cardiac sarc

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Hi this is M I have cardiac sarc. the granulomas are in the heart tissue from the out side to the inside of the left ventrical. I just got home from my third open heart surgery. Where people who have sarcoid in other places also get cardiac sarc I am Mayo's only cardiac sarc patient with it limited to just the heart there are 4 of us in the us with this. 7 Years ago I was diagnosed and since then they still have not found another one. Though I do feel if they would test my spinal fluid they would also find that I have it in my nervous system.

I have had 4 different pacemakers and also have the ICD they were not going to put one in but then I kept having non sustained . the tac starts and stops on its own. I have had a few that I was unsure I was going to live thru. And one of those even they diagnosed me with panic attacks. The only problem with that is I sky dive scuba dive, grew up a completive tower diver. So my personality just didn’t fit. I finally at one point told my Dr I'm not going to make it if you don’t listen to me one of these times. I had to flat line a couple times before they actually would listen to me. I get a fib it is a fast quivering feeling in the upper part of the heart. I I also get extra heart beats. I am now just recovering from my third open heart surgery. the tricuspid valve they put in two years ago went bad the sarc must have been growing on one of the lids.

I now have the ICD so I feel a little better. My mitral valve has and anuplasty ring on it.they did the maze procedure cuts in the atrium for the blood to flow on to take me out of atrial fib. Atrial fib can cause blood clots. If in doubt check it out, get at least three different opinions. If you know something is wrong don’t give up until you get answers. AS it is the most wicked of the Sarc monsters.!! good luck you can e mail me at my private e mail mmommer@...