A tale of Endocarditas and valve replacement.

[James Redman]

Please forgive me....long time..3 months lurker..first post here. Love the collective knowledge.
Sooo... Started feeling under the weather October 2018, visited my regular Dr. Lots of blood work then PET scans, MRI and even a visit to an Oncologist/Hemotologist. No clear answer except white blood cell count was up.
Got to the point that I couldn't get out of the car....at 54 years old.

 

[James Redman]

Part 2:
Finally went to the hospital, Infectious Disease Doc. Admitted right away via the ER. After 3 days in ICU...they started treating me with massive doses of antibiotics for endocarditas.
2 weeks of IV amoxcillin and gentamicin plus a pic line and more antibiotics as an out patient.

 

[James Redman]

So any who, the infection went away but valves were badly damaged, supposed to get stronger but only had 5 days left on this earth. Surgery soon followed. New mechanical Aortic and Mitral valves... Wooo Hooo! Stay tuned for fun post op happenings

 

[dick0236]

Hi James, glad you found us. This group can help you make lemonade outa the lemon

 

[James Redman]

Hi James, glad you found us. This group can help you make lemonade outa the lemon

Thank you Dick0236.

 

[James Redman]

It has been quite educational and dare I say... Maklng it through all this stuff.
Living, thank goodness, and learning how to make Lemonade

 

[Seaton]

Wow, James. Glad it all turned out for the best and things were dealt with speedily.

A big welcome to the site from London. Good to have you on here sharing your heart story.

Sending good thoughts and the best for the days ahead to you.

 

[vivekd]

James: Best wishes from Atlanta

 

[Clippy99]

Very similar story...I stayed sick for months. 9 different drs. finally someone noticed a murmur. Hospital then antibiotics. Dumbest move I made was delaying surgery for. a few months. I got a pig valve. Alls well that ends well.

 

[Rickerb]

Glad your on the way back to normal. Hope you can recover quickly

 

[carolinemc]

@James Redman What kind of valve did you get? So glad you did right and got help. Now, you take your time and do not rush recovery. For the chest, it takes a year. The rest, less than 6 months. Glad you are doing normal, for that helps in recovery. Welcome to the club and come in anytime to ask questions or give advice. Hugs for today.

 

[ClickerTicker]

Yes, endocarditis is not nice. I had a mitral valve repair needed which I rather foolishly delayed. In the meantime got endocarditis (I think from extraction of a loose tooth). By the time I'd been diagnosed - had night sweats and uncontrolled shivering occasionally during the day - the endocarditis had damaged my mitral valve too badly for a repair.
I have a Carbomedics mechanical valve.
Six weeks in hospital, most of that with two or three heavy duty and very nasty antibiotics via a central line.
Great way to loose weight - but I'll never be able to market it as a diet plan...

Anyway, that was in 2002 and I'm still here and, as far as I know, fairly fit. The acute heart failure damage to my heart caused by the endocarditis has reversed somewhat - my ejection fraction is still a bit low but much higher than just after the episode.

Luckily one of the major hassles of having a history of endocarditis - needing antibiotic cover for dental hygienist visits - has been relaxed relatively recently. Some years back I was having to have this done at a dental hospital with IV antibiotic cover - now the advice seems to be that oral cover is only needed for really deep hygienist work or extractions.

Good luck with your recovery, don't push yourself too hard.

 

[tom in MO]

Yes, endocarditis is not nice. I had a mitral valve repair needed which I rather foolishly delayed. In the meantime got endocarditis (I think from extraction of a loose tooth). By the time I'd been diagnosed - had night sweats and uncontrolled shivering occasionally during the day - the endocarditis had damaged my mitral valve too badly for a repair.
I have a Carbomedics mechanical valve.
Six weeks in hospital, most of that with two or three heavy duty and very nasty antibiotics via a central line.
Great way to loose weight - but I'll never be able to market it as a diet plan...

Anyway, that was in 2002 and I'm still here and, as far as I know, fairly fit. The acute heart failure damage to my heart caused by the endocarditis has reversed somewhat - my ejection fraction is still a bit low but much higher than just after the episode.

Luckily one of the major hassles of having a history of endocarditis - needing antibiotic cover for dental hygienist visits - has been relaxed relatively recently. Some years back I was having to have this done at a dental hospital with IV antibiotic cover - now the advice seems to be that oral cover is only needed for really deep hygienist work or extractions.

Good luck with your recovery, don't push yourself too hard.

In the US, they recommended oral antibiotics for all tooth cleaning if you have a mechanical valve of any type and in any position. I don'take to it too well and about 2 years ago asked if it was necessary. My cardiologist said yes. When I pushed and asked if there was any hard evidence, he emphatically stated that in his personal experience he has had patients get endocarditis from simple dental work.

One person on here had endocarditis and was told by their infectious disease specialist to use an oral disinfectant (e.g. Listerine) before any dental procedure. My dentist is quite happy to let me rinse at the beginning

 

[Gazza01]

Please forgive me....long time..3 months lurker..first post here. Love the collective knowledge.
Sooo... Started feeling under the weather October 2018, visited my regular Dr. Lots of blood work then PET scans, MRI and even a visit to an Oncologist/Hemotologist. No clear answer except white blood cell count was up.
Got to the point that I couldn't get out of the car....at 54 years old.

What were your symptoms please. Early and later. Thanks

 

[Clippy99]

I think my illness is pretty easily and obviously traced back to dental work. I started felling ill about 2 weeks after. I had non-acute endocarditis. I have had mono and that's what it felt like...as a matter of fact thats what I thought it was and the drs. sure didn't have a clue. So I just felt like crap for 4 months.

Some of the best advice I got here was rinsing with listerine before and after brushing. No clue if it keeps me well but terrible mouth ulcers have plagued me forever and they completely disappeared. My teeth and gums look great also. So I am a believer in that either way lol.

My dentist stays with the antibiotic myth. I go along but I think there is pretty good data out there it probably does not mean much.

 

[Clippy99]

Gazza.

I'll chime in on that because I think mine was similar:

1. I started out in Feb 2015 just feeling unwell. Like I was coming down with something

2. I would pop 2 Advil and just keep going...almost like a cold.

3. Chills...and they worsened as time went on...like insane chills. blankets, sweatshirts. Very clear memory of a May Day with heat on max. Driving down the road.

4. But always felt OK with Advil. I almost always broke a sweat. But never really had a fever.

5. Finally after a couple of months nausea became more of a factor. To wear I would throw up occasionally. But I never got rip roaring sick. I don't think I missed more than a couple of days of work.

6. Dr after dr..lime disease , mono, prostatitis ( antibiotics helped but only till running the course )

7. Right as I got diagnosed I noticed the red streaks under my fingernails and the bumps on my hands...2 of the signs. So as a internet detective I had narrowed it down myself...well at least to a few things.

Bottom line is advocate for yourself....this site is so cool. When you get some bright people locked in on one thing you will often find some folks here can really push you in the right direction.

 

[pellicle]

Hi and welcome

Please forgive me....long time..3 months lurker..first post here. Love the collective knowledge.

glad you made it ... as @dick0236 said, here we'll help you make lemonade out of the lemons life handed you.

There are a few Endo stories here (like Ski Girl) ... but she is now living a happy life over in Perth (and pretty much no longer visits us here).

In time this will be behind you, whats important is that you don't let it be a boat anchor that drags you down. Keep looking to the positives and enjoy life.

Best Wishes

 

[egar]

Welcome James!

Like you, Clippy, and Clicker, my endocarditis story is very similar. Started feeling like I was getting the flu a few days after a dental cleaning. Within a week, I was too weak to mow the grass or do any physical activity.

I already had mitral value prolapse issue that we'd been monitoring annually for a few years. I knew what the symptoms of a failing valve were, and I was starting to see the symptoms appearing. I went in to have the valve checked. The echocardiogram showed a dramatic worsening since my previous echo just a couple of months before. So bad, they admitted me to the hospital immediately. Within 12 hours, they had diagnosed endocarditis and started me on IV antibiotics. After a few more days in the hospital, I went home to complete my course of antibiotics (IV with a pic line) over the next month.

By the time the infection was knocked out, my mitral valve was trashed. The surgeons tried to repair it, but too much damage was done and they ended up replacing it with a mechanical valve. It's been 8 months now and I'm doing great, probably better than before the endo due to the new valve.

Before this event, I had never met anyone who had endocarditis. Now that I'm more aware and sharing my story, I've met quite a few people who had gone through this. Everyone of them ended up with a valve replacement. Endo is a serious thing, and can be fatal if not treated in time. I'm glad you, me, and everyone I've talked with had the proper medical care to come out the other side!

 

[James Redman]

@James Redman What kind of valve did you get? So glad you did right and got help. Now, you take your time and do not rush recovery. For the chest, it takes a year. The rest, less than 6 months. Glad you are doing normal, for that helps in recovery. Welcome to the club and come in anytime to ask questions or give advice. Hugs for today.

 

[NealR]

James glad you're OK.. I had a bout of endocarditis in October, which I think was from a dental cleaning in June. The bacterial can enter the blood stream and vegitate for a while. When I visited my GP, he had no clue although I could barely walk. Gave me some antibiotics, but 2 says later I went to the ER, and they diagnosed me with pneumonia. More anti biotics, I stabilized, but never got over it until they gave me a blood culture, which confirmed what I had. Now we are in late November. Admitted to hospital and released with 8 weeks of vancomycin. I got better, and there was a small vegetation on my mitral valve. I already had two bioprosthic valves, but felt better after treatment. But valve conditions worsened and ended up having both valves replaced in late April. Rough surgery, (had a blood reaction that almost killed me), but after 8 weeks today... I'm doing pretty good. I suspect I got the IE from the dental exam, and I used antibiotics (amoxicillin) prior to the appointment

This post is a great post because it exposes so much about valves and IE. I went through hell and only by the grace of G-d, am I hear today.

Good news is I can throw a baseball and swing a bat again, and at 60..with two new valves,, I'm pretty good and hope to make it 15 years with new set.

Hope your recovery continues to go smooth and wish you all the best.