Evaluation for Pacemaker

Hi Everyone,

I was diagnosed with Complete Heart Block at age 2 and haven’t experienced any symptoms or had any interference with my daily activity.

Each year I complete a 24 hr holter and regularly have echo’s and/or stress tests to monitor my condition.

Now at age 30 my recent holter reading about 3 months ago showed an increase in PVC’s from about 4 a day to 87. Based on this my doctor has requested I meet with him next week to discuss a pacemaker, My stress test results were great, reaching over 100% of my target heart rate and completing 14.5 min of the 15 min test. 

I did complete an additional 48 hr holter so we can see any changes in the last 3 months at my upcoming appointment. 

A bit apprehensive about the pacemaker since I am not sure I will experience any increase in quality of life. 

 

Wondering what questions you would recommend asking my doctor or any opinions on benefits I could see!

Thank you in advance.


3 Comments

increased rate

by Tracey_E - 2019-02-07 09:49:26

How high did you get on the stress test? Because if you were in block at the time it's nearly impossible to hit the target rate.  Ask how often you are in block, because by definition complete block means none of the signal gets through so the rate can't go up because the atria and ventricles are beating independently. If you have 2nd degree block, you can put off pacing longer than if it's 3rd degree (complete). 

Also ask how low you get when you sleep. That is something we don't feel right away but it's hard on the body, and would be a reason to get the pacer sooner than later. 

PVC's are extra little half beats. Most of the populatoin has them. Some of us have hundreds, if not thousands, of them. They are generally considered harmless and also are not fixed with either medication or pacing. Pacing add beats. PVC's are the heart working on its own. The pacer is a gas pedal, not a brake pedal so all it can do is watch pvc's. And count them, that's how I know how many I have, lol. I don't feel them, tho some do. 

I'm no doctor, but less than 100 beats of something considered harmless that can't be fixed with pacing anyway, to me that seems an odd reason to start talking about the pacer. And if your rate goes up enough on exertion to pass a stress test, that to me doesn't sound like 3rd degree block. Something doesn't add up. 

I have CCHB also, diagnosed at age 5 and paced when I was 27. I felt a lot better after. I wasn't feeling quite as good before as I thought I was.  Regardless if you feel different, having the heart out of sync and not having the rate go up adequately on exertion, are hard on our organs. I had it built up in my head to be something awful but the surgery was no big deal and I came out of it with more energy than I'd ever had before so for me it's been nothing but good being paced. 

 

 

Listen to Tracey E

by dwelch - 2019-02-12 03:43:19

I also have CCHB, diagnosed pre-teen first pacer not long after at 19, am on pacer number five over 30 years with pacers.

I was VERY active and probably should have had the pacer right away, but, I did notice the pacer in that my heart was oversized and worked hard due to the condition, and the pacer fixed it so that I felt very empty inside, I couldnt hear and feel every beat like I had gotten used to to that point.  so my transition was mental not physical.  I was able to go back to all the activities I was doing before (pretty much went right back to them).  

heart block is easy for pacemakers, but certainly you dont want to start before you need to. I assume with this many years being watched you have a doc you trust.  So trust what he/she says on this topic.

I think for us it is not as much of a case of I feel better right away, its a case of our hearts are not having to work so hard.  This is not a case of lets keep an eye on it until it wears out its a case of lets fix it before it wears out.  You have been at this almost as long as Tracey E and I have had devices, so by comparison you have been spared a few to handful of surgeries, which also wear out your organs.  I am more likely to have to switch to the other side before you do as I am 30 years and five pacers in, four leads in my body right now, one broken.  And you are not yet at number one.  I break another I move to the other side and/or they start pulling the broken ones out.  the tech is 30 years better than when we started.

But AFAIK you will need one, and you should get one before it is too late before its an emergency room visit or before you dont have the chance for an emergency room visit.  You might be like me where it makes it so smooth you cant feel your heart anymore but thats a good thing.  Or you might be like Tracey where you didnt know you could feel so much better.

Find a doc you trust, trust the doc you found, if they say its time...its time...

 

 

Thank you both

by Cwilcox - 2019-02-12 20:52:44

Thank you both for your input! It is reassuring to hear both your experiences. I agree that  I am going to trust my doctors opinion. After meeting today we decided to do one more stress test since my second holter monitor results showed a decrease in the number of PVCs. 

After that we will decide on the pacemaker. I am not against the idea but want to ensure it is at the right time. We have discussed the potential of having a loop monitor implanted if we do not go the pacemaker route. To ensure we are monitoring and making the choice to have a pacemaker when needed.

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