I had a cardiologist appointment today. I realized that it had been TWO YEARS since my last appointment. As someone with congenital heart defects, that’s not exactly a good idea. And given the fact that my stamina has severely declined over the last few years, it was long overdue.
Adults with CHD are generally advised to go to an ACHD specialist because “regular” cardiologists (that see adult-onset patients) don’t understand our anatomy and pediatric cardiologists that understand our anatomy aren’t familiar with the problems that aging adds to the mix.
When I was a child, I went to a “regular” cardiologist and was one of only a few child patients. Then I became an adult and found myself a pediatric cardiologist. At the time, there really wasn’t an ACHD specialty. But here I am 25 years later and I’m still seeing that same pediatric cardiologist. And I have no plans to change that unless she retires.
I was reminded today why I love her so much. All she has to do is look at me and she can tell when I’m worried about something. She asked me how I was feeling and I flippantly answered “fat” and said that it was probably my weight gain that was dragging down my stamina. She moved right past the “fat” comment and went right to what was really concerning me. Is my heart function declining? Unfortunately, I’ve never given echo techs an easy time finding good pictures of my heart. The tech she’s had for years has learned my best windows, but she recently had knee replacement surgery and there was someone else performing the echo. I don’t know if that’s what made it difficult to get a clear picture of what my heart is doing right now or if it would have been a problem regardless. My doctor began brainstorming (and including me in the discussion!) how to best get a clear picture, given the limitations due to my ICD, mechanical valve, and unique anatomy. She is going to discuss options with an ACHD doctor tomorrow when they have a meeting. She thinks it might be time to adjust medications (I’ve been on the same ones for more than 10 years).
Meanwhile, she wanted to get a halter monitor on me to see what (if anything) is going on when I get short of breath. It’s clearly been a very long time since I last had a halter monitor. The last one I had was at least 18 years ago and I am pretty sure it had multiple electrodes and a recording pack. The one I got today is so tiny in comparison!
I’m pretty sure my skin is going to hate me by the end of this 48 hours, but at least they let you shower with this one! I’ll have to skip aqua on Wednesday, but at least I’ve broken through the mental block for going to yoga.
I’m nervous about what the ACHD doctor will suggest regarding getting better pictures. I would not be surprised if a heart cath is in my near future. The last one I had (2012) resulted in waking up in ICU because my ICD went of 7 times during the procedure. And then that ICD had to be replaced 2 years faster than any of my others. Needless to say, I’ve got some anxiety about that.
I’m doing my best to put that anxiety aside, knowing that it’s better to be proactive than wait for my health to deteriorate even more than it already has. I know I also need to work on losing weight. Which I’m trying to do. But I also know that it’s not going to be an overnight change. As much as I wish it was.
I should hear tomorrow about what the next step will be. At least I won’t have to wait too long!
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