Jun 10
bhanes , Posted on SUPPORT NETWORK Blog

bacterial endocarditis

In March 2012 I got real sick went to the doctor they put me on antibiotics for pneumonia. When meds were gone I was still sick so was put on different antibiotics. As long as I was on antibiotics I felt great. This effected every aspect of my life 102 temperature 1 minute chills the next my blood sugars were out of control. In June we got a free trip to Alaska to see family by this time I had lost 40 pounds and was sick the whole time there. We got back home and went to the hospital. Two days later I was sent home on different antibiotics and told to check in with doctor which I did. I was not getting any better. Then on august 2nd I was real bad just stayed in bed the whole day even falling 1 time. I told my wife I was going to bed to die. The next morning I was still alive so we loaded up and headed to the hospital 90 miles away. When we got there I couldn't get out of the car my wife went in to get help. That day I don't remember well all I know was a lot of tests and the results were I had bacterial endocarditis and needed mitral valve replacement and had had a stroke on both sides of my brain. When I woke up from surgery I had no use of my right side. Over the next 61/2 weeks I learned how to walk, talk and regain alot of the use of the right side. But the depression and lack of sensation and memory problems have been close to unbearable. they didn't think I would walk out of the hospital but I did with the use of a cane. Unfortunately no one knows what I am dealt with ove the last almost 4 years except my wife because she sees the changes no one else sees. I still fight everyday to be a productive part of society when all I want to do is nothing. That's the short version of my story. Thanks for reading. 
  • trvlgy2u
    You are very brave,,,go to a support goup!
  • Megnolia
    Hi, You are describing how I feel because you are there too. I guess that no one knows what it's like unless they've experienced it. I do feel thankful that I'm still alive and that every minute is a blessing. But, my body is a stranger in some ways and my dreams/ goals are becoming so too. I guess we have to just persevere maybe it gets better over time?? Thank you for responding.
  • Eshaan
    God take exam of those who are good human being...god bless u...
  • connectcare
    I hope every day improves for you. I relate to what you are experiencing. I have no spouse so I have to encourage myself to "begin again" every morning. I don't look like I have limitations and am handicapped so no one cuts me any slack at all when I am out in the world. My anoxic brain issues, PTSD, and balance and strength challenges are not easy to live with. There are no support groups within close driving proximity so this is a lifeline for me. People who understand! God bless you all!
  • milam.ellen
    You apparently are a very strong person. I admire how far you have come. I so understand the feelings of depression that often come with this disease and your post makes me feel as though I am not alone. We have to keep fighting through and supporting one another and believe that brighter days are coming. We are the tough ones, we are the survivors.
  • peaceofmind
    My mother is suffering from endocarditis since January. I share the same antibiotic stories and repeated visits to the hospitals. The antibiotics are controlling the infection but her levels have become toxic so they just discontinued the most potent. Because of the toxicity, she is unable to walk or stand. Right now I fear for long term effectiveness. Thank you for sharing your experience.
  • Bevrly
    I am sorry to her of your problems. My husband had a stroke and some of your symptoms sound like his. The numbness, etc. He was also paralyzed on his left side and had to learn to walk plus he had balance problems. He was in rehab for 6 weeks and after a period of time got back to almost his old self. We joined a stroke support group and it helped him very much. If you can't find a heart support group try a stroke support group. Praying for you. Beverly
  • bhanes
    Thank you all for your comments. The closest support group is about 100 miles away would love to be able to go. The antibiotics used to treat endocarditis is very toxic it got to the point it was hurting my kidney and liver. They put a pic line in my bicep that ran to close to the heart so antibiotic went right to myheart to protect it. They also brought in infectious disease doctor to help with antibiotics.
  • Thealple
    I commiserate with you guy. Have you had a serious conversation with your Doc about prescribing SSRIs for Depression? Why not try. So many times chemical changes in the central nervous system are a result of the life events you've suffered. Antidepressants, properly selected, may give you a new lease on life❗️
  • Leslie
    Hi I am Leslie and boy do I know what your saying. You have gone through sooooo much. I am understand because what I wrote is so small compared to what I experienced. And I read something about being on SSDI? are you not o it??? Get on it! I am on SSDI, SSI, Medicade and Medicare. And I live on squat! I live with my dog and I also have aphacia (sp?) But I am living pretty good compared. Hey My heart is with you. Leslie P.S. I am lucky, I had to learn how to read, (hopfuly???) and right, Bye
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