Heart Block and Pacemaker

Hello all!  I recently found this place and this is my first post.  I had some questions and thought you all might be able to point me in the right direction.

TLDR - Will a PM make a big difference in my 3rd degree heart block?

I am a 43M, I was diagnosed with 3rd degree congenital heart block at age 36.  This is after spending 4 years in the USMC infantry, doc could not believe I was accepted to military service, or that I kept up.  I wore a holter for 72 hours after diagnosis and my avergae pulse came in at 38 bpm.  Doc stated all the lit said he should install a PM rght then and there, but there was no real evidence for that diagnosis, and based on not having any issues to that point he wanted to avoid surgery.  He also said based on my age I would have several battery changes which is even more surgery/risk.
Since then I have been doing check ups with Echocardiograms to monitor heart size.  He is also monitoring for other symptoms.  Tired, lack of energy, fiainting, poor fitness, etc.

My questions have to do with what makes sense in my spot regarding getting a PM.

Am I tired?  Yes, but is that because I am 43, out of shape and I have 2 kids under 6, or because of my heart block?
I am out of shape, and getting back into it seems tough, but agian, heart block or just 43 and out of shape?

Will a PM make a big impact in these areas, or will I go through a major surgery and still feel the same after?

I also hunt and back pack, as well as SCUBA dive, will my ability to do these be impacted by a PM?
 

Have any of you all been where I am at and then got the PM?  How much impact did it make?


7 Comments

Find a *competent* electrophysiologist and get a PM NOW!

by ar_vin - 2020-10-12 19:21:40

Given your medical history (provided by you!), you needed a PM yesterday.

The PM, once you recover from the implant procedure will be life changing.

You'll need to be patient and have the settings adjusted to match your physical activity which might take a few sessions with your EP/device tech team.

Depending on your lifestyle I'd suggest doing some research and getting an appropriate PM. Boston Scientific and Biotronik pacemakers are well suited to support a range of physical activities. 

 

Major Hospital Center

by marylandpm - 2020-10-12 20:01:24

  Go to a Major Hospital Center where they are experenced in pacemakers.

 Just go to the ER. 

Response

by Ruggerbunny - 2020-10-12 21:25:59

Thank you for the comments.

My cardio is an electro specialist.  He installs PMs constantly.

My hospital is major university hospital.


Other than tiredness, I have no symptoms, which is leading him, and me to avoid the surgery.  My uncle sold pacemakers for a living and let me know some of the risks, and every surgery has risks.  I just want to avoid taking unecesary risks, and it is not like I can take it back if I get a PM and it does not change anything.  But I also don't want to put off getting a PM if it is going to make a huge difference in my life.

I guess that is what I am trying to determine.  Is my tiredness normal for a 43YO father that is out of shape, or is it a result of my condition.

Has anyone had their sleep improve with a PM?

Sleep?

by AgentX86 - 2020-10-12 22:54:21

You bet!  Though it wasn't the pacemaker per se.  I had an AV ablation at the same time, which made the symptoms of Aflutter go away.  One thing I noticed is that I dream a lot more.  I never used to dream, or remember.  Now it seems to be almost all night.

Pacemaker surgery is pretty minor, as surgeries go.  Sure, something can go wrong with an ingrown toenail but PM implants have an extremely low major incedent rate. The recoery is almost always easy.  My recovery was a trivial inconvenience with almost no pain.  I would have walked out of the hospital the same day if I weren't dependent on the PM (a failure could have been fatal).  They wanted an overnight to make sure all was right.  It was and I felt great. ...and I could sleep again.

Mine was done with only local anesthetic, saving the small risk of the anesthetic. I had the AV ablation at the same time, requiring two EPs. My EP did the catheterization/ablation while another implanted the PM.  That's two locals.  No big deal.

I agree with the others.  You need this yesterday.  Actually, you needed it years ago. Age has nothing to do whether or not you need a pacemaker.  Nothing. Heart block is probably the second easiest arrhythmia for a Pacemaker to fix.  The only simpler problem for a pacemaker would be Sick Sinus Syndrome (SSS), which may or may not have more issues getting the PM tuned to your lifestyle.

I sure wouldn't SCUBA dive with that heart, as it is.  With a PM there won't be any problem, though you'll be limited to 6m with most PMs.  Make sure you tell your EP that this, and any other activity, is important to you.   Since your problem is a heart block, you probably don't have an issue with your SI node (no SSS) so the PM brand matters a lot less.  You want one that will take the most pressure.  Again, make sure your EP knows and understands how important this is.

With two kids under the age of six, your kids nee their father.  Think about that, long and hard.

What other symptoms are you waiting for?

by jcb - 2020-10-13 10:06:19

Guidelines say:

Permanent pacemaker implantation is indicated for advanced second- or third-degree AV block associated with symptomatic bradycardia, ventricu-
lar dysfunction, or low cardiac output. (Level of Evidence: C)

However, somehow you seem to have convinced yourself that you are asymptomatic and that your tiredness is caused by your advanced age of 43 (seriously??) and having young kids. 

It is my understanding that with congenital heart block you'll need a pacemaker sooner or later. Postponing this while in the mean time feeling tired all the time doesn't sound like a logical choice.

risks

by Tracey_E - 2020-10-13 10:17:37

It's a minor surgery, not major. Some people don't even stay overnight. Complications are rare, contrary how it may seem from reading the posts here. For every person coming here with a rare complication, there are thousands out there living their lives without complications. Replacements are a piece of cake, I'm on my 5th. I'm usually home fixing my own lunch. 

The risks of not pacing are a lot higher than the risks of surgery, imo. Heart block doesn't go away. It sometimes stays the same but usually progresses. When we are young and fit, the body compensates and we get by. As we age, it loses that ability, and the heart being out of sync and the low heart rate take a bigger toll. Fatigue is first, then dizziness and passing out. You want to fix it before it gets that bad, we've had members pass out while driving then had to deal with emergency surgery along with the accident injuries. In my case, they wanted to wait because I was so young (early 20's). My rate was steady in the 40's, then dropped to the 30's. It tanked and was 22 when I was admitted for emergency surgery. Not the easy way to do it and I had no idea until later just how much danger I was in. 

I've been paced 27 years now for 3rd degree block, have never had a major complication. Without the pacer, I probably would not have seen my 30th birthday. With it, I have two children who are both grown now. I run races with the oldest, hike and zipline with the youngest, lead two active Girl Scout troops. I do Crossfit, hike or ski most vacations, kayak every chance I get. I've looked into SCUBA, my pacer is rated to 4atm so fine for recreational diving. No one wants to be paced, but for me it's been nothing but a blessing. 

Do you have the energy to get in shape right now? Or is the low heart rate making it too much effort? The last couple of years before I was paced, I didn't have the energy to even think about working out. It wasn't lazy or tired, it was low heart rate. Eventually just getting through the day was exhausting. I could literally feel the difference the minute I woke up in recovery, it was like night and day. Not everyone feels it that drastically but for me it was like suddenly mainlining coffee. I got in trouble with the nurses that night for pacing the halls but I was too full of energy to sit still. 

Question to ask your EP. If you were 60 or 70 with the same symptoms, would he be putting in a pacer? If the answer is  yes, if the reason for putting it off is strictly your age, then do it. Age is a stupid reason to suffer when there is a fix. All ages need adequate heart rate. 

If you plan to hike with a pack, make sure the surgeon knows so they can place it so that it's out of the way.  Some members have it placed so that it isn't comfortable. Mine is between the pectorals, I can do a long hike with a heavy pack, no problem. 

Tell them you dive. Some models are rated deeper than others. 

Are you left handed? If you are, then you'll want the pacer on the right side. They usually put it on the left which means rifles and shotguns are fine if you are right handed. 

It's possible your fatigue is from having two kids under 6 and being out of shape, but it's likely the low heart rate is a factor. Our bodies need oxygen to thrive. We can be strong and tough it out, but bottom line is 3rd degree block is hard on the heart because it's beating out of sync and it's hard on our organs because they aren't getting the oxygen they need. As someone who's been in your shoes, my suggestion is just do it. You want to be there for your kids, not tired and worn out but full of energy and involved. Do it on your terms now before it's critical like happened to me. Enjoy your kids, don't struggle to keep up with them when you don't have to. Be safe for your kids. 

Now is the time

by dwelch - 2020-10-27 07:16:16

As all avove have stated you should already have it.  I think the symptom is called death, you might as mentioned just get lucky and have a car wreck, hopefully the kids survive, and you wake up with broken bones AND a pacemaker.  There is no sugar coating this.

It is the best of the heart conditions to have because it is so trivial to fix with minor surgery there is nothing major about it.  In and out done.  Once ever 10 years or so.  Full recovery is measured in weeks, but folks like Tracey_E and I that have had multiple devices, back to driving in a few days, things like washing your hair with both hands or lifting things with both arms over your head, those take longer.  But the recovery time relative to the replacement time is trivial as well.  Pro tip, read Tracey_E's posts, very high rate, some exceptions, of just do what she says it is the right thing. 

You will want to help the doc choose the device, the doc chooses the device, that is how it works, your job is to indicate your activities.

Yes as she mentioned, just like reviews on amazon, most are negative, only unhappy folks post, happy folks only a small percentage. for every pacer complication post here, the number of successes with no issues is very large.

Will it change your life?  Yes, 1) you will get to see your kids grow up.  I think that is enough, a list of one thing.  I would not have made it very far into adulthood without mine, I dont think I would have lived as long as Tracey_E without hers.   I would never have had a child nor seen her grow up.  I would not have had the adult experiences and friendships I have had and continue to have.  The only thing I regret is not getting it sooner, I was a child for most of it, and even at 19 not wise enough not educated enough to know what was going on, I was relying on the adults while at the same time lying about things to keep them off my back.

You need a better doc.  The surgeries are not the risk, the not doing it is the risk.  I am on my fifth device and who knows it could be another five more, we have at least one here that has 10 devices, when I joined years ago one with 8 devices at that time.  The surgery is not the risk at all it is not a reason to avoid fixing something so trivial yet so fatal.  They should have referred you to a real cardiologist/EP rather than just reading some literature on the topic.  I was fortunate to see non-pacer statistics on the internet before pacers essentially wiped out the risk of my condition, and those web pages were removed and/or replaced, now I cant find those stats (online, probaby have to go to a library).  If you wait for symptoms then it may already be game over.

I really hope you join the club.

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Jerry & The Pacemakers is your favorite band.

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