What do you think caused your endocarditis?

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my story

my story

Hi all, I'm a newbee here. I chose this thread to introduce myself as it relates to my story. 1 year ago I was diagnosed with rheumatoid arthritis. The treatment for this is immunosuppresants. In the time since then I've been to the dentist a few times (did tell him of the meds I was on especially when I was started on methotrexate) he told me that antibiotics were not required. I have always lead a active life, I figure skated all my life and race 4x4's as an example) In April I started going to our local pool for therapy and to get into better shape as it was the best form of exercise to lower impact on my joints. about 2 weeks into April I started getting very short of breath. I just thought it was because I was really out of shape through inactivity. around the 15th I was at the Dr, for the Methotrexatre shot and told him about the shortness of breath and he listened to my chest and gave me a asthma puffer. On the 18th it was so bad that I had been sleeping sitting up for 2 nights on the sofa so I went to emerg, thinking it might be a bad bout of asthma and needed to be put on the nebulizer. After being seen in emerg things started to move prety quick. I was admitted and they did an echo. Next thing I knew I was told it was my heart and was sent by ambulance to Royal Jubilee hosp. in Victoria 2 hours away. It was quite a shock let me tell you! several days and MANY tests later they tell me that one lobe of my aortic valve is prolapsed, they suspect infective endocaditis and schedule me for valve replacement on April 29th (my 51st birthday) after surgery the surgeon says he found the vegitations (almost missed them) and they had done cultures on them. after 5 days it turned out to be P. acne. The doctors I've asked seem reluctant to blaim the dentistry, but I do.
Oh well, that's life and we move foreward, Right!
So after OHS and 6 weeks with a PICC line on penecillin here I am. I'm over the worst of it now I hope :/ I can now ride the quad and just got back from camping on the river in Port Albeni, Life is good. :cool:

Please excuse or correct all spelling errors!
 
I recently heard of someone outside the U.S. who had SBE 1 year ago and had to have TWO heart valves replaced (got mechanicals).
Seven years ago his kidneys suddenly shut down (approx. age 45) and he was on dialysis for 5 years. Got kidney transplant 2 years ago. One year to the day of his transplant he had endocarditis.
 
I recently heard of someone outside the U.S. who had SBE 1 year ago and had to have TWO heart valves replaced (got mechanicals).
Seven years ago his kidneys suddenly shut down (approx. age 45) and he was on dialysis for 5 years. Got kidney transplant 2 years ago. One year to the day of his transplant he had endocarditis.

Wow he's either really lucky..or unlucky dependig how you look at it. I hope he is medical problem free for a very long time
 
What is going on now? Endo again?

What is going on now? Endo again?

My husbands one year anniversary is coming up in September. He contracted endocarditis on Sept. 11, 2010. His blood cultures and heart valves both confirmed that it was MRSA(staph) infection. We do not know where he got it from except that from what docs said it can be from anywhere, most likely a cut on his skin. We were completely taken off guard and it seemed like he has the flu. After a few days in bed he was becoming more immobile. He suffered from multiple organ damage, strokes and finally surgery of aortic root replacment and bicupid valve. His journey has not been an easy one. Needed rehab for several months. PICC line for 6 weeks. In May he started to get a rash on his knees which then traveled to his legs, it is called livedo riticulars(?). He was admitted back into the hospital and tested the rash with a culture and then took a million blood tests as well as cultures. He was checked for lupus and other autoimmune diseases which has come back negative. Cultures were negative. After release we had a quiet week until he started with night sweats and low grade fevers of 99.5-100. Back to the doctor to find out that he had strep throat. In July dealt with low grade fever of about 99.5 but blood work look good. Had an echo done last week and everything checked out good. Back in three months. My question is has anyone had this type of difficulty? Sounds a lot like sub acute. He is 45 years old and was never sick before. He is back to work and starting to do other things but very frustrated and worried. Biggest complaint is fatigue! Love to hear from anyone. Jean
 
Mine was caused by haemophilus influenzae - it showed up as gram negative bacteria initially and took about three months to identify. I have *no* idea how I got it -- I live in the city, so I'm sure that there's a mix of germs out there. My teeth are perfect and I've never used heavy drugs. Needless to say, I use lots of Purell now. I learned that I had a bicuspid valve, so there's that.

The day before I became sick, I was at a weight lifting seminar, feeling great. I went home and felt a little weird, like someone was punching me in the head, or brain shocks. I take anti-depressants and it felt as if I forgot to take mine that day, so I wasn't concerned. Day after, I woke up so cold that I couldn't get out of bed to get more blankets -- then so hot that I soaked my sheets with sweat. In the afternoon, my temperature went away completely. Since it was the weekend, I didn't do anything that took much energy, though on Sunday I cleaned my kitchen for an hour and felt so tired after that I needed a nap. Weird.

Tuesday, I feel okay in the morning, so I make my way to work via subway, but start getting the shivers at a station where I was switching to a different line. I was somewhat delirious at the time and figured that I should make my way to work, tell my boss that I needed to go home, then go home... silly of me, huh? Anyway, my train that heads home came, and so I hopped on. Went into town, went to a CVS to see if they had any thoughts, but I guess due to legal reasons they could only direct me to the ER or my doctor. I walked a good mile to find a cab in freezing cold weather, went to the hospital, and felt warm again, so figured that they would laugh at me and let me out with liquids etc.

Anyway, the next day I was admitted to the ICU because I was coughing up blood. I was put into a medical coma for three days because my lungs were filling with blood and I couldn't breathe. The doctors told my parents that I was in critical condition and to be ready for anything..... ugh. I woke up eventually, but during my time out cold, they found signs of a small stroke in an MRI that they did. So, the diagnosis was made and I was put on antibiotics. I couldn't do a thing for a couple of weeks - had a picc line put in and was released from the hospital for six weeks of antibiotics and a follow-up with my now-surgeon. It turned out that I had an 8mm hole in my heart.

Sorry for the wall of text, but it's interesting how it all ended up. I feel lucky.
 
Lynlw and I had a back-and-forth about the benefits of (and the use of) an aggressive "shoot first and ask questions later" approach to treating Bacterial Endocarditis among tissue-valve recipients. At the end of it, I think we agreed to disagree about (1) how quickly Toronto General Hospital's Cardiac Centre generally operates on such BE patients and (2) whether operating (to excise/debride/replace the infected tissue) might be beneficial, rather than waiting for one or more weeks of intravenous antibiotics.

I just tripped over a newer article that may shed some light on that scary-but-important issue: "Surgery ups survival in infective endocarditis with HF of any severity: International study", at http://www.theheart.org/article/131...medium=email&utm_source=20111124_EN_Heartwire .

Looking at 4075 BE patients with symptoms (HF = Heart Failure), but including the most minor category = NYHA class 1-2, they found that surgery was associated with a 50% drop in mortality at 1 year, compared to antibiotics without surgery.

This was a retroactive survey, so the patients weren't randomly streamed into surgical and non-surgical groups (and I don't ever expect to see that kind of a study done!). So the differences may well NOT be purely caused by the difference in treatments -- e.g., younger patients were more likely to get surgery, and were also more likely to survive.

But the authors suggest -- like the Toronto/TGH authors of the "Gold Standard" study I quoted above -- that fewer BE patients would die if surgery were more widely used.

There's another aspect of this survey that seems counter-intuitive to me. If BE patients in some surveyed hospitals were put on IV antibiotics, and some responded/recovered and some didn't, I'd expect the hospitals to operate primarily on the more critical patients -- those that were not getting cured by the IV antibiotics alone. With that kind of non-random selection, I'd expect to see close to 100% survival rate among the non-surgical patients, and much worse among the surgical ones -- but the results were the opposite, and strongly so. Either there are a lot of uninsured patients going without surgery because they can't afford it, or some of the surveyed hospitals are joining TGH in operating before waiting for the antibiotics to finish their work, or something else is going on, IMHO.

It's also worth noting that the survey sample included many patients who had NOT had any valves replaced. My impression is that BE is even scarier for us than for them -- hence (e.g.) the prescription for us to pre-dose with antibiotics before dental procedures. . . If that's right, then it would probably suggest that an even higher rate of surgery for BE would save our lives.
 
Lynlw and I had a back-and-forth about the benefits of (and the use of) an aggressive "shoot first and ask questions later" approach to treating Bacterial Endocarditis among tissue-valve recipients. At the end of it, I think we agreed to disagree about (1) how quickly Toronto General Hospital's Cardiac Centre generally operates on such BE patients and (2) whether operating (to excise/debride/replace the infected tissue) might be beneficial, rather than waiting for one or more weeks of intravenous antibiotics.

I just tripped over a newer article that may shed some light on that scary-but-important issue: "Surgery ups survival in infective endocarditis with HF of any severity: International study", at http://www.theheart.org/article/131...medium=email&utm_source=20111124_EN_Heartwire .

Looking at 4075 BE patients with symptoms (HF = Heart Failure), but including the most minor category = NYHA class 1-2, they found that surgery was associated with a 50% drop in mortality at 1 year, compared to antibiotics without surgery.

This was a retroactive survey, so the patients weren't randomly streamed into surgical and non-surgical groups (and I don't ever expect to see that kind of a study done!). So the differences may well NOT be purely caused by the difference in treatments -- e.g., younger patients were more likely to get surgery, and were also more likely to survive.

But the authors suggest -- like the Toronto/TGH authors of the "Gold Standard" study I quoted above -- that fewer BE patients would die if surgery were more widely used.

There's another aspect of this survey that seems counter-intuitive to me. If BE patients in some surveyed hospitals were put on IV antibiotics, and some responded/recovered and some didn't, I'd expect the hospitals to operate primarily on the more critical patients -- those that were not getting cured by the IV antibiotics alone. With that kind of non-random selection, I'd expect to see close to 100% survival rate among the non-surgical patients, and much worse among the surgical ones -- but the results were the opposite, and strongly so. Either there are a lot of uninsured patients going without surgery because they can't afford it, or some of the surveyed hospitals are joining TGH in operating before waiting for the antibiotics to finish their work, or something else is going on, IMHO.

It's also worth noting that the survey sample included many patients who had NOT had any valves replaced. My impression is that BE is even scarier for us than for them -- hence (e.g.) the prescription for us to pre-dose with antibiotics before dental procedures. . . If that's right, then it would probably suggest that an even higher rate of surgery for BE would save our lives.

First it is always good to read results from different studies and treating BE in different cases or groups of patients, like this one on people in heart failure. Its helps to know what they found worked best in these groups with heart failure. Luckily many people aren't in HF when their BE is diagnosed
.
To be clear I never said BE shouldn't be treated "aggressively" or that surgery wouldn't/isn't beneficial for valve patients, what I've said all along, is there is a huge difference between JUST antibiotics or "don't bother" waiting for antibiotics to work, operate right away on all patients -and my opinion is most people fall in between, usually starting with antibiotics and then IF NEEDED have surgery. I've also questioned if you knew that for a fact or just your interpritation from that mention in the hancock study, that toronto operates on all the BE patients right away or even operate much sooner than other hospitals

I've also said that i would NOT take from that couple sentences in the 'gold standard' that Toronto "doesn't start with antibiotics, but go right to surgery" when they talk about treating BE "aggresively" but aggressive includes a broad range of treatment, depending on the patients, as I quoted from CCF on treating BE aggresively. BE treatment depends on SOO many things its hard to look at it as black or white, antibiotics ALONE or surgery right away for everyone, it depends on the comorbitities, how much growth, the bacteria or fungus etc. and many people who have it bad spend weeks or months in the hospital, so even if they do have surgery the frst admission, it Could mean after weeks of antibiotics in many cases.

from post 18
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/...besurgery.aspx as far as treatment and when to operate IF you need to. "

I did manged to read the 2007 study from toronto that you mentioned and I said Id read
"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 stats were much worse in the 07 paper."

but the intro says

"Appropriate antibiotic therapy is the most important component in the treatment of patients with infective endocarditis.1 Depending on how promptly the disease is diagnosed and appropriate antibiotics are started, on the virulence of the microorganism, and on whether the infected valve is native or prosthetic, surgery may become indispensable to save the patient’s life and eradicate the infection. Timing of surgery is crucial for patients for whom medical therapy fails. Delaying surgical treatment often increases the probability of complications and also operative mortality and morbidity."

Then under materials it has
.. review of the cardiac surgery database of Toronto General Hospital disclosed 383 patients who underwent surgery for active infective endocarditis from 1978 to 2004. Because the database did not contain all pertinent information for this disease, the hospital medical records were also reviewed to confirm the diagnosis and the indications for operation and to identify the microorganisms. The indications for surgery were one or more of the following factors: cardiogenic or septic shock in 53 patients (14%), congestive heart failure in 210 (55%), paravalvular abscess in 81 (21%), systemic or cerebral thromboembolism in 45 (12%), persistent sepsis in 72 (19%), and large vegetations in 39 (10%). ..."

which is basically the same list as CCF has listed for people who need immediate surgery. It would have been helpful to know the total number of cases of patients who were treated for BE in that 27 years so we'd know how many/if any patients were just treated medically or had surgery after the infection was cleared up..but since it is just about how complicated/high risk surgery is for ACTIVE BE, it makes sense they would only discuss those patients

Then under "discussion" it says

..Although cardiac surgery is necessary in fewer than a third of patients who have infective endocarditis of native valves and fewer than half of those with prosthetic valves,6-9 a multidisciplinary approach is necessary to treat these patients and must involve at least specialists in infectious disease, cardiology, and cardiac surgery.10 The indications for and timing of surgery are still controversial among internists who treat these patients, and the input of a cardiac surgeon is needed if mortality and morbidity are to be reduced.10,11 Close surveillance of these patients is indispensable to detect early failure of adequate antibiotic therapy to avoid cardiogenic or septic shock and multiorgan failure...

Also about your thoughts on this new study and
There's another aspect of this survey that seems counter-intuitive to me. If BE patients in some surveyed hospitals were put on IV antibiotics, and some responded/recovered and some didn't, I'd expect the hospitals to operate primarily on the more critical patients -- those that were not getting cured by the IV antibiotics alone. With that kind of non-random selection, I'd expect to see close to 100% survival rate among the non-surgical patients, and much worse among the surgical ones -- but the results were the opposite, and strongly so. Either there are a lot of uninsured patients going without surgery because they can't afford it, or some of the surveyed hospitals are joining TGH in operating before waiting for the antibiotics to finish their work, or something else is going on, IMHO''

My GUESS for the difference, is there are mainly 2 groups of people with BE that JUST are treated with antibiotics alone. Those who are diagnosed very early, before they are very sick and respond well to the antibiotics so dont have any perm damage or ongoing infection go home after a week or so with antibiotics and live happily ever after.

Then there is the other end of the spectrum, the patients who get hit very hard and fast or who by the time they are diagnosed with BE they are in such awful shape they are too sick for surgery, either because they already have a few medical problems making them high risk or several organs take a hit etc, so they start medical treatment in the hope to get them "healthy" enough to be able to survive a major surgery, many times they never get to that point and die before they can get to the OR so they fall under the just medical treatment deaths.
 
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Lyn, I think your guess (about how to resolve the paradox I found counter-intuitive) makes sense. OTOH, wouldn't that explain the high rate of survival for those with severe HF, more than for those with mild (class 1 or 2) HF? One of the surprises in this last study is that the surgical group had better survival even with mild HF (and despite the mortality risk of the surgery itself).

I hope I never suggested that aggressive treatment meant withholding massive doses of antibiotics from BE patients. Of course, that would be started on admission. But my reading of all the studies suggests that -- even for NON-HVR patients -- the recent trend in BE treatment, based on the survival evidence, is to operate more frequently and more quickly than before (and more than presently, at least in many places). The simple decision to include a SURGEON in the initial team that's discussing a BE patient's treatment options could be "political dynamite" in some hospitals, I bet! All the studies show that the surgical rate is alheady higher for us HVR folks than for other BE patients, and I expect it to go even higher, based on the evidence that seems to continue to accumulate.

NB that this latest study showed unusually high surgical rates. Logically, the centers that do more BE surgery than average should be bumping up against the limit, with diminishing returns or even net costs. But instead, they showed a big benefit, extending farther down the scale of symptoms (HF) than they expected. Again, that suggests to me that this trend toward aggressive BE treatment, especially for us HVR types, will and should continue. (If I'm unlucky enough to get BE and get treated at Toronto General, I am expecting to be told -- while I'm on antibiotics, of course! -- that they'd like to "go in" and "clean it out".)

BTW, I think there's a good reason to EXclude patients (from this analysis) whose BE is completely cured by antibiotics alone. Any of those patients who get OHS aren't getting it to treat their BE, but to repair damage that "happened to be" caused by BE, and I think that's for ANOTHER study.
 
I am not sure if I actually have had endocarditis. I think I have because I dont see any other way I could have gone from being a healthy guy to being a heart patient with a severely leaking aortic valve. Now about 2 years ago, I was working in Singapore for about a year. Ever from arriving in Singapore I remember having an awful cough which lasted for months. I have a history of sinus infections and thought another sinus infection was surfacing. I went to see doctor's several times and have been put on antibiotics. This time however the antibiotics did not help much and the cough/sore throat seemed to last forever. Eventually I think the symptoms disappeared. A little later in the year I remember getting sick. I was sicker than I had ever been. High fever, chills and I was lying shaking on bed. I lived alone and was really worried as I was shaking too hard to be able to dial a number on my phone. Went to see a doctor several times but no real diagnosis was made. I am actually not sure I got antibiotics or not. Normally I tell my doctor I dont want to overuse antibiotics as I have had a lot in my life already. I remember having a blood test and from the blood test the doctor could tell me I had a bacterial infection. Eventually I got better and never gave it much thought. Now looking backwards, after this point I noticed somethings being different with my heart. One time during boxing excercise I got a remark from someone that she could see my heart pound in my chest. A few times I felt stressed and I seemed to feel some discomfort on my chest. I thought I was just more stressed than ever before. When my assignment in Singapore was over I remember getting very excited at the airport over something and noticed my heart was pounding like crazy. When I arrived back in Thailand I went for my yearly medical check up. Here is where they noticed my extremely low diastolic blood pressure and eventually found that I had a moderately/severe leaking heart valve. It was quite a shock as I had never had any symptoms like real chest pain or getting tired easily. I stopped my boxing and changed into doing motocross as it is less intensive. About one year later, still without real symptoms, my valve was found to be leaking severly and I was up for surgery. Up until today I still dont know I had endocarditis but looking back at what happened in Singapore I think I did. Anyone has an opinion on whether this has been endocarditis or not?

regards,

jarno
 
I am not sure if I actually have had endocarditis. I think I have because I dont see any other way I could have gone from being a healthy guy to being a heart patient with a severely leaking aortic valve. Now about 2 years ago, I was working in Singapore for about a year. Ever from arriving in Singapore I remember having an awful cough which lasted for months. I have a history of sinus infections and thought another sinus infection was surfacing. I went to see doctor's several times and have been put on antibiotics. This time however the antibiotics did not help much and the cough/sore throat seemed to last forever. Eventually I think the symptoms disappeared. A little later in the year I remember getting sick. I was sicker than I had ever been. High fever, chills and I was lying shaking on bed. I lived alone and was really worried as I was shaking too hard to be able to dial a number on my phone. Went to see a doctor several times but no real diagnosis was made. I am actually not sure I got antibiotics or not. Normally I tell my doctor I dont want to overuse antibiotics as I have had a lot in my life already. I remember having a blood test and from the blood test the doctor could tell me I had a bacterial infection. Eventually I got better and never gave it much thought. Now looking backwards, after this point I noticed somethings being different with my heart. One time during boxing excercise I got a remark from someone that she could see my heart pound in my chest. A few times I felt stressed and I seemed to feel some discomfort on my chest. I thought I was just more stressed than ever before. When my assignment in Singapore was over I remember getting very excited at the airport over something and noticed my heart was pounding like crazy. When I arrived back in Thailand I went for my yearly medical check up. Here is where they noticed my extremely low diastolic blood pressure and eventually found that I had a moderately/severe leaking heart valve. It was quite a shock as I had never had any symptoms like real chest pain or getting tired easily. I stopped my boxing and changed into doing motocross as it is less intensive. About one year later, still without real symptoms, my valve was found to be leaking severly and I was up for surgery. Up until today I still dont know I had endocarditis but looking back at what happened in Singapore I think I did. Anyone has an opinion on whether this has been endocarditis or not?

regards,

jarno

MY guess is IF it was BE, bad enough to need your valve replaced, you wouldn't have gotten better without massive weeks of Antibiotics, usually IV. Also they should have been able to tell when they operated and pre op tests like the echo if it looked like there was damage from Bacteria, visable growth vegitation, or holes etc. . But You'd have to ask the doctors/surgeon who replaced it. Another possibility that could damage valves is rhuematic fever.
Let us know if you find out anythning
 
I think BE is known for being hard to diagnose definitively without the "smoking gun" of a blood culture, but extreme temperature spikes, with extreme sweats and shivering chills, are very frequent symptoms, so I think it's possible. As Lyn said, your surgeon could probably tell you whether or not your valve etc. LOOKED like it had been damaged by BE -- and before your case blends into the blur of all the subsequent cases!
 
With blood cultures, echo, surgeon looking at the valve etc they would be almost certainly be able to tell you if you had BE. As Lyn said your condition would have deteriorated with antibiotics. I think there are obvious signs of BE on the valve. Remember lots of people have fevers, chills etc. We are bound to be more paranoid when it happens to us (which is a good thing of course so we spot problems early) but there are many other causes than BE. I didn't know BE went away without antibiotics and thought patient conditions just got worse as time went on.
 
With any serious condition that is always treated whenever it's diagnosed, it's tough to gather evidence on the prognosis without treatment. We assume it's awful, but it may be OK, at least for exceptional "outliers". And we'll never do a study to find out, either.

When a population of mech (On-X) HVR patients in Africa was discovered to have survived OK despite inadequate ACT, I think most experts were shocked. We're still carefully following up on that surprise, to see if it leads anywhere worthwhile. Time will tell. . .
 
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With any serious condition that is always treated whenever it's diagnosed, it's tough to gather evidence on the prognosis without treatment. We assume it's awful, but it may be OK, at least for exceptional "outliers". And we'll never do a study to find out, either.

When a population of mech (On-X) HVR patients in Africa was discovered to have survived OK despite inadequate ACT, I think most experts were shocked. We're still carefully following up on that surprise, to see if it leads anywhere worthwhile. Time will tell. . .

Im pretty sure with things like BE, that almost always had fatal outcomes before they found ways to treat it and good /strong antibiotics, and even now still has high mortality,especially IF you have it bad enough to have extreme temp chills, they dont need to do studies by not giving weeks of antibiotics or anti fungal meds to see what happens if you have bacteria in your blood or on your heart "parts", and since Jarno has had valve surgery since then and his surgeon got a good look at his valve and other parts of his IF it had damage from BE, i'm sure they would be able to tell, its true not all cases of BE cause perm damage (which is why Half- 2/3 the patients do NOT need surgery), but I would think if you didnt have proper treatment, the chances of not having any damage would be lower.

Not too mention there are several tests beside blood cultures that they can use to diagnoses BE which is good since there also is "culture negative" Endocarditis, so even tho blood cultures are a pretty good way to diagnose BE, it isnt always the "smoking gun"

As for your example with south africa, dont forget a couple years earlier there was the study with 3 valves, that showed pretty much the same thing, even tho If I remember right out of the 3 the ON-X group was in range about twice as often as the other 2 groups.
 
I am experiencing endocarditis as we speak. It started with a skin tear on my leg. I started oral antibiotics within 24 hrs of the wound but 5 days later, I just felt off, tired. I had just come back from a relaxing vacation so I shouldn't have been. The rest of the week just got worse until I couldn't sit up. Went to family doc. Blood pressure was 57 over 34. They sent me to ER in an ambulance. Since then I have had cultures drawn three times 3 TEEs, atrial flutter twice, had to have cardioversion once. Spiked a fever once, shortness of breath and extreme fatigue to name a few symptoms. I have had 2 OHS already. One in 2002 and one in 2008. I have been diagnosed with a heart abcess at the root of the aortic valve. We are looking at Valve replacement #3 on the same valve. My cultures have all come back negative and am on my 7th week of IV vancomycin and looking for a surgeon. I will always have antibiotics before anything I can promise you that!
 
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 and never knew it or what that meant. I experienced no alarming signs and lived a normal and comfortable life. I contracted endocarditis at the end of December 2010, I had almost every symptom (blood in urine, loss of appetite, drenchind sweats during the day and night, no energy whatsoever, high heart rate, every night @ 39.7 Celsisus on average) Went to my GP, he could not figure it out, after 30 blood tests reffered me to a internal medicine specialist, he wrongly diganosed me with golmelular nephritis and reffered me to a nephrologist. She disagreed with the previous dignosis becuaue we tests results were not matching up with the diagnosis. She ran loads of other tests and could not figure it out Evenutally she reffered me to the head of infectious diseases at the Hospital, met with his resident for inital appointment, after sitting for 30-45 min discussing my hidtory and symptoms she did a brief physical exam and I had heart rate of 140bpm. They ordered more test (now almost 6 months with symptoms), with one test I did not have before, A BLOOD CULTURE. His office called me in less than 24hrs (this test can take up to 5 days for a positive) and told me to come to the hospital to be admitted. Was put on Gentomicin, Vancomicin and then eventually Penecilin G, based on the bacteria they suspected it was contracted through the mouth. Cardiac consult said I may need OHS to replace my Aortic Valve, this devistated me because by now I was finally having my first nights sleep in 6 moths without a fever and I felt much better. Transesophogele echo showed I had no abcesses and because of that I should be fine with continued IV antibiotics at home. Went home, feeling I dogged a bullet.

3 weeks later, I had a sharp pain right above my left ankle. Had it checked out at the walk in clinic, had extensive ultrasound done finally reffered to go back to the hospital for clinical assesment. In the ER, I spiked my first fever in a month and slowly got back almost all the previous symptoms. Was admitted again to the hospital, Head CT showed I had a mycotic anyerisum. I actually remember the anyerisum bursting. Was prepped for emergency crainiotomy (wich caused a minor storke), a day post op I had a seizure (don't remember that at all). Spent another 4 weeks in the hospital waiting for AVR surgery. Was the hardest thing I have ever gone through in my life, first week post op very difficult. Went home and first night I went up the stairs to go the M.Bed. to sleep I sat bedside for 5-10min catching my breath. Finally I am in the clear, the take home message is to tell everyone you know to make sure your GP has lots of ER experience (they see everything). This put my family through hell twice and my lovely wife just gave birth 3 weeks prior to my first hospitalization, she is truly amazing. A simple blood culture would have cought this in time before letting it get this far.

I think this forum is really great and wonderful, too bad I only found it after my OHS, would have been really useful while waiting for the date.

Thanks and good health,

Mehrdad K.
 
I got my Endocarditis from using drugs when I was 19 years old. I was a class A intravenus heroin and Cocaine user. I have been clean 13 years and am getting married next year. I now run my own company which is very successful. I was told I needed an Op about 18 months ago. I am now 6 months out of Op and feeling better after a long recovery from a repair which failed. I am on loads of meds but working again. The past come back and bit me on the back side. Nobodies fault but mine.

Thanks
Ron
 
Wow, I'm finding it very interesting that so many of you with BE didn't need surgery! I got BE in early September 2011 (11 months after AVR) - ran a race, had a nap, woke up with a fever of 40C (104F I think). That continued for a few days, then I went to my GP thinking it was the flu!! She sent me to hospital where two days later they discovered Strep sanguinis (common mouth bacteria) and two days after that I was having emergency OHS.

My valve had 7mm thick of bacterial growth and my coronary artery was blocked by 60%. I'd been on IV antibiotics for a few days pre-op which had killed the bacteria, but my surgeon said it was the most exuberant growth he'd seen on any valve.

I was under the impression that endocarditis meant OHS and a new valve, but now I'm wondering if I had gone to the doc sooner, would I have avoided another surgery . . . one thing's for sure, any sign of a fever will have me on the phone to my cardiologist immediately from now on!!!
 
My doctors believe I contracted BE through a root canal on a molar 10 years earlier. They weren't positive because I was never technically treated for BE yet I had "out pouching" a.k.a. an aneurysm on my valve and some other evidence of BE. Confused?, so were they.

I was never diagnosed w/ a BAV until I was 30 and prior to that I was having all types of dental work done, without pre-mediacating; why would I? I had no problems. When the doctors at Deborah Heart & Lung discovered my BAV, they also thought I had an active case of BE because they saw the aneurysm and thought I would need to go on high dose anti-biotics and then have immediate surgery. This devistated my wife and I. We weren't even married a year yet and we were looking at something major like this. BTW, I spent my 1 year wedding nniversary in the hospital. When the blood cultures came back the next day, everything was negative! We started to talk about my medical history.

I had Lymes Disease a few times (the price of being a landscaper) and was always treated with amoxycillin. My doctors believe one of those Lymes Disease test was a false positive and was actually BE. Luckily the meds they prescribed took care of the BE, otherwise I would have been in some serious trouble. Doctors have monitored the damage caused by the BE, kept me on a "no lifting anything over 30 lbs" restriction, and told me the damage would be fixed when they do the BAV replacement. It's been like this for the past 10 years, and in about 2 months I will probably be getting the surgery done.

~Marc
 

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