Still Out of Breath after 8 weeks

You don't say

by Theknotguy - 2015-08-06 09:08:44

You don't say in your comments if you are on any other medication or if your doctor has prescribed any new medication.

I was put on new medication after getting my PM, then had to add another medication after another problem came up. Both medications hold my heart rate down. It's impossible for me to get my heart rate above 110BPM doing normal exercise. Afib will get my heart rate above 110 but that's a problem.

I was fortunate enough to be able to participate in cardio rehab. During rehab my heart functions were monitored but I was also able to monitor what was going on. There was a gradual improvement as I progressed through the rehab. The most important thing was I was able to learn how to exercise with my PM. I was SOB most of the time at the start, but not by the end.

Questions in my mind are: 1) did you get new medications that would affect your performance? 2) will your medical insurance allow you to go to cardiac rehab? 3) If you can't get cardiac rehab, could you go through a monitored exercise program?

Others have had Rate Response turned on with their PM's. It may be that you need a simple setting change. I'll let some of the more experienced members get into the details of rate response.

Hope you can get some positive changes soon.

Welcome to the PM Club

by SaraTB - 2015-08-06 10:08:14

I have my pacemaker for complete heart block as well, and can sympathise. Some things you need to know first, though!
1. Have you had your follow-up appointment with your doctor yet? When first implanted, PMs are pretty much set to factory defaults, and get fine-tuned to your personal needs at the follow up - and potentially over several later visits.
2. There are so many things that can be tweaked and adjusted in the programming, that it is hard to get it right first time, particularly with active people (I was 42 when I got my first one). So, be patient and be prepared to keep going back for more tweaks.
3. You have to advocate for yourself with your doctor: if it's preventing you from living life the way you want, then keep telling them: make sure you describe exactly what's happening, so they can try out different things.
4. It took about 6 months to get my PM programmed to about where I was happy - but I still get breathless on stairs. It seems the one thing the PM doesn't seem to manage, for me.
5. It's possible you are experiencing something called Wenkebach, which I'm useless at describing, but effectively means you can be left gasping as your try and raise your heartrate: the PM prevents the increase, thinking (if it could think) that something is wrong. I had that, and it was shown by a simple treadmill test. Re-programming again helped enormously.
6. Rate Response isn't generally needed with heart block patients, and can sometimes interfere - I had it turned off, but I didn't notice any difference. It varies from person to person, but it's worth considering.

This is a lot to explore, but do, please, keep pressing the issue with your doctor.

Good luck and welcome!

Give it time

by knb123 - 2015-08-07 01:08:23

Hi and welcome to our group.

At eight weeks post-implant, your body is still getting used to the PM. I was diagnosed with sudden-onset full heart block in March 2015. I'm a little older than you (66) and probably not as fit (though I worked out 3x/week before my diagnosis). Thinking back to 8 weeks post-implant, I was not yet able to do my full routine at the gym. Now, 4+ months post-implant, I am back to my pre-PM regimen.

Sara and theknotguy have given you good advice: there may be other factors at work in your recovery. All that said, I would also encourage you to keep working at it but give it time.

Settings changed

by ChainLeg - 2015-08-09 12:08:41

Hello! Just an update for anyone else reading who may be encountering similar symptoms. In the days following my post my dizziness worsened and after exercise Friday I was borderline conscious. I called the office and came in the same morning. The Medtronic Tech turned on Rate Response with the default settings. They said they were not sure I would see a difference because I am a Level 3 AV block. What an improvement the past few days!
My heartrate increases upon exercise, and I can now gauge how to moderate myself, especially with the help of the fitbitHR. Of course no improvement in the physical conditioning yet but I expect that to follow now that I can move around a bit.
Thanks all for the advice which was correct and empowering. I am an obvious "Type A" so must be reminded to be patient! I am taking it easy.
fyi the Medtronic rep said they don't turn on rate response unless necessary because it consumes more battery in this mode and makes no difference for most people because the PM can fire when it senses the heatrbeat in the other side.
Hoping today is wonderful for you my new friends!

2 year update / full heart block

by ChainLeg - 2017-10-01 10:30:04

This forum was so helphul to me as I started, it's my oblication to pass along an update at 2 years.   I'll never know if the pacemaker or father time are the bigger contributor to declining athletic performance, but that's OK because I am healthy, fully functional, and in better shape than most 59 year olds.  

I requested a treadmill test at 6 months and successfully convinced my MD I deserved a boader heartbeat range.  At 6 months I was still only walking, but was able to walk fast for an hour.   This programming change made a big difference in my progress.  

Here's what works for me:

Daily exercise is far better for me than 3X a week.   I do 30 minutes of cardo plus alternate 30 minutes of ABS or 30 minutes of weights.   13 min miles / 100lbs on 5/15 stronglifts.   Lifting weights in moderation is awesome for my back, my appearance,and my self esteem.

I am eating much cleaner (paleo sort of).  meats, vegetables, fats, dairy.  minmizing bread, sugar, alcohol.  My colesterol and body fat continues falling on this diet, including 2 eggs daily.

Still getting dizzy transitioning to activity (typical stairs / standing), but being more conditioned helps.   I still enjoy the wrist heart monitor because it keeps me burning my calorie goal (3000/day).

I take Losartin 50mg.  Thankful for this community.