There’s bumps in the road, but I am okay.
There’s been many times over the past six years that I’ve felt like my body was failing me. The one organ that is suppose to keep me alive is not wanting to work properly.
Last week I had my follow-up from my ablation, and my doctor was not happy with the results. For the first time in the four years that he’s been my doctor I finally felt like he understood the frustration. He understood how it felt to think a path is going to work, and then it doesn’t.
The surgery was successful for a specific type of arrhythmia, but my heart is still having a lot of high rates even after the surgery- called IST. This isn’t a new diagnosis. I was diagnosed with it in 2013. It was the first heart condition I was diagnosed with. My SVT started in 2016 and we’ve been focusing on that because it was the one that was possibly curable.
IST has no cure, because there is no rhyme or reason, the heart just malfunctions just because. Hint why it’s called Inappropriate Sinus Tachycardia.
So- we added a new medication.
My doctor said he wasn’t okay with kinda better. He wants to give me my life back, which I am very thankful for.
I feel like we’ve tried everything, and I am honestly getting worn down. Six years is a long time to fight a battle against yourself.
I am iffy on this new medication. It is not approved by insurances, expensive long-term, and is fairly new with not much research, at least in the States.
It is a heart failure medication that’s goal is to lower my heart rate so it doesn’t have to work as hard. It tricks the part of my heart that controls the rhythm to beat slower.
So far it’s working fairly well. I’ve only had one episode of 149bpm since starting this medication. I used to have multiple daily.
It’s been staying around 60bpm which is a whole new world for me.
I’m enjoying it, but it’s not perfect. Because it’s beating a lot slower than I am used to, I’m having a lot of chest pressure and pain, more than normal. But hopefully with time, it’ll get better.
I am just taking it one day at a time, and being thankful that I am able to do this trial of medication. I go back in three weeks to discuss if this is the path we want to continue.
I tried this medication four years ago when the FDA finally approved it. I tried it, and it was not a good match for my heart. That just shows how much my heart is very temperamental on what it likes. Typically a medication will work for about six months and then it stops working and I have to try something else. Sometimes I can go back to the medication a year or so later and it will work again, for another few months. I feel like I am constantly changing medications and dosages. My heart can’t decide what it likes, and I hope one day I can stay on one medication for longer than 6 months. I am ready for my heart to have stability.
I know this medication will come to an end eventually as our dream to expand our family cannot medically happen as long as I am taking it, but I am happy to have it in the meantime until we decide to add another little one to the mix.
I think the hardest thing for me is to remember that I am not a failure. My heart’s issues do not define me. I am craving stability and even if my heart is not 100% healthy, I just want it to be stable. I want it to be predictable. I hate feeling great, and then the next day feeling like death. I just want a smooth ride.
But obviously, life is never smooth. It comes with challenges, and ups and downs.
I am taking it one day at a time, enjoying the new medication, praying that we find a way to get around insurance not covering it, and waiting for the next bump in the road that Herald always likes to throw into the mix. Until then, I am doing okay.