looking for second opinion

I have junctional tach and now AV block so my RV is being paced more and more of the time. It makes me nauseous and by the end of the day, exhausted. Do others experience this? Prior to my PM 3 years ago I was a triathlete, very athletic. Now I feel hobbled. Quality of life has dramatically decreased. Sleeping 10 hrs at night, trying to find tolerable exercise. Considered His bundle pacing and a new PM sensor but my doc recently suggested a second opinion. I need help as to where to go. Where in US is the mecca where they may see athletes or do a lot of research? Suggestions greatly appreciated. I need my life back!!

3 Comments

katie

by IAN MC - 2015-11-01 01:11:52

My comments are not at all helpful to you and I hope that they don't make you even more fed up.

I am now an ex-marathon runner ! Since having a PM fitted 5 years ago I have found any real distance running to be difficult ,

I see from your previous posts that , like me, you have Sick Sinus Syndrome among other things, and are chronotropically incompetent and have an accelerometer sensor in your PM.

I regrettably have reached the conclusion that all the athletes who carry on with endurance events just as before are those who don't need rate response. I will be delighted and encouraged if anybody says otherwise.

I am now as you say doing lots of "tolerable exercise" which stops me from going insane ( 'Too late " some would say ). Life ain't bad but real distance running is a no-no and I don't half miss it.

At the next PM change I will try a dual sensor PM which hopefully will be a little nearer to having a normally functioning sinus node. If you try a different sensor I'd be interested to know if it improves things and I do hope that you get a second opinion from someone who understands people who exercise.

Best of luck

Ian

exercise

by Tracey_E - 2015-11-01 05:11:41

Pacing should not make you tired, sounds like something else is going on. All the pacer is doing is adding beats when your heart doesn't do it on its own.

There are many athletes with pacers. Some have reduced stamina, others do just fine and compete at the level they did before. Getting another opinion from someone with other athletic patients is a great idea. Cleveland Clinic and Mayo are the first that come to mind.

AV block is actually an easy fix and shouldn't affect your stamina. The atria beats, the ventricles don't keep up, the pacer kicks in with ventricular pacing. Junctional is always tricky. Are you on meds for it? The meds will affect your stamina more than the pacer. And the last challenge, SSS, the pacer has to predict how fast your heart should be beating on exertion. Some are better at this than others, and they have a lot of variable settings so it can take some work to get the right balance for you.

I, too, have several things going on and my doc and pacer rep were stumped at one point a few years ago so they ended up sending my files to SJM to have their engineers review. They made me a case study and a week later sent recommended settings. I'm not 100% but it's way better than before. We are both lucky in that our doctors are willing to admit they don't have all the answers and to think outside the box to get those answers. Good luck!!

Cardiac Athletes

by BillH - 2015-11-08 04:11:24

Mayo and the Cleveland Clinic both have programs specifically for athletes with cardiac issues.

But a lot can be done by a "good" PM rep. One that has worked with activity people. Some have been know to work with a patient with them doing any exercise on a bike or treadmill and then looking at the results and making adjustments.

You can start by asking your EP to see if he can find a Rep that has experience working with athletes.

And you might want to join us as Cardiac Athletes. It is a group of people with all kinds of cardiac issues who still want to be active.

http://www.cardiacathletes.com/

https://www.facebook.com/groups/478037275561838/

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