people study us, and doctors from afar take a hands on approach when it comes to the care of myself and my children.

But that doesn’t change the fact that for me, it’s scary. It’s all one big huge unknown. And all I want to do is control and prepare.

And control and preparation in this scenario is one thing I absolutely do not have.

To be known when everything feels so unknown and uncertain…it can be a little bit disorienting.

I hope results come quickly, I hope answers come quickly. And I hope that it all just ends up okay.

But I’ll tell you…symptom wise, I feel worse. My heart feels worse. So my husband and I are…well, we’re less than convinced that things will be anything other than worse.

Time will tell.

Let’s see what my heart has to say.

The unknown will become known soon enough.

It always does.

4 thoughts on “Being known when everything feels unknown.”

    1. I will! I think she did the test wrong though…my doctor ordered a complete echo and she only did a partial. So now I’m a little pissed off about that. And I don’t quite understand why she would take it upon herself to change the orders

Leave a Reply

%d bloggers like this: