Endocarditis

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Dodgy Ticker

New member
Joined
May 3, 2020
Messages
2
Hi all

Just discovered this forum. Had a look. And I have a question

Due to Infective Endocrap, I had emergency surgery 18 months ago and had to have both aortic and mitral valves replaced at the same time. I chose mechanical (bad decision, but it was all so last minute emergency type of decision taken a few minutes before I was to be declared a dead person) so I sound like a ticking time bomb!!

I was wondering how rare it is to have to have both valves replaced at the same time like me...

In brief, and without wishing to write a sob story. When I was helicoptered to France's central Cardio facility (I live in France) the doctor actually thanked me for coming to see him, as he had not seen such a severe case before in a living patient!! Great start to the rest of my life.....

I saw myself being a welcomed case study for his next bursary...

In all I have to say I have been looked-after with astonishing care and attention and I have nothing but positive things to say about the French public health system (well - ALMOST nothing), but am left wondering how rare is my case....

Does anyone have any feedback they can offer?

Many thanks
 

Seaton

Well-known member
Joined
May 13, 2015
Messages
363
Location
London, UK
Hi all

Just discovered this forum. Had a look. And I have a question

Due to Infective Endocrap, I had emergency surgery 18 months ago and had to have both aortic and mitral valves replaced at the same time. I chose mechanical (bad decision, but it was all so last minute emergency type of decision taken a few minutes before I was to be declared a dead person) so I sound like a ticking time bomb!!

I was wondering how rare it is to have to have both valves replaced at the same time like me...

In brief, and without wishing to write a sob story. When I was helicoptered to France's central Cardio facility (I live in France) the doctor actually thanked me for coming to see him, as he had not seen such a severe case before in a living patient!! Great start to the rest of my life.....

I saw myself being a welcomed case study for his next bursary...

In all I have to say I have been looked-after with astonishing care and attention and I have nothing but positive things to say about the French public health system (well - ALMOST nothing), but am left wondering how rare is my case....

Does anyone have any feedback they can offer?

Many thanks

Welcome @Dodgy Ticker 🙂
Glad all went well with your emergency surgery!

I can’t really offer any feedback on your situation (I’m sure numerous others can), but one suggestion I have is that you post this again as a separate post with its own title. So that your post isn’t buried in this fairly long stream on endocarditis. More people may see it then. Just a suggestion.

Very best of continuing health to you.
 
Last edited:

jlcsn2015

Well-known member
Joined
Sep 21, 2015
Messages
90
Location
Toronto
Hi Dodgy, i dont think you should have second thoughts about the valves in your case; i have access to about 12 doctors in my family, and they all agree that the Mitral Val and tissue is not such a good match; unless you are ok with repeated procedures over time, regardless of what you may hear, a tissue valve has a life spam for sure; i also had the same dilemma and at times when worry about warfarin tell myself "ah, made a mistake". but the truth is, that i was 63 when got the mech valve, and was told to prepare por a second op around 78, really ?, nah, not for me; get it done once and over; loosing some weight was important for me, the cardiologist told me "even when you are sleeping" your hearts works harder if you are over weight, i did what i could, not we all can do, and changed my eating life, it was very hard for my tastes, but i lost 45 pounds, and that made a difference, all i want is not ever go back for surgery, last words my excelent surgeon told me on discharge day were "You Dont Want to See Me Again".... when i said "hope to see you again" , guess i said the wrong thing while trying to say thank you, but i dont forget what he said...., also told me 5 times "you must must must must must take antibiotics before you see a dentist", HOPE all goes well with you, keep in the loop, lots of good people here with the intention of support,
 

guybaxy

New member
Joined
May 5, 2014
Messages
4
Location
Sydney New South Wales, Australia
My pcp thinks I may have endocarditis. Crp is 5.152. I had influenza A at the end of March (yes I had my flu shot). I had a 102 temp that they didn’t treat because it was the flu. By the time they diagnosed the flu it had developed into an upper respiratory infection. So I had this temp for just over 2 weeks before I got antibiotics. Then on the first of July temp came back. This was a kidney infection which caused lower back muscle spasms and an erratic heart rate for about 3 weeks. Temp came back late July. A third round of antibiotics. Well yesterday temp came back yesterday. urinalysis and wbc are good. But crp is not good. Will try to get an appointment with cardiologist tomorrow. Can anyone give me some information on their experience with endocarditis? I have a grafted st Jude valve—9 yrs ago.
I had Sepsis, followed by Endocarditis 8/2013, native valve, symptoms, rigors, hot/cold, AF up to 180, admitted, dehydrated, blood cultures, revealed Staf Aureus, - TOE revealed huge growth over both leaflets of MV, standard treatment, six week, Flucox, fortunately MSSA - 2gms of Flucox every 4 hours for six weeks, three weeks growth fell off and went to kidneys, caused Renal Infarcts. Normal kidney function. OHS for MV repair- failed after six weeks then had MR replacement, so two OHS in six weeks at 50yo. 89 days in hospital 2013, some complications Brayacardia but did not require a pace maker. If i have any inkling or on slight temp, i am straight off to Emergency, dont muck around with GP visits, too risky, need blood cultures, before start of antibiotics, as they can mask the infection
 

Protimenow

Well-known member
Joined
Aug 10, 2010
Messages
3,466
Location
California
Dodgy - you didn't state your age. You'll probably get used to the ticking and just tune it out most of the time. For me, if I'm in a really quiet place, I can use it to check my heart rate - but it's easier to put two fingers on my wrist.

I think you'd probably prefer to put up with the ticking over reoperation in the future to replace a valve -- and it will be harder for the surgeos because of scar tissue from your first surgery. If it was me, I'd choose mechanical (I have a mechanical aortic valve).
 

jcgtok17

Well-known member
Joined
May 13, 2017
Messages
57
Location
Tokyo, Japan
IE (Infective Endocarditis) can be very dangerous to numerous organs. In my case, the bacteria came from my own mouth, tooth plaque. Often a result of oral surgery it can come from flossing or aggressive brushing as well. I was diagnosed in April 2017 and had my AVR surgery May 1, 2017 (3 year anniversary just passed). I had a undiagnosed bicuspid aortic value which is more vulnerable to IE infection. As the heart valves have no blood flow of their own, serving a largely mechanical function, the bacteria attaches and once the "vegetation" grows to 10mm undiagnosed it often bore through the value tissue causing severe regurgitation. In my case they caught it just in time. I was in a state of heart failure on being admitted. Very key to get a diagnosis as early as possible. Once in the bloodstream (i.e. bacteremia) any organ is "fair game", incl. the brain. Not to be taken lightly for sure.
 

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