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.

 


6 Comments

Welcome to the club. (almost)

by Theknotguy - 2021-08-13 15:13:01

A lot of the people on the forum were going about their lives when they were alerted to a heart problem and ended up with a pacemaker/ICD.  So being surprised and having your life upset isn't really out of line.

You may hear from TraceyE who is on her 5th (I think) pacemaker.  She is extremely active, doing CrossFit training and all sorts of stuff.  Point being that even with a pacemaker you don't have to give up an active life.  If anything, you'll find out you can do better because you have a stronger and more regular heartbeat.   It's what happened for me and in fact, after having my pacemaker for five years they had to adjust it so it could keep up with my more active life style.  So the fact of having a pacemaker isn't in and of itself a limit to your life.  If anything, it's a help.  

If you're still concerned, there are therapists who specialize in adjusting to heart conditions.  I saw one right after I got my "surprise!!!" pacemaker and she was a great help.  

The main point that I'll stress over and over is that having a pacemaker isn't a limitation on your life, it's a help.  

I hope things progress quickly for you and you'll start feeling better soon. 
 

Next steps

by Persephone - 2021-08-13 20:38:40

It's nice to meet you, Runner.  It sounds like you could ask for more monitoring before making a decision.  You've taken positive steps to get the medical advice you need, and that advice seems to be that you'll have time to consider and weigh the options that you will be informed about next week.

Being Scared

by Oregon Girl - 2021-08-15 18:21:06

Hi Runner86 - I received sudden news that I needed a pacemaker at age 60, when I was very active and healthy. I did not know anything was wrong with me - and in fact had recently hiked up out of a canyon in the Dominican Republic after a mule ride there. I did pass out, luckily at home in the presence of my husband who promptly called 911. And after hospital monitors recorded my heart stopping several more times, I was told I was getting a pacemaker! What?!%&$??
 

Yes, it is a surgery, but after you are healed, you barely know it is there. You should be back to all of your normal activities within a short time. (Just don't overdo it, at first.)
 

 I think the mental acceptance of getting a pacemaker amounts to as much or more than the physical, for some of us. But you are in the right place here. Many caring people with first hand knowledge of what you are going through will answer questions, (virtually) hold your hand, and help you through it. For me, I was truly glad that I did not have a heart-stopping episode and pass out behind the wheel of a car.

Wishing you the best, and let us know how you do!

Oregon Girl

 

confused

by dwelch - 2021-08-16 21:42:22

I am confused as to what the question is.  What do you fear about a pacemaker.  Your biggest fear should be, how long will I live without one.  Hours?  Days?  Weeks, or months?  With a pacemaker, esp if this is AV block, forever.   The pacers and your heart condition become a non-issue for the rest of your life.

TraceyE and I are both on device number five,  complete heart block.   I got mine at 19 years old which was statistically at the end of my life span.  I am at 34 years with pacers now.

Someone posted in the last few days they are on number five, there is someone here on device number 10 I think.

34 is on the young side as far as the general pacer population goes, but there are many of us that will have devices for most of our lives.  

Like your belly button or one of the middle toes you dont think about it, you forget you have it unless you bump it on something, then minutes later you forget again.

If you need one the only thing you should fear is can I make it from now until the sugery.  How fast can I get the pacer put in.  Then you can relax and worry about other things.

Update

by Runner86 - 2021-08-17 20:00:10

Thanks all for the replies.

I met with my electrocardiologist today and, given I am asymptomatic currently, he doesn't believe I will need *emergency* treatment right now, so we have a bit of time (order of days/week or so) to run tests for sarcoidosis/apnea/lyme, but I'm pretty sure I'm looking at an implant sooner rather than later.

I'm thinking of asking for it to be implanted subpectorally, for aesthetic and psychological reasons. The doc said they are more likely to move around when they are placed under the pec (vs subdermal), is that accurate? Any truth to this? Subpectoral should be more hidden and more padded (for guitar/seatbelt) I'd think. I'd also think all the athletes out there would have it placed under the pec. Seems fairly common. I'm skinny and would rather build up a pocket for it now and deal with the initial pain and slower recovery.

 

Update

by AgentX86 - 2021-08-17 23:25:03

I really don't understand your EP's indifference with your 10+ second pause. Five seconds is where most get very concerned. At 8-seconds, it was lik his hair was on fire. It happened while I was sleeping and the montoring company told me to get to the ER as quickly as possible. I had an appointment with my EP that morning so ust went there. I was scheduled for a pacemaker in about 30 minutes (the following Monday).

As far as sub-Q or sub-pec, it sounds like you'd be better off with it under your muscle. I'm not shinny, though I've lost a lot of weight since the surgery. Mine is clearly visible and I wouldn't want to run much as it is. My feet, knees, and hips are long past running, so it works. I walk (a lot) though.

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