My AV Block

  I did a lot of posting yesterday regarding concerns related to my Pacemaker and LV remodeling. 

  I was on a family vacation just after my Pacemaker was implanted and I deliberately didn't think about the situation much until the vacation and holidays were over. 

  Today, I realize LV modeling isn't my first concern. I was diagnosed with RBBB in 2010 during a routine stress test and because I had a history of pulmonary Sarcadosis in my early 30's that spontaneously disappeared 12 months later, the physicians were concerned and did a cardiac MRI. It ended up being negative for Sarcoid.

  In 2013, in a follow up stress test, the RBBB had gotten more pronounced, so the doctors suggested another Cardiac MRI. It was also negative for Sarcoid so we all moved forward unconcerned.

 I now have a 2nd/3rd degree AV block that was diagnosed when my Pacemaker was implanted on 2/2/2019. After my admission to the hospital on 11/30, the doctors (all of them) repeatedly asked about my Sarcoid history. When I had it, how it was diagnosed etc. Naturally, they want to do another Cardiac MRI in a month, or so and I am glad. 

 The obvious question I have is why, when I have actually maintained a pretty good diet, exercised consistently since college and have relatively low stress, I keep having these electronic issues? It seems like an undeniable pattern now. 

  I was told the RBBB was benign for most of the last 9 years and I thought swimming 1-2 miles a day 4 to 5 days a week would keep me healthy. I am 63; yet people guess me in my late 40's to early 50's. The point is everything is heathy except my damn conduction system. 

  The pulmonary Sarcadosis is long gone. My physicians 4 weeks ago said the CT scan looked great. My heart echo was good with an LVEF of 65%. Still, I ended up with a Pacemaker when just the week before I swam 1/12 miles 3 days in a row.

  At this point, I suppose my main concern is active Cardiac Sarcadosis and I will he tested for that. I am also going to Mayo for a second opinion.

  My primary doctor says he doubts it's heart disease because I tolerate exercise so well and it wasted congenial so what's the deal I ask? I am otherwise really healthy.

  Two years ago, I was diagnosed with pulmonary Emboli in both lungs. I had been traveling a great deal by plane and by car. The condition persisted for 3 months before it was diagnosed because I thought it was allergy related, so for 3 months I went on trying to swim, like a goof, with blood clots in both of my lungs. I finally got a CT scan after I virtually gave up on swimming and that's when they found the clots. They are resolved now.

  So, I believe the central issue relates to why this AV block just appeared out of nowhere. a. Do I have active Cardiac Sarcoid even though the Pulminary Sacoid resolved long ago?  b. did the Sarcoid effect my electronic system in my 30's and now things are deteriorating because of that? c. could trying to exercise with undiagnosed Pulmonary Emboli for 3 months have caused an AV failure? d. Do I have an AV block for a different reason?

  In closing, I feel better after the PM's implantation than I have in at least 2 1/2 years. I actually feel great rn and I would love to believe the PM will resolve everything and this situation will not progress. This doesn't seem completely realistic though. I am an optimistic by nature; yet not a fool. If anyone has any insight, perspective, or opinions I would love to hear them. I have been very impressed by the people I have communicated with on this site thusfar. 


 

 

 


   

6 Comments

Why do you care why?

by AgentX86 - 2019-12-30 21:35:20

It really doesn't matter how you got here.  You're here.  Now, where do you want to go?  Wallow in the past, or feel great and move on with your life?  Really!  It doesn't matter, except perhaps to your offspring.  Then the question becomes "is it hereditary?".  Any heart disease in the immediate family is worth your children's attention as they age but beyond that, it really doesn't matter.  You'll make yourself nuts worring about the past.  You can't do anything about it.

Why do I care why?

by Johnny63 - 2019-12-30 23:44:59

  Besides its relevance to my children, if I have Cardiac Sarcadosis I will need additional treatment and the outlook is rather unfavorable.    If I do not have Cardiac Sarcadosis and I do not have underlying coronary disease the outlook with my new PM is great as you have indicated.

  I clearly need to understand the situation so I can make plans, prepare others etc. I will have answers over the next few months.

Thanks for your time and concern. 👍
 

Sarcadosis

by AgentX86 - 2019-12-30 23:55:11

But even with sarcadosis, who cares why you got it. If they find it again, treat it.  Done.  There is no reason to ask "Why me?" or "What did I do wrong?".  It's a fruitless exercise that will only make you crazy. If you do have coronary disease, ok, deal with it but the "why" is irrelevant as is "why did I have electrical problems and need a pacemaker?".  You do.  Deal with it and get on with life.  Wallowing in the past isn't going to get you anywere but if it makes you feel better (it won't).

Sarcadosis

by Johnny63 - 2019-12-31 00:07:53

  I posted my history to see if anyone had insight into the specifics of my situation. I tend to be an optimist; yet I need to evaluate the possibilities seriously; because I lot of ppl depend on me.

  Advanced Cardiac Sarcadosis presents in 3 main ways, one of them is an inexplicable AV block, another is just sudden death. I do not recall the third.  It does not respond well to treatment. So, if I have it my days maybe numbered and I will need to proceed accordingly and if I don't, I might life many more years. I feel great rn; yet I am not going to put my head in the sand. 
  I am not wallowing in anything, just assessing the situation so I know how to proceed. Thanks for your concern. 

A better answer pasted from Google

by Johnny63 - 2019-12-31 00:23:54

Cardiac sarcoidosis is a major cause of death in patients with systemic sarcoidosis. ... Atrioventricular (AV) block is one of the common manifestations of cardiac sarcoidosis. Other presentations of cardiacinvolvement include congestive heart failure, ventricular arrhythmias, and sudden cardiac death. 

Many questions.

by Graham M - 2019-12-31 15:13:11

Keep asking questions - it's the best way of gathering information.  Unfortunately, most of us in PMC aren't medically qualified, so can't always answer them, but we can share our experience and give support.

There are several known causes of AV block, but in most cases, there doesn't seem to be any reason why this happens. Age is major factor, but 63 is a bit young. It is possible your sarcoidosis is responsible, but if you have had pulmonary embolisms, it is possible that you may also have had a coronary embolism as well. 

At the end of the day, your cardiologist will be able to help you through what must be a very worrying time, and I hope all your questions will be answered.

As regards the AV block - whatever the cause - I'm afraid that you (and I) are stuck with it, but our pacemakers will keep us going.

Try to stay positive.

Best wishes.

Graham

You know you're wired when...

Your pacemaker interferes with your electronic scale.

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