New to this PM community

Hi everyone!

I am really new to this PM thing and hope to find some advice from this great community.

My story is quite short and started on the 3rd of November this year.

On this day I fainted the first time and had no idea why...

5 days later I already received a PM due to 3rd degree av block.

I am 33yrs old and was very active (Crossfit, mountain biking) before this heart block thing happened.

Since today I lost the trust in my body and have problems to accept the circumstances of being no more the same.

Today I had some kind of a throwback at work.. the symptoms I had before the surgery came back, a feeling of warmth in the chest but without the dizziness.

It seems that the PM had its first action today and since this incident I felt horrible and the anxiety is almost making me crazy.

My first checkup is on Friday and I hope the cardiologist can help to answer all my questions and to cope with my anxieties.

I have the feeling the cardiologist that implanted PM has set it too low (40) and therefore I still have the symtopms of feeling this warmth in my chest when HF drops. It makes me really worry and nervous at the moment this happens ... 

I wonder if someone has similar experiences or if you have any advice to find trust to this small device in my chest...

thx


6 Comments

how the pacer works

by Tracey_E - 2018-12-12 11:34:55

Ask them how much you are pacing atrial and ventricle. With av block we mostly pace ventricle which means our heart is setting the pace and thepacer is playing follow the leader, so you should never be as low as 40 and you shouldn't feel when it works. 

This is how it was first explained to me... the sinus node in the atria is the brains of this operation. It reads the oxygen in our blood and raises/lowers our rate accordingly. The ventricles are the brawn, they make the strong beat we feel as our pulse. The SA node in the atria tells the AV node in the ventricles when to beat. With av block, our atria is beating normally but the ventricles aren't getting the signal  either all or some of the time. a 2:1 block means it's getting one out of two signals. 3rd degree, or complete block, by definition means none of the signals are getting through and the ventricles beat at random all the time. So what the pacer does it watch. The atrial lead doesn't do much, it's there to pace atrial if we need it but for us it mostly just provides information. The ventricular lead is the one that does all the work for us. It watches every beat of the atria. It gives the ventricles a fraction of a second to get with the program. If they beat on their own,it continues to watch. If it doesn't beat, then it sends a tiny signal that mimics what the heart should have done on its own, and the heart responds by contracting. It's keeping the heart in sync, not setting the pace. If you actually have 3rd degree block (I'm no doctor but sounds to me like you may not be in block all the time) then it's common to pace every beat so we'd never feel it kick in because it is always pacing. 

That said, it's not at all uncommon to need the settings adjusted the first few weeks. They start us out with a good guess, but we're all different so often they have to fine tune it as we heal and get active again.

Once you heal and the pacer is adjusted for your needs, you should be able to do Crossfit. There are a handful of us here who do it. Once you are cleared to do it, ease back into it. You'll be able to tell when something isn't right, back off and try again in a week. Watch for signs the bar is on your device or leads in front rack, that can cause damage, other than that go for it. They usually put it low enough that it's not an issue. It took me about 4 months after my last one to get back to my old weights, to no longer be aware of it and cautious. 

Trust in your body and in the pacer will come with time. What you are feeling right now is very normal! We all go through stages of fear, anger, denial, self pity. For me, the better I felt and the more I was able to do, the less I thought about it. You'll get there. Cut yourself some slack. And if you are still having symptoms, give them a call. Tell them the day/time and they can see what the pacer was doing at that time. 

THX - Crossfit

by oip976 - 2018-12-13 10:57:11

Thanks for your motivating words and explanations. Really appreciate your advices.

Now I am looking forward to my 1st check up tomorrow get a bunch of questions answered...

@Tracey_E: Glad to find another CF enthusiast here. 

I have a sub-pec implant and asking myself if I would be able to get back to all movements after the healing phase. Just to ensure what are my restrictions. Although my doc said I would be able to perform everything as before the surgery... I am not that convinced to be able to get back to movements like HSPU, Snatch, overhead sq, muscle ups, handstand walk etc...
What is your feeling on that?
And what would happen if I hit the upper limit (170) of the PM.. I am really sure that will happen in some of the WODs :D 

Sorry for that newbie-questions... it is still a journey into the unknown...

 

 

 

 

wod's

by Tracey_E - 2018-12-13 15:00:02

You should be able to do all those moves! If we do a lot of ring rows, I'll feel the pacer the next day. Not bad enough to keep me from doing it the next time, but I'll be more aware of it for a day or two. For some reason push ups don't bother me at all, even after Murph, which seems weird to me because it's basically the same muscles as ring rows. I was cautious with the bar the first few months, didn't do any weights I was likely to lose control of and drop, was sore enough that I didn't want to risk bumping it. Now that there's no residual soreness, I don't worry about it.  I hate snatches, but that has nothing to do with the pacer! I've never gotten the hang of dropping under the bar properly so my snatch looks more like a power snatch + OHS. Muscle ups are not on my radar as I still can't do an unassisted pull up, but I don't see why not. Everyone is different, but if they buried it and it's out of your way, once you heal it shouldn't slow you down at all. 

Your heart can go as fast as it wants on its own, if you are not in block. The pacer can only pace the ventricles up to the upper limit so if you are in block and get higher than that, it could potentially be an issue. If you hit the upper limit, it doesn't feel good, not gonna lie. For me it can be dizziness or it can be a bit like hitting a wall. I'll stop, put hands on my head to expand the ribcage, do slow deep breaths until it comes down again, then get back to it.  I had enough problems with it that I went on a low dose beta blocker to keep my rate down. When I got my newest one, they gave me one that goes to 220 so now my upper limit is 190, went off the beta blockers, no more upper limit problems. 

Does your device go to 180? Most of them do but Medtronic and St Judes each have one that goes to 220. I had to do a stress test and show them all my numbers looked good when I got that high before they'd put my limit over 160. But I'm older than you, too! 52 year olds aren't really supposed to regularly work out over 160, but I do and I feel good and my doc is ok with it. If you regularly get over 160 (always leave a cushion of about 10 between your upper limit and how high you get working out), you'll want to keep an eye on your rate, at least for a while til you learn to go by feel. Ask how high yours will go,  get every bit of cushion you can.

Write down your questions! Don't know about you, but I get instant amnesia as soon as they ask if I have any more questions. 

exercise

by SamanthaS - 2018-12-15 13:52:36

Hi - I can so relate to this. I am 3 weeks out and starting to feel a bit better but the anxiety over the entire shocking episode lingers.  I had stage 3 heart block and got the PM the same day I basically passed out and ended up at the ER.  No time to think about, no choices.  

I had a long talk with cardiologist, who was very reassuring and I'm getting tweaked next week.  I also saw an integrative doc who recommended against anti-anxiety meds and right now I'm going with vitamin B complex, fish oil, magnesium at night and Kava tea.  I'm avoiding anything that upsets my stomach as I had a major GERD episode 2 days after the implant due to the stress.  I've lost 5 pounds; I am thin already and this was not a great thing.  After talking to these docs, I do feel less anxious and worried.

My implant is under the skin, so I hope it won't be a problem working out.  I practice yoga, fast walk and had just gotten back into weight training this past summer.  I had forgotten how much I loved weights, so I really hope I can get back into that.  I do worry a bit that the location of the device, center of left chest under the collar bone, will not interfere with anything.  I use TRX/QueenX as well as dumbbells and machines for pull downs for back and chest work.  Will I be able to do push-ups and other such chest stuff?  I love working my back, but my chest is really bony and a bit of muscle makes me look much better!

Love this site, we all get so much help from everyone else!!

1st checkup

by oip976 - 2018-12-19 11:38:40

@Tracey_E: Thx again for your motivating and enlightening words.

On monday I had my 1st checkup and to be honest, I was a bit nervous...

I followed your recommendations writing down all of my thoughts and questions regarding this PM thing =)

My cardiologist really took his time to answer all of my questions and seems to be quite competent.

He gave me the go-ahead for swimming, rowing etc. and has no concerns of starting again with crossfit after 8 weeks post surgery.

I described him the different movements of CF and the mechanical load someone has to push or move...

Long story short... he has no concerns that CF could affect anything on the pacemaker or the leads. I should only do sports consciously but in his opinion everyone should do that, even someone without a pacemaker.

My device is able to go to 180. However, he stated, since I am only having the AV block when I am resting, he is really sure that this will not happen when I am pushing weights around and my heart is pacing by itself^^

Sounds promising and I'm really looking forward to being back in the box.

THX @all 

Wish you all a happy and relaxing holiday time!

 

 

 

great news!

by Tracey_E - 2018-12-20 21:38:02

Glad you had a good visit! I've always found that when I made it clear I want to understand, doctors are pretty good about explaining things. And it's great that your doc supports  you being active, yay!! Check back when you go back to the box, let me know how it goes. Feel free to message me any time. 

You know you're wired when...

Your pacemaker interferes with your electronic scale.

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