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cljenne, February 8,  2019  1:24pm EST

Endocarditis and Mitral Valve Replacement

New to this forum. I haven't been able to locate a heart support group in my area. November 2018 I was diagnosed with bacteria on my mitral valve. I was having an issue with Cankor sores and sore gums. I had a dental appointment Nov. 14th. I was hospitalized Nov. 27th with a 103.9 temperature. Endocarditis was determined to be the problem. I also have Chron's disease. I spent 27 days in a cardiac hospital. Mitro valve replaced with a tissue valve, Penicillin infusion until January 19th, and a pacemaker. I have Afib and am on Amiodarone. I'm also on Warfarin to avoid blood clots. I'm having constant bad dreams and am afraid to go to sleep unless someone is there with me. I'm living in a constant state of fear (either my heart stopping, bacteria on my pacemaker or new valve or a stroke.) How in the world do I get past this? 

3 Replies
  • AmbassadorDN
    AmbassadorDN, February 8,  2019  4:49pm EST


    What a journey you have been on! I can completely understand what you are going through. Although I have not had endocarditis myself, I have had three heart valve surgeries and therefore understand the crushing fear you are experiencing. It seems that you are experiencing post-op depression, which is often under-recognized in the medical community. 

    You've taken the first step in coming here to the Support Network for help. I might also suggest that if you are open to it, researching, finding, and speaking with a licensed mental health professional who can help you process what you are feeling. After my third surgery in 2017, I was so fearful and depressed that it was my cardiologist who suggested that I reach out to a therapist. Like you, I was worried about clots, strokes, endocarditis, etc. He also referred me back to my neurologist who prescribed a regimen of brain activities to help get myself back to "normal," in a sense. I did 30 minutes each of coloring in an adult coloring book, journaling (which later turned into blogging), reading, and puzzles. My neurologist also prescribed me a mild antidepressant to help get my brain chemicals back in order. While it did take me a long time to feel like myself again, I do finally feel whole again (for the most part).

    Please feel free to reach out to us here, ask questions, vent...whatever you need to help get you out of the fear you are experiencing. We are all here for you, and I'm sure our fellow Ambassadors will be along shortly to offer you their special insights and support.

    To Heart and Soul Health,

    Ambassador DN



  • KA1963
    KA1963, February 17,  2019  4:00pm EST

    I also had a valve replacement due to endocarditis. You can get past this and lead a normal life. I do not have a spleen, so I have to premed before dental procedures. If you can get past yhe fear, life can be normal.

  • AmbassadorR
    AmbassadorR, February 18,  2019  4:07pm EST

    Hi cljenne

    I, like you also got endocarditis. Two years prior I had a aotic valve replacement and mitral valve repair. My last surgery to replace the infected aortic valve was five months ago. I went through many of the things you are going through. I had a PICC line for several months as I had to give myself antibiotics everyday. I was on amiordarone, and am still taking xarelto, a blood thinner. Like you I was having having bad dreams, which turned out to probably be from the ambien to help me sleep. I stopped taking them, and just dealt with the long nights for a while.

    The psychological part of heart recovery is difficult. It can last much longer than the physical part, but I have learned it can be overcome. Five months out of surgery and I feel strong again, leading an active and normal life. I work out most days to make my heart stronger and this gives me a lot of confidence. One's heart likes the exercise. I do challenge myself at times to see how well i've recovered, but I would say that isn't required. Being true to your recovery plan is, I feel, most important however. I used this opportunity to re-invent myself. To make myself stronger and healthier. You too will get better and stronger. Don't be discouraged by how you're feeling now. Know that as the days pass you will start feeling better, even on those days when you might have a set-back, the body is constantly at work to recover. Your heart will be much stronger than before and the risk of stroke lessened because your problem was addressed. Please take advantage of this site and it's vast experience in the real life living with heart disease.



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