Looking for support group

Hello-

My name is dawnalib. I am 51 and have had a dual chamber pacemaker for two years d/t sick sinus syndrome. I am looking for a support group that invites those who work out and possibly those who have sick sinus syndrome. Any ideas? Thanks!

4 Comments

Check locally

by Theknotguy - 2015-03-03 06:03:23

The only national organization in the US which seemed to have any local activity was Mended Hearts. You'll have to check on their website to see if anyone is local.

After that, check with the hospitals in your area. Some have help groups through their cardio rehab programs.

Also check local gyms and see if they have any support groups.

It seems we're on the leading edge. Used to be people with PM's weren't that active. Now we're doing just about everything people without PM's are doing. Guess gyms haven't caught on yet that heart people can make them money.

Worst case scenario, start your own group.

Hope you can find someone.

here?

by Tracey_E - 2015-03-03 08:03:15

This site is the only place I've found others who are young and active but paced. There are quite a few of us who run, bike, lift weights, Crossfit, etc. I would say off the top of my head that runners take the lead with CF in second place. I know I'm the only person at my gym who is paced. There was another woman for a while, but she quit after the initial 5 week bootcamp, decided it was too much. My doc, who I have seen for the last 20 years, still only has one other active paced patient.

Most hospitals don't have support groups for anyone paced much less active patients because there aren't that many of us. Mended Hearts is good but it's more for people who have had cardiac arrest, bypass, stuff like that.

There is another website for paced athletes but I don't know the name.

Thank You

by dawnali - 2015-03-03 09:03:54

I have looked locally however, what I do find are cardiac rehab post bypass, myocardial infarction, congestive heart failure….. and on. I have considered starting my group. Working out with others who are paced would be great! Such as it is, I'll put it out there. Can't hurt.

I will check mended hearts too.

Thank you!

Sorry Dawn

by IAN MC - 2015-03-04 12:03:50

but I just don't get it !

Like you I have sick sinus syndrome and a dual chamber pacemaker . Why do you think there is any need whatsoever to create a support group in addition to the PM club ?

Is there not a danger that you may be persuading people that they need support when they don't . A PM is an easy fix for SSS ; let us not build it up to be far more than it is !

Ian

You know you're wired when...

You name your daughter “Synchronicity”.

Member Quotes

I wouldn't be here if it were not for this amazing technology inside of me.