Endocarditis discovered

[ejc61]

I've just concluded a 6 week period where I would periodically run a low grade of fever (100-101.9) for a period of a few hours which was brought down by a few Advil. During this time, my PCP put me on Levofloxacin for two separate periods, once for 14 days and once for 10 days over this 6 week period. Thinking about sinusitis. I also had my annual consultation with my cardiologist during this period and he made sure I knew to take antibiotics if my temp got over 101.4 and didn't go down with Advil and call him the next day if I was still febrile. Of course the temp always went down. It seems that I would always get a brief fever about 5 days after antibiotics were completed. During this time, I took a few blood cultures, albeit once with 500mg amoxicillin in my system, and the cultures came back negative and white blood counts also negative. Had a chest x-ray during this time, (negative) as well as flying out of town for my mother in law's funeral. Fast forward to 2 weeks ago, 6/27/14, I took another blood culture after running fever and result was positive infection in bloodstream. Started on amoxicillin/clavulanate two days later. A few days later, 7/1/14, I started to get this pain in my right hand practically overnight and it swelled about 0.5 inch. Anyway, admitted to hospital on 7/3/14 and was discharged on 7/7/14. In the hospital, Infectious Disease doctor ordered twice a day doses of Ceftriaxone (Rocephin ) 2 gm. Infectious disease doctor indicated a sub acute strep bacteria. She suspected that infection flickered and wound up in my right hand. Echo and TEE confirmed a <1 cm vegetation on anterior leaflet of mitral valve. My repair was on the posterior leaflet fwiw. No damage to the mitral valve. So treatment going forward is 6 weeks on iv antibiotics taken at home. 30 minutes a day after dinner to accommodate our schedule. A PICC line was placed in my arm and we administer the iv ourselves. Pretty dumbed down although my wife is a nurse. However, I am a bit depressed about this. I don't seem to know how I got this? My last dental cleaning was last October and I had an endoscopy/colonoscopy last November. I wonder if this is going to be reoccurring? I believe my dental meds will be changed from basic amoxicillin. I've put off my cleaning for a few months while all this has been going on and the ID doctor said it would be a good time to get dental work done while on the iv antibiotics. Maybe I'm a high risk case now? Maybe I need to run to the ER whenever I get a fever although this is the first fever I can remember in 40 years seriously. I hope to know more where I followup with the ID and cardiologist. Did I miss the 4th of July?

 

[river-wear]

I've read other posts here about endocarditis, and it seems like it's often a mystery where the infection comes from. It's supposed to be pretty rare, but of course the people visiting here are not only more at risk, they're also more likely to post (as you have done). I'm just writing to offer moral support until someone with experience can chime in with some answers for you. It's good that you continued to follow up on that fever; hopefully they can kill this off before any damage is done.

 

[pellicle]

Hi

sorry to hear you're part of the endocarditis club. As I understand it from what you've described you stand a good chance of having it driven into remission by the antibiotics and the PICC delivery system. I'm a little surprised that they have not gone with vancomycin initially, to smack it down hard in the initial stages. Have they been able to determine a bacteria by culture or only by inference?

During this time, my PCP put me on Levofloxacin for two separate periods

I only know PCP as Phencyclidine (which is a hallucinogenic drug), so I'm assuming in the USA PCP now has some other medical name (unfortunate correlation if you ask me, must have been coined very early or more recently by some Y gen kiddie who missed the psychedelic years).

During this time, I took a few blood cultures, albeit once with 500mg amoxicillin in my system, and the cultures came back negative and white blood counts also negative.

its a hassle isn't it. Once that stuff is laid down you're then shooting blind for culturing anything.

Had a chest x-ray during this time, (negative) as well as flying out of town for my mother in law's funeral.

always comes in groups doesn't it ...

Fast forward to 2 weeks ago, 6/27/14, I took another blood culture after running fever and result was positive infection in bloodstream.

...

Infectious disease doctor indicated a sub acute strep bacteria.

I find myself wanting to reach for the vancomycin ... may I ask if this is ongoing? Like is the PICC line still in? I noted in your further writings that somethings imply its now over for the treatment. The time hopping has me a tad confused.

However, I am a bit depressed about this. I don't seem to know how I got this?

I understand, all these things knock one around. I recommend talking about it to all your friends (and well talking about it here too) and get as many angles on it as possible. I know it can't change your emotional state in a short time, but hearing some positives may make it less gloomy.

at least that's what has worked for me.

My last dental cleaning was last October and I had an endoscopy/colonoscopy last November

Strep in the mouth sounds possible, strep in the colon ... I'm not sure.

What was your antibiotic cover (specficially what drug what dose) during your dental?

I believe my dental meds will be changed from basic amoxicillin.

its possible, but its also possible your dose was insufficient. I usually have 2000mg (yes 2 grams) one hour before the procedure. Its important when you take and in what quantities as uptake of amoxicillin is at a peak at about an hour, and the half life of amoxicillin is not long, about an hour. So within 2 hours you have less than half what you took in your system.

Maybe I'm a high risk case now?

higher, that's what I understand. I understood that once you had it you were statistically more likely to get it again. I do not know if that's because there is always a remnant (unkilled but hiding / dormant) or if the scaring of the tissue on the valve surface makes it more amenable.


Anyway, best wishes with it all and to be honest speaking as one who's been on amoxicillin for over a year already I can say that as long as you don't get side effects from that (I haven't) then its a preferable alternative to surgery.

 

[river-wear]

Pellicle, PCP = Primary Care Physician. Insurance term.

 

[ejc61]

Thanks Pellicle. Yes PCP is another name for my internal medicine primary doctor. The bacteria was determined by culture. My dental cleaning regiment is also 2,000 mg amoxicillin 1 hr before.
I remember the infectious disease dr saying that generally for a vegation of 1 cm is pretty treatable with antibiotics.
Counting the 8 doses in the hospital and a week at home so far, my last dose is scheduled for August 14.
What really stinks is not being able to ride my bicycle or kayaking. Sitting around at home on a sunny day is a drag.

 

[Adrienne]

Endocarditis

Endocarditis

I'm pretty sure that the reason a person who has already had endocarditis is at higher risk is because of the scars and/or calcification that is caused by having had endocarditis. It is easier for the bacteria to latch onto the valve.

I had endocarditis in 2004. I remember having had a slightly bleeding gum after brushing my teeth about two weeks before I had symptoms (fever, headache, etc.). Of course, we all probably from time to time have either a bleeding gum or we bite the inside of our mouth and it bleeds, but I guess it's just like Russian roulette, with a very low risk, but there is the risk.:frown2:

I was in the hospital for 5 days with IV antibiotics (gentimycin (sp) and penicillin), then a month at home with a PICC line with penicillin.

Good luck.

 

[newmitral]

Hi ejc61,

As an endocarditis alumnus, I'll offer some thoughts.

First, although I fully appreciate your depression and the "it stinks" feeling about the PICC line antibiotic treatment, in all honesty you are extremely fortunate because your doctors diagnosed and started treatment early enough to prevent serious damage to your mitral valve.

In my case, I did not have the classic fever that usually accompanies endocarditis, and my primary symptom was a persistent cough. I had lots of other weird secondary symptoms (anemia, enlarged spleen, etc.) which diverted the doctors' attentions to perform hosts of other tests (X-Rays, MRI's, colonoscopies, etc.) and my endocarditis was not diagnosed until I was virtually at death's door and my mitral valve had been damaged to the point where my heart could no longer pump enough blood on its own. I had to be kept alive for a few days with an arterial pump assisting my heart until the hospital could schedule me for an emergency OHS valve replacement surgery. Part of the reason for the delayed diagnosis in my case was that I had no prior history of heart problems, so endocarditis was not high up on the list of things to check for, apparently. Of course, by the time it was finally diagnosed, my mitral valve was toast, and I now have a mechanical (On-X) mital valve.

I believe that you are also fortunate that you only had an additional painful, and apparently temporary, complication in your hand. Often bits of the vegetation will break off and travel to the brain where it can cause a stroke, or lodge in a major artery where it can be life-threatening. In my case, I had a mycotic embolism from the endocarditis lodge permanently in my leg, which blocked blood flow to my foot, causing not only pain, but claudication. I ended up having to have another surgery on my leg about a year after my OHS to bypass the blockage in my leg from the (now dead) bacteria and restore proper circulation. A rare but nasty complication of the endocarditis.

I don't seem to know how I got this

Same with me. To this day I have no idea how I contracted it. The doctors kept asking about any recent dental work, but I had none. The bacteria that destroyed my mitral valve was "strep viridans", a bacteria often found in the mouth. I did have a routine cleaning about two months before I started getting sick, but that's unlikely to have been the cause. As I found out reading up on this after my OHS, the mouth bacteria can enter your bloodstream from simply flossing, or even aggressive chewing in some cases. That's one of the reasons why the guidelines have changed regarding pre-dental-visit antibiotics. Now, it is only recommended for folks like us who have actually had endocarditis before, or who have prosthetic heart valves or certain other high-risk situations.

I believe my dental meds will be changed from basic amoxicillin.

Probably not. If you have no adverse reaction to the amoxicillin, it is still the dental pre-medication antibiotic of choice as far as I know.

I wonder if this is going to be reoccurring?

Those of us who have had it before are statistically at greater risk of getting it again than the risk in the general population. Most of the time, if it recurs it happens within 6 months after a prosthetic valve implantation. I'm already well past that point, so I think my risk factor of getting it again is now down to about 1% or so. In your case, since your valve was repaired, not replaced, you will probably have to ask your doctor for her assessment on the risk of recurrence. You did not say specifically which strain of bacteria your cultures identified, only that it was a form of strep.

Ski-Girl, another member here, has posted that her doctor recommended using an antiseptic mouth-wash prior to flossing/brushing - killing off most of the mouth bacteria before getting your gums stressed. This seems like excellent advice to me, and I have started following that regimen.
Other than that, and the fact that I now take 2g of Amoxicillin prior to even routine dental cleanings, I have not made any major changes to my routine.

What really stinks is not being able to ride my bicycle or kayaking. Sitting around at home on a sunny day is a drag.

It's not much consolation to know that things could have been (and usually are) much worse with endocarditis, but I encourage you to look on the bright side. Your doctors diagnosed it early and should be able to treat it successfully with only the 6 week PICC antibiotic treatment. It has not seriously damaged your heart valve. Also, you haven't had any serious complications from emboli.

The 6 week antibiotic treatment will be over before you know it and it really isn't a major inconvenience - especially compared to the alternative of OHS to replace the valve. I still had to do the 6 week PICC line antibiotic treatment to kill off my bacteria, but in my case I got to do it after my OHS to replace my mitral valve.

I offer my best wishes for your speedy return to normal and urge you to look at the glass as half-full rather than half-empty.

 

[Agian]

I had endocarditis in 2004. I remember having had a slightly bleeding gum after brushing my teeth about two weeks before I had symptoms (fever, headache, etc.).

I hope you don't mind me asking, but what was your dental hygiene like at the time? I only ask because a cardiologist told me that gums that bleed easily are a sign of evolving periodontal disease, which in itself can cause endocarditis.

 

[Agian]

Btw, I'm learning heaps from you guys.

 

[Adrienne]

I hope you don't mind me asking, but what was your dental hygiene like at the time? I only ask because a cardiologist told me that gums that bleed easily are a sign of evolving periodontal disease, which in itself can cause endocarditis.

It was very good. However, I have a couple of lower teeth that are very close together, and from time to time, the gums become slightly inflamed (this doesn't happen often). A possible contributing factor was that we had just flown to Rome (I don't sleep on planes) so my immune system was probably not at its best. I remember that when I woke up in the morning, there was a tiny, tiny spot of blood on the pillow. It was the day after we got back from Italy (2 weeks afterwards) that I started having the symptoms.

 

[ski girl]

"What really stinks is not being able to ride my bicycle or kayaking. Sitting around at home on a sunny day is a drag."

To echo others on here . . . what REALLY stinks is contracting endocarditis 11 months after your first AVR, being told there is only a 30% chance you're going to live, getting an emergency AVR redo, and having to go through the three month period of healing the sternum and the year of recovery all over again.

I think you're extraordinarily lucky that your doctors caught this quickly enough that you avoid another surgery and merely have the inconvenience of a PICC line for six weeks! It could have been a LOT worse.

BTW I had Strep sanguinus, a common mouth bacteria - most likely pushed through my gum while I was brushing my teeth, but my doctors don't know for sure either. I have a new set of oral hygiene instructions which are in several other threads, let me know if you can't find them and I'll re-post.

 

[pellicle]

Hi

I only ask because a cardiologist told me that gums that bleed easily are a sign of evolving periodontal disease, which in itself can cause endocarditis.

actually my dentist told me that (well tells me that every time) and his (well iterated and clearly spoken frank words are) if your gums are bleeding its because you have plaque buildup under the gums.

So anyone who tell him they don't floss because "they get their gums bleeding" gets a serve that goes on for a few minutes (with a demonstration).

There is as far as I know a tight correlation between dental hygiene and endocarditis. A cardiac nurse in my last ICU who had migrated from the UK said that oral hygene generally was much better than Australia (trips on the tube in London re-enforce that idea in my head anecdotally) and our rate of endocarditis is lower than the UK she said. I have not independently researched that.

PS: I floss after every meal (to remove particles before they attract unwanted bugs) and brush twice a day. I floss before brushing. Knowledge of proper flossing technique appears to be absent in the general community (when I discuss this with people I know) and seems to be proportional to age. NB the older know the person less likely they floss.

 

[OldManEmu]

ejc61
I had endocarditis for 8 months before they worked out what was wrong with me. I had a sinus infection and a bout of bronchitis, nothing to do with dental work. I only ever had a low grade fever which would resolve as soon as I was on anti biotics, only to return again a couple of weeks after the course was completed. The PICC line was a breeze compared to the class IV heart failure I went into while waiting for surgery. The cardios words were you can't expect to go the rest of your life without a breach of the hull. In other words you are going to get cuts and grazes to your body all of which will introduce bacteria just be vigilant for the signs of BE and act early. I am now very vigilant for any symptoms of BE.

 

[ejc61]

Thanks for the responses. I guess I was a bit upset and clearly it could have been worse. I didn't realize how long some of the cases described could go before diagnosis. I am also aware that heart surgery is not a one and done thing. So we pray for the best.

 

[pellicle]

Hi

Thanks for the responses. I guess I was a bit upset and clearly it could have been worse.

It often comes as a shock, even for the veterans. Don't feel that anyone else would not feel what you felt, I think they were coming from the angle that it could be lots worse, so be thankful for small mercies.

I am also aware that heart surgery is not a one and done thing. So we pray for the best.

Which is an excellent point and one which I was actually going to make myself here. Frequently I read people saying that they just want to get surgery and get back to life as it was before. To me this is the voice of the "Ostrich" eager to dig its head into the sand. The reality is that no valve replacement will cure you, even temporarily. Unless you meet Jesus in the market and he heals you all surgeries (replacement, repair, TAVI or Traditional) are going to leave you more vulnerable to endocarditis than a healthy adult. All valve surgeries will require you to take antibiotic cover on occasions and all surgeries will require you to be aware of your condition and be vigilant at all times.

Head in the sand is how you become a statistic

Best Wishes

 

[Rick]

Ejc,
In 2007, at the age of 38, I had a similar period of recurring fevers treated each time with antibiotics. I also had a cough that would not go away. Went through all kinds of testing. Eventually in 2008, 6 months after the fact, I had a positive blood culture but also negative on the confirmatory version. It was explained to me that 10% of endocarditis cases do no show up on your blood culture. When they tried the TEE I had an unsafe drop in my blood pressure and in regular EEG no vegetations showed up but you only pick up larger ones there. However, my heart had become enlarged and there was a significant deterioration of my aortic valve and regurgitation in my EEG.

The infectious disease MD gave me antibiotics and in my case, given others' history with the specific pathogen that was possibly causing what I had, I was given antibiotics for 1 whole year. I was also asked to drop weight; take BP meds to keep my BP at 110, including a beta blocker which is not fun; reduce salt intake; no competitive exercise, only light exercise like walking. The cardiologist told me he thought I should prepare for a surgery within 5 years.

6 and a half years later - today - I look back on this as a very difficult period of time, but I got through it. I dropped 40 pounds and have since been fairly slim and stayed that way - the key was changing what I drank and what I bought at the supermarket; I have followed a reduced salt diet; I have taken my meds; and I have not drank any caffeine in 6 years. My EEG shows that my heart remodeled to within normal ranges and the regurgitation has stayed the same, after a precipitous drop in two years with what some MDs still doubt was endocarditis.

Looking back, I had a dental infection that my dentist did not catch for 4 visits for a couple of months until I asked for an x-ray - when that was done, it was caught and had a procedure to clean it - with no antibiotics by the way: he says I never told him anything; my response is he never asked and how the heck am I responsible for informing an MD of stuff that is important when I am not the MD. I also went through a divorce at the same time and problems at work - businesses sometimes do not like people who have extended illnesses. Though I have dated, I am now single an much happier than when I was married. In terms of work, I did suffer financially some but I am okay and while I was a bit of a workaholic then, not so much anymore -- I take more time to enjoy other things and live more simply. In terms of my health, no surgery for now and I have even begun playing some soccer though I slow down when I get winded or if some of the the others tell me I am out of shape because I look tired -- people do not know why. I always loved sports and do a moderate version of them now.

Anyways.. a long post to share my experience hoping you take away from this that there is a light at the end of the tunnel and you can oftentimes go back to a regular life with essentially no limitations, especially if you stay on top of your situation and make sure you are persistent until it is cleared out --- listen to your body and be your own best friend by being an advocate for your health. Peace out and best of luck to you!

 

[ejc61]

Thanks Rick. I don't feel inhibited just a bit more conscious than before.

 

[ejc61]

Just an update with my situation. My echo from 7/29 shows that with the rocephin taken for the past 3 1/2 weeks, my vegetation has decreased in size from about 12mm to about 8mm. Also the fuzzy part around the vegetation is gone. Cardiologist is encouraged and I have about 15 days of medication to go. He said that the big thing will be to see how I do in the week after my iv ends and whether I can stay fever free. He suspects that if I do, the vegetation would be considered sterile and that a subsequent echo in about 2 months will only show some scarring. I'll ask my infectious disease doctor when I see her after my last dose if additional duration of this antibiotic is a possiblity since I remember her saying that it's sometimes the case. Sounds like if I run a fever, however, that other less pleasant options may/will be looked into.

 

[river-wear]

Thanks for the update. I hope you've killed off that "garden" - or will have by the time you're done with the antibiotics!

 

[ejc61]

Well I'll try to condense this update. My inital PICC line from July was removed on 8/13/14. On 8/17/14, I couldn't walk and my right leg was beyond pain and couldn't walk. My ID doctor admitted me to hospital. TEE showed mitral valve vegetation reduced from 8 mm on 7/29/14 to 5 mm on 8/18/14. Arterial ultrasound on 8/19/14 showed arterial clot. Oops surgery same day. Clots removed and faschiotomy done. Surgery took about 4 hours longer due to some resistance to heprin. Clots sent to pathology. Officially, the clots were dead matter vegetation that broke off. The valve is still looking good according to 2 cardiologists and my CT surgeon. Used a walker for a few days after discharge then down to only a cane. Swelling going down every day. Went home on 8/24/14 after 7 days in hospital. Another PICC line and 6 weeks of IV antibiotics, daptomycin, and take blood thinner, xarelto 15 mg, for 30 days and then 20 mg for a while to be monitored. As a sidebar, my blood work is being analyzed and trip to hematologist in mid October to check out if any odd clotting characteristics I should now about. Good to know my health care team is growing. My skiing future this year is surely shelved at least due to the vascular issue and to some extent the blood thinner. It would be nice if my boss was a bit understanding as I only took 7 days off and am trying to work about 6 hrs a day working around doctor appointments for a few weeks. Already working close to 8 hours a day after 2 weeks. Getting a HIPPA letter together by my ID doctor as it seems I'm not working hard enough for boss. My wife is okay if I just quit my job. More accurately, I will need to start looking for another job once I feel better. All the doctors treat my case as a curiosity although they are all super attentive. Been trying about a month to get this posted as I read that there's been problems with site.