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Its called Libman-Sacks Lupus Endocaritis. It is the reason I needed the valve repair then replacement. It usually attacks the aortic valve but mine was the mitral. Once they cut into the heart, the electrical system is forever messed up. Afib, tachycardia, bradycardia, PVC's, list goes on. Have tried every single beta blocker out there, have had ablations, pacemaker, more beta blockers and still i have so many arrythmias that it is affecting my sleep, my life and my attitude. I just want to… read more
Take care, both of you. I hope you get some relief soon. We are all at risk for Libman-Sacks endocarditis.
It damaged my aortic valve. I have a prosthetic one that was placed in 2013. Metoprolol and lotrel help mine but it took a few years not to have arrhythmias
I have severe aortic valve regurgitation and stenosis. However my mitral valve has minimal regurgitation. I was told by my first rheumatologist in a nonchalant way. I was told I needed surgery right away 6years ago. I went to the best Cardiothoraic doctors 3 in N.Y until 2 Mount Sinai gave me a full heart workup. I was anemic for 10years they sent me to a hematologist increase my blood count from 8 to 12. 6years later my valve is still open, but because its not enlarged, I'm on Candesartan, check up every 6mth. That lowered my heart beat, it was so loud.
This past December my ECHO showed that my heart had gotten worst , I had covid19 pneumonia last January but again my heart is not enlarged, have no issues with blockage , chest pain. Since the valve would have to be replaced every 13yrs, heart team will not operate until I show signs. I had my 2nd kidney transplant with my valve problem. The team refused to transplant a new kidney but thanked God for my doctors, they went to bat for me and I had my 2nd transplant 2 1/2 years ago.
All I can say it to make sure have an open conversation with your doctors. Have you tried getting a second opinion (if you have,please ignore)Also being on so many meds might be offsetting other complications. I walk 30mins a day (about 6 weeks ago)
Remember each situation is different, the only thing that is giving me time is that my heart is not enlarged. Prayer is very important to me and that helps. Lupus is like carrying an unwanted, unwelcome visitor every day. Our lupus family is supportive,understanding and no judgment.
Marcella has had multiple heart issues caused by lupus.
Knock on wood for me. With my family history, it’s just a matter of time.
I hope that you are getting good care.
I am on betapace 120mg twice a day
Still having arrythmias, afib and tachycardia. Im glad it is working for you
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