Prosthetic Valve Endocarditis?

[Guest]

I've lurked on this board in the past and found the information very helpful leading up to my aortic valve replacement surgery in 2015. Unfortunately another issue has popped up so I thought this would be a good place to seek any input. I opted for a bovine tissue valve at that time and everything went smoothly up until now. I was diagnosed with endocarditis last month following a recent dental visit and spent five days in the hospital. My symptoms at the time weren't severe but consisted of recurrent low grade fever, a few episodes of night sweats and overall general fatigue. I eventually called my cardiologist after passing it off as just a virus and he admitted me to the hospital with suspicion it might be endocarditis. Through blood cultures and a TEE they confirmed it was endocarditis and immediately put me on antibiotics. They found a small vegetation on my tissue valve as well.

I've been on antibiotics for over three weeks now with another three to go. Through the TEE as well as a follow up echo this past week they have not found any damage to the valve and no leaking or abscesses. The plan for now is to finish out the antibiotics and then do another TEE after 8 weeks to check the size of the vegetation and condition of the valve. Their hope is to either clear the vegetation off the valve (which I understand is difficult to do) or to sterilize the valve and kill the bacteria. It sounds like the infectious disease doctor might put me on a long term antibiotic for another year once the IV meds are complete assuming no symptoms arise in the meantime. My docs are hopeful the antibiotics will do the trick but they have consistently said there's a 50/50 chance I will need surgery to replace the valve.

Going with the tissue valve I knew I would need a second surgery at some point (I was 31 at the time) but was obviously hoping I would get more than 3 years of life out of it. I feel perfectly fine physically and have not had any symptoms since being admitted to the hospital. I take walks most days (I like to run or bike but am not advised to with the PICC line in), do yard work and am back at work in my office job. My doctors have said it's a relatively minor infection and not an aggressive bacteria but the fact that it's on a prosthetic valve changes the equation. I am hopeful the antibiotics will take care of it but I'm also accepting the fact that I could need another surgery in the not too distant future. I'm not entirely sure what to make of the 50/50 prognosis, whether that means surgery in 6 weeks or 6 years. It's a waiting game for now unfortunately which is the worst part. Has anyone here had any personal experience with a similar situation, good or bad? Any input would be appreciated!

Kyle

 

[Agian]

No experience with endo, but thinking of you.

 

[pellicle]

Kyle

sorry to read of your infective IE ... just before you begin punishing yourself about that, from what I know the rates of Endo post surgery are about the same with tissue as mechanical, none the less its a null question in many ways.

With respect to Endo no, I've never had it, so I can't comment more than on the stats, however I've lived with an infection (and associated debridement surgeries) and know what it means to be wanding around with a pump pack of antibiotics and a PICC). The main thing is that right now you NEED to give your immune system (yes, that's still working) the best opportunity to kill this threat, so you'll need to step back from activities. Sure you may be "bummed" at that, but being dead instead may mean a longer break from doing the things you love.

I'd say that it may well be that they'll defeat the vegetative patch and that you won't need an additional surgery to replace the infected valve.

Keep focused on the daily things you can make a difference on and don't look to the future too far is my best advice. Still do your long term planning as you have always done (you know, like holidays, career direction ..) but accept that things may need to interrupt them at the last minute.

email me if you wish to chat (my username @ hotmail)

Best Wishes

 

[OldManEmu]

Kyle
I haven't had prosthetic valve endocarditis however I have had native valve endocarditis.
My story is similar to yours in that my symptoms were like yours recurrent low grade fever, a few episodes of night sweats and overall general fatigue this went on for many months when I would visit the doctor and go on antibiotics I would feel about 90% normal only to regress after about 10 days after finishing the course. I never had vegetations however because I had endocarditis for so long I had brain scans as one of the complications from endocarditis is infectious material travelling from the heart to the brain and lodging there and creating an aneurysm.
Like you I had a PICC line for a month and didn't receive the AVR until I was given the all clear from the infectious diseases department.
Were you on antibiotics for the dental work as my understanding in antibiotics are not recommended for dental work now in AVR patients unless they have previously had endocarditis?
Do you know the cause of endocarditis as over 90% are caused by either a Strep or Staph infection? M endocarditis was Strep.
I would be interested to know why they are going to put you on a year on antibiotics after the current treatment of PICC line antibiotics when this is the standard treatment for endocarditis, before there are tests for a still active infection on the valve.
The vegetation needs to be removed as depending on its size if it brakes loose in the coming years it could cause a stroke.

 

[tom in MO]

Kyle
...Were you on antibiotics for the dental work as my understanding in antibiotics are not recommended for dental work now in AVR patients unless they have previously had endocarditis?...

From the most recent guidelines I read (5 yo) antibiotics are recommended for some but not all dental work. For routine cleaning it is recommended, but it's not for a simple cavity fill or crown replacement. That being said, my dentist still likes me to have it for fillings, I think he's afraid he might slip and cut me.

 

[dick0236]

My dentist requires that I take 2000mg Amoxicillin prior to any "invasive" dental work......cleanings, fillings, crowns, etc.......anytime there is a chance of cutting into the gum tissue.

 

[KyleR]

Thanks for the replies and well wishes! It looks like my account is registered now so I can post under my username.

Pellicle: I appreciate the advice and input. I hope you're right about clearing the vegetation but time will tell. I've read many of your posts over the years and have always found your advice encouraging. If I end up facing surgery again I may drop you a line as I know you have been through multiple as well.

OldManEmu: It sounds like we had similar occurrences but mine has been pretty brief compared to yours. I'm glad to hear they were finally able to resolve your situation.

My infection was caused by a staph warneri bacteria which apparently doesn't account for many endocarditis cases. They said it's a pretty "middle of the road" bacteria meaning it isn't very aggressive but is also not the easiest to clear. I guess that's how they came to their 50/50 determination. My doctor has me take amoxicillin before any dental visit which I did in this case. I took it about 30-40 minutes before my appointment so I either took it too late or it just didn't work. They didn't say the infection was 100% caused by the dental work but there were no other obvious sources and my visit to the dentist lined up pretty well with the onset of the symptoms.

Regarding the long term antibiotic, this is just want the ID doctors said at the start. It sounds like this is more of a "suppression" therapy but truthfully I'm not sure exactly what they will do. My cardiologist told me that one of the factors to decide to operate is if the vegetation is greater than 1 cm in diameter. He said mine was around half of that before the antibiotics began. I guess the hope is to clear the vegetation completely or reduce its size to where the long term antibiotic can continue to work on it.

I have heard and read about the risk of the vegetation breaking off and causing a stroke. This has already caused me some anxiety and I'm not sure if I want to live with that hanging over my head long term. I have no idea what the odds are of that happening in my situation but I imagine if the risk was significant enough they would choose to operate sooner rather than later.

I see my ID doctor on 7/6 when my treatment ends and then I have a TEE scheduled on 7/13 with my cardiologist. I should have a clearer picture of the game plan after those two appointments. Still hoping for the best.

 

[ejc61]

Hello Kyle,
i have gotten infective endocarditis. What your doctors are doing is the proper course of action. My symptoms mirror yours and lasted several months before I got strep strain F. My vegetation measured at 12mm =1.2cm. A recheck by regular echo after 3 weeks of antibiotics reduced it to 5mm. I did have subsequent TEE’s as well. Long term, I got better and did not need long term antibiotics. My cardio continued with follow up echos for almost 3 months before he felt comfortable with forgoing surgery. I understand what you are going through.

 

[pellicle]

Hi

Pellicle: I appreciate the advice and input. I hope you're right about clearing the vegetation but time will tell. I've read many of your posts over the years and have always found your advice encouraging. If I end up facing surgery again I may drop you a line as I know you have been through multiple as well.

you'll be fine, just as its important to not count your chickens before they're hatched, its also important to not look gloomilly at the dark abyss ... the light may not be visible (or you may be ignoring it) ... we're down here at the tunnel exit waving you this way

I know (reading my post about feelings) it would appear that I was focused on negative outcomes, but (if you read carefully) the premise was always about educating myself to the possibilities so as to arm my self appropriately to fight.

and as always feel free to contact me any time

 

[pellicle]

PS

...
I have heard and read about the risk of the vegetation breaking off and causing a stroke. This has already caused me some anxiety and I'm not sure if I want to live with that hanging over my head long term. I have no idea what the odds are of that happening in my situation but I imagine if the risk was significant enough they would choose to operate sooner rather than later.

firstly we all live with death hanging over our heads, we narroly avoid it every day on the roads (assuming the oncomming traffic will respect that bit of paint in the middle of the road).

It was always there and will always be there. The only difference is that something has caused you to notice it now. So what you need to do is learn the mental tools to enable you to not stare at it like a hypnotised bird, but to accept its truth and to live every moment in a way you find pleasing.

From the book Dune:

(a worthy read btw)

 

[ejc61]

From the most recent guidelines I read (5 yo) antibiotics are recommended for some but not all dental work. For routine cleaning it is recommended, but it's not for a simple cavity fill or crown replacement. That being said, my dentist still likes me to have it for fillings, I think he's afraid he might slip and cut me.

I'd like to add to this if I may. After endocarditis, I was told to take the 2000 mg amoxicillin for all dental. Also, I take it for all procedures and surgeries per cardio and Infectious disease doctors. In fact, all my procedures need a sign off from cardio and ID. So, it's really a pain in the ***!

 

[KyleR]

Well, apparently the plan worked. I finished the course of antibiotics last week and had my follow up TEE yesterday with my cardiologist. He said he looked at every possible angle, nook and cranny and couldn't find any sign of the infection. The valve and heart are functioning as they should and there doesn't appear to be any lasting effects or damage. I was still loopy from the sedatives but my wife said my doc was very happy and even seemed a little surprised at how good everything looked. This was the best possible outcome.

The infectious disease doctor is planning to keep me on a doxycycline pill for up to a year as "suppression" therapy. This decision was made prior to the TEE though so I guess this could change given the infection appears to be gone. Personally I'm ok with the long term treatment as it will give me some peace of mind until I get a little further away from the event. Given the specific type of infectious bacteria (staph warneri) the ID doc felt confident that it shouldn't relapse as it's not a very aggressive bacteria. I suppose all of us with prosthetic valves are never completely out of the woods but I am extremely relieved with the results. It looks like I dodged a bullet this time.

It's going to take some time to mentally recover from this but physically I feel great. I sincerely appreciate everyone's feedback. This site is a very valuable resource and I hope to be able to contribute going forward.

 

[pellicle]

Hi

Well, apparently the plan worked. I finished the course of antibiotics last week and had my follow up TEE yesterday with my cardiologist.

excellent ... thanks for the follow up.

Now, an important point is that from now on you must insist on antibiotic coverage for all dental work and ensure you discuss carefully and dillegently good oral hygene with your dentist. The fact that you've had IE makes it more likely you'll get it again (well, more likely than the general population that is)

as to your mental health, if you need to chat we'll all be here

Best Wishes and take care.