34 and terrified
Hi all, been following this forum for the past couple days. And I'm fairly certain I will be asked to join the club soon.
I have had minor chest pains all my life (EDIT: mainly to mental stress, this was my initial complaint to get me to see a cardio), exercise almost daily without incident, have never fainted. I also struggle with severe anxiety and depression symptoms and am in the care of a licensed therapist. My habit is to go between stages of "extreme worry" and "extreme content". When I'd start to worry a little bit (or get a little too content), I'd go to my cardiologist.
In 2013 I was given my first EKG/echo and it found LBB (QRS 140) and a bicuspid aortic valve. LVEF 50, no action, just yearly echoes from now until forever
2016 the first big shoe drops: I am recommended for a cardiac MRI and overnight Holter. Holter shows 1st deg AV block, MRI shows left ventricle non compaction (LVNC), which freaks me out considerably as it seems to be a big unknown unless you are waaaaay symptomatic, in which case it's high mortality. I go on maybe a few months of a low dose of lisonopril and beta blockers, then I ask my cardiologist again and she says I probably don't need it. EF 50%.
I get echo/EKG every year under care of the same cardiologist for awhile, no change in findings. EF is 50% consistently.
Fast-forward to June/July 2021, I decide to pursue a different cardiologist because I am just not getting a solid plan or concrete prognosis and starting to worry. He does an echo/EKG, EKG looks okay with my PR 205 QRS still 140, EF still 50%. In July he gives me a Zio patch (wearable ekg) to wear for 2 weeks, I carry on about my day and live normally, exercise etc.
I get a call last week from my newer cardiologist... "did you have my symptoms? fainting?" I tell him no, he says "okay so there are some really lengthy pauses here, going to review and get back to you", and says an EP will go over the Zio results.
This past Monday the other shoe drops: I have a scheduler call me to set me up with an "urgent, double-booked" appointment with this EP on Tuesday. I freak out and get ahold of the cardiologist the next day, who says I have signs of high-grade AV block in my sleep, still Grade I when awake, sinus rhythm, but the longest pause (they happened every several days) was 10.7s. 3 "big pauses" according to him, in the two weeks. Around 5-6 AM (REM sleep). I am told to mentally prepare myself for a PM. Maybe more studies, though with the long pauses they say "sooner rather than later". I am also told that I am not at risk for cardiac arrest and should be okay "for several years maybe, we caught this early" he said. Recorded HR minimum was 21 bpm on the Zio. Honestly I wonder as to the reliability of it here, I wear an Apple Watch to bed nightly and it has never warned me I am below 40 (my usual is 60-70 when awake, but at night I can go down to 40-45)
My first appointment to talk to an EP is Tuesday, I'm certain he will recommend some flavor of PM or ICD.
This is all happening so fast.
I am the healthiest I have ever been (5'10 and 145 lbs), exercising regularly with long (30 mile, maybe not that long) bike rides 😊 . I play guitar and video games, I love technology and work in software (naturally I have a healthy skepticism of the reliability of code now and in the future).
I am struggling very much to cope with needing a pacemaker, trying to predict best/worst outcomes of this upcoming apppintment, and just feeling like I am never going to be the same person, regardless of what the course of action is. It's very scary and I struggle with bouts of extreme anxiety, I worry about mentally fixating on the PM if and when I get it and wanting to tear it out! It's all just a lot of scary info all at once and I thought I had at least another 10 or 15 before any symptoms started happening (I was mainly thinking LVNC led to heart failure).
Appreciate any words of wisdom (especially from other younger folks) that can be shared. Thank you for reading.