Heart Block - 100% Pacemaker Dependant

Sorry for the long back story but I am quite concerned, scared, upset, etc.

I had my pacemaker/ICD put in June, 2019 due to the ventricular tachycardia episodes I had due to a virus called sarcoidosis that somehow got into my lungs and heart.  It damaged my heart and the result was ventricular tachycardia.

The pacemaker has been pacing me at the low end to 60 bpm and at the high end around 175bpm.  All this time since June my heart was beating on its own power, but a tad slower than 60 so the pacing helped it go up to 60bpm.

At the end of January, 2020 I had an ablation to stop the arrythmias......and so far so good.  HOWEVER......I just found out yesterday that there was a complication that I read happens 1-20% in ablation surgeries where the electrical conductivity in the heart is interupted or cut off creating something called AV Heart Block!

Yesterday they shut off my pacemaker as they have in the past to see how my heart is pumping on its own and in the past it would go down a tad....yesterday I slumped over nearly passing out immediately after they shut the device off, where my bpm dipped under 5 he said.

Sorry for the long set up but wantd to give you the details.  So now, I am 100% DEPENDANT on the pacemaker to basically keep me alive.  I am so scared.  Everything breaks.  I have always liked the device as a nice insurance policy in case my heart got too fast........not it's basically the opposite........if it breaks down, there is nothing to keep my heart pumping....even if the ICD shocks me, my thinking is if there is no electrical system to have the heart pump on it own, what is it shocking my heart to do (if the pacing part of the device is broken).

 

OK, so I'm all over the place.  Afraid this device or the leads will falter and I pass out immediately with no shock to keep me alive.  I was so happy to think this was a back up....now its the only way my heart is pumping.

Any one else with heart block, can walk me off the ledge, etc.  Been a tough 24 hours.

 

Bill

 

 

 

 

 


6 Comments

Join the club

by AgentX86 - 2020-03-04 11:12:12

There are several of us here in the same boat. Relax! It's still floating and will for a long time. Pacemakers are incredibly reliable and, as they say, "Getting old isn't for sissies but it sure beats the only alternative.". Replace "old" with "heart disease".

In my case the AV block was elective and intentional. I'd tried everything else to beat Afib and ended up in permanent flutter and asystoles  as a result. I'm very symptomatic to both AF andAFK so went with the AV ablation and PM just so I could sleep. It was a quality of life tradeoff and a good one, IMO (and that's all that matters).

There are MANY others here in your shoes. Relax, your life isn't over, by a long shot. Just wrap your head around the fact that you are where you are and decide where you're going. How we got here is irrelevant - we're here. I know where I'm going. Figure out where you want to go and grab the ring. There is a bigger chance that depression will kill you than your pacemaker will. Don't go there, it's a long way back but it's your choice.

trust the technology

by Tracey_E - 2020-03-04 13:22:52

Many of us here are dependent. I've been paced every beat since 1994, have never had so much as a hint of a problem. Pacers are highly dependable state of the art computers, much more dependable than our hearts. I know it's easier said than done, but try not to overthink it. We are dependent on computers all the time- every time we drive our car, get in an airplane. To echo Agent, stress will kill you a lot faster than a pacemaker. 

Another thought, it hasn't been long. Sometimes over a few months your own heart can heal from the ablation and kick in again. Not enough to not need the pacer, but enough that if it were to shut off (there are virtually NO cases of this EVER happening!), your heart may eventually get to where it would kick in again. 

Heart Block - 100% Pacemaker Dependant

by aandw1933 - 2020-03-04 13:39:44

Tracey - - - your comment helps, alot.  Hearing my news yesterday it's been a tough 24 hours.  Good to know others have 100% pacing and it's not as uncommon as I thought.  The one thing I also heard was that the devices generally dont stop working all at once.....if thee are issues there are warnings (about the leads, batteries, etc) that gove one time to fix it.  The immediate shut off is what has been stressing me knowing my heart would go to zero!

batteries

by Tracey_E - 2020-03-04 16:32:19

I'm sure! Hearing something like that is a blow. Cut yourself some slack, it's ok to feel blindsided and take some time to wrap your head around it, to learn more about it. But at some point we have to make a choice to not let it define us or suck the joy out of life and move on. 

When the battery needs replaced, you'll have plenty of notice! They do not just shut off. They have an elective replacement mode which generally lasts 3 months during which it's fully functional, think gas light on the car. Then it switches to conservation mode which lasts another 3 months. If you pace every beat, you will know when it switches to this mode because your rate will stay exactly the same. We will be safe but it doesn't feel good if you pace a lot. I'm on my 5th and my doctors have never let me get to this second mode.  When I get down to under 6 months, they always changed my appointments from quarterly to monthly, but now I've got a home monitor so they can watch it that way. Because it's a 3 month window, I've always been able to schedule replacement at my convenience. 

For replacement surgery, they will use an external pacer as back up. Some doctors use a temporary pacer which is run through the groin but my docs have always used the external type with their giant stickies. They have the new one all programmed and ready to go so it's only a few seconds between the time they disconnect the old and connect the new, but if your underlying rate is low or nil, they will be prepared so we stay safe. 

In 25 years of pacing, I had one lead go bad. My other original lead is still going strong. It shows up in the pacing report. Now that most of us have home monitors, they'd see it there even sooner. They reprogrammed mine to keep it working normally and kept an eye on it. I didn't have it replaced for more than 5 years. The insulation was ruptured so they turned up the signal to get it through, picture running the AC with the window open. The house will still cool but the power bill goes up, my battery depleted more quickly than it should have. When the battery was low, they capped off the bad lead, added a new one, and replaced the device. Easy peasy. 

Feel free to reach out to me if you have other worries keeping you up at night. Being dependent is a lot scarier than it sounds. It's to be taken seriously and it's important to be informed, but it's truly no big deal. 

The beat goes on

by Gotrhythm - 2020-03-05 14:43:32

I wasn't pacemaker dependent for many years, but now I am--have been the last year or so.

Having been both I can tell you, I experience no difference between being dependent and not dependent. The pacemaker still does exactly the same thing.

But I remember when I first got my pacemaker. At that time I was paced about 37%. I did think about the device failing and there was a certain comfort in the knowledge that if the pacemaker suddenly quit, I wouldn't keel over dead.

Over time, I learned more about pacemakers. When you learn exactly what it is, what it's made of, how it works, and why it works that way--and how many failsafes have been built in--you will come to appreciate pacemakers for the modern marvels they are. Every day the pacemaker gets you through, every morning you wake up alive, trust will grow.

I didn't get to grateful acceptance overnight, and probably neither will you. But I think it is important to keep in mind that there are in fact many, many of us who are pacemaker dependent.

We who have pacemaiers all have hearts that can't beat regularly enough or fast enough to maintain life. And yet, for us life goes on, and often life that is much better quality than we had before.

Also Complete heart block

by Teri - 2020-03-06 19:28:54

I went into a sudden and unexpected complete heart block for no reason. I am otherwise healthy and no one in my family has this, that I'm aware of. I was just so shocked, and my pacer was inserted on February 10, so not that long ago. I am also 100% dependent. I went from fine to needing a pacemaker in an instant. So, that's an unpleasant idea to get used to, but I am grateful to be alive and to have it. If I didn't have access to a pacemaker, I'd already be gone! I've got too much life left for that!

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