Endocarditis relapse?

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Bugsy

Bugsy

Well-known member
Joined
May 12, 2006
Messages
51
Location
Orlando, Florida
I was just wondering if anyone has had endocarditis again after they had their valve replacement. I've been really tired lately but I'm more inclined to think it's allergies. We get all kinds of nice things in the air this time of the year in Florida. I'm curious how common it is.
 
Hi Bugs

Two people that I know of who had post-op endocarditis were Philiip and Cathy Canistro:

http://valvereplacement.com/forums/showthread.php?t=18732&highlight=endocarditis

Not sure if either of those were relapses per se.

I was an endocarditis victim/survivor. I am always a little nervous whenever I have unexplained fever or malaise, then breath a sigh of relief when the flu coughing starts or someone in close proximity develops similar symptoms.

Thankfully, I have never had a relapse, just some kind of diagnosed but unlocated infection right after my surgery, which was aggressively treated with IV antibiotics.

I can't recall reading anything about the frequency of endocarditis for post-op patients, but I have the impression that risk is decreased after surgery, barring any kind of atypical, turbulent blood flow around the valve. Perhaps someone else can confirm/refute my understanding with some personal experience or research knowledge.

Any of us with history of endocarditis and abnormal valves (reapaired / replaced) should be vigilant. The hard part is trying to discern paranoia from serious illnesss, particularly when endocarditis symptoms are so variable and often similar to common ailments like the flu.

Hope you are feeling better soon.
 
The first time I saw my surgeon in December 2004 and he only had my echo reports from another hospital so thought a more classical type of repair could be done, he said that the risk of endocarditis is reduced significantly after a repair (I don't know about a replacement). Now, that being said, I know that the composition of the valve also plays a role in the risk, and they say that once you've had endocarditis, there is more of a risk (maybe because of the lesions, etc.). So, I don't know if my own risk is significantly less or just a little bit less, but I think that the fact that with either a repair or a replacement that there is much less regurgitation, that just that reduces the risk. That does not prevent me from panicking if I get a fever!!!
 
Thanks for the responses. I agree, sometimes I think I'm paranoid but I guess that's normal. It took the doctors a long time to figure out what was wrong with me (they kept testing for cancer) and by the time they figured it out I was very sick and the valve was pretty much destroyed. What's really hard is making myself go to the Doctor. I don't mind going for my annual echo but for anything else it's a real strruggle. That reminds me; I need to get my flu shot.
Damn!
 
My husband had bacterial endocarditis d/t strep viridans. His body will grab the bacteria easier now than the first time and treatment will be more difficult. Be very aware and if there is any question at all, go the the doctor and get serum blood cultures. This was what we were told from the infection control team at Mayo Rochester that worked on my husband in 2005.
 
endocarditis relapse?????

endocarditis relapse?????

Bugsy,Try and make this quick in 2006 i got very sick with prothetic valve endocarditis Iwas off work for 8 months but i have never been so ill having my aortic valve replacement in 1992 was a treat compared to a bacterial infection . I too was taken to cancer ward to examin the spleen though as they felt it would rupture on me and thats where the testing was done ,but it took a whole month of iv`s of gentimicin and vancomycin which because id run fevers for 2 weeks they felt that this being a late prosthetic
valve endcarditis theyd adequately treat me with the iv antibiotics...however wanted to pic line me do to the sensitiveity i had to the two drugs they couldnt for fear of more infection..oh how i suffered that month of the iv`s and the infection i got with strep was also sensitive to the vancomycin. It was the worst time of my life and i can agree to some postings that when i get sick i dont wanna go in to Drs. a cough scares me and the flu ...but however they made it clear to me it wouldnt come back unless i developed a high fever and any fever i may happen to get demands blood cultures immediately.the transesophagels were not pleasant and they saw no vegetation or abcess on the aortic valve and also i have a very deteriating mitral valve...which my turns comming again for surgery in good time.however i donot wish this on anyone it is soooo bad that yes i avoid going to see drs for flue or too much i usally do go and end pu on antibiotics
right away but.........makes you wonder how a person can take that much antibiotic and think one day they wont help me anymore. My immune system has become very low the greeter at walmart can sneeze on me and im done ....im sick and my workplace is full of germs i really have to be careful and cautious working with prisoners theres always the potential for picking something up but then again someone can bring a germ home too...however Bugsy ive been told endocarditis comes with high fever ......but who am i im only experience not medical profession.....hope this helps you some...take care
zipper2
 
Bugsy..
Hope you get the answers you need! If you are serioulsy concerned.. get to the doc and get the necessary tests done.

zipper..what a nightmare ordeal you endured!
 
Having had endocarditis once and now mechanical valves, I have been told that I am very high risk for getting it again. I had rigors when the infection first took hold, then again after the vegetation broke off and gave me the stroke, I assume that caused it to flare again. So for me, if I get rigors I will be shooting off to the doctor immediately. For those who do not know what rigors are, it is uncontrollable shaking.
 
Found this study interesting to answer question of odds of getting endocarditis again:
-----------------------------------------------------
Long term results of mechanical prostheses for treatment of active infective endocarditis
J M Guerra, M P Tornos, G Permanyer-Miralda, B Almirante, M Murtra, J Soler-Soler
Cardiology Department, Hospital Vall d'Hebron, Pg Vall d'Hebron 119-129, 08035 Barcelona, Spain


Correspondence to: Dr Guerra [email protected]

Accepted 31 January 2001


OBJECTIVETo analyse the long term results of mechanical prostheses for treating active infective endocarditis.
DESIGNProspective cohort study of a consecutive series of patients diagnosed with infective endocarditis and operated on in the active phase of the infection for insertion of a mechanical prosthesis.
SETTINGTertiary referral centre in a metropolitan area.
RESULTSBetween 1975 and 1997, 637 cases of infective endocarditis were diagnosed in the centre. Of these, 436 were left sided (with overall mortality of 20.3%). Surgical treatment in the active phase of the infection was needed in 141 patients (72% native, 28% prosthetic infective endocarditis). Mechanical prostheses were used in 131 patients. Operative mortality was 30.5% (40 patients). Ninety one survivors were followed up prospectively for (mean (SD)) 5.4 (4.5) years. Thirteen patients developed prosthetic valve dysfunction. Nine patients suffered reinfection: four of these (4%) were early and five were late. The median time from surgery for late reinfection was 1.4 years. During follow up, 12 patients died. Excluding operative mortality, actuarial survival was 86.6% at five years and 83.7% at 10 years; actuarial survival free from death, reoperation, and reinfection was 73.1% at five years and 59.8% at 10 years.
CONCLUSIONSIn patients surviving acute infective endocarditis and receiving mechanical prostheses, the rate of early reinfection compares well with reported results of homografts. In addition, prosthesis dysfunction rate is low and long term survival is good. These data should prove useful for comparison with long term studies, when available, using other types of valve surgery in active infective endocarditis.

Website info:
http://heart.bmj.com/cgi/content/abstract/86/1/63

-----------------------------------------------------------------
This report says what I want to hear, so I'm not going to look any further :D
 
Endocarditis Relapse.

Endocarditis Relapse.

Hi Bugsy,
I am new to the forum and I have Just noticed your comments. All that you mention including your fear of visiting doctors are identical to mine.
It all started in last June with fever, etc. Unfortunately, at the beginning doctors did not consider my case as serious. Antibiotics were given without any blood culture in advance so still today I am not a 100% sure about the bacteria responsible for destroying my mild stenotic aortic valve. Im now on a Carbomedics mechanical aortic valve.
The worst part of the story is that I do not know how the bacteria entered my blood stream. This is scary for me since I do not know how to defent myself from any Endocarditis relapse.
The good part of the strory is that I am alive due to an excellent and responsible surgeon that saved my life.
If you, or anybody else can help in giving further information about protection against endocarditis relapse I will greatly appreciate.
It was a bad exprerience and I was fortunate to be saved despite my my bad luck at that time.
Wishing you all the best,
Petros
 
I had endocarditis in 1999 and have never had an indication of it coming back. I always make sure to take antibiotics before my trip to the dentist
and have never had any tatoos or bodypiercing done. I never every want to
experience that disease again!!!!! After the dentist I always watch for spots
on my hands and is there is any blood streaks in my nails. These are two
symptons of the disease.
 
jbriault said:
I had endocarditis in 1999 and have never had an indication of it coming back. I always make sure to take antibiotics before my trip to the dentist
and have never had any tatoos or bodypiercing done. I never every want to
experience that disease again!!!!! After the dentist I always watch for spots
on my hands and is there is any blood streaks in my nails. These are two
symptons of the disease.
Click to expand...
I had forgotten about the blood streaks in the fingernails. What do the hand spots look like though? Thanks.
 
Mine were tiny purple spots on my hands and feet and my feet were very swollen, I had high fever and every part of my body ached.
 
Endocarditis

Endocarditis

I am an Endocarditis survivor and fortunately haven't had to deal with reinfection. I never had any of the bleeding related indicators of Endocaditis, only the joint pain and that was only when what I know think was after I was initially infected. Once the joint pain cleared the only ongoing symptom was night sweats, that is why it took 9 months of on and off again antibiotic treatment until it was discovered in a blood culture.
The lesions I think you are referring to are "Janeway Lesions" these usually occur on the hands or feet. I have attached a link with an illustration.:)


http://www.nlm.nih.gov/medlineplus/ency/imagepages/2455.htm
 
My boyfriend is just in his 6th month of recovery from endocarditis and we have been told by his doctors in infectious disease that we should always go to a doctor if he has any kind of fever-just to make sure. If his fever is over 101 they must do a blood culture as well if he has night sweats, rigors (shaking), fatigue or petechiae (little red spots on your skin, fingernails, in your mouth, eyes or any kind of rash). The rate of reinfection is the greatest within the first year after that it decreases but you are never out of the woods.

The ID doctors told us if you do get reinfected and it is caught early usually antibiotics will clear it up and there won't be any damage to the valve. They had a patient in a few months before us that had a mechanical valve and 2 years after surgery felt a little chest pain but ignored it. By the time she was at the hospital the vegetation had destroyed the valve and tissue surrounding it. She survived but it was a lesson not to ignore your body.

As for protection against endocarditis reoccurring there is no silver bullet. Staying healthy and keeping your immune system up is vital. The bacteria my boyfriend had is the general bacteria found in your mouth. Each time we brush our teeth we release bacteria into our system. For most it gets filtered by our blood and broken down, for some it attaches to heart tissue and grows.

The AHA recommends that high risk patients (i.e. someone who has had it or has a valve replacement) take a dose of antibiotic prior to having dental work or invasive procedure to help limit the risks. However, any type of bacteria from a cut, burn etc that enters the blood at any time can be responsible so it is never too silly to check with a doctor...hopefully one who is familiar with endocarditis or like most of us you go untreated for too long!

Good luck,
Theresa
 
Interesting, Tim! I wonder if it will be safe for valve patients?

I recall reading once that flu shots are okay for valve patients but NOT the live virus flu spray. I don't ever take the flu shot anyway though--really just my personal preference. Recently I'd heard that this year's flu vaccine only covered about 40% of the flu that has been raging anyway.
 
I have had the flu every year except for one year. That year I was to busy to
get it. I was so sick that winter. I have never missed since. I do feel
the flu shot is very important
 
Hi Bugs
I had endocarditis at 6 months post-op and I have my share of allergy related symptoms. For me the noticeable difference was the fever associated with the endocarditis. I avoid the doctors whenever possible but if I ever get a fever again I will get it checked immediately and all with valve replacements should do the same. As you know endocarditis is nasty stuff.

Philip
 
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