Heart Journey Update

The day before we left for Alaska, I had an appointment in Ann Arbor to address the next steps in my heart arrhythmia journey. As many of you know, I had a subcutaneous ICD implanted in February, to protect my life if I suddenly went into cardiac arrest, since I am at a very high risk for it. Not only that, I had been wearing a LifeVest the past 9 months and trust me, it was time to get rid of that thing! The ICD is a better alternative and I am so thankful for it. It has never gone off, and we are going to keep it that way.

Then in May, I had ablations done, to try and zap the areas of my heart that were misfiring, electrically. Unfortunately, when I arrived and was hooked up to the monitors and machines, my heart showed very few PVCs or extra, irregular beats. They were able to zap some, but clearly not all. Thankfully, yes, I was thankful this happened, I had an episode where my heart went into a PVC surge and it was evident something was still wrong. They sent me home with a holter monitor and the results of that showed that my PVC burden is still indeed high. The first day it was 11% and the second day, it was over 16%. Anything above 10% is considered high. So to see the 16% come through was a bit alarming, especially since I was feeling the symptoms of them. PVCs in themselves aren’t necessarily dangerous, but it’s how they make you feel that can make all the difference and at times, the frequency of them.

So, we all were left to wonder, what’s the best solution? So 2 weeks ago, I went to U of M and it was decided that repeating the ablation procedure wouldn’t be of much benefit for me, so I would be put on another anti-arrhythmia medication called sotalol. It is a more common one to be on, but it does require you to be hospitalized for 4 days to be put on it. So on August 5, I will be admitted to the U of M Cardiovascular Center, to be monitored, as my body adjusts to this new med. It can have some crazy (yet rare) side effects and it takes a bit for your heart’s rhythm to get adjusted, which begs for the hospital stay. I am thankful to just be there and do it right, instead of going home and then having to be transferred back because my heart went into a dangerous rhythm.

At this point, if I’m honest, I’m in the “whatever” stage. Not that I don’t care, but it has been such a long road it feels at times, that if medication is going to make me feel better, even though it’s a band-aid, I’ll take it. I just want to feel better. In the grand scheme I am doing okay, but I am limited. Summers with the heat and humidity aren’t easy, and that’s why I’m ready for a new med. Unfortunately, I am not sure what this means with regards to a heart transplant for me. It was mentioned at my last heart failure appointment that if the ablations didn’t work, they would have to revisit the idea of a transplant. But I’m not even going there. I can’t. And I won’t until I have to. My next step is to get my heart’s rhythm under control and that’s my next road. There might be a detour or other road ahead, but my faith tells me to take it one step at a time because God’s got the rest.

It’s not easy. Do I get frustrated? Absolutely. Dealing with advanced heart failure is something that continues to boggle my mind – never did I imagine this for my life. But God is using this to open my eyes in ways I couldn’t on my own. He is challenging me and my faith in ways I can only be thankful for, and He has shown me more of Himself in ways I can only give glory to Him alone for. I am who I am because of God’s grace and what He has allowed in my life. And I know you could say the same for your life too.

If you are curious about what sotalol is and what this med does, just type it into the Google machine and it’ll explain everything. I thought about attempting to do so here, but I would do it no justice. Check it out. One of the thousand things I’ve learned in all of this is that being your own patient advocate and educator can be just as important as taking their word for it! I am beyond blessed to have such an amazing team of doctors on my case that continues to befuddle us all. But learning what I can, also helps me prepare mentally, but also know what questions to ask. And as many of you know, I’m an open book! So if anyone ever has any questions, please send them my way!

Thank you for following along in the journey…