Endocarditis stories

[Smiley2000]

I had my mitral valve repair 17 months ago (annuloplasty ring was inserted). My Cardio told me, even pre-op that there is not need for antibiotics before dental or other procedures. So I had my rootcanal the other day - no antibiotics and I am fine.

I have to go in for a CT, Gastroscopy and Colonoscopy to further investigate the Chronic Appendicitis and possible removal. I have read a lot about IE (infective endocarditis) on the Internet and I would like to hear from everyone on this forum that HAD Endocarditis:

How did you get Endocarditis? is the cause more likely to be "streph throat" or sinus infections/virusses?

How many of you got IE after dental work or other procedures?

 

[sue943]

I had kidney stones treated by lithotripsy (ESWL), I bled after one of the treatments and became ill 11 days later. Until then I had no cardiac problems of which I was aware. I didn't take antibiotics.

 

[Adrienne]

My husband and I were on vacation in Italy, and I remember that the first night, my gum bled a little bit (certainly not the first time that has happened). Maybe because I had not slept for over 30 hours (I don't sleep in a plane sitting up) my immune system was not as active. In any case, the day after we got home (13 days after the slightly bleeding gum) I had a low grade fever. The fever continued and I would wake up with splitting headaches. I thought maybe I had gotten the West Nile Virus or something like that. Finally, after 13 days (13 seems to be my unlucky number) my husband brought me to the ER, and the rest is history! They took cultures and said it was the streptococcus virdans bacteria. They put me on IV penicillin and gentimycine for 5 days. Then I went home with a PICC line and had a pump where a new bag of penicillin had to be put in every day (long story). I had this for four weeks. That cleared up the infection.

 

[Petros]

This is a story I would rather prefer not to remember.
Two years ago I got Encocarditis that ended with AVR. That was a very difficult time for me and my chances to survive were very low. The bacteria attacked my malformed aortic valve and destroyed it in just a period of few weeks.
The point here however is that I never came to know the responsible bacteria or the way that it entered my bloodstream. The reason is that I was fully loaded with antibiotics so that all blood cultures were returned with a different name of bacteria. Also I do not remember any other problem with my body or had any dental work.
I understand your concern and my advise woukd be to follow only professional advise. Endocarditis is a very nasty condition and I am really fortunate to be alive.

 

[olefin]

I always take antibiotics before dental procedures. First few years after AVR they were given by IV in the hospital or my home.

My experience with abscessed root canals and antibiotics.
In the last few months I've had an old root canal go bad. The endodontics found it was badly abscessed. I could smell the terrible odor as he drilled into it. That day I was in his chair for 3 hours, been back twice for another 2.5 hours. I've taken antibiotics an hour before each time and for full 10 days after each treatment due to the infection. He's still not sure if he can save the tooth but hasn't charged anything. The last time he said it looked very good for me not to take the antibiotics unless I felt a change. Couple days later I've started another 10 day round that I'm still taking.

I've had two root canals jobs, wasn't aware that they could become diseased years later.

Petros, as you said, you are very fortunate. Thanks for sharing your story.

 

[KWRice]

I wish there were a standard answer to your question, how do you get endocarditious? The truth is there are many ways and you may never truely know how you got it. My boyfriend had it and it lead to AVR and a root replacement as well. He was initially diagnosed with a staff infection, we do not know how he got that either! He began getting sick late one Saturday night and by Wed he was in the ER severly dehydrated and the Dr told us he would not have lived 2 more days. We don't know how or why he got it but he is very lucky to be alive and well today.

 

[Adrienne]

I've had two root canals jobs, wasn't aware that they could become diseased years later.

I've had three root canal jobs about 30 years ago. Two of them have recently had to be pulled because of infection (and one of them was also cracked). I will be getting implants soon.

The thing that is kind of scary with an infection that comes after a tooth has had root canal work done is that you don't get a tooth ache so you don't always know!

 

[olefin]

The thing that is kind of scary with an infection that comes after a tooth has had root canal work done is that you don't get a tooth ache so you don't always know!

So true about not having pain. Mine was discovered on a regular cleaning appointment. No telling how long I'd had the infection. I suspect mine is cracked and he's not able to see the crack.

 

[TakeStock]

Smiley, I had quite a lot of dental work in recent years but I hadn't been to a dentist in several months when I got endo last November. I got the same strep viridans that Adrienne had, probably also from a slight gum bleed, probably just from flossing. I had been using ACT Restoring mouthwash for a few weeks prior to the incident -- maybe a coincidence, but I won't go near the stuff now just to be safe. IE is just so unpredictable, I don't know that you can ever be 100% sure you won't get it no matter what you do. So might as well not worry too much about it.

 

[Diane]

I have been feeling bad.....lots of shortness of breath...... for over a week now. I am currently waiting for cultures for endocarditis to come back and praying that they are negative. If they are positive, I don't know how I got it. I had my routine dental cleaning a couple of months ago and I took my antibiotics. I was reading up on it and found that they frequently cannot idenify a souce of the infection.

~Diane

 

[tim893]

smiley i had a filling come out and didnt have the funds to fix my tooth so it took me several weeks to get it pulled. the dentist just broke the top off as it was hard tooth to pull and he didnt tell me he left the infected roots . then the headaches and and then the shakes and shivers i couldnt hold anything on my stomach the hospital said i had a kidney infection and trearted me for that and a couple of weeks later i went paralyzed on my left side and was taken to the hospital and went into a coma a couple of hours after i got there. also was having a seizure while i was in the coma . it took 8 days for them to diagnose me and do brain surgery to relieve the pressure. i had 3 surgeries to get it all. the dr first noticed my irregular heartbeat while i was in the hospital. and i was in there for 3 1/2 months on iv antibiotics the whole time. i thought mine was a 1 in a million story but i guess its not so rare i read that endocarditis can come from a tooth infection on a page about fused aotic heart valve leaflets.

 

[Nupur]

I find symptoms of endocarditis (rather lack of it) confusing and scary. From the first hand accounts of all of you who have had it, seems like fatigue and general sense of malady comes first, and it is easy to mis-diagnose it unless you do a blood culture. My cardio said something conflicting, that endocarditis is accompanied with high fever and it would be impossible to miss. Seems like if you wait to get to that high fever phase, it's pretty bad. But I am pretty sure if I went to either my PCP or cardio with fatigue and shortness of breath they won't recommend culture, they would simply dismiss it. Sometimes it scares me how much I have to advocate for myself to get the right treatment : )

Bill, did you suspect any link of ACT mouthwash with your endocarditis? I have a PerioRX mouthwash from my dentist that I use once in a while. My gums do bleed a little sometimes.

 

[Lynlw]

I find symptoms of endocarditis (rather lack of it) confusing and scary. From the first hand accounts of all of you who have had it, seems like fatigue and general sense of malady comes first, and it is easy to mis-diagnose it unless you do a blood culture. My cardio said something conflicting, that endocarditis is accompanied with high fever and it would be impossible to miss. Seems like if you wait to get to that high fever phase, it's pretty bad. But I am pretty sure if I went to either my PCP or cardio with fatigue and shortness of breath they won't recommend culture, they would simply dismiss it. Sometimes it scares me how much I have to advocate for myself to get the right treatment : )

Bill, did you suspect any link of ACT mouthwash with your endocarditis? I have a PerioRX mouthwash from my dentist that I use once in a while. My gums do bleed a little sometimes.

IT isn't always a high grade fever, it can also be a low grade fever that goes on for a while. Yes the symptons can be the same as for alot of things, Justin seemed like he had a res virus/cold, stomache ache, ect we went to the doc a couple times and they kept thinking since he was run down, he kept catching every thing going around.

 

[Diane]

I find symptoms of endocarditis (rather lack of it) confusing and scary. From the first hand accounts of all of you who have had it, seems like fatigue and general sense of malady comes first, and it is easy to mis-diagnose it unless you do a blood culture. My cardio said something conflicting, that endocarditis is accompanied with high fever and it would be impossible to miss. Seems like if you wait to get to that high fever phase, it's pretty bad. But I am pretty sure if I went to either my PCP or cardio with fatigue and shortness of breath they won't recommend culture, they would simply dismiss it. Sometimes it scares me how much I have to advocate for myself to get the right treatment : )

Bill, did you suspect any link of ACT mouthwash with your endocarditis? I have a PerioRX mouthwash from my dentist that I use once in a while. My gums do bleed a little sometimes.

Nupur,
I think it depends on your doctor and your risk factors. I have not had a fever. I actually only have 4 or 5 of the 12 to 15 symptoms that I found listed on Medline (I think that was the site I was on). But I have congenital heart disease and an artificial pulmonary valve. I emailed my symptoms (mainly fatigue that didn't go away after a couple of days of downtime, headache, and shortness of breath) to my doctor at Stanford Sunday evening. He had his NP call me 1st thing Monday morning and tell me that he wanted me to get blood cultures, an EKG, and a holter monitor. Since I don't live in the Bay Area, I had to go to my PCP to get the orders. He did not question me at all, he just ordered the tests. My doctor at Stanford has stayed in touch and in the loop via email. If you have some of the symptoms, even if they are the vague ones, I think you should let your doctor know if you have risk factors.

Also, I have used ACT rinse daily for several years and have never had a problem before now so personally, I would not blame the ACT rinse.

~Diane

 

[Bryan B]

I find symptoms of endocarditis (rather lack of it) confusing and scary. From the first hand accounts of all of you who have had it, seems like fatigue and general sense of malady comes first, and it is easy to mis-diagnose it unless you do a blood culture. My cardio said something conflicting, that endocarditis is accompanied with high fever and it would be impossible to miss. Seems like if you wait to get to that high fever phase, it's pretty bad. But I am pretty sure if I went to either my PCP or cardio with fatigue and shortness of breath they won't recommend culture, they would simply dismiss it. Sometimes it scares me how much I have to advocate for myself to get the right treatment : )

Bill, did you suspect any link of ACT mouthwash with your endocarditis? I have a PerioRX mouthwash from my dentist that I use once in a while. My gums do bleed a little sometimes.

The reason it may be confusing to you is that there are two different types of bacterial endocarditis...acute and subacute (which they now lump together and call infective endocarditis). The bacteria that causes acute endocarditis progresses rapidly and causes more destruction in a short amount of time. I had subacute endocarditis which seems to present itself more as a chronic illness and often mimics other illnesses, which makes it more difficult to diagnose.

It took my PCP 3 months before he finally diagnosed my endocarditis after presenting with progressively worse symptoms over that time. But in his defense he really was an idiot, so figuring it out in 3 months was probably pretty good for his level of competence. I even told him about 4 weeks before I was diagnosed that I thought I might have endocarditis because of my unrepaired VSD and AI caused by the VSD causing aortic valve prolapse. He would listen to my heart and say "you don't even have a murmur". Finally I was so sick I demanded that he do blood cultures on me. He did them on a Friday afternoon and called me on Sunday morning to tell me that they had already come back positive. Then he planned on just treating me with Cipro 750mg tablets but 2 days into that treatment I was getting really, really, really sick. I called him and told him to set up an echo for the next day. The echo showed that I had an abundant growth of vegetation on my aortic leaflets and I was admitted that same day. I went home 3 days later with a picc line and was on IV antibiotics for 7 weeks that I administered myself. I can still remember it...heparin flush, manually push the antibiotic in over a 10 minute timespan (50ml [Rocephin] that came in a 60ml syringe), saline flush.

 

[Smiley2000]

Thank you all for your stories and the info. Endocarditis sounds hectic and by the sound of it, it is just like any other illness: if it was meant to happen, then no matter what you do - you'll get it. Sad but true - that is just part of life.

Diana, I am praying for you that your tests will come back negative and that you'll feel better soon.

Hugs ( )

 

[Nupur]

Diane, let's hope your cultures come back negative. I am curious, you have a cardio at Stanford or you talked to the surgeon. If you have a cardio at Stanford, would you mind giving me the name? You can send me a PM.

Bryan, that's quite a story!

 

[Diane]

Nupur,
I have a cardiologist at Stanford. I haven't seen the surgeon since being discharged from the hospital after my surgery but I see the cardiologist annually. I sent you a PM with his name.

Good Luck....Hope you get some answers for your symptoms!

~Diane

 

[TakeStock]

Nupur, none of the doctors thought the mouthwash was related, but I'm still suspicious. Seems like anything that softens your gums could increase the possibility of bleeding. Of course even if your gums bled every day the odds of getting IE are probably very small, so no way to really know the culprit.

My symptoms when I got the infection included a fever around 101, not terribly high, an ear ache and what you generally feel like when you have the flu. It went away immediately when I took some normal antibiotics, but the one thing my PCP noticed that was different from a usual flu was a heart murmur that got stronger when I came back in a few weeks later when the symptoms re-appeared. But even then endocarditis seemed unlikely and wasn't confirmed until blood cultures weeks later.

 

[Lynlw]

IF anyone is interested in reading how devestating BE can be even when you survive, Read about Wendy's teen son Andrew and his experience IF this links doesn't go to a page of thread search Andrew +Wendy and read the posts starting May 07 thru july http://www.valvereplacement.com/forums/search.php?searchid=1569919&pp=25&page=2