Heart Health

Going into all of this I knew I was in for hard work, but I don't think I was fully prepared for what that work would be. When I think of hard work, all my experiences tell me it's going to be physically challenging. Like my ankle and spine surgeries. A little pain, some bruising, some physical therapy and I'd bounce back quickly. Growing up as a dancer, a runner, a hiker and a lover of anything outdoors, I'm in my comfort zone when I'm pushing myself physically. I know the steps, I know the rules and I just go for it.

This is so incredibly different.

And I didn't think about it. Physically, my heart's ok. Structurally, there are no issues that were found. So this isn't physically getting my body into better shape, I'm not even at the vascular level yet. We're re-training my nerves which is so much harder. And requires so much patience. Which I'm so sick of hearing about. I know it comes from love but I'm not a patient person and I really am putting in all my efforts into getting better. One of my cardiac nurses joked with me that I looked "determined" in therapy on Friday. Pretty sure that's just how I look in general when I'm focusing on getting something right physically, I got a ton of notes for that with dance.

I don't understand how the nerves are getting re-trained, but we've been following the protocol from the Cleveland Clinic to the letter. My first day in therapy, the Friday before last, just at standing my heart was higher than my parameters allowed so I had to sit before working on the recumbent bike. I had to go so slowly that the bike system kicked me out three times, but if I went any faster or talked my heart rate would jump up. Insane. My first week, I was allowed three therapy sessions that included twenty minutes of biking, followed by a five minute cool down while hooked up to a heart monitor. This is such a step down from what I'm used to that I wasn't expecting a challenge at all. Physically, there wasn't one. Even in my VERY deconditioned state it was fine physically. But my heart was tired. Walking back to the car I had to take a break and lean against a wall and then fell asleep the second I got home. I hope it gets easier with time, I think it will. I keep trying to remind myself that this was my first week doing therapy and I shouldn't expect results right away.

Patience, right?

Here's the thing. When I had ankle surgery back in high school, my ankle felt better in the hospital when I woke up than before surgery, even though it had just been cut into. And I got the typical, "What did you do??" reaction from my surgeon. But my ankle strength and mobility came back right away and I danced again shortly after. With my spine surgery, I stopped taking pain pills two days after the surgery and did really well in physical therapy, again bouncing back quickly. I think I get it from my family; we heal quickly and have high pain tolerances. I'm used to bouncing back right away. I'm used to being strong and nimble and tiny and taking multi tasking to insane levels. This is such a huge lesson in humility and taking things in stride. I also get the feeling that once I'm let off the leash it'll be something like letting loose a cannon. And I will have SO MUCH FUN when that happens!

First comes re-training the nerves though, which actually seems to be working. My heart's already doing better in therapy, even though I'm completely wiped out after. Then will come vascular training, getting my blood and heart working the way they need to and THEN comes the physical segment. The physical segment being the only one I'm confident about not looking like a total moron doing.

Another snag, besides the exhaustion, is that my chest's been feeling really tight and I'm short of breath, kind of gaspy. Which is weird. I'm reading up on POTS websites and people's blogs to see if this is normal and I emailed my doctors about it. We'll see what they have to say.

All of this heart mess reminds me of my Grandpa. I didn't get to know him as well as I would have liked, he passed away when I was six. But I know he had congenital heart failure. He also had Celiac. I wonder if he felt these symptoms, too? My Dysautonomia book says that the quality of life for POTS patients is similar to that of patients with congenital heart failure. I feel like he's been watching over me this whole time. I like to think so at least. There've been times when it seemed like someone up there was smiling at me, and I just picture Grandpa's face when it happens.