infective endocarditis!

[ski girl]

A few of you may remember me from 2010 when I got an AVR with tissue valve. Well, here's an update!

In August, I ran our local 12km race with over 30,000 of my closest friends. I felt awful, I could NOT believe how hard it was. After I got home I took a nap, and woke up with what I assumed was the flu - all shivery and temp 40C (should be 37C). This was Sunday. Then it got worse, and by Tuesday night I was having mad shaking episodes known as rigors, so I stumbled down to my local GP for whatever the cure is for the flu.

However, she didn't think it was the flu, so she rang my cardiologist (who is the most thorough person on the planet) and he told me to come in to the hospital so we could find out where the infection was.

That was Wednesday. I went downhill. By that evening I had massive pain around the area of my gallbladder and not even morphine could fix it - I was truly miserable. The search for the source of the infection was ON!

By the Friday I was having a transesophageal echo, and that showed a massive buildup of bacteria around my valve with an abscess to boot, and the bacteria were blocking my coronary artery by 60%. I was damn lucky to have lived through the race.

So on the Sunday (one week after my 12km race!) I was having my AVR redone, after being told I might not even live to the surgery, then might not make it through - needless to say this was hugely stressful and I was very grateful to open my eyes after the surgery and realise I was alive!

I've quizzed my cardiologist, my surgeon, and my infectious diseases specialist about how in the heck this happened - I grew Strep sanguinus, which is a common mouth bacteria. Most likely I was just brushing or flossing and poked some bacteria through my gums. We can all do this, but getting as far as I got is extremely rare, even in people with artificial valves.

So how to prevent it? The key seems to be mouthwash before brushing or flossing, then wait five minutes before you brush/floss. I really wish I'd been told this little nugget of advice after the first operation, but maybe some of you can benefit from it now!!!

 

[OldManEmu]

Ski Girl that certainly is bad luck to get endocarditis and have to have a redo so soon after your first surgery.
I trust all has gone well and you have no lasting effects from the endocarditis and emergency AVR redo.
Having had endocarditis myself I can sympathise with you, and after having endocarditis once you are at greater risk of getting it again than other comparable people.

 

[Ovie]

This is knowledge I'll take with me going into my first OHS. Thank you and sorry to hear about your setbacks, hope all is well now.

 

[bradvo]

Sorry to hear about this but glad the out come was a good one. Maybe they did not know about the mouth wash and have only given you some advice to try and avoid this again.

I'd be curious to know if anyone else was given the advice to use mouth wash prior to regular hygiene, I know it was never mentioned to me.

Hopefully from here on out you will be trouble free.. thanks for the tip.

Brad

 

[marc_kowal]

I've had endocarditis in the past and no one ever mentioned to use mouthwash prior to brushing/flossing, I always used it after brushing. Thanks for the information, and that is a practice I will definitely start doing.

Keep your spirits up, and you'll get through this little set-back.

 

[Bill B]

This is perhaps the most confusing area to me of post-AVR care. There isn't convincing proof that prophylactic antibiotics help prevent endocarditis after AVR or in people with diseased valves. The recommendations on this have been progressively relaxed each time new guidelines come out, reflecting this lack of good evidence.

Take a look at the most current recommendations (2008), particularly starting in section 2.3.1
http://content.onlinejacc.org/cgi/content/full/j.jacc.2008.05.008

I'm nervous about my routine dental cleanings. I take the amoxicillin as prescribed before and after the cleaning session, and it is the right antibiotic (among others) for typical mouth flora, but I still cross my fingers that nothing bad happens. You're sort of damned if you do, damned if you don't. Without these cleanings and regular daily dental hygiene, these bacteria will build up. It's well known that even routine brushing results in some of the mouth flora being detected in the bloodstream. And then there was the ominous statement by my surgeon, perhaps the top guy in his field, that left me rather baffled. He told me basically that I was going to do very well, but then added "You don't want to get endocarditis. That's really a bad thing.", as if there was something I could do to avoid it. Of course, I'll take the prescribed antibiotics prior to any procedures for which it is recommended, and I'll make sure all the medical people know I have a mechanical valve. BUT, as in your case, and in many others reported here that involved normal flora present in and on the body, it just happens with no good explanation as to why.

Anyway, I've decided to go on living and not worry about endocarditis. It's certainly a scary prospect, but what are you going to do? I follow the current recommendations, but I am aware that it can happen anyway and since it is not clear how to avoid the risk, there's not much point in worrying about it. Mothwash may help. I see no reason to not try it.

I am just so glad your condition was detected and treated so rapidly and that you appear to be doing well now. I hope my expressed doubts don't cause anyone additional anxiety. It is just the way things are right now. Like I said, follow the current recommendations and don't worry about it because worry does not change anything for the better, and pay close attention to any fevers. Hopefully the science in this area will improve.

An interesting sidelight - my gums used to bleed somewhat with brushing, evidence that they weren't real healthy and I had gingivitis (inflammation from accumulated bacteria in the gum pockets around my teeth). I had that for 20 years. After my AVR, during which I received broad spectrum antibiotics for several days due to post-op fever, my bleeding gums completely resolved and they have been much healthier since. I do still get some bleeding when the hygienist digs into my gums at the cleanings every 6 months, but it is greatly reduced. And I continue to get these cleanings, knowing that they are invasive, because I suspect that if I didn't, my gums would not be as healthy and there is some unknown risk from that that balances things out. That's just my personal conclusion.

 

[markp66]

Using mouthwash before brushing/ flossing makes obvious sense although I never thought about it before. Thanks for the info. Something as small like this could even save a persons life. Sometimes I think heart valve patients take so much care over their dental hygiene that they end up cutting themselves etc which is what causes bacteria to get in. Thanks again, I'll be doing this from now on.

Good luck with your recovery. Must be terribly frustrating but seems like things are on the up.

 

[piglet]

Thanks for the info. I too had endocarditis and was never given any advice after valve replacement other than 'practice good oral hygene'. I am on immunosuppressants so the risk for a reoccurance is high with me. All one can do is thier best and then hope for the best that fate provides.

 

[Duffey]

What rotten luck! I do remember your first avr, probably because we shared the same valve type. Did you have it replaced with another bovine or did you go with a mechanical?

 

[Bev]

Thanks for tip about the mouthwash Ski Girl.
This is what I love about this site and how helpful information is passed along to other VR patients.

 

[Bina]

This may be worthy of note: Not all mouthwashes are created equal, and not all have disinfecting properties.
A good inexpensive sterile rinse, is just a pinch of salt in a glass of water. Try it before and after brushing/flossing.

 

[sarahsunshine]

This is great information. I bet the same applies before the dentist too, even if you have antibiotics. The wash (or saline rinse) kills the bacteria BEFORE it goes in the blood stream. The antibiotics, AFTER. Another step in the prevention train.

Now, if only I could get Skyler to brush his teeth at all... I don't know whether I should scare him to death, or leave well enough alone.

 

[Bina]

This is great information. I bet the same applies before the dentist too, even if you have antibiotics. The wash (or saline rinse) kills the bacteria BEFORE it goes in the blood stream. The antibiotics, AFTER. Another step in the prevention train.

Now, if only I could get Skyler to brush his teeth at all... I don't know whether I should scare him to death, or leave well enough alone.

How about equipping Skyler with some really cool battery powered brushes and the threat that if he doesn't brush,
then he can't watch his fave TV show/ or eat his fave snack.

 

[Lionheart]

Ski girl,
WOW!
Thanks for sharing that. How are you doing now after your second surgery?

I just had my teeth cleaned today- after taking my pre-med of antibiotics. In the past I have not always kept up with my flossing and my gums would bleed at the dentist, but lately I've been flossing and brushing regularly and I had a great check up today with no bleeding.

Maybe you could help me understand something that I worry about. What was the condition of your gums when you had the toothbrush-bleeding event? Would you say that your gums were in good shape and that bleeding was unusual or did your gums often bleed when brushing? I ask this question because I'm would like to know if I can reduce the potential for an infection by regular flossing or is it a random event that just happens even if the gums are healthy?

Thanks again for sharing. Please take care of yourself and let us know when you run your next 12 k race.
Best,
John

 

[ski girl]

Duffey - I have a mechanical valve now, my surgeon said I had no choice as at 41 I could expect to go through another bovine valve and require re-op, and he had to do a fair bit of repair work around this valve with Dacron patches. That would have made a re-redo very tricky indeed!

Lionheart - my gums are in great shape and I have no memory of any bleeding. My dentist did tell me that I had a cavity that should get fixed, which I didn't as I can't feel it (and don't have dental insurance . . .). That may have been the source of the infection although my doctors wouldn't say for sure and none of them were keen for me to get the cavity filled soon after the surgery.

I think it was just dumb luck really - but next time I get a slight fever it will be accompanied by panic and a call to my cardiologist!!

Thanks all for your support!

 

[coffeelover]

Ski girl,
Thanks for sharing your experience.Crazy how that happened. Hope you are feeling better.
Take care!

 

[Julian]

Oh No, I can't believe you went through this. I'm glad your alive! Wow, your experienced opened my eyes, I will now use the mouthwash before I brush and floss now. Yikes.

 

[sarahsunshine]

How about equipping Skyler with some really cool battery powered brushes and the threat that if he doesn't brush,
then he can't watch his fave TV show/ or eat his fave snack.

If only.. He has a fancy electric tooth brush (for that reason). But, threats of no TV are uselss since he spends one week with us, and one week at his mom's and she records every TV show he might want to watch for him. Snacks... oy. He eats snacks like you wouldn't believe whethr we let him or not. healthy food, on the other hand... good luck. Good idea in theory. We've been trying for ages. We still needto wash his hair for him or it doesn't happen.

Darn spoiled kid (LOL j/k but very loveable!).

 

[Bina]

If only.. He has a fancy electric tooth brush (for that reason). But, threats of no TV are uselss since he spends one week with us, and one week at his mom's and she records every TV show he might want to watch for him. Snacks... oy. He eats snacks like you wouldn't believe whethr we let him or not. healthy food, on the other hand... good luck. Good idea in theory. We've been trying for ages. We still needto wash his hair for him or it doesn't happen.

Darn spoiled kid (LOL j/k but very loveable!).

Oh I hear you. Many "modern" parents just want to be their child's "best friend". That is not our job.
Our job is to bring up children to their best potential to survive independantly in this crazy world.
Ooops, putting away my soap box now.
(I remember sitting on my toddler and pinning her down when she was refusing to take her asthma meds...we all
survived it and she still talks to me...LOL)

 

[sarahsunshine]

I'll stop hijacking this thread after this!

Oh I hear you. Many "modern" parents just want to be their child's "best friend". That is not our job.
Our job is to bring up children to their best potential to survive independantly in this crazy world.
Ooops, putting away my soap box now.
(I remember sitting on my toddler and pinning her down when she was refusing to take her asthma meds...we all
survived it and she still talks to me...LOL)

FINALLY - someone who GETS it!

Add on top of that the competition to be "favourite" parent (from mom's side), and it's just a losing battle. Curiously, I may not be his best friend, but when he wants to know the truth about something, he comes to me. So, despite my "non-favourite" status, by being consistent, factual and honest, it means that I have his unerring respect and trust. Also, curiously, when I ask him to do something, he listens a lot better than if either of his bio-parents ask. Funny what consistency does.