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.

 

2 Comments

One lead?

by AgentX86 - 2019-05-05 21:28:24

When you say the "two sides" of your heart, usually the two leads are in your right atrium and ventricle.  Since your atrium lead isn't working, aparently, it's the top (atrium) and bottom (ventricle) that aren't synchronized (not left and right), correct?  Or is it the left and right atrium?  It's hard to visualize what's going on here.  It's important to be as exact as possible..

I'm not here for the same reasons you are (asystoles + Aflutter w/AV node ablation) but I have no atrial lead.  I have two ventricle leads (left and right) but my atria are (less than) useless and beat to their own drummer (or just flutter). My heart works as wel as one can expect.  I'm certainly not an athlete but I can walk 20mi a day and do 8+ miles on a treadmill almost every day. The atrium don't do as much as one would expect.  Sure, you're not going to be an olympic athlete without atrial function but you can live a normal life without AV synchrony (top/bottom).  You may need an upgrade to a CRT pacemaker to make sure the left and right ventricles remain in sync without the atria.

However, if the issue is really left/right, the answer is a CRT pacemaker.  they can then tune the timing for maximum pumping efficiency. Your pulmonary hypertension will reduce your RVEF, which will slow you down, too.  Your blood won't get the oxygen it needs but you don't seem to think yours is very serious?

In any case, your doctors are electrophysiologists, right? I would imagine so, since you're going to UCLA but it is important to call an elecrician, rather than a plumber, when your lights go out.

Unusual case of right heart failure

by marlac - 2019-05-05 21:38:30

Thank you, AgentX86. You are correct, I have one lead in the right venticle and one in the right atrium. 

I just wonder why I still feel so crappy. My pulmonologist doesn't think the pulmonary hyptertension is a major problem, although it does worsen on exertion.

I just don't want them trying to put in a new lead (in an unusual place), if it won't really help.

 

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