My endocarditis, January 2012

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. Gentamicin and Vancomycin are like the nuclear bombs of antibiotics they are last resort medications. Gentamicin leads to deafness and/or renal failure in a percentage of patients after several weeks of use.

Vancomycin too can only be used for short periods without damage to humans too. I suspect that is also a factor in organisms building tolerance. If you don't kill the population then there will naturally be the tolerant and resistant ones remaining in the gene pool.

:)

Microbiology will only have so long to provide wonder treatments from nature before we create a selection pressure to develop organisms which can survive in that environment.
 
Hi

A lot of people have said "I don't know if I could do that..." but I think probably most people would find the strength if they had to.
an old saying of mine is people become their best when they are under the worst.

Everything I do now has an attitude of "Endocarditis, I slapped you..." about it.
pardon me for saying so, but I suspect that the hospital team and medical science had a lot to do with it ...

Facebook was a pretty useful tool for me too, it kept me in touch with my friends and family, made it so I didn't have to explain everything 30 times and kept me entertained

100% !!

I am so glad to have had my phone and access to the net via 3G ... compared to my pre 21st century surgery things weren't nearly so dull.
 
pardon me for saying so, but I suspect that the hospital team and medical science had a lot to do with it ...

Oh, absolutely :) I've praised them heaps elsewhere, I'm under no illusions that I owe my life to my surgeon Mr Shiploini, his team, the doctor who transferred me to the London Chest Hospital and the care everyone there gave me over that month. Psychologically though I very much saw it as me vs. the infection, and that one I won.
 
Hi All,
Am new to this forum and have just read through this thread. At the end of August last year, my PCP made me go to get an echo done. I was 5 months pregnant and was suffering debilitating joint pain, fevers that were undetected by me (it was summer, I was pregnant) and other symptoms that I had chalked up to having a rough pregnancy. I was born with an aortic stenosis that had never been a problem and always did the prophylaxis before dental appointments, etc. etc.

Sure enough the next day, the echo tech (who had actually done my echo during my first pregnancy three years prior) summoned a few doctors and before I knew it my blood was being drawn for cultures. They told me that I should expect to head into the hospital the next day, that a team of people--cardiologists, maternal fetal medicine doctors and infectious disease doctors--would be ready to take my case. My cardiologist was flying to Germany and viewed the echo at 30,000', he knew everyone involved and stayed on the case with them.

Bacterial endocarditis was diagnosed, the bacteria identified as a strep-type that probably entered my mouth. Had I been to the dentist? Yes, in April though I took my usual dose of Amoxicillin. Did I use drugs? Nope. Travel? Traumatic cut? Nope. I spent three weeks in the hospital, they had to maintain the right dosing to help me yet not harm my otherwise growing baby. At first I had Vancomycin, then a combo of Ceftriaxone and one other antibiotic that I can't remember.

I was sent home with shot veins from IVs that only lasted two days or so and a PICC line (had one inserted then removed, nearly passed out when the second was inserted) and continued that therapy for two weeks until I went into premature labor. At 30 weeks on October 4th, my son was born at 3lb. 5oz. via c-section and would spend the next 66 days in the NICU. A week later to the day, I had my aortic valve replaced (On-X), my mitral valve shored up with a collar (?) and a previously undetected hole in my heart repaired. My tenth wedding anniversary was two days later, not much of a celebration in a hospital room. A week later, on October 18th, came home. In November I turned 39.

I have had many friends and family supporting me & my family with visits, food and even a home visit by my hairstylist. Having a husband and three year-old at home complicated matters and led to PTSD for me which I am trying to deal with to this day. Zoloft and therapy are helping, all of the doctors took care to help with my mental health. My son is quite healthy given the circumstances. I have not been working since August and am set to go back at the beginning of February.

My recovery has been going well, though I still have lingering symptoms like clubby fingers (my O2 has always checked out fine) and little nail splinters, though it seems like the white spots I have always had in my nails have subsided some. My hope is that since I am only three months out of surgery, these will eventually go away? I have been clear from infection since September when I went home from the hospital the first time.

Still to this day, I have no answer. It has left me feeling vulnerable, to say the least. Some days are much better than others as we are doing what we can to get back to normal. I am glad for this website and the chance to connect with others. I wish you all continued health!
 
JenRC

Welcome to this place. Sorry to read your story. Mine is no better, but we all do our best.

I wish you good health and personal happiness

:)
 
Wow Jen that's a heck of a story! As a fellow endocarditis victim, I can tell you that what helps me feel less vulnerable is the phrase 'lightning never strikes the same place twice'. Clearly there is no guarantee of 'never' or 'always' but you've had your rough patch and karma should give you a clear ride now!

I was fairly traumatised by my experience too, but now 16 months on it's getting more towards a good story, and less a traumatic event that still affects me.

Glad to hear you made it through and that your son is healthy!!!!
 
Jenrc,
I am sorry to hear of your difficult story. Contracting endocarditis while being well along in a pregnancy has got to be very scary to say the least. It’s good that you had a team of experts managing your case and they were able to eradicate the infection. And I’m glad your son is doing good considering what he went through as well.

I think endocarditis experiences can vary quite a bit, but all are very dangerous. For me, I felt very vulnerable during my OHS experience and recovery having just been cleared of the infection a few weeks prior to my operation. I also had a few scares once I developed inflamed pain in my teeth & gums post-op as my teeth were still realigning after my tooth extraction and I was probably grinding at night due to stress. Having come down with something so mysterious and dangerous as endocarditis shook my confidence for about a year. But as time went by, even with a few gum bleeds, I started to settle in. Time has given me some reassurances that I can live life without, or in spite of worry (do I have a choice?). I’m no expert, but other than taking practical precautions and pre-meds before dental procedures it seems a part of endocarditis is the “luck/unluck of the draw” kind of thing. Some information says that theoretically you can even contract endocarditis from such simple activities as chewing food and having a bowel movement, now I know I’m not going to stop doing either of those things :eek:.

I know how I got endocarditis, but some folks never determine exactly how they contracted it. We who have a prior history of endocarditis probably have even more reason to be aware of the risks, and especially to know the symptoms to be able to quickly seek medical attention. But researching endocarditis too much on the internet for some can cause excessive worry, so it seems striking a healthy balance of knowledge, taking good care of yourself and talking with your doctor can be wise. For me I’ve reached a place where I am fairly confident about my precautions and knowledge that I am not letting having had endocarditis takeaway anything from living. I am very physically active and feel fortunate to be able to do the things I enjoy.

You have been through a lot, so it’s understandable to feel vulnerable. And it’s important to listen to your doctors’ recommendations on the matter. I still go no more than a few days without thinking about it, but it doesn’t consume me at all. I feel the odds are I won’t get it again, but if I do I’ll recognize it and “hopefully” be treated successfully again. I know there are never any guarantees, but I feel it’s okay to live as freely as possible in the meantime. Time has certainly helped, and staying as positive as possible is one thing that recovering from endocarditis has taught me. Best wishes!
 
Welcome Jenrc. Your survival is impressive. Good luck as you get ready to return to work.

I noticed ridges or a bump going across my nail (side to side) afther OHS. Per the internet, a person's nails will stop going when your body suffers severe trauma, like OHS. This cessation of growth creates ridges in your nails. As your nails grow, the progress across your nail until the reach edge and you clip it off. After OHS I had them on every finger and toe. They left in about 6-8 months.
 
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