Unusual case of right heart failure
Hello everyone. Several doctors, including a couple at UCLA, have told me my case is highly unusual, so bear with me while I explain. In late 2017, I contracted a common virus. For some reason, it attacked my heart (myocarditits) and I went to the ER with bradycardia. The virus disabled the electrical system of my heart, so I had a pacemaker installed. From the onset, one lead, the one in my atrium, has not worked. For the past 18 months, I've struggled with fatigue and shortness of breath. The doctors thought the cause may be that there is no synchrony between the two sides of my heart. So they decided to do an EP test to try to move the lead into a better location. They were shocked to see that there wasn't any spot at all in my right atrium that would pick up a signal. The whole thing was dysfunctional. It appears to be scarring from the virus, but they don't know. I also have minor pulmonary hypertenstion, so the virus seems to have done that, too. My EP is doing more testing to see if there is a location outside of the atrium that would work for a new lead. But he's not sure it would help at all with my symptoms. Have any of you experienced anything like this? I get short of breath whenever I do certain things -- bend over, pick something up like a grocery bag, push a light vacuum. I can do walks of a few miles, but I do get short of breath. I've never been very athletic but now I get fatigued so easily. Before this I could jog (very slowly) for 3 miles without stopping. My only medications are diuretics because fluid builds up from the heart failure. My left ejection fraction is perfectly fine.
I guess what I'm asking is: Do any of you have only one lead that works? Are you short of breath and fatigued? They've tinkered a lot with the PM settings, but wonder if anything would help.