Endo’s Gotta Go!

Rinse with water.


Rinse with a pre-brush mouthwash.

Brush my teeth.

Rinse with water.

Use mouthwash.

And I even have a gadget that sanitizes my toothbrush with UV light. Am I a little bit paranoid? Well, yeah… but I’ve fought endocarditis. And that is no fun.

Endocarditis is when the inner lining of your heart becomes inflamed, usually the heart valves. It can be either infective Endocarditis or non infective Endocarditis, depending on if a microorganism is causing the problem or not. And one of the more common ways to get it is when bacteria enters the body through a mouth wound, usually through a recent dental procedure.

I hadn’t had any dental work recently, but I was still feeling run down and out of sorts. So we skipped the local hospital and went straight over to Providence Hospital in Columbia. My temperature was up, and they knew I had something, but wasn’t sure exactly what. So they admitted me and gave me a general menu of antibiotics to try to bring the fever down.

It didn’t work – in fact, a few days later my temperature hit 103. And that is when one of the doctors mentioned the phrase “Cooling Blanket.” Trust me, you don’t want to be issued a Cooling Blanket.

The Cooling Blanket goes right above the sheet on your bed, and it has several long, thin tubes running through it. Saltwater is pumped through the tubes to cool the blanket, and the patient below it. They use saltwater because you can cool saltwater to below 32 degrees before it freezes.

The Cooling Blanket was as cold as it could go, and to make it even better (or worse), the doc turned my air conditioner on full blast and shut the door. Columbia was in the middle of one of the warmest summers in recent memory, but it felt like a Chicago Christmas in my room. The only thing missing was the wind coming off the lake.

Finally the blood cultures came back – the first culture had accidentally been contaminated, they had to do it again – and they determined that I did have Endocarditis after all. The cure for that is four weeks of antibiotics. Endocarditis is like a bad penny, it just won’t go away.

Oh, boy.

About the third week of this I was having trouble. My brother noticed it first; when I walked, I was sliding one foot rather than lifting it. I didn’t even realize it. After my short term memory get bad and I started slurring my words, they moved me over to another hospital, where they had an MRI scanner.

My scan was at 1:00 PM, and by 3:00 PM I had been admitted to the second hospital and being prepared for surgery. Surgery?!?! Somebody’s got some ‘splaining to do! Turns out a small percentage of Endocarditis patients can develop a cyst in their brain as a result of the infection, and I was holding the lucky ticket.

The cyst was the size of a Kennedy Half Dollar, but it came out easily. All we need to do now is have some more antibiotics…three more weeks worth.

Oh, boy (part 2). But what are you going to do? I was to the point of chanting “Endo’s gotta go!” and this was the only way to get rid of it. So I gritted my teeth and put up with it. Needless to say, they had shaved my head for the operation, so I spent the next few weeks looking like Lex Luthor. And only after I made it back home did I learn that certain forms of Endocarditis has a 20% death rate!

So take my advice, ACHDer’s and Cardiac Kids: Take care of your teeth, and ask your dentist to prescribe any needed antibiotics before dental appointments!

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