Exercising when 100 % dependent on pacemaker?

discussion to have with your doctor.

by Tracey_E - 2017-11-02 15:55:38

Talk to your doctor and see if there is any reason you should not exercise hard, and confirm that it is, in fact, pvc's. If we are otherwise healthy, most doctors do not consider pacing to be a reason not to exert.

PVC's are generally considered annoying but harmless. If they bug you, sometimes they can try medication to calm it but they have side effects you may dislike more than the pvc's. I found it hard to work out on them because it kept my rate so low. 

I pace every beat also, have since 1994. I'm 51 btw. All the pacer does is send a small signal that mimics what our hearts would be doing on their own if there was no av block. The heart responds to the signal by contracting, so that part is all us. We are going to pace every beat whether we are exercising or not, so I don't hold back. I hike, bike, ski, kayak, run for fun, plus daily Crossfit. My doctor has always encouraged me to stay active, being fit is the best thig we can do for ourselves. Our electrical systems are wonky, we need to try to keep the muscles strong and the arteries clear so we don't end up with new problems. 

Have you had a stress test lately? My doc does one every couple of years just to make sure all my other numbers look good when I push it- O2 sat, bp, that the heart rate is nice and regular. So far, so good. I was still chatting with the staff as I stayed at the max rate they wanted to see for however many minutes they wanted to watch, and an echo showed my function is the same as it's always been, so I have no restrictions. 

Are you congenital? I switched to a congenital specialist last year, loved the idea that he has a whole practice of patients like me instead of one or two. My old doc never discussed long term prognisis, only current condition. Sometimes function can drop over time so that's always been in the back of my mind. The new guy also talked about the future. He said if we can pace 5-7 years without losing function, odds are that our function will continue to be good and he considers that a very low risk for me. 

Comment to Tracey

by LJRytel - 2017-11-02 16:46:12

Thank you Tracey for the feedback! My doctors are pretty laid back and have not recommended a stress test or echo recently. I may ask about a stress test. Although my exercise tolerance playing tennis, lifting weights, running, biking is good. 

My last echo ( 2 years ago) did show a drop in function to 50 to 55 % from 60 to 65 %. I do not know my biological father so not sure if this is congenital? Hopefully, my function stays steady! I have not received a long term prognosis. 

Nice to hear from someone else in a similar situation!

more comments

by Tracey_E - 2017-11-02 17:40:42

There are quite a few of us here 40-60 who have been paced long term for av block and are thriving. It's nice to know there are others, huh? I never met anyone else like me until I found this place.  

A drop in EF should always be watched, but your number is still really good and it's not slowing you down so I wouldn't worry. But I would want a follow up echo every year or two to keep an eye on it. If it keeps dropping, there are medications that can take the stress off the heart. If it gets low enough to affect your stamina, they can add a 3rd lead, which forces the left and right ventricles to stay in sync and can bring up EF. But you are a long way from that, if ever! Just letting you know it's not anything to lose sleep over, it can be treated. 

Congenital means we were born with it rather than developed it later. Probably not inherited/genetic. The only genetic link they've found is moms with Lupus carry antibodies that cause kids to be born with it. My mom does not have Lupus so mine is random, which is most common.

If you look on the Adult Congenital Heart Association website, they have list of clinics with specialized staff and that share their research. I originally only went for a consultation. I love my old doc and his practice, was his patient for 20 years, but I wanted to see what the specialist had to say. He blew me away, so I made the switch.  New guy does annual echo (for function), holter (to fine tunes the settings), xray (to look for early fractures in the leads). The old doc did stress test and echo as needed, nothing regularly, which is part of why I moved. Yes, things are going great, but I'm past 50 now, I have paced every beat for 20+ years, so I'd like to be keeping a little closer eye on things. Every year he told me I'm healthy, see ya in a year. Yah, I know that, lol, I want to know what to do to stay healthy, if things are changing I want to be alerted early, I wanted to know what my long term risks are. 
 

Tracey Comment

by LJRytel - 2017-11-03 09:54:53

Wow, the congenital specialist sounds great!  Although he has a good reputation, my EP doctor spends most of his time in surgery. I have only met with him twice in 7 years. It has been EP nurses twice a year for a device check. I did request to meet with him recently to talk about turning off a certain testing feature that was bothering me. 

The holter monitor to fine tune the settings sounds like a great idea. I had a few experiences with the EP nurse turining on the rate response for 6 months when it was not needed and not knowing my particular pacemaker had a ventricular management feature. 

As I get older it would be nice to have a little more special attention that would help my peace of mind and quality of life.