Endocarditis Survivors?

[RichC2000]

Hello there,

I was wondering if there are any fellow endocarditis survivors out there. Last summer, I came down with a rather nasty infection that did a good job of nearly killing me. Thankfully, I had a great surgeon who was able to repair my mitral valve without giving me a mechanical valve. Overall, I healed up quite well, albeit it took a loooong time. I also still have nagging problems with walking too far, since the bacteria spread out in clots and managed to send a few emboli to my calf muscles, where blood flow is now reduced. Does anyone else have any nagging post-endocarditis complications or have experienced the disease?

 

[Adrienne]

I had sub-acute bacterial endocarditis in the spring of 2004. It did not come on because of a dental appointment for which I have been using antibiotics for years. The only thing I can think of is that my gum bled a bit and my usually very good immune system just didn't get rid of the bacteria before it stuck on my mitral valve. I too was able to have a repair instead of a replacement because of an excellent surgeon.

Luckily, I don't seem to have any lingering problems from the endocarditis (at least none I am aware of).

 

[Natanni]

Hello and welcome!

My husband had bacterial endocarditis 2 years ago this month at 34 years old. That was the worst week we have ever experienced in our lives and he has thankfully recovered without any long term complications. We learned of a 45 year old man who lost his life to BE last week. My husband had vegetations on his bicuspid aortic valve, but caught early enough so not to have spead.

Make sure you have talked with your doc about extra precautions needed before any inpatient/outpatient procedures. Often the course of treatment will be different for a post endcarditis valve patient!

Wishing you a speedy recovery!

 

[Philip]

Another endocarditis survivor here. Scary stuff! My endocarditis occurred after valve replacement, although I escaped relatively unscathed endacarditis was a much larger challenge than valve replacement. I'm sure it was the uncertainty of the situation and that I knew someone who died from the condition that made it a difficult time for me. During the course of treatment (58 days of IV antibiotics) followed by high dose oral antibiotics I did loose approximately 50% of my kidney function, fortunately this causes no symptoms and has stabilized.

As for lingering problems, I now feel better than I have in years and my fitness level is better than it was pre-op and continues to improve. I seldom miss a day of working out. I'm running and riding a little faster, longer and seldom bow out of martial arts training. To quote Quincy Jones "I'm back on the block!" I hope you are there soon.

Philip

 

[sue943]

Another survivor. Mine was caused by lithotripsy treatment of kidney stones without antibiotic cover. I had one acute episode when I felt really ill then it settled down to being subacute, I just felt off colour. Then I had a stroke caused by vegetation breaking off. Six weeks in hospital on intravenous antibiotics. Gentamicin affected my kidney function and I am now wondering if that was the cause of my partial loss of hearing.

My mitral valve was completely knackered and my aortic valve to a lesser extent (it was rated 3/5) but they decided to replace it at the same time rather than to re-operate later.

RichC2000, I am interested to see what you have written about your calves, I also cannot walk far without pain in my calves and I had been putting this down to the fact that I lost all my muscle when ill and although it has built up again that it just isn't the same, a hundred yards and the pain kicks in.

 

[OldManEmu]

Another Survivor

Another Survivor

I also had sub-acute bacterial endocarditis, in my case I had it for 8 months before it was properly diagnosed, not only had it destroyed my AV it had also spread into my heart muscle and I had 2 abscesses inside my heart. Fortunately I have no lingering problems 2.5 years post AVR surgery; my heart took a year to fully remodel back to normal from being very enlarged.
Like Philip I feel better now than pre surgery and work out at the gym a minimum of 3 time a week. The surgeon and cardiologist both say my heart has returned to normal function.

 

[ChuckVSP]

Another one, here!

Another one, here!

This was scary stuff for an 18 year old college freshman who had never had more than a cold... We had no idea what was going on, had large weight loss, stayed fatigued, etc. Had blood clot in right calf, which started anticoagulation therapy. This was November and December, 1981. Suffered Congestive heart failure February, 1982, and the local hospital transferred me to Duke University Medical Center (none of our local hospitals would even attempt heart surgery at that time, few do now!) Had the Mitral repaired, and aortic replaced with Starr Edwards valve. Spent 48 days at Duke for the IV antibiotic treatment. The Starr-Edwards Aortic served me well for 19 years, but an aortic aneurism caused it's replacement (as well as the mitral) in 2001. Hope I get another 50 or 60 years out of these tickers!

Hope the info helps, I don't think I have ever mentioned any of this outside my immediate family.

 

[ClickerTicker]

Another survivor here... mine was in 2002.
I'll never know for sure, but I suspect a tooth extraction was the entry point. Over six weeks in hospital having the heavy-duty antibiotics pumped in. Mitral valve too damaged to save. Left with some heart damage which has lowered my LVEF, although that seems recently to have started to creep up.
Once they sorted out my heart failure at about five months after the op, I was not aware of any physical limitations - can walk long distances without problems.

There's a more detailed version of some of this in the "Stories" MVR section of this site under "Ron".

 

[Lynlw]

Justin had sub acute BE when hwas 11.Luckily it was caught before he had any damage.
I don'tknow if yofollwedAndrew'sthread,but he s 17 andjust got home from 10 weeks in the hospital following BE.That poor kid has gone thru a lot.But Thank God is home and doing better.

 

[RichC2000]

Sue,

The calves were a rather uncommon complication of endocarditis. About a month before the docs understood what was going on with my legs, they would random give out on me and cacuse immense pain. The docs thought it was some sortof nerve issue. After the diagnosis of endocarditis came together, they were able to put 2 and 2 together and figure out that my leg pain episodes were clots caused by flaking vegitation. THey are still in the arteries, and thus, I now have been diagnosed with a condition known as PAD, or Peripheral Artery Syndrome. Basically, the clots limit the blood flow and make my legs cramp from lack of blood flow. This is normally caused due to cholesterol/plaque build up. The creamps kick in after after maybe a hundred yards or so, or immediately if I go up steps or an incline. I am talking to my doc about possible options. Does this sound familiar to you?