Tlcvegan
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Tlcvegan, August 12,  2019  6:46pm EST

Endocarditis

I got endocarditis from a doctor, either during surgery or treatment after my doctors think. I never showed signs of sickness but all the sudden my leg swelled and I had red dots on my feet then after two months it moved to my hand and then back and forth. My doctors ran several tests for infections and bacteria but couldn’t find anything. I was sent for some heart tests when they discovered something on the cusp or the aortic valve and it was destroyed and that is when all the doctors agreed in where it may have come from. They were also shocked I was walking 4-7 miles a day before surgery. However before the surgery my heart rate started to go up drastically to resting at 120. I had the surgery five months ago and I am back to working out but all the Sudden the heart rate increased again, even on heart rate meds. They have run more tests and imaging and say they look fine so now they are looking at hormones and thyroid. I also just turned 40. I was wondering has anyone had valve replacement due to endocarditis? What valve? How did you get the infection? How long was your recovery? How old are you? Have you had heart rate issues?

3 Replies
  • AHAASAKatie
    AHAASAKatie, August 15,  2019  7:35am EST

    I am so sorry that you are having to manage this. I can share what we have on heart valves and endocarditis with you. Please let me know if this is helpful or not. Best Katie

  • AL1984
    AL1984, September 3,  2019  7:38pm EST

    Can you share what the red dots looked like? Did they start as little red/darker colored pimple like dots? Did they ever end up looking like blood blisters or did you get any type of red looking ring around them? My Mom had a mechanical mitral valve surgery in 2007. She recently had some dots pop up (about five at first) on her left hand along the side of her index finger. They spread to her legs, arms, nose and she had a couple on her face by her nose. Did they think valve infection caused your dots to pop up? 

  • beantrees
    beantrees, September 17,  2019  11:27pm EST

    I can answer some of your questions. I just joined tonight and came across your post. I had endocarditis and they have never figured out how I contracted it. I too was pretty functional and then crashed due to sepsis. The physicians were and still are baffled by my case and have said it was a case of really “ bad luck”. I had a mitral valve replacement/ mechanical. I am almost 6 months out since my surgery. I was 40 at the time of surgery, recently turned 41. My heart rate has been elevated since surgery and my cardiologist is following. No AFib, but I wore a monitor for a few weeks and no issues noted. I am on heart meds as well and have thyroid issues. At times my resting heart rate is over 100 and they have not found anything wrong with my heart either. They think it could be linked to some anxiety. I am still recovering. It sounds like both of us were healthy, with no heart disease, before this took place. It is shocking!! My cardiologist has told me it takes a year to come full circle. I hope this helps a bit. 

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