To pace or not?

Hi,

I'm 31 and have complete block since birth, yet suffer no apparent symptoms. I have to confess I never really took much interest in my condition when I was younger - when I was a kid it was always explained to me as "your heart beats slower than most peoples, but it beats stronger to make up for it". I felt fine so never thought much about it. I have checkups once a year and Doctors have always told me that 1 day I might need pacemaker.

A few checkups ago one of the doctors hit me with some research findings he'd discovered - I think it was this:
http://circ.ahajournals.org/cgi/content/full/92/3/442
suggesting that there could be value in having a pacemaker before I felt symptoms - this was a definate change in their opinion from earlier years where they always said as long as you feel ok then we'll leave you be.

Now as I'm getting older I'm thinking more and more about it and am kind of scared that one day my heart might just stop? How likely is this? Should I get a pacemaker fitted just in case? Will it make me feel different?

Another factor - as stupid as it sounds is welding. I love old cars and working on them including electirc welding. Most of what I read online tells me you can't use electric welders if you have a pm.

Basically I feel like if I get a pm my quality of life suffers, if I don't am I a timebomb waiting to collapse / die?

Really confused. Annual check up in a couple of weeks so I'm trying to get my head sorted before then so I can discuss it with my doctor.

Thanks for reading!

10 Comments

wow

by Tracey_E - 2008-11-07 02:11:22

The report is interesting, but 100 is not a very large sample.

31 is a long time to go with out a pm if you have a congenital complete block! I have the same condition and raised a lot of eyebrows when I waited til the ripe old age of 27 to get mine. My hr was mid 40's but eventually started to drop off to the 30's when I became symptomatic and got the pm. That was 15 yrs ago and I would describe my quality of life as simply amazing.

Part of why they told us to wait to get it years ago is because technology just got better and better, so the longer we wait the better the pm would be. They're pretty amazing now! You and I were told as kids to hold off, now they tell young kids to do whatever activity they want and if they can't keep up, they'll get the pm. The prevailing attitude is not what it was 20 or 30 years ago and doctors are a lot faster to do an implant.

How is your energy level, and are you able to do sports, etc? I always felt pretty good, but I had no stamina so sports were out of the question before I got the pm. Now, after fifteen years, I'm still like a kid in a candy store, trying to do new things I was never able to do before. For that reason, I wish I had gotten it sooner because what I *thought* felt good, really was limited energy and stamina. In other words, I wasn't feeling as good as I thought I did and I didn't realize it until I felt better.

If there are things you'd like to do but can't, I'd say get it sooner rather than later. If you can go jogging or skiing or whatever, I'd wait until you have symptoms. Watch the research, but I don't think I'd be rushing to surgery based on one limited study.

Stokes-Adams attacks

by Tracey_E - 2008-11-07 03:11:09

I had to go look that one up! I saw "attack" and thought heart attack, but it's just fainting for no apparent reason.

It happened to me only twice before the pm, once when I was a kid and once in college. I ended up in the hospital both times for observation, was later told I was fine and neither episode had anything to do with my decision when to get the pm. It was not sudden, both times I knew something was wrong and had time to sit down so I wasn't hurt.

That doesn't do anything to answer your question or help with your decision, just tossing it out there because the report isn't as ominous as I originally thought it was. After first reading it, I thought 1 in 4 CCHB patients had heart attacks out of the blue! I would be in that percentage that had SA attacks and I am fine. :o)

Choices

by SMITTY - 2008-11-07 03:11:24

You do have a problem. But first let me say I don't think suddenly dying because you do not have a pacemaker is likely to happen to you. The heart does not suddenly stop for no reason and a low heart rate is not a reason. I say that because I lived with a low heart rate (50 to 60 range) for forty years and had no symptoms or other problems that I know about.

In 2000 was diagnosed with some short episodes of V-Fib and went in to be evaluated for a defibrillator and came out with a pacemaker. They said I got the pacemaker because of my bradycardia - the same bradycardia I had lived with for 40 years.

I guess my point is leave off the pacemaker until you have symptoms. However,you should be aware that one those symptoms may show up as passing out and the warning may be very short to nonexistent.

You quality of life will change to some degree, but not necessarily worsen. A lot depends on the settings of your pacemaker. You have a low setting and a high setting (mine are or 70 to 120, but the settings vary for the individual). Using my settings as an example if my heat rate drops below 70 my pacemaker comes on line and maintains a minimum setting of 70, however if I get frisky (fat chance of that) and causes my heart rate to go up it will continue to help maintain a steady heart rhythm until the rate reaches 120 then the PM sits on the side line continuing to monitor your heart to see if it needs to help but doing nothing else.

Yes the electromagnetic field (EMF) created by an electric welder can interfere with the operation of a PM, but lets say your pacemaker has a low setting of 50 and your normal heart rate is 60. That means your PM is just waiting for your heart rate to drop below 50 to start helping out which means that if you are welding you will not notice any changes to you PM that are created by the welder.

On the other hand say your PM is hard at work keeping your heart rate at some predetermined rate and you fire up the welder. You will notice any interference of your PM's operation most as irregular heart rate. Turn off the welder or move from the EMF field and your PM will return to normal operation in a minute or two. Most important is the welder will not have harmed your PM.

Of course anyone that is 100% dependant on their PM (not many people are) to stay alive, should avoid being in the presence of an electric welder.

In a nut shell, your quality of life can be adversely affected, but for people that rally need a PM this is not an issue because the benefits far out weigh the minuses. In my case my PM has had zero effect on my life. I do any thing today I was doing before I got the thing years ago without ever thinking about having a PM. Of course I was 71 and not 31 when I got mine.

Will a PM make you feel better? That is hard to say. You say you have a low heart rate, well let me ask you a question. Do you think you may feel better if it were faster, thereby pumping more blood throughout your body. I say make the doctor give you some specific answers on this one. Of course he will be guessing but he should express an opinion and tell you how he arrived at that conclusion.

Last but not least. Again don't worry about your heart suddenly stopping because you don't have a PM unless your doctor tells you that is likely to happen. If it were me I would be opposed to getting a PM based on what you tell us here. But your doctor is the best one to tell you what you need.

Good luck with your physical,

Smitty

If You Have a Choice

by bobad - 2008-11-07 12:11:01


If you have a choice, don't get a pacemaker.

If getting a PM now can improve or extend your health and life, you don't really have a choice, do you?

Pacemakers can slowly degrade heart muscle health. They have learned that lead placement can prevent much of it.

Generally speaking, you can weld with a PM if you're not dependent. There are some rules, such as how close you can get to the welding leads and the maximum amperage you can use. Using MIG (wire feed) is more of a problem than stick. Automotive welding is usually light, so stick welding shouldn't be a problem. Of course ask your doctor and PM technician before you take off and weld something. :)

Best of luck,,,

Bob A.



good decision

by Tracey_E - 2008-11-08 04:11:00

AC, I'm glad you decided to do it sooner rather than later! Kids are an excellent reason to not wait. I suspect you'll be pleasantly surprised at your energy level after. Best wishes for a fast and easy recovery! If you have any questions about the surgery, don't be shy.

Hi,

by Gellia2 - 2008-11-08 09:11:15

I also had congential complete heart block. My heart rate was always slow (around 30-35bpm). Then, at around age 26, it decided to just stop.
I not only went into cardiac arrest, but had a stroke at the same time.
That was 1975! On an emergency basis, I had one of the first pacemakers implanted in our area and then in 1982, the first dual chamber pacer.
I pace the right ventricle 100% of the time and have had no problems with CHF at all. As a matter of fact, I have luckily had NO problems at all barring broken or scarred over wires.
Please consider this. It took me a long time at age 26 to get over the stroke. Having a pacemaker back then was hard enough (it weighed THREE pounds!!).
Having a pacemaker is a heavy decision but it sure is an easy one compared to what I first went through.
Whatever you decide. Best of luck to you.
Gellia
PS. Since I got my little buddy, I haven't missed a thing!

I'm going for it.

by ADC - 2008-11-08 09:11:49

Gellia, thanks for your comments. I have complete heart block, diagnosed at 35. No symptoms. My doc is recommending a pacemaker as there is no reversible cause to be found. He said it is safer to go ahead and do it since I have two small kids. I would rather do the thing before any symptoms like fainting spells while I'm caring for my children or driving them somewhere. If I can prevent an incident like that, then let's go!! I'm scheduled for 11/21.
AC

rates

by Tracey_E - 2008-11-09 05:11:55

The way it was explained to me... when you are born with a block (as opposed to developed it as an adult) and don't have any other physical abnormalities, your heart is generally stronger than the average person's because it's used to getting you by with the slower rate. Our hearts beat harder and more efficiently to compensate for the lack of enough beats.

My understanding is, by definition, if you have a complete block, the ventricle never (or rarely) gets the message to increase your rate with exercise, your rate is more likely to stay steady rather than go up and down. So, yeah, I think either it's unusual or the block isn't 3rd degree. Second degree means the message gets through sometimes but not all the time. How high can you go? I used to be huffing and puffing and thought my heart was racing when it got all the way up to 60! I very rarely could get it over 50 before I got the pm. Now I rarely go under 80, even at rest. You'll probably find that your resting rate is a bit high when you first get the pm.

If you are able to run three miles and march while playing your trombone, I wouldn't be rushing to surgery, but that's just me. It sounds like you're in excellent shape and doing just fine on your own. The study is at least reason to keep an eye on the research and give it some consideration. Gellia's story is a reason to do it now. One thing NOT to do is wait too long like I did. I had symptoms for well over a year before I had the surgery, that was really dumb on my part and (I learned afterward) I risked my life by procrastinating.

Good luck with your decision!

Thank you!

by mgman - 2008-11-09 12:11:00

Thank you all so much for your replies - lots to think about!

To answer a few questions...

My hr is around 44 at rest, and physically I can do anything I like. I used to play football (soccer) at my old workplace, but stopped when I switched jobs. Last checkup my doctor suggested I try exercising more to see how I cope and so I've recently started jogging and currently do around 3miles no problem, feel like I could go further without trouble.

I play bass trombone in a brass band which requires plenty of air and only this morning did a march for remembrance day which involved playing while marching up a pretty steep hill - no problems while others around me were complaining about how much hard work it was.

TraceyE - I also raised eyebrows when I had my first checkup at my current hospital. They put me on a treadmill for an exercise stress test and the nurse couldn't believe how well I did, and how my heart rate responded to exercise, she said she'd never seen that response in a 3rd degree heart block patient before.

Is it unusual for hr to increase under stress for heart block patients as you'd expect in a "normal" patient?


New PM

by hleippe72 - 2009-08-29 09:08:51


My PM is two days old today. Too soon, perhaps, to experience noticeable results. My wife, however, pointed out that I did not get out of breath and weary on our daily walk. And after eating lunch at mid day I did not urgently need my daily nap. After waiting three hours I decided to take a celebratory nap. Heard almost none of my white noise music. Several relatively unknown composers from late Classical through Romantic periods composed excellent white noise. String trios and quartets wok best for me. Now I'll never get to know them. I appreciate all the information flowing from this Pacemaker Club and the many generous contributors.

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