Few questions about endocarditis and dental work - pre surgery.

[Sash]

Hi All-

Great forum, lots information, so grateful that this type of community exists.

Recently about a month ago, I got diagnosed with Moderate Aortic Stenosis and Regurg. A month prior to all the tests and diagnosis, I had deep cleaning done, nothing major.

A few weeks ago, I had a slight fever, loss of appetite, shivers at night and night sweats. Concerned, I called my cardiologist and asked if was related or endocarditis - but he said it seems as if its something completely unrelated. Eventually it went away, but it came back a few days ago - I had a fever of 102, had night sweats etc. Called the cardiologist again and asked if I should goto urgent care, this time another cardiologist said it seems as if its unrelated, but to get blood work done. (which I am doing today)

I have been reading about the severity of endocarditis, and I have been worried. Since my official diagnosis all I can think about is getting surgery for my valve, and reading threads throughout this site. Any feedback, thoughts would be great.

Thanks all,

Sash

 

[Jkm7]

Sash.....

You have done the best thing.
You got tested.
Be diligent about following up with your cardiologist regarding the results. You are your own best advocate. If you feel you need attention, do your best to get it.
Good luck and let us know how the tests come out.
Happy you have found us here.

 

[tom in MO]

Welcome.

As Jkm7 said, you are doing the right thing.

Don't worry. It's cold and flu season and if you're worried about your valve, your immune system might not be optimal.

As Jkm7 also said, make sure to follow up on your blood work, even if you start getting better.

 

[ski girl]

Sash - I got endocarditis last year and it almost killed me. It was a mouth bacteria and I hadn't had any dental work done. My fever was 40C (104F??) and I felt awful, then started violent shaking and when I went to the doctor three days later she rang my cardiologist who got me in immediately. I was horrendously sick, much sicker than you sound, and I had no other flu-like symptoms - no aching - and the fever certainly didn't go away! I ended up needing an emergency OHS to replace my first replacement valve, which had 7mm of bacteria on it that was blocking my coronary artery by 60%.

I'm not writing this to scare you - as others say you are doing the right thing - but it may just be the flu! You don't seem to be terribly sick so you should take some comfort in that. But the blood cultures will show what's going on.

I was told how to brush my teeth to avoid endocarditis AFTER I had it (thanks guys) - rinse with antiseptic mouthwash, wait a few minutes, then brush and floss. We should all be doing this. Let us know what you find out from the blood cultures!

 

[Adrienne]

When I had endocarditis which, by the way, was not after a dental appointment, I just had a low-grade fever, terrible headache and no energy whatsoever. It was called sub-acute bacterial endocarditis. I think maybe when it is acute BE, the fever is higher.

 

[VegasBAV]

I had spiking fevers up to 102, mainly at night, no energy, and loss of appetite without nausea.

 

[newmitral]

Hello Sash,

I had endocarditis of my native valve, and because I had no prior heart issues, it took way too long for the doctors to figure out what was wrong, and I was at the brink of death before he correct diagnosis was made after months of testing. Frankly, I'm very lucky to still be here at all.

Your symptoms sound very much like the classic symptoms of endocarditis, although it could be something else.
The night sweats, chills and loss of appetite are very common with endocarditis - I had all those.
In my case, I did not have a fever, but I had a persistent dry cough, and anemia along with an enlarged spleen from my body trying to fight the infection. So, symptoms may vary.


You are far and away miles ahead by suggesting/insisting that the doctors check for this, and having the blood tests done.
That was unquestionably the right thing to do.

If you have an elevated Sedimentation Rate, and/or an elevated C reactive protein level, then these are pointers to an infection, which could be endocarditis and should be followed up. If you have either of these infection markers, the sooner they can identify the specific infection and start the proper antibiotics, the better.

My illness started 2 months or so after a routine dental checkup and cleaning (not deep cleaning), so in my case it is highly unlikely that the infection was associated with any dental work. But, as I can personally attest, you can get endocarditis without having had any major dental work.

I wish you all the best, and hope that it is simply the flu.

 

[Forrest]

Sash,
As others have so wisely said, you did the right thing. Having a blood culture is important when there are suspicious symptoms. Many people are unaware of the symptoms and might not know to treat them seriously, so feel good that you acted promptly. Fortunately endocarditis is of low occurrence, but that’s of no comfort to the person who contracts the very dangerous infection. And heart valve patients are more vulnerable to endocarditis than the regular population. I too don’ t want to alarm you, it may be any of a number of more common ailments, but I believe it’s best to play it safe if you get the classic symptoms, especially if they occur soon after a dental procedure or certain other procedures (i.e., urinary tract, intestinal tract etc.). For me, my fevers were mild and intermittent (how sneaky is that), I even felt I was starting to get better within my week of symptoms before I was admitted to the hospital and put on infusion therapy. I almost dismissed the whole thing, if it wasn’t that I had an invasive dental procedure less than 10 days prior to the start of my symptoms and later experienced extreme abdominal cramps one morning, then my fevers came back, I may had waited longer and risked serious outcomes. It was also the summer time so I thought it would be odd to get a flu. After being admitted to the hospital with subacute bacterial endocarditis (strep viridans) the doctors said I detected my infection very promptly (I thought I was being overly cautious researching the subject of endocarditis after I was told about my heart condition, boy did it ever pay off). I hope your cultures come back showing that it’s not endocarditis and that you’re back to normal soon. I don’t live in fear of this, but I will certainly stay vigilant when it comes to suspicious symptoms, it’s nothing to take lightly. Best wishes.

 

[Adrienne]

Just another little thing. You need to not only have normal blood tests, but actual blood cultures done to be sure.

 

[Sash]

Thanks for all the feedback everyone.

I did have blood/blood cultures taken on each arm yesterday. (not too sure why the doctor requested both sides) I was informed that results will be given within 7days, so now its just waiting time.

Side note: fever is gone, still have night sweats, and no shivers until earlier this week. Strange?

 

[Forrest]

Sashin,
When I was in the urgent care clinic they awaited a short while for the first blood tests to come back to see what if anything my body was doing to fight a potential intrusion (e.g., white blood cell count, inflammation markers etc.). They also took separate draws from different arms at different times for the specific endocarditis culture analysis, which the doctor said could take up to 2 or 3 days to come back. The regular blood test results just took a short while (<2 hours). The doctor knowing of my fevers, very stenotic aortic valve and recent invasive dental work kept me in the examination room the entire time waiting for the initial blood tests, when they came back he said my white blood cell count was extremely high, and all of my other markers were way out of whack (see Newmitral’s post above). The doctor said we needed to wait for the blood cultures to come back but in the meantime he was admitting me to the hospital right away (I was bummed since I was hoping he would say that I just had the flu or something similar, and since it was all new to me I was just a bit scared, but months later I realized just how fortunate I was to get diagnosed promptly and while I still had my native aortic valve). I heard that the doctors get reports about every 12 hours or sooner from the lab on what’s growing in the petri dish, and that although it can take 2 or 3 days if something is there it usually starts to grow sooner. Later I learned that if nothing initially shows up they still keep testing the cultures for another week or two just to make sure something doesn’t materialize slower. Meanwhile I was put on a strong drip of antibiotics. In the hospital they got reports back on my culture later that first night (possibly early the next morning, it’s all a memory now) and said Strep Group A was growing, so they adjusted the antibiotic type, by later the second day they nailed down the exact culprit (Strep Viridans) and I was put back on the original antibiotic. The bugs all have their own unique lifecycle characteristics and are killed best by different antibiotics.

I had always wondered why they took draws from different parts of my body, my first assumption was that the endocarditis bugs can be very insidious and can initially hide in different parts of the body, but later I read something about how they can’t afford to miss this diagnosis, so they take the extra step of drawing from multiple sites, that way if in the very odd chance one test fails or is contaminated during the act of taking the draw or by instruments along the way they have another draw that can confirm their findings. I think most of the time if you got it they know by end of day 2 from the blood cultures, unless it’s a slower moving variant. And, they would get some corroborating information from the regular blood tests whether your markers are very abnormal. But endocarditis can vary, such as subacute vs. acute, bacterial vs. other, and even the progression of symptoms in patients can be different. And a big concern is the growth of vegetations and potential serious damage to heart valves, heart wall, etc. Over the years they've gotten better at treating this dangerous infection, but it's still a challenge case by case. I am no expert here, I just know a bit about my own unique experience, so do pay close attention to your doctors and ask questions. It’s good that you’re under the care of doctors who are specifically testing for endocarditis, they’ll be following the protocol for its detection. And as always, we are often our best advocates.

 

[Gail in Ca]

I'm glad to hear that your doc ordered blood cultures. So many times, we that have had endocarditis have been mis-diagnosed the first or second doctor visit, loosing precious time. For me, only 6 days had gone by after I had a 101 fever, body aches, the most painful shoulder, and then blood in my urine, and the most severe headache I had ever experienced. The urgent care doc ordered so many tests, even a CT scan of my head, and they all came back abnormal on that Thursday 4 yrs ago. The blood cultures came in on Friday, I had acute/sub-acute bacterial endocarditis. ( I almost bit the dust, I had a brain bleed as well). Mine was caused by staph. lugdunensis, and I had many blood cultures in the hospital those first days.
It is such a serious thing, that now my cardiologist has given me his personal cell #, in case I ever have a fever, I'm to call him directly! I had also been to the dentist only a month before, but my bacteria doesn't live in the mouth!