Running with a Pacemaker

A common story

by Czechmate - 2017-04-19 11:42:23

Yes, I have had a similar result.  Cardiologist told me I could do whatever I did before, but now finding out otherwise.  I've given up on running a sub-3 marathon.  However, you can get a lot closer if you keep pressing your health care provider to make adjustments.  Rate response settings are a bit puzzling and I don't like the guess work typically involved in making changes.

IMO, the whole post-op setup is wrong.  If the activity based rate response feature is being used by the patient, then the patient should be placed on a treadmill or given a stress test post-op with the intent on optimizing the pacemaker settings during higher levels of activity.  The "hall walk" format is not sufficient.  I smell an opportunity for someone with the right credentials and setup to cater to athletes with pacemakers post-op.  A small part of the population, but underserved at this point and probably growing.  I also envision equipment that can read the PM from afar so adjustments can be made over land or on a track, which would be even more ideal. 

Just keep talking to the office and being a PITA (pain in the ....) until you feel satisfied. 

Bob

RE: PITA

by gleiz - 2017-04-19 11:58:52

I would love to see a bluetooth feature that could communicate instantaneously as we're running.  I've done the treadmill tests but even those aren't really adequate.  I'm not on the treadmill running a pace I would on a normal run.  My arms are up in an unnatural position, they keep increasing the incline and speed and then it's just that pace for 30 seconds and they move up again.  Let's find a way to monitor it in real-time while running in our normal running environments.  

I love the idea of a study and/or actionable plan to work with pacemaker patients who run!  It's just hard as a patient to go in all the time and let a bunch of people start "tweaking" your settings which to me seem to be based a lot on the opinion of the person making the adjustments.  From appointment to appointment, I'll get someone different who questions why a setting was done the way it was and it's changed and then I"m back to square one.  

Thanks for the advice.  I think another call is in order to my cardiologist.

YES!

by Czechmate - 2017-04-19 12:42:25

I have the same frustrations.  I called my device manufacturer (Boston Sci) and was told only a few clinics exist that cater to more athletic patients.  Named off Cleveland clinic and Mayo.  The tech agreed with me regarding the "hall walk" not being sufficient for some patients, but it remains SOP for the institutions.  I'm sure because it's cheaper.  I was on the phone with the doc's office the other day trying to explain why having my heart running at it's max tracking rate (150 bpm) for all exercise activity is not ideal.  Feels good for 30 minutes, but goes down hill from there because at 150 my heart is racing at threshold.  If I want to go for 1+ hours then that will require some sort of break. The nurse didn't quite get it.  They probably think I'm some running freak, which I am to some extent but come on, this is basic stuff I'm spewing.

Bob  

EPS

by gleiz - 2017-04-19 14:23:18

It's so funny you wrote this because the first time this happened, I saw my FP.  They did an echo and found an infarct which led to a cardiology visit.  After more reviews they had me see an EP to have a REVEAL transmitter placed.  It showed junctional rhythms, a heart rate resting a the upper 30's/low 40's and at times my HR was under 20.  My sister who is a nurse said I was hitting CPR level.  The first EP, even with all of the transmitter info kept teling me I was an athlete and should expect a low HR.  He would talk about how Michael Jordan was generally in the low 40's resting.  Um, I wasn't Michael Jordan.  I was a 36-year-old woman who ran half marathons and was training for a full marathon.  I didn't have the physical stamina of Michael Jordan or the finances either!!  My sister had me get my records and talked to a good friend of hers who is an EP in another state.  The EP looked at my records (not knowing who I was) and said 'whoever this patient is needs a pacemaker.'  At that point, my sister told her who I was and told her my current EP refused to listen.  Even though my dad died at 38 of a heart attack and my mother died of 50 after a series of heart attacks, he told me family history wasn't a precursor to heart problems and I was fine.  My husband insisted on a new EP.

The second EP walked in, looked at my chart and said I needed the pacemaker.  He was the first cardiac doc who listened to me.  I felt instantly better...I wasn't passing out, I wasn't tired and as a friend told me, the life was finally back in my eyes.  She said all my friends were worried because they could see life just draining out of me.  Apparently I looked like crap and no one told me!! LOL!!

I recently moved and my first EP here came in without looking at any of my transferred records and told me I didn't need the pacemaker and I had vasovagal syncope, which had been ruled out by 2 physicians already.  He argued and refused to call my EP from WI.  I insisted on a new doc and this one listens  But, I feel like I"m starting all over again with trying to get my settings in place.  Thankfully my new EP listens, and I'm at a highly-recognized facility with great cardiac care but still, I get the "You're too young to need a pacemaker."  Ma'am....I agree however my body does not.  Let's make this work for someone who is now 38 and doesn't want to give up my self-prescribed mental health treatments of running, biking, kayaking, etc.  

I feel so frustrated though. I moved to enjoy the outdoors more year round and enjoy life.  I came too close to not being here.  My EP who put in the pacemaker said if it wasn't done in a month or so, he'd be reading about me in the paper.  He knew I was in bad shape.  So why the stigma of only old people need pacemakers?  Why do I have to fight to not have my max threshold set at 90.  Yes.  The first time I saw the Pacemaker Clinic, they set my threshold at 90.  Awareness needs to be made that pacemakers are for many, many people.  Young, old and those who want to be athletic, even running.  I've had a doc tell me to give up running...my body just can't handle it anymore.  I don't agree.  I just need an EP and pacemaker clinic to help me get to an ideal spot so I can get back to doing what I need to do...run.  

I get it!

by AuntieMame - 2017-04-19 15:15:46

I'm a RN with years of experience and I get it!

While I'm not an athlete, I can't do 1/4th of what I did prior to becoming symptomatic with straight flutter.  Pacemaker subsequent to 1st deg AV block/sick sinus.

i feel like I'm having to beat these people over the head.  I cannot tolerate a heart rate of 90 just walking to the bathroom!

Update

by Czechmate - 2017-04-19 16:28:27

I literally just got back from the Cardio clinic today.  I was there to get the rate response setting adjusted so I wasn't going full bore at the max tracking rate when running.  Well, found out the device history is still showing VT issues when exercising.  Now they think I have exercise induced RVOT.  Doing a stress test tomorrow to rule out it being something related to the pacemaker.  Then it's more than likely an ablation procedure because I will not take beta blockers to mask the problem.  I'm glad they are getting to the real bottom of things.  I'm just a bit snippy because I just want my old self back. 

RE: Update

by gleiz - 2017-04-19 16:34:08

Wow Czechmate - I sure hope they get this figured out!!  It is so frustrating.  It's hard enough being an athlete of any sort but when you have a medical condition that continually fights your body, it's even tougher.

I agree on the meds though.  Beta blockers scare me.  I have episodes of A-fib and every once in a while they talk meds and I'm refusing at this time.  I'll take my aspirin and do that as long as I can.  The last thing I want is medications where I"m giong to have to take other meds to counteract the side effects of the initial meds.  

I hope everything goes well tomorrow and they can get to a solution for you!  Keep us informed!

RE: Robin1

by gleiz - 2017-04-19 17:15:48

Robin - I hope she does push to see someone else.  What I had was the extreme tiredness and I'd be fine and then suddenly it was as if all energy was gone.  I'd almost pass out and sometimes I did pass out.  It's scary.  If a cardiologist would even just have her wear a Holter monitor or something, that might help give some sort of indication how her heart is doing.  It's non-invasive and worth it.  She has to be her own advocate because some physicians will not listen.  For every great one, there's one that refuses to acknowledge what a patient knows.  If she ever wants to reach out privately, I think there may be a way to message through this website.  

Best of luck and I'll be saying prayers for you and your daughter!