Worse After PM Than Before

I am writing this on behalf of my fiancé. He had a demand CRT-D device implanted on August 4, 2014. 50 years old, 3 time Ironman triathlete, 154 marathons completed. Diagnosed with non-ischemic cardiomyopathy in 2011.

He felt terrific the first 3 weeks after the device was implanted and then slowly started to detoriate. Shortness of breath, difficulty exercising on some days, and now a fluid build up (essentially congestive heart failure) that was not present prior to the device's implantation. He is able to cycle at an easy pace for about an hour at a time, though with some shortness of breath, but has not been able to run at all as he cannot get his breath under control.

So far, he hasn't gotten any answers from his cardiologist or EP as to why there has been a change in his condition. The pm has been interrogated several times, with all the results and percentages the device techs would like to see. As a result, he is thinking about getting a second opinion at the Cleveland Clinic. Does anyone have any recommendations on a sports cardiologist and EP that may be able to assist him?

He would really love to get back to the physical level he was at prior to diagnosis, even if it means that he could only just get back to the first three weeks with his device. It's almost to the point that his overall quality of life is now affected by the new pm and its inability to help him.

Has anyone had a similar experience? If so, do you have any advice?

2 Comments

second opinion

by Tracey_E - 2015-01-11 05:01:13

It can never hurt to get a second opinion. Sometimes fresh eyes see something new.

The pm is a help but not a cure for myopathy. I'm no expert but it sounds like his condition has continued progress. It's easy to blame the pm, but the pm won't cause the problems he's having. All it can do is send the signal to beat and try to force the ventricles to stay in sync, but it's up to the heart to respond and contract.

What medications is he on? I'm assuming they have him on beta blockers and probably others. I find it very hard to run on beta blockers because they keep the rate down and make the heart not beat as hard.

Cleveland Clinic EP

by WillieG - 2015-01-11 07:01:30

Hi! I went to the Cleveland Clinic for a 2nd opinion last August for exercise induced 2nd degree heart block. The EP that I saw was Dr. Bryan Baranowski. Phone is 216-445-0409. He was most pleasant. Their device clinic changed my settings from where I was pacing 69% ventricular to zero. Yet, when I did experience a block while biking uphill, the pacemaker didn't seem to anything. I had a great deal of oversensing and lots of ATR (atrial tachy responses) with mode switches. I did not return there so I don't know if they would have been better to work with than my original EP. Now my PM is practically turned off and I hope to have it all turned off at my next appointment.

Good luck in solving your problem. I would be interested in knowing which doctor you do end up seeing and if they help.

Wilma

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