Endocarditis - Enterococcus faecalis - On-x Valve (tiny vegetation) - NEED INPUT!

[Onx_06]

Hi Everyone,
Background: It's March 2006, I was 26 yr old and my aortic valve (severe stenosis) is replaced by a mechanical valve (onx). I was out of the hospital in 4 days, and on coumadin - Life couldn't have been better. Forward seven years ....

Oct 2013: At the age of 33, I started losing weight, fatigue, loss of appetite, - went to my cardiologist for checkup. EKG, ECHO, blood cultures were done. ECHO, EKG came back the same as they looked 6 months ago. Cardiologist assured nothing to worry about as long as the blood cultures were negative. WELL, It came back positive as Enterococcus faecalis. I had all of my wisdom tooth taken out on Sept 25th. I was given IV antibiotics during the oral surgery and amox afterwards. They believe that this might have been cause of the bacteria.

Since blood cultures were positive; I was told to check in the ER right away. They did a set of blood cultures, and then put on antibiotics (vancomycin, gentamicyn, etc) right away. The second set of blood cultures (which were drawn the next day) were negative so the antibiotics were working right away. The cardiologist performed a TEE, and saw a very tiny - small vegetation on the leaflet of the mechanical valve. It had no root involvement and heart function was good - ejaction fraction of 65. He did CONFIRM that there is something definitely there though - and I had my wife who is a physician consult with few of her cardiologist friends as well. I was in the hospital for 4 days and then they sent me home with a 6 week antibiotics with home nursing. I am on Ampicillin (24 hours) & Gentamicyn (every 8 hours) (sorry for spelling). They told me to consult my cardio surgeon asap as well. I am feeling a lot better after 2-3 days at home now - ofcourse this is because of the antibiotics.

Has anyone else gone through this .. I am a bit scared that If I do go for another valve replacement surgery - DO I even need to go this route? The cardiologist at the hospital sounded very optimistic that I will not need surgery and IV antibiotics should take care of this .... BUT I am getting few opinions and some are saying - I should consider the surgery. My concern is- even if I have the surgery, what are the chances that this won't happen again?

This tiny-small vegetation that has not affected the heart function at all - can it become sterilized? JUST NEED all of you guys to put your input on my case ... PLEASE PRAY as well .. Thank you in advance.

Raj

 

[Onx_06]

One of the cardio that my wife knows - just said .. "Could be vegetation or shadow from the valve". Arghhh!

 

[Forrest]

Hello Onx_06,
Sorry to hear that you contracted Endocarditis. I too had Endocarditis after a tooth extraction, just a few months after I learned that I even had a congenital heart valve problem. I was lucky in that I had detected that something was very wrong myself and got in to the urgent care clinic within two weeks of my tooth extraction. Back then I had been reading up on what other risks I had to be aware of as a newly diagnosed heart valve person, then cracked a tooth beneath a crown, but thinking this infection will never happen to me. So after the tooth extraction was completed I got out my list of symptoms and watched, again just to be safe, after all I heard that plenty of people with heart conditions have a variety of dental procedures performed and nothing bad happens. I noticed mild fevers by day 8, off and on so I kind of thought I was just being paranoid. Then buckled over with the worse abdominal cramps I could imagine by day 10, still thought I must have some kind of flu in the middle of the summer so didn’t go in until day 14 when the fever kept coming back. They found all my inflammation markers were spiking off the charts, white blood cells very high, etc. They took cultures and admitted me to the hospital because Endocarditis is nothing to take lightly, cultures came back positive for Strep Viridans all through my blood stream. But I was lucky, I got in fast before any colonies of bacterial vegetations could set up camp. I was on similar antibiotics as you while in the hospital for a few days, then sent home with PIC line down my bicep dangling into my right atrium, I pumped Ceftriaxon into my PIC line daily for another month. The inpatient Cardiologist said I was extremely lucky that I came in soon and that I was somehow able to keep it at bay for a while, a battle he said I would have lost for certain if I didn’t come in as promptly as I did. I had subacute bacterial endocarditis, I imagine each case can be different in its movement and damage, but all fatal if not treated. The cardiologist told me to always be aware of the symptoms in case I ever contract it again, he said the “acute” bacterial endocarditis version can move even faster than subacute types.

I am no expert on this subject matter. But it’s good that you have a team of specialists monitoring you, and it doesn’t hurt that you’re wife is a physician! My case was fortunate and not full blown vegetations (many go through much more than me), but I felt good that I had an Inpatient Cardiologist, an assigned Infectious Disease doctor to monitor my treatment to the end, an inpatient managing doctor who took an interest in me and followed my case, the emergency clinic doctor who was very good to recognize the need to admit me, and my own cardiologist. After my treatment was completed the Infectious Disease doctor told me to wait another 2 weeks then come back for another culture to make sure the infection was completely gone.

Endocarditis is scary, but you are on top of it and have a team to discuss your treatment. I had my experience with my natural aortic valve in place, a few months after my treatment my cardiologist and I decided it was time to replace my native valve. I was paranoid for a while after my operation, it’s kind of like “once bitten twice shy”. I had read so much about Endocarditis that it was hard to put it down. It’s important to be knowledgeable, but over reading can overwhelm you as well, plus there will always be horror story cases. But we’re all different, I’m certainly the type that likes to know a good working knowledge of things, and it certainly helped me in self detecting that something was very wrong after my tooth extraction. I understand that endocarditis with a prosthetic valve can sometimes be even more difficult and serious (Endocarditis is already very serious, so I should say serious’er). But it sounds like your team is watching things and the TEE etc shows a small amount on the valve itself and not the sewing ring/cuff. Over time I’ve, by surviving, learned that I most likely will never get it again. I am no longer paranoid, but rather I’m vigilant when it comes to knowing the symptoms, staying healthy, taking pre-meds before dental procedures and listening to my cardiologist. Other than taking prudent precautions there seems to me to be a certain level of randomness to it. But, we as heart valve patients need to never take this subject lightly.

You may find a list of symptoms on credible websites, or even search the topic under the forum to glean other members’ experience. Again, I’m no expert. But it sounds like your team is watching things closely. You know, I’ve heard that in med school Endocarditis is in the top list of conditions doctors are taught they can never afford to miss diagnosing, so your team knows to treat this matter with highest concern. Best wishes to you in your treatment and for good times down the road.

 

[Onx_06]

Hello Forrest,
Thanks for the support & input. I have an appt this tuesday with my cardio surgeon who did the surgery in 2006. I just wished there were someone who went through the EXACT situation as mine but like you said, everyone is different. Hopefully, antibiotics will take care of this situation .. praying.

 

[AZ Don]

Sorry I have no experience with this situation, but I think in general surgery should be avoided when possible. Unless there is a clear and compelling reason for surgery I would wait and see how the antibiotics do. I hope they resolve the problem for you.

 

[clay_from_nj]

I never heard of "vegetation" growing on a heart valve, so I went to my friend Google. This is from MedicineNet.com:

Endocarditis facts*

*Endocarditis facts medical author: Melissa Conrad Stöppler, MD

Endocarditis is an inflammation of the valves of the heart.
Endocarditis is often caused by the growth of bacteria on one of the heart valves, leading to a mass known as a vegetation.
Symptoms can be nonspecific and include fever, malaise, shortness of breath, and weakness.
People with existing diseases of the heart valves and people who have undergone heart valve replacements are at an increased risk of developing endocarditis.
The most accurate method of detecting the valve vegetations of endocarditis is with a procedure called transesophageal echocardiography (TEE).
The treatment for endocarditis consists of aggressive antibiotics, generally given intravenously, usually for 4 to 6 weeks.
The duration and intensity of treatment depends on the severity of the infection and the type of bacterial organism responsible.
In severe cases that damage the heart valves, surgical replacement of the valve may be necessary.

Also, the Cleveland Clinic has a great article here: Surgery for Infective Endocarditis.

 

[Gail in Ca]

I did have my 8.5 yr old carbomedics valve and original graft replaced after endocarditis in '09. My case was somewhat like yours but also not like yours. After my 6 weeks of IV antibiotics, the TEE showed no vegetation, but my hematocrit numbers were still very bad and my coloring continued to be 'gray'. My cardio consulted my surgeon and they decided I needed to have my valve replaced, maybe there were pockets around it, they really weren't sure. So, because my blood numbers were staying bad, I had the surgery to replace my aortic valve(from'00) and graft,(from '89) and repair my mitral, which the surgeon inspected closely, saw some small holes, but was confident I would do well with a repair on my mitral. It worked because after my recovery, my blood numbers went back to normal, and all was well.
My bacteria was s. lugdunensis, don't know how I got it. Oh, also, I began to have SOB and severe mitral regurg. They also found small perivalvular leak around the top hat valve with areas of small cavities around the aortic root that were suspicious for pseudoaneurysm. When I read the description of findings it seems that the mitral probably was the main culprit, and the aortic was replaced because of the small leaks around it. I was given a valve inside a graft, a one piece deal. And my valve was also moved up along the aorta, which I didn't know they could do.
Do you feel good? Are your tests coming back normal? Are they confident the bacteria is gone? If your cultures are good, and everything else is good, I would hope for you that you won't need another surgery! Sorry, I didn't get that you hadn't finished the antibiotic regimen. Just a note, be aware of fever, because my staph was negative when I was discharged that 1st week in the hospital, but 4 days after I got home I had a 101 fever, went back in, cultures had now turned to positive and I was started on different antibiotics for the remainder of the 6 weeks. My doc said minimum of 6 weeks so that's good. I lost weight on antibiotic IV, just didn't feel like eating much.

 

[Onx_06]

I came home from the hospital on Tuesday (Nov 12th) evening, and started the "Antibiotics" home treatment. I am slowly getting my appetite back and feeling better overall. The antibiotics (Ampicillin & Jentamicyn) are for next 6 weeks (Dec 20th). I guess the REAL question will be after the 6 weeks when I get off the antibiotics and repeat cultures and TEE (.5-1cm vegetation disappears). #PRAYING

Oh one more thing, the 2nd set of cultures that they did in the hospital after they started the "Antibiotics" were negative. The cardiologist was quite optimistic that the antibiotics should do the trick but everywhere I read/look/research - "Prosthetic Valve and Vegetation = Replacement of Valve" especially since it's the aortic.

 

[Adrienne]

I came home from the hospital on Tuesday (Nov 12th) evening, and started the "Antibiotics" home treatment. I am slowly getting my appetite back and feeling better overall. The antibiotics (Ampicillin & Jentamicyn) are for next 6 weeks (Dec 20th). I guess the REAL question will be after the 6 weeks when I get off the antibiotics and repeat cultures and TEE (.5-1cm vegetation disappears). #PRAYING

Oh one more thing, the 2nd set of cultures that they did in the hospital after they started the "Antibiotics" were negative. The cardiologist was quite optimistic that the antibiotics should do the trick but everywhere I read/look/research - "Prosthetic Valve and Vegetation = Replacement of Valve" especially since it's the aortic.

You didn't mention if you had a PICC line to deliver the antibiotics. I had endocarditis in 2004 (strep viridans) and had 5 days of IV penicillin and gentimycin, then a month of penicillin delivered by a PICC line. If you are taking the antibiotics orally, I am wondering why.

 

[Onx_06]

You didn't mention if you had a PICC line to deliver the antibiotics. I had endocarditis in 2004 (strep viridans) and had 5 days of IV penicillin and gentimycin, then a month of penicillin delivered by a PICC line. If you are taking the antibiotics orally, I am wondering why.

Hi Adrienne,
I have a PICC line to deliver the antibiotics. I am doing Ampicillin (24 hours) and Gentamycin (every 8 hours).

 

[ski girl]

I had acute endocarditis two years ago, I went from running a 12km race to fever of 40C in a couple hours. I had an emergency redo of my AVR within a day and a half of them figuring out why I was so sick.

In my case the bacteria had formed a 70mm thick carpet over my valve and caused an abcess in my heart wall and I wasn't expected to live. The real worry was that the vegetation (the 70mm carpet) would break off and get stuck somewhere important, like my brain. That should be the concern for you, they have clearly killed the bacteria.

Are they worried about the tiny vegetation, if it really is there, breaking off? If not I'd say you don't need another surgery, but then I'm not a doctor

 

[Onx_06]

I had acute endocarditis two years ago, I went from running a 12km race to fever of 40C in a couple hours. I had an emergency redo of my AVR within a day and a half of them figuring out why I was so sick.

In my case the bacteria had formed a 70mm thick carpet over my valve and caused an abcess in my heart wall and I wasn't expected to live. The real worry was that the vegetation (the 70mm carpet) would break off and get stuck somewhere important, like my brain. That should be the concern for you, they have clearly killed the bacteria.

Are they worried about the tiny vegetation, if it really is there, breaking off? If not I'd say you don't need another surgery, but then I'm not a doctor

Oh wow! Emergency redo of the AVR within a day! 70mm carpet .. Did you not feel sick before? Just one day - all of a sudden you had a 40C fever ... that is super odd. I am glad to know that you are doing well now .. I get to find out the next steps Tuesday after talking with my surgeon who did the AVR in 2006.

 

[ski girl]

Onx my 12km run felt awful but there were no other symptoms before the raging fever. And I self diagnosed flu and stayed home for three days before going to my gp , who rang my cardiologist, who said get in to hospital. That was Wednesday, Friday night they did a TEE, found the problem, and Sunday 7am I was on the operating table.

But that was acute endocarditis, most cases I read about here are low level ongoing infections. One more day and I would not be typing at you right now! They killed my bacteria within a day of starting me on antibiotics, it was the amount of vegetation on the valve that was the real concern. That's why I think you won't need a redo, if they aren't concerned about whatever veg you have breaking off. Fingers crossed for you!

 

[pellicle]

Hi

Background: It's March 2006, I was 26 yr old and my aortic valve (severe stenosis) is replaced by a mechanical valve (onx). I was out of the hospital in 4 days, and on coumadin - Life couldn't have been better. Forward seven years ....

so sorry to hear of your situation. I can see why you are after people who are in exactly the same situation, as a point which is significant here is that you have a pryorlytic carbon mechanical valve not a tissue valve. As I understood it the leaflets of these valves should make it difficult to get a vegatative cluster. From On-X literature:

Endocarditis An inflammation of the inner lining of the heart. Bacterial endocarditis can occur when bacteria grow on the edges of a heart defect or on the surface of an abnormal valve. A common source of infection is when bacteria enter the blood stream from dental, gastrointestinal or urinary tract procedures.

{my underline}

A quick review of the literature does not find any cases similar to yours, as most seem to involve other situations.

I'll do a little more digging and see what I find. My best wishes to you and I understand what it can be like to come home with a PICC line and all that. I've been there quite recently with an infection in my sternum (well beneath the sternum) from an infection given during surgery. In my case I'm being treated with antibiotics orally now.

Hold fast and don't get yourself into a state about it because these things often take time to play out.

Again, best wishes.

 

[OldManEmu]

Onx I had native valve endocarditis for 9 months before they could work out what was wrong with me. Antibiotics are very good at killing bacteria in the blood stream and therefore giving a negative result to blood cultures. However the infection continues in the heart. If you are on a PICC line and have a mechanical valve my major concern would be vegetation, as the infection will not destroy the valve and the longer term antibiotics via the PICC should kill the infection.

 

[Onx_06]

Hi



so sorry to hear of your situation. I can see why you are after people who are in exactly the same situation, as a point which is significant here is that you have a pryorlytic carbon mechanical valve not a tissue valve. As I understood it the leaflets of these valves should make it difficult to get a vegatative cluster. From On-X literature:



{my underline}

A quick review of the literature does not find any cases similar to yours, as most seem to involve other situations.

I'll do a little more digging and see what I find. My best wishes to you and I understand what it can be like to come home with a PICC line and all that. I've been there quite recently with an infection in my sternum (well beneath the sternum) from an infection given during surgery. In my case I'm being treated with antibiotics orally now.

Hold fast and don't get yourself into a state about it because these things often take time to play out.

Again, best wishes.

Thank you! I am hoping to get it cleared out ... let's pray

 

[Onx_06]

Onx I had native valve endocarditis for 9 months before they could work out what was wrong with me. Antibiotics are very good at killing bacteria in the blood stream and therefore giving a negative result to blood cultures. However the infection continues in the heart. If you are on a PICC line and have a mechanical valve my major concern would be vegetation, as the infection will not destroy the valve and the longer term antibiotics via the PICC should kill the infection.

Wow.. 9 months .. I think I have had mine for maybe 3 weeks and got treatment. Like you mentioned; the bacteria is definitely killed via antibiotics hence the 2nd blood cultures taken the next day after 1 day of antibiotics showed no growth .. The bigger question is the vegetation on the Onx valve ..let's see!

 

[Onx_06]

Hi Pellicle -
Do you have the link from the On-X literature talking about the difficulty of vegetation cluster ..

 

[pellicle]

The bigger question is the vegetation on the Onx valve ..let's see!

yes, this was the part which I was most curious about. As I underlined, what drew my attention to that was "associated with the surface of an abnormal valve". This could indicate that there is something about the surface which has allowed a vegetative mass to accumulate (as you mentioned that imaging suggested a vegetative cluster on the valve leaflet), some imperfection perhaps? I would be wanting this part clarified; is it actually present or is it an artifact in the imaging which 'looks like' a vegetative cluster?

That there is nothing in the literature suggests a few things to me:
- this happens and is usually cleared up thus no research papers
- this is very uncommon but has not yet lead to a bad outcome (and so again no research)
- there is something unusual about your situation (such as perhaps an imperfection on the valve surface)

To me its positive that its not on tissue or in the heart tissue.

Again, time will tell, so try not to over-anticipate things. I'm still waiting on an outcome on my sternum infection too ...

best wishes

 

[Onx_06]

I'm still waiting on an outcome on my sternum infection too ...

Best wishes on the sternum infection .. hope all turns out well! Thanks for the information.