What do you think caused your endocarditis?

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bdryer

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It's apparent to me that what ever your valve composition, we are all at risk of contracting endocarditis. It is discussed on this forum what valve may be the best bet for avoiding a reop, but, their is one equalizer and that is endocarditis. Most here are forewarned to take antibiotics before dental work. For those of you who have contracted endocarditis, what do think or know was the root cause?

Thanks
 
I was born with a bicuspid aortic valve with moderate stenosis. I followed up with my cardio until I was about 12 years old and never went back because I refused to go. My parents are great people but didn't understand the seriousness of the condition and allowed me not to continue follow ups with the cardio. Didn't see a cardio again until I was 26 years old. In between this time I've gotten fevers, colds, flu, strep throat several times including once where I had to get antibiotics shots in the ER when I was 16 years old because the sores on the back of my throat were bleeding. Beside that one trip to the ER I never went to the doctors to get antibiotics for anything.

In my late teens and early twenties I smoked marijuana everyday and experimented with methamphetamine socially both involve sharing smoking paraphernalia with many people, I understand it's not like sharing needles but still I'm putting my mouth on a pipe that many people have shared.

I've never went to the dentist until about 3 months ago when I had my teeth cleaned for the first time, 10 fillings put in, and one wisdom tooth pulled. I pre-medicated for each visit to the dentist except for the last filling I got about 3 weeks ago. My cardio told me that it wasn't necessary to pre medicate anymore.

Come to find out most people on this forum are advised to pre medicate for any procedure, I'm no longer seeing that cardio anymore anyway. My surgeon and his team suggest I pre medicate for anything I do period.

I can say I've been very lucky not to have gotten endocarditis with a valve in such bad shape. Best believe I'm pre medicating for anything I do from this point on!
 
Mine was caused by Staphylococcus Lugdunensis, a particularly nasty strain of staph. Only 1 day before my major flu like symptoms,I was walking the dog 2 miles and felt great. The symptoms for me came on so quickly, and of course, I was misdiagnosed in the ER as having the flu! I was never so sick as I was with this bacteria. So, all those yrs I never really knew the symptoms and assumed that if I took antibiotics before dental appts, I would avoid getting endocarditis! Staph. Lugdunensis lives on the skin of 30% of the population, and my infectious disease doc never came up with how I got it. He wondered if it was a mosquito bite! All I know is I had to be on IV antibiotics for a minimum of 6 wks along with oral Rifampin. Ugh! And it caused major anemia due to my damaged AV and MV. I had to have AV and old graft replaced and MV repaired. Surgeon decided a repair was fine after getting a good look at my MV. The staph was killed, thankfully.
Others on this site have only been on antibiotics for 4 wks so I guess it depends on the bacteria or maybe doctors preference?
 
Hi Julian,

Dude, you have gained my respect! Wow congratulations on reforming yourself and finding Christ! It's very interesting that someone living a high risk lifestyle managed to elude additional heart problems, other the an AV and ascending aorta issue. Thank you for your openness and honesty. You are truly an inspiration. I hope others living your past find this site and find hope in your posts.

Hi Gail,

On the other side of the coin we have you, who took great care in their health and contacted endocarditis.

A few of my fears and thoughts,

Contracting endocarditis is my biggest fear now that I have been through the repair process. I'm really considering quitting water skiing and windsurfing as we perform the sport in sloughs and reservoirs. They contain extremely high levels of bacteria and algae. At this point I'm sticking to swimming in pools 4-5 days a week for my water fix.

I'm taking wild oregano oil regularly, [have to consider my INR so being consistent] and high amounts or probiotics to hopefully protect myself from contracting endocarditis.
 
You don't have to have a replaced valve to get endocarditis. I had rheumatic fever as a kid that left me with a heart murmur and was told it put me at risk for endocarditis.

I had it in 1987; it was caused by strep viridans and have no idea how I got it. One day I woke up with a fever. It didn't go away after several days. Very long story short: I was misdiagnosed by several doctors, had the fever for 3 months, finally diagnosed correctly, 17 day hospital stay, 6 weeks IV antibiotics with a Hickman catheter.
 
Out of the blue!!

Out of the blue!!

Knowing I had a MV prolapse, I premedicated before dental appointments. However, on returning from a trip to Italy, I started to have a low-grade fever which continued and continued. Long story short, went to ER after 13 days and was diagnosed with sub-acute bacterial endocarditis caused by the strep virdans (sp?) bacteria which is a bacteria in the mouth. I remember seeing a spot of blood the first day in Italy when I brushed my teeth, but I am sure that happens to everyone from time to time. Maybe my immune system was weak since after a night flight to Italy, I didn't sleep for about 33 hours. Who knows?!

It was in the hospital for endocarditis that they started talking OHS!!:eek2: I was totally freaked out, got about 4 other opinions (if I had listened to the cardio I had at the time, I'd probably be dead). Finally, over a year afterwards, I had a very complicated MV repair!

It's true that now the protocol for premedicating has changed, and only higher-risk people like myself who have had endocarditis, have mechanical valves, etc are advised to premedicate. However, I believe they have changed the protocol thinking of the population as a whole and the cost-risk benefits, etc. As an individual who has gone through endocarditis, I believe that the old protocol should apply!!!
 
I missed this earlier in the week, but thanks for starting this thread. Good word choice to use the term "equalizer" too, as in my understanding also, it's generally considered to be equal risk for both tissue and mechanical valves (1.2% is the risk per year indicated for both types in the FDA Objective Performance Criteria for valve approval). I found these endocarditis related guidelines a few months ago when I was researching prior to my first post-surgery dental appointment:

http://circ.ahajournals.org/content/116/15/1736.full.pdf
http://content.onlinejacc.org/cgi/reprint/52/8/676.pdf
 
6 weeks out of surgery I developed endocarditis - Staphylococcus. It was discovered when I went for my 6week echo and they found a vegetation spot on my new valve.
8 weeks of iv antibiotics, vancomycin and oral rifampin. I developed an allergic reaction to the vacomycin so they changed it to cloxacillin about 2 weeks into my iv treatment. My cardiologist told me it was due to my surgery. I believe it was caused from the infection I developed when they did my angiogram about a month prior to my surgery. This is picture of what my arm looked like after the angio. I developed an infection from the arterial tear they said I had.. it was not fun... :mad:
 

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ElecLive

Without any question, endocarditis is the great equalizer. I work with guy who in his 20's had his bicuspid AV replaced with a St Jude MHV. He contracted endocarditis during the SARS outbreak/scare. Consequently, his lab results were delayed and the disease progressed to the point where his new AV had to be replaced. The surgeon replaced it with get this....a tissue valve! Do not know the logic as to why a tissue valve was chosen. This individual knows he will need a another reop. I'm certain I will convince him to have an On-X implanted. LOL!
 
Great posts gang!

Adrienne, what was the time frame from when you had your surgery to when you contracted endocarditis?

Is their a period post op where we are more susceptible to contracting the disease?
 
I didn't have any problems with my heart, no rheumatic fever, nothing. Then I had lithotripsy treatment on kidney stones without any anitbiotic cover, I had three treatments and just before the second one they recalibrated the lithotriptor and I bled as it was so fierce. Eleven days later I became ill and had no idea what it was, the initially illness lasted about ten days then after that I wasn't acutely unwell, just off-colour. It was two and a half months before I had a stroke which turned out to be some vegetation breaking off and travelling to my brain.

Six weeks in hospital on intravenous antibiotics, then after discharge I soon went into heart failure and then had my aortic and mirtal valves replaced.

I really do not want endocarditis again, it wasn't nice. :)
 
I work with guy who in his 20's had his bicuspid AV replaced with a St Jude MHV. He contracted endocarditis during the SARS outbreak/scare. Consequently, his lab results were delayed and the disease progressed to the point where his new AV had to be replaced. The surgeon replaced it with get this....a tissue valve! Do not know the logic as to why a tissue valve was chosen.

I sure hope they didn't go tissue only thinking less chance of future endocarditis. My surgeon told me that at one time (but not anymore) that was the thought, that tissue valves were less susceptible to endocarditis.
 
According to my infectious disease doctor it was caused by chronic bronchitis. It took the doctors 2 months to knock out the bronchitis and 3 months to diagnose that I had encodarditis. I was born with a large VSD that was causing one of my aortic valve leaflets to prolapse and that is where the vegetation set up shop. I told my doctor at least a month in advance that i had the same symptoms as endocarditis but he didn't listen. Finally i was so sick I talked him into doing blood cultures on me on a Friday afternoon. He actually called me on Sunday morning to tell me that they had already come back positive in 24 hours. I had an echo on Tuesday afternoon which confirmed it. I was admitted on the spot and was in the hospital for 3 days during which time they placed a picc line. I was on IV Ceftriaxone (Rocephin) 2gm daily for 7 weeks which cleared it up. I gave the IV premixed syringes myself and had a home health nurse come by once a week to check on my picc line and change the dressing. The next month I had a followup with my cardiologist and he said the already leaky valve was leaking worse due to the perforations the vegetations had caused on my leaflets. I had surgery 2 months later.

You know that long health history questionnaire you fill out the first time you see your doctor? The one where I listed my congenital heart defect, complications from it which caused aortic regurgitation, and the 3 cardiac catheterizations I had. That must have not rung a bell in his head. He must not have taken me serious when I told him i was having endocarditis like symptoms. He even said that i did not have any heart murmurs until the day the echo showed the vegetations, then he said he could hear one. Don't ask me why I didn't go to a cardiologist for a 2nd opinion but at the time I didn't have one and I honestly thought this doctor was doing everything possible to treat me and find out the problem. Costly mistake on my part as I have had 2 OHS's since contracting the endocarditis.
 
About 6 months after my AVR, I developed an antibiotic resistant bacterial infection which my family doctor said could cause endocarditis. She then began an aggressive treatment and stopped the infection. She reminded me at the time that the incision site in my heart and, in my case, the valve leaflets could be damaged. Although mechanical valves are not themselves susceptible to infection, the surgical site where they were attached is at increased risk. As well, she and my Dentist say that antibiotics are needed before any dental work including cleaning since there is a higher risk of infection through the mouth than through the skin.

Larry
 
all of you guys on this thread seemed to have been on some pretty strong antibiotics, have you all ever had any problems with being on so many for such a long period of time, and it also seems like you have been on some pretty strong ones even combinations of them, and you seem to be fine. im always so worried, i just want to calm down some. i have a lot going on. lots of people to take care of. adam on zithromycin and needs to pre med for a root canal. thanks any input appreciated.
 
Knowing I had a MV prolapse, I premedicated before dental appointments. However, on returning from a trip to Italy, I started to have a low-grade fever which continued and continued. Long story short, went to ER after 13 days and was diagnosed with sub-acute bacterial endocarditis caused by the strep virdans (sp?) bacteria which is a bacteria in the mouth. I remember seeing a spot of blood the first day in Italy when I brushed my teeth, but I am sure that happens to everyone from time to time. Maybe my immune system was weak since after a night flight to Italy, I didn't sleep for about 33 hours. Who knows?!

It was in the hospital for endocarditis that they started talking OHS!!:eek2: I was totally freaked out, got about 4 other opinions (if I had listened to the cardio I had at the time, I'd probably be dead). Finally, over a year afterwards, I had a very complicated MV repair!

It's true that now the protocol for premedicating has changed, and only higher-risk people like myself who have had endocarditis, have mechanical valves, etc are advised to premedicate. However, I believe they have changed the protocol thinking of the population as a whole and the cost-risk benefits, etc. As an individual who has gone through endocarditis, I believe that the old protocol should apply!!!

Adrienne, I'm sure that any "valver" who's lived through endocarditis would be tempted to support the old protocol, but I think it's just as easy to see your case as support for the NEW one! Heck, you were following the old protocol when you got the endocarditis, right? That's one of the main bases for the new protocol -- the realization that there's virtually no evidence of any BENEFIT from all that pre-medication! And (I think) we know that additional use of antibiotics increases the risk of dreadful antibiotic-resistant infections, both to the person who takes the antibiotics, and to the rest of us.

So sure, the consequences of getting endocarditis are serious, but (a) the consequences of getting antibiotic-resistant endocarditis is even way worse, and (b) pre-medicating before dentists' visits SOUNDS like it should cut down the incidence, but it's never been shown to do that.

BTW, my Dad had several bouts with endocarditis, probably largely due to rheumatic fever when he was a kid (though he thought it came from a sloppy dentist). He was not a valver. The endocarditis almost got him, in his 80s, before somebody noticed the rheumatic fever in his medical history. 6 weeks with a PIC line cleared it up each time, and he was pretty healthy 'til very near the end, at 98.

The "Gold Standard" article from Toronto's UHN cardiac center (ATS 2010, Tirone David et al -- ats.ctsnetjournals.org/cgi/content/abstract/90/3/775? ) indicates that they now take a much more pro-active approach to HVR patients with endocarditis. They no longer start with weeks of intravenous antibiotics before re-operating, because the mortality rate is much higher than among the patients where they operate promptly. The article was about the Hancock II porcine valve, but the authors refer more generally to their "aggressive approach in the treatment of prosthetic valve endocarditis", which I take to refer to all their HVR patients.

BTW, they list their post-HVR endocarditis stats as a "freedom from endocarditis in this cohort . . . [of] 94.5% +/- 1% at 20 years. They also present it as a "linearized rate of prosthetic valve endocarditis [of] 0.39% per year. Those numbers are quite a bit lower than FDA's 1.2% per year -- or maybe FDA's number is an upper limit of acceptability for approval?
 
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BTW, they list their post-HVR endocarditis stats as a "freedom from endocarditis in this cohort . . . [of] 94.5% +/- 1% at 20 years. They also present it as a "linearized rate of prosthetic valve endocarditis [of] 0.39% per year. Those numbers are quite a bit lower than FDA's 1.2% per year -- or maybe FDA's number is an upper limit of acceptability for approval?

The OPCs are based on average complication rates of all previously approved heart valves: http://ats.ctsnetjournals.org/cgi/reprint/82/3/776.

But, based on what I remember of several current valve models, tissue and mechanical, their own literature/studies have all seemed to indicate less than 1% per year, some less than 0.75%.
 
Adrienne, I'm sure that any "valver" who's lived through endocarditis would be tempted to support the old protocol, but I think it's just as easy to see your case as support for the NEW one! Heck, you were following the old protocol when you got the endocarditis, right? That's one of the main bases for the new protocol -- the realization that there's virtually no evidence of any BENEFIT from all that pre-medication! And (I think) we know that additional use of antibiotics increases the risk of dreadful antibiotic-resistant infections, both to the person who takes the antibiotics, and to the rest of us.

So sure, the consequences of getting endocarditis are serious, but (a) the consequences of getting antibiotic-resistant endocarditis is even way worse, and (b) pre-medicating before dentists' visits SOUNDS like it should cut down the incidence, but it's never been shown to do that.

BTW, my Dad had several bouts with endocarditis, probably largely due to rheumatic fever when he was a kid (though he thought it came from a sloppy dentist). He was not a valver. The endocarditis almost got him, in his 80s, before somebody noticed the rheumatic fever in his medical history. 6 weeks with a PIC line cleared it up each time, and he was pretty healthy 'til very near the end, at 98.

The "Gold Standard" article from Toronto's UHN cardiac center (ATS 2010, Tirone David et al -- ats.ctsnetjournals.org/cgi/content/abstract/90/3/775? ) indicates that they now take a much more pro-active approach to HVR patients with endocarditis. They no longer start with weeks of intravenous antibiotics before re-operating, because the mortality rate is much higher than among the patients where they operate promptly. The article was about the Hancock II porcine valve, but the authors refer more generally to their "aggressive approach in the treatment of prosthetic valve endocarditis", which I take to refer to all their HVR patients.

BTW, they list their post-HVR endocarditis stats as a "freedom from endocarditis in this cohort . . . [of] 94.5% +/- 1% at 20 years. They also present it as a "linearized rate of prosthetic valve endocarditis [of] 0.39% per year. Those numbers are quite a bit lower than FDA's 1.2% per year -- or maybe FDA's number is an upper limit of acceptability for approval?

Justin had BE when he was 11. His was most likely caused by losing a baby molar. (which BTW even if you already had several heart surgeries as a baby/child you don't get antibiotics for loosing baby teeth, first because it is very rare to get BE from losing them, and you would pretty much be on antibiotics for years once you start losing baby teeth)
He had 6 weeks of both vacomycin and gentomycin, IV every 8 hours, that like bryan once he was discharged from the hospital, we (including Justin with one of us watching, since they taught him how in the hospital) did all the IVs and had a home nurse stop by every few days to check things out, change the dressings etc. he didn't need surgery.

I'm curiouss are you just taking from the statement "aggressive approach in the treatment of prosthetic valve endocarditis" that they "They no longer start with weeks of intravenous antibiotics before re-operating, because the mortality rate is much higher than among the patients where they operate promptly" or do you know that as a fact, were told by your doctors? Because I find that hard to believe, I'm pretty sure treating aggressively doesn't always mean operate right away, since many people (about 1/2 longterm,) never need surgery and IF possible it is often/usually? safer to operate after the bacteria have been killed for lack of a better word, instead of operating with an active infection that could bring about spreading of the bacteria during surgery. Sometimes of course you need to operate right away depending on a few things, but to me agressive probably falls somewhere between JUST antibiotics and surgery right away, in many patients weeks of IV followed by surgery can be aggresive. Most doctors I've talked to as well as studies I've read tend to go along with this article on CCF http://my.clevelandclinic.org/heart/disorders/valve/sbesurgery.aspx as far as treatment and when to operate IF you need to.
 
Lyn, there's some vagueness in the language of the article, but I think my inference is reasonable. Here's some of the language:
There were 41 episodes of prosthetic valve endocarditis: 16 patients were treated surgically, and 1 died; 25 were treated medically, and 13 died during antibiotic treatment. . .
And in the later passage where they talk about their "aggressive approach in the treatment of prosthetic valve endocarditis":
Survival was poor if patients were treated with antibiotics alone. Most patients referred back to our institution had repeat operations, and only 1 of 16 died. During the past 2 decades, we have adopted an aggressive approach in the treatment of prosthetic valve endocarditis, but the outcomes remain largely dependent on the patient's clinical status when the operation occurs [11]."
The footnote refers to a 2007 article by David TE et al in Thorac Cardiocvasc Surg called "Surgical treatment of active infective endocarditis: a continued challenge".

Like you, I wondered how wise it would be to operate on somebody who still has active infective endocarditis; it sounds messy and dangerous. But it seems that they're doing exactly that, and getting much better survival results than from weeks of IV antibiotics, hence the "aggressive approach in the treatment of prosthetic valve endocarditis". I don't know if they still wait for (say) ONE week of IV antibiotics before they operate, but it sounds like they don't wait long, or as long as they used to, or as long as most other hospitals do. (The 2007 article may answer all these questions.)

Another interesting variable is WHERE the endocarditis patients in the cohort were treated. It sounds as if all the reops (including some of the mortalities) came back to UHN, and at least some or many of the non-ops went to other hospitals. That may or may not be important, but it's certainly not the same kind of "controlled" "one-center" study as the initial HVR.
 
Lyn, there's some vagueness in the language of the article, but I think my inference is reasonable. Here's some of the language:
And in the later passage where they talk about their "aggressive approach in the treatment of prosthetic valve endocarditis": The footnote refers to a 2007 article by David TE et al in Thorac Cardiocvasc Surg called "Surgical treatment of active infective endocarditis: a continued challenge".

Like you, I wondered how wise it would be to operate on somebody who still has active infective endocarditis; it sounds messy and dangerous. But it seems that they're doing exactly that, and getting much better survival results than from weeks of IV antibiotics, hence the "aggressive approach in the treatment of prosthetic valve endocarditis". I don't know if they still wait for (say) ONE week of IV antibiotics before they operate, but it sounds like they don't wait long, or as long as they used to, or as long as most other hospitals do. (The 2007 article may answer all these questions.)

Another interesting variable is WHERE the endocarditis patients in the cohort were treated. It sounds as if all the reops (including some of the mortalities) came back to UHN, and at least some or many of the non-ops went to other hospitals. That may or may not be important, but it's certainly not the same kind of "controlled" "one-center" study as the initial HVR.

I'm glad I asked, I thought maybe since you've said a few times now that they dont start with antibiotics, but go right to surgery-that maybe you had talked to your doctors since your earlier posts so knew that for a fact, and were just quoting the study more or less as an example. If you had talked to the doctors and were told that, it would have helped, but I think knowing it is just your thoughts or opinion from reading that study, that they don't start with weeks of antibiotics, and only operate,( immeadiately or after antibiotics,) on patients that meet certain criteria like CCF listed, but instead go right to surgery.

The reason I'm asking is I'm sure people who have to make decisions on their treament IF they are diagnosed with BE (or IE), weigh things they've read here with what their doctors reccomend, just like every other decisions about surgery, valve choice etc, so if Toronto does things differently than most of the other centers and guidelines, AND are having better results that would be good to know when weighing options, but if their "aggressive treatment" pretty much is the same as other large centers that basically follow the criteria regarding IF/when to operate, how aggressive to be when decidng how much tissue to remove during surgery, which meds for how long etc, depending on which bacteria, valve, comorbities like the CCF link above, that MIGHT make decisons a little easier or at least get rid of some of their doubts about what to agree to.

Yes I read that study, as you said it is vague about the treatment for the patients with BE, which makes sense since it is about the valve and that group of patients outcomes and not BE treatment, so for this study the important part is the number of patient w/ BE and the different outcomes and any other causes of complications or deaths.
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It's funny how different people can take different ideas away from reading the same thing, and I might be completely wrong, but In My opinion the word "alone", is important in this sentence "Survival was poor if patients were treated with antibiotics alone." and it doesn't say WHEN the 16 patients had their surgery, so I don't know that I personally would assume it was soon after diagnosises or when the infection was still active, especially since the results were so good,- even compared to the stats for their paper on surgery with ACTIVE infection, that you had quoted before http://www.valvereplacement.org/for...-in-three-years-age-64&highlight=endocarditis and wonderred why the survival stats were worse in the 07 paper.

I still haven't read the entire 07 study, I'll try to later, hopefully it will answers some of the questions
 
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