life

Depends on your EP doc

by crustyg - 2020-09-17 09:55:21

There are lots of contributors here who will attest that the more you demonstrate an interest in, and knowledge of, your PM, heart operation and disease process, the more that they will tell you, and engage with you in a shared decision making process.

Of course, lots of folk aren't that bothered - and usually don't find, or contribute to this site.

CHB - should be fixed by a well set up dual chamber PM.  Top lead senses the activations of your SA-node (which should respond correctly to fear/excitement/athletic activity) and bypass the CHB and stimulate your RV (or better, bundle of His) and you're back to normal.

Live life to the full: PM or not no-one knows what the future holds, and a PM for CHB is no blocker to packing as much in as you can.

live your life to the fullest

by Tracey_E - 2020-09-17 11:44:30

I have congenital heart block. I'm 53, been paced 26 years so I guess you could say I'm "later in life" lol. I have never once had a doctor tell me this is going to shorten my life. When I asked, they said my problem is fixed, do what I want. There has never once been anything I wanted to do that the pacer held me back. Last week after my annual echo and a stress test, my ep said I have the heart of an 18 year old. I do Crossfit, hike, ski, kayak. I'm planning my oldest daughter's wedding and we train together for races. My youngest graduated college this summer and we spent last week hiking Yellowstone to celebrate since there was no fanfare with the pandemic. Both kids were born after I got my first pacer. I fully plan to be around for - and keep up with- grandkids. 

There are downsides and risks to being paced, though they are extremely minimal and very much outweighed by the benefits of having the heart in sync. Balancing that out, however, we are well monitored, technology advances at lightening speed, and we are typically more aware of our heart health as cardiac patients. This gives us an edge. If something does go wrong, we are going to be right on top of it. There are meds and more advanced pacemakers (CRT) to treat. 

It's good to have a discussion about long term risks with your doctor. For me, once I understand I can accept. I always assumed my biggest risk would be loss of function but my ep (who specializes in adult congenital so sees lots of younger patients who are paced for a lifetime) said that if function is solid after the first 5 years, he rarely sees it drop after that. He says my biggest hurdle will be when my current leads go because they've been in so long getting them out is going to be tricky. He's alrady told me all about what that surgery will be like and who he plans to refer me to to do it. He specializes in it himself but has a colleague with more experience with high risk cases. I'm hoping to put that off as long as possible, but I know exactly what to expect when the time comes so I'm good with it. I see it as one little bump in a lot of years of good health. 

My husband is perfectly healthy. He's also 100 lbs overweight, rarely goes to the doctor, doesn't exercise, eats like an unsupervised 10 year old.  I exercise, have active hobbies, eat well, but pace every beat.  Who is the higher risk? 

Life is what you make it. Don't let the pacer, or fear, keep you from doing what you want to do. Stress and poor lifestyle choices will kill us a lot younger than heart block. Be happy, live your life to the fullest. JMHO

Fixing the problem

by AgentX86 - 2020-09-17 11:48:01

A lot depends on the reasons that you're being told that you need a pacemaker. You tell us nothing about your (heart) health.

That said, if the issue is heart block you'll need a replacement once every ten years, give or take, and you can live your life. If the problem is sinus node dysfunction you will probably need several adjustments to it for optimal performance.  More if you're athletic, less if you're a couch potato, in addition to the above. If this is your problem and you're athletic, discuss this with your EP now,before implant. It might make a difference in the model used. Once it's in there's no going back for another ten years.

The impact on your life, just from the pacemaker, is trivial. You may have something else going on that you haven't told us about.

Living your life

by Theknotguy - 2020-09-17 15:14:58

Abraham Lincoln said people were as happy as they made up their minds to be.  And I feel he was pretty accurate in his statement.  

Same for us with our pacemakers.  We can live as full of a life as we want.  It's just what we make up our minds to do.  If you feel you are limited, then you'll be limited.  If you feel you want to do something, you should be able to go ahead and do it.  You might have to go about it differently but usually there isn't a hold back just because of the pacemaker.  

About the only thing you can't do in the United States is get a commercial pilots license.  There may be some other things along those lines too, but I'm not sure what they are.  You can get a private pilot's license but you have to jump through a lot of hoops and meet a lot of requirements.  I think it's funny because we have all these pilots who are on the verge of a heart attack or some other problem and they're allowed to fly but after you get a pacemaker they think you're going to drop dead in an instant.  Oh well.....

Most of my limitations aren't because of the pacemaker.  My limitations have more to do with having my ribs broken.  I can't lift and twist like I used to as the ribs start hurting right away.  I've also run into some problems walking and carrying heavy weights - mainly because my pacemaker doesn't bump up my heart rate when I'm carrying stuff.  So I've compensated by using carts to move stuff.  Still get the job done - just in a different way.  

So, as soon as you scar heals, start looking around for stuff you want to do.  
 

Remember

by ROBO Pop - 2020-09-18 15:47:53

Remember, you really aren't living if all you do is worry about dying...your choice.

As for me I'm squeezing out every minute before my wife finally succeeds in smothering me with a pillow...

heart block

by dwelch - 2020-09-19 23:31:12

You me and tracey_e have heart block.  The device doesnt "fix" it in the sense of repair the human parts.  It fixes in the sense that it electrically bypasses the block.  It makes our hearts work right so that they can be normal sized and work efficiently and have a nice normal life.

We often start young but not always.  I have had pacers for 33 years and my first pacer at 19.  the pacer itself isnt going to fix heart block from a human organ perspective.  it is always possible that some scientist may figure out how to repair the organ somehow that doesnt require a device to complete the connection.

As pointed out by others the devices dont last forever so every 10 years on average hopefully for the pacer itself and the leads hopefully a very long time each, my oldest active lead is 33 years I have a 26 year old lead and a few year old lead.  And a broken lead all on the same side which is not normal to have room for four.

Depending on lead placement and perhaps other factors, which the knowledge has improved over the decades, you might be in my situation where after being paced for decades from a single ventrical lead (with heart block just assume the ventrical leads are used 100% of the time, doesnt mean "dependent" necessarily but it just means with complete block almost every beat needs to be fixed by the pacer, very easy to see on an ekg), it messes with the heart (muscle I assume) and you may need to switch to a biventrical so that each ventrical can be paced separately and the timing is not determined only from one side.  You may never need this.  They may instead have better tech and replace your single v lead or its placement, etc in the future.

I still have the other side of my body to host a pacer and leads to get some number more decades of pacing.  I may have exceeded the average life on my leads than some others, but they dont have a timer that goes off and they fail.  Regular interrogations check the leads, be they 4 months old or 400 months old, to see if there is a problem.

So.....

The pacemaker does not fix your human organ, it does not cause it to repair itself.  It instead replaces the broken electrical connection (heart block) with electronics.  You still have heart block, and likely always will. 

Life with complete heart block specifically and a pacemaker is very very close to life with a normal heart. Other than the scar nobody can tell you apart from a person with a normal heart.  You have a part of your body that hurts more when bumped than a normal person and a few other things that you know to be different but dont really interfere with life in general. 

Tracey_E 26 years, me 33 years, there is at least one other member at 40+ years with devices.  We are not special, just happen to post here from time to time there are countless others like us.   

I still have a clean right side of my body to get another some number of decades of devices if my left side cant take any more. 

You just started your journey with 30 years more science than when I started, your leads are more efficient than mine, better tech with the materials and manufacturing, your first device is tiny compared to my first device, a ton more features, the placement and routing of your leads is better than mine.  They didnt know what caused heart block when I started, and removal of leads was not a thing.  Both are a thing now.  You are already starting off better than those of us that have been at this for a while. 

Early or earlier internet when you looked for heart block or complete congenital heart block meaning from birth as I have, the life expectancy was not much past teenage years.  Now if you look it up you, well I, can no longer find that chart I saw before.  Now all you see is that cchb is aint no thing as pacers can go in at any time from shortly after birth on into adulthood.  The survivability is completely different story now.

I cant imagine any heart condition that a pacemaker fixes the human organ or specific problem, it just manages or bypasses the problem. Depending on the heart condition you have being managed by a pacemaker life and life expectancy will vary.  If you have to have a heart condition, heart block is the one or one of the ones you want because it is trivial to fix, for life, with todays tech even if the tech doesnt improve in the future.  Not the same can be said for other heart conditions managed by a pacemaker.  Some reduce the risk rather than fix the problem.

Just starting on the same journey

by Ironman5000 - 2020-09-20 05:19:36

I've just had a pacemaker implanted for a week for 2nd degree heart block. Amazing technology and the fact that I can be remote monitored is impressive. So far so good for me am amazed at the initial changes - better sleep and warm hands. Hopefully will soon get back to exercising. My granddad had one and lived into his 90's so agree with the other posters that although it doesn't cure the condition it offers a fix for most if not all?