What caused your bacterial endocarditis and how soon did you have symptoms?

[debster913]

Hi, all--

Just a bit curious here as I seem to be more wary of getting bacterial endocarditis now than I was before my surgery. (My surgery was just the result of a very leaky valve.) It's not like I'm running out to get my tongue pierced or anything, but I am more cautious about anything in general that might pose a risk. I wonder if anyone else feels the same post-surgery whether or not their valve surgery was due to BE or not.

Anyway, just wondering how those of you who contracted bacterial endocarditis got it (if you know), and how soon after you began to have symptoms. And of course, any advice you have for those of us who are concerned about getting BE.

Thanks!
Debi (debster913)

 

[catwoman]

Debi:

I have not had BE, but my PCP has run blood cultures, done chest X-rays/EKGs, sent me on to my cardio twice to try to rule out BE as cause for odd fevers. We subsequently decided I just had a plain-vanilla odd viral infection.

My PCP did say a patient of his -- an RN -- with MVP, no replacement yet, did develop BE after a dental. She did premedicate, but still developed BE. He hospitalized her and cardio entered the picture. Can't remember if she required surgery to clean the valve or not. But he said it did clear up and she did not require MVR.

 

[ILoVeNY25]

Hi Debi,
I had bacterial endocarditis 10 years ago. Let me start at the beginning, I had rheumatic fever which went misdiagnosed by my pediatrician, but did not realize it until I developed BE, after dental work. A year after I had rheumatic fever. SO, I was not pre-medicated because I had no idea I had heart problems because of the rheumatic fever that never got treated correctly.
I cannot say exactly when I developed BE, which dentist appt. it was. When I was diagnosed with BE is when they told me about my cardiac problems. I spent almost 2 weeks in the hospital, infectious disease specialists everywhere. My hospital room had a big yellow sign that said Infectious Disease on it, it was hard to piece together but I no doubt had Rheumatic fever that preceeded this. I missed 2 months of school, then returned to school on a pic line (permanent IV) I had to use 3x a day for antibiotic treatment. (I would sleep on the floor so it would go faster and I remember pulling the connection out by accident and that IV can soak a mattress pretty darn fast, lol) I had visiting nurses, tutors and all that fun stuff. I recovered after some very serious valve damage, and wasn't til I developed CHF that I needed the surgery to replace my Aortic and Mitral valve and repair my tricuspid. Four years later, doing excellent. I try not to worry about developing it again because I always take proper precautions. I pre-medicate before dentist appts., I pre-medicated before I got my second holes pierced in my ears. Be careful, when in doubt, call the cardiologist. Hope I didn't confuse you too much, if you want you can read my personal story for more details. Take care!

 

[geebee]

Debi,

My story is similar to Nicole's only quite a few years earlier. I did not know I had had rheumatic fever or BE until my valve tanked when I was 24 or so. I went from a "murmur you were born with" to "you have a serious valve problem - go see a cardiologist". I was diagnosed with mitral valve stenosis, regurge and prolapse. I was having surgery a couple of years later. My cardio said there was no question that I had rheumatic fever and the dental work I had in my early 20's (no pre-meds) caused BE (untreated) which caused the damage to my mitral valve. I am just lucky it was only my mitral valve.

The only "symptoms" I can recall about the time I had RF were very bad leg and knee pain. With the BE, I did run a low fever for a couple of months but the doctor did not think it was anything so no tests were done.

The really important thing is to take antibiotics for any invasive procedure especially those that could result in bleeding.

 

[Hank]

Pumpkin Seeds

Pumpkin Seeds

While eating pumpkin seeds, I broke one of my wisdom teeth.

I didn't get it checked out until it was too late.

Time until onset of symptoms was probably 1-2 months.

Time until diagnosis was about 6 months.

 

[sue943]

Lithotripsy without antibiotics. First symptoms of endocarditis eleven days later which lasted about about twelve days (no appetite during this period plus had the shakes and chills, very tired and lost ten/twelve pounds in weight) then subsided into feeling vaguely unwell but able to eat. Vegetation growing, then a flare up of symptoms three months after the lithotripsy starting with the stroke, back to no appetite, shakes, chills, tireness etc). Blood sugar was high throughout the whole period.

I didn't develop a heart murmur until a week (or slightly more) after the flare-up, then it progressed very quickly to a stage where it was considered prudent to move me to a hospital where they could operate quickly if necessary, my local hospital chartered a 'plane to fly me to England (at no cost to me) and had me admitted into a specialist heart centre (St George's). That hospital decided to play a waiting game and to try to finish clearing the infection before surgery. I was in hospital(s) for about six weeks having my intravenous antibiotics. I had my surgery about two months after leaving hospital.

Total weight loss from beginning of SBE to end of surgery, fifty-six pounds.

 

[nia]

Cause: Unknown

Onset of symptoms to time of diagnosis: ~1 week

Time of diagnosis to surgery: 2-3 (?) days

Previous heart history: none (Actually, I've been sick only three times before that. Was any of them an undiagnosed rheumatic fever? I'll never know.)

Mooing happily for 2.5 years.

 

[debster913]

Thank you all for sharing your experiences. I wish none of us ever have to deal with valve infections; it's bad enough to have a valve problem without having to worry about BE. Glad to hear that you're all doing well now, especially Nicole (what an awful experience to have to go through at such a young age!)

I will still be careful with going to the dentist, but I know even that isn't the only way people develop BE. I met someone a while back who claimed she got BE from cutting her finger. I will be on the defensive with any symptoms that don't feel "right."

Thanks for sharing!
Debi (debster913)

 

[liza]

I have no idea what caused my endocarditis. I hadn't been to the dentist in about five years when I developed it. (Bad Liza!) But the only significant change in my lifestyle was that I started flossing my teeth more regularly. My gums always bled, so could I have gotten BE that way? That's my only guess.

I had endocarditis for about 4 months before I was diagnosed. At the beginning I had weird "chills" episodes, no appetite, and all I did/wanted to do was sleep. I later developed an intusussusception (due to a jejunal artery embolism I bet) and a kidney infection (from a renal artery embolism). I had severe symptoms (night sweats, polyarthritis then meningitis) for about 3 weeks before diagnosis. What a horrible time all of that was. I hope it never happens again!

Liza

 

[della_anne]

Bacterial infection

Bacterial infection

Hi, I am Danielle...I had bacterial endocarditis when I was 13 years old. Doctors never figured out what caused it. One thing I will never forget about that experience...you can never be too careful when dealing with your health.
I got sick and my mom thought it was only the flu..my symptoms have continued for a few days so, my mom took me to the doc. Doc said it was probably just the flu and sent me home. At home, I didn't get better, I got worse. Mom decided to take me to the doc again, this time they did a bunch of blood tests. When the results of the test came back, the doc said I had bacterial endocarditis and told my mom to get me to the hospital right away. At the hospital, the doctors did en echo of my heart and found that the bacterial endocarditis had seriously infected my heart. I ended up having emergency surgery to fix my VSD, and replace the damaged valve.
If something is wrong with your health, have it checked out and if doctors still think there is nothing wrong with you, put up a fight cause you know your body better than anyone else

 

[debster913]

Danielle,
Your advice is right on. I find myself being hyper-vigilant about my health now that I'm on the brighter side of surgery. I even called my cardio's office the other day with a concern and was reassured by my cardio's nurse practitioner. My cardio is still gone on vacation. Sometimes I feel dumb or like a hypochondriac when I have health concerns, but I'd rather feel embarassed calling my doctor over something trivial than really stupid and regret-filled for not calling if there really was a big problem. I think we valvers are more conscious of our health because of all the things that can go wrong and affect our hearts.

 

[Natanni]

My husband developed endocarditis 6 weeeks post angiogram. I will only repeat della's statement. You can NEVER be too careful when dealing with your health. Once having had endocarditis, a person is even MORE at risk for developing it again and it will be harder to treat the second time around. Don't ever feel silly about bugging the doctor too much. I am a nurse and bug my husband's doctors plenty. I will never think twice about it

 

[atydev]

Teeth Teeth Teeth

Teeth Teeth Teeth

I can not express how importand your dental health is to your heart. As you read in the other post most BE is caused by a tooth infection or bacteria getting into the blood stream from the gums. I to have had it and it was caused by an infection in my teeth. I was flossing one day and a back tooth started to bleed really bad and it was kinda sore. The next day same thing only it was even more tender, on the third day it was terriably sore and still bleeding, me being the let it roll down my back kinda person let it go because by day four no bleeding and just a tad tender. With in a month or so I started feeling really worn down. Then chills and cold sweets, low grade fever, and just breakin out in big huge sweets for no reason. My muscle got really sore and tired I could not even lift my arms to wash my hair. I had no strength at all. I know kick me but I was a mother of 2 boys and the General Manager of 2 hotels I had no time to be sick. With the aid of coffee and diet pills I was able to get out of bed and drag around in this state of misery. This went on for 2 more months. I guess I had it almost 4 months or more before I was diaginosed. I would have been dead had I not had a stroke on the job from being septic. I got to the hospital and my blood pressure was 46/28 I was lucky to have lived, but it cost me my aortic valve. My mitral was already leaking but now it was distroyed as per my medical records, my aortic was totally damaged. I had both replaced with a myectomy done at the same time because they also found I had HOCM when they went in there to replace the valves. Myectomy is a removal of part of the heart that had gotten to thick and no longer functioned. So if u floss, mouthwash and brush your teeth 2 or more times aday you should be fine and dont forget premeds before you have and dental work or anything done that breaks the skin. Bless you and good luck

 

[MarkRose]

Hi Debi!
My first surgery was due to bacterial endocarditis, they weren´t sure how I picked it up. I DID already have a damaged aortic valve.
YES, afterwards I was so careful about EVERYTHING. But with time, I relaxed a little.
It´s very important to take antibiotics if you are going to have dental work done or any surgical procedure ( I would take them with piercings too )
Otherwise, just be careful of infections- any time you have a cut, take good care of it!
Hope this helps, Margaret

 

[MarkRose]

PS - Symptoms

PS - Symptoms

I had atypical symtoms, in that I didn´t present the small clots that should have been present under my finger- and toenails.
What I did experience: chills, weakness, joint pain, tiredness and continuous coughing (and near the end, high fever which I didn´t even register)

 

[ClickerTicker]

Like most folks, I can't be exactly sure what caused my endocarditis. My best guess is dental.
I had a heart murmur and my mitral valve was diagnosed as needing repair. In order to reduce the risk of infection after the op, I decided to get a loose tooth removed prior to surgery.
I'm pretty sure that was my big mistake. No antibiotic cover was used. That was almost certainly the difference between a repair being possible and a replacement being the only option.
Symptoms were fairly standard, with pronounced night sweats.

As it happens, within the last couple of weeks I've had a letter from my dental consultant regarding cover during procedures. Prior to this, having a MVR and prior Endocarditis, I had to have intravenous antibiotic cover prior to any dental stuff that disturbed the gums - including hygienist. Now I can apparently rely on the normal oral antibiotic cover.