Pacemaker heart block

You need a pacemaker

by Kaaawakiwi - 2018-06-08 04:19:07

Hello. I’m 42 and got a pacemaker implanted 3 weeks ago. I’m still adjusting to life with it. I also have complete heart block. My right atrium is not even conducting. Currently I’m pacing 89% right atrium and 56% right ventricle. I still have a faint intrinsic beat here and there from the atrium and I now have about 20,000 PVCs a day since implant but I’m tolerating them ok.

I’m the opposite of your scenario. I usually feel fine exercising and can get my rate to about 150. I feel like crap at rest. Now with the pacemaker, it’s set to 60 BPM and it’s helped me a lot. It’s about quality of life for what time we have here. Prior to implant I’d be in junctional rhythms 30% of the time. Because I’m fit and my heart is strong, I was tolerating 35-40 BPM although weakened. I suspect sooner rather than later things will change. 

In my opinion, if your quality of life is affected adversely and you have complete heart block, you need a pacemaker. With complete heart block there’s always the risk of asystole. This is my opinion though. Feel free to PM me. I’m new to this club and I’m just looking to learn and get to know folks in similar shoes. Good luck.

been there, done that

by Tracey_E - 2018-06-08 10:23:50

Waiting because of age is one of my HUGE pet peeves. If we need it, we need it, age has nothing to do with it. If we can't do what we want to do, why suffer needlessly when there's a fix? My doctor felt that way too. In hindsight, I would have benefited from it in my late teens, for sure early 20's. I spent the last two years before I got it (age 27) barely getting by, thinking I had to tough it out and wait as long as possible. I slept away two years of my life when I could have been feeling good all that time. Once I got it and felt good again, I was resentful that we waited so long. 

Not passing out is not a reason not to get it. Once you are passing out, you can get seriously hurt. We've had members pass out while driving or on the stairs, then had to deal with recovering from those injuries as well as pacer surgery. When you are dizzy, that's your body telling you that you aren't getting enough oxygen. Even when you can't feel it, your organs are being affected. It's hard on the body when our rate doesn't go up as needed. It's hard on the heart when the atria is pumping the blood but the ventricles aren't keeping up. Your rate at night is less than half of what it should be, that means your heart is working twice as hard as it needs to be and your organs are getting half the oxygen they need. When we are younger, the body can compensate for that, but it's still not good for us. 

Staying fit is one of the best things we can do for ourselves. Our electrical systems are already wonky, we need to keep the heart muscle strong. Me, I would do whatever it takes to maintain my ability to exercise. 

I would suggest a second opinion. If your current doctor is a cardiologist, find an electrophysiologist (cardiologist that specializes in electrical issues). You'll want a board certified ep to do the surgery anyway so find a good one now. I also prefer having one that is active. Couch potatoes look at life differently and have different priorities than people who like to get out there and be active. 

I've been paced since 1994. My heart function hasn't dropped, that's one of the risks of being paced long term. My doc said that if it doesn't happen in the first 5 years, he almost never sees it happen later.  I'm in the best shape of my life, there's nothing I want to do that I cannot. Most of us get the pacer, heal, and get on with our lives. I used to go in every 3 months for a pacer check but now I have a box under my bed that does it automatically so I only go in once a year. I've had this one 2 years and it still shows 10+ years of battery left so unless something comes up, it'll inconvenience me one day a year for the next ten years. The other 364 days I live my life and don't worry about it.

It sounds like you have a great attitude and are doing your homework to make the best decision for you, now you just need to find a doctor on the same page. If you have questions, don't be shy. 

working out

by Tracey_E - 2018-06-08 10:25:22

For now, don't push so hard that you are very dizzy working out! Stop before you get to that point. It's really, really hard on the body to push when your rate isn't going up. 

Age

by AgentX86 - 2018-06-09 00:07:10

Doctors don't like to do anything that they know they'll have to do again within the patient's lifetime.  Often there isn't a choice but there is usually an alternative, to at least try, before committing to something that isn't reversable.  My EP tried a lot of things before it became clear that there was longer any choice.

2nd opinion

by Gotrhythm - 2018-06-09 15:45:53

One thing that seven years of dealing with a pacemaker and associated heart issues has taught me is that if I don't feel like a doctor is really listening to me or addressing my concerns about my quality of life, I need to go to a different doctor.

Even if you have to travel, you need to find a board certified EP, a relatively young active one, who can give you a second opinion. You want some help looking at the pros and cons of getting a pacemaker now vs. waiting until you are more symptomatic---meaning feel worse and worse, doing less and less.

Oh and by the way, you don't "only" have symptoms when working out. A heart rate of 30 when sleeping is a symptom.

Robin1!

by NiceNiecey - 2018-06-10 02:07:24

Robin, thank you for sharing that story with us.  Heartbreaking!

Big June, don't wait.  If your heart is beating that slowly in your sleep and you're dizzy some of the time, you're playing with fire.  

I still don't know how anyone functions that has complete heart block without a PM but it doesn't matter.  You are functioning - for now!  Eventually you'll have to get a PM.  Believe me, once you get it, you'll look back and think, "I guess I was having symptoms; I just didn't realize it."  Trust me on that; it happened to me, too.  

Go for your second opinion but do it quickly.  In the meantime, avoid driving.  I know that's hard but you are really risking it if you continue to drive.  I've read too many horror stories.

Please let us know how you make out.  A number of people in their 20s have joined of late so you're in good company.

Niecy

2nd opinion

by Bigjune1990 - 2018-06-14 10:09:16

I wanna thank everyone for commenting it definitely helped I go for my second opinion on the 27th of this month so hopefully I have more answers then 

I feel your pain!

by sarahm - 2018-06-14 21:25:10

Hi Alain,

My cardiologist felt the same, I was 21 when my PM was implanted and he was really reluctant to do it. I have an active job and I was suffering. I never passed out either, but my quality of life was deteriorating. While becoming part robot before you're 30 isn't ideal, life is for living right? The second opinion seems like a great idea and I think if you put it to the new doctor that there are things you're missing out on because of your condition, they will agree it's time for the op. 

(I also want to let you know that I have felt like a new person since my implant. My surgeon came to visit me a few hours after surgery and he noticed immediately - I had colour in my face! My hands were warm! I have energy I have never had and a new lease on life)

Good luck and let us know how you go! Best wishes for your second opinion :) 

ditto

by dwelch - 2018-06-21 03:17:56

I have complete congenital heart block.  basically heart block from birth/the beginning of time for me.  at the time pacers were not as common but rapdily becoming so.  the doc did hold off for years actually but got my first one when I was 19.  I am on number five.  Was very active and was told pre-teen I couldnt do all the activities I was doing, had to quit soccer, etc.  Later as a teen didnt care did activities that coulda/shoulda killed me.  Just lucky I guess.  LIke TraceyE this too young thing is bogus, they put pacers in infants right after birth they can put one in you at any age if you need it.  To be brutally honest now you know what you know, I would not be comfortable until they put that pacer in, you are able to induce symptoms.  They have found you have complete heart block or so they have told you.

I am late to the game in responding to your post, but seeing your later post you have an appointment next week, I would take it easy between now and then.  

Above all else find a doc you trust, and then go with what that doc tells you.  If you dont trust the doc, find another.  In your case have them weight the pros and cons of now vs later, it is most likely going to include the well you can wait but you cant workout anymore...just sit on the couch for a few years and watch tv instead.

When you are faced with spending most of your life with a pacer, first off it is is no big deal, this think makes us normal not broken.  You will likely be the doctors youngest patient.  Im 50 years old now, that is still the case, am one of or the youngest...The docs will attempt unless you intervene to try to "extend the life or the battery"  they want to make each pacer run longer and reduce the number of surgeries over your life.  We can all understand that there is a risk with surgery, but we are talking about maybe one extra surgery, at the cost of well we are going to turn this down or that down, you may not be able to exercise or do this sport like you want to.  Tell them no I want to do this sport I want you to crank it up, it is my quality of life and my rolling of the dice on that one extra surgery over my life...

You, me, TraceyE, a lifetime of pacers, we are not our doctors typical patients.  Eventually you know more than the techs, the nurses, etc about these things (hopefully not the docs, although I know I know more about the electronics than she does).  I didnt stay in town long enough to retire my first doctor, but he has retired.  If I stay here and am able to keep this doctor, she will retire too and will have to find another.  We are somewhat special patients to them because of our gained experience over time our questions are not the typical questions, we asked those years ago.  This doc said she literally spent all weekend going through the many thousands of heart beats from a holter because I never have complained about anything but with this latest device I had issues...And she found it, a few heart beats in the whole recording.  We dealt with the vendor, got some setting changed and fixed it...I assume had I been a first timer it may have taken more complaining and more tests.

So welcome to pacemakerclub, and welcome to the subset of us that started young and will have many devices over our lifetime.  

My resting rate was 44, sleeping rate in the 30s.  Very very active despite being told not to.  In hindsight I was at risk IMO and they should have put that device in a handful of years earlier, I was going to do those activities anyway and had something happened naturally my folks would have been devistated.  That first doc had/has a son right at my age and I could feel that every visit he had that parental vibe as well, he would have been devistated.  Pacers were not as common then they were just becoming so, today they pass these things out left and right. 

Find a doc you trust, find a doc that will shoot you straight as to what your risks are right now pre-pacer.  These are my activities, I plan to keep doing them, I want to do them post-pacer and for the foreseeable future, how does that affect our decision on if and when I need a device and what kind of device or features of that device, placement of the device, etc?  Dont hold back any punches, be the patient they dont hesitate to lay out all out on the table, dont be the patient the sugar coat it and tell you half the story.  You may be relying on this doc until he/she retires.  Get the whole story from day one.

Oh, BTW have the doc show you the EKG and how they know it is a heart block. "A normal EKG looks like this, but yours see this little thing is moving around not in the same place every time"  If/when you get a pacer that gets fixed and doesnt move around anymore.