Endocarditis False Alarm (I HOPE!)

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normofthenorth

Well-known member
Joined
Nov 1, 2010
Messages
863
Location
Toronto, ON, Canada
I've had a nagging "Summer Cold" -- post-nasal drip and lots of coughing, both dry and "productive" -- for maybe MONTHS this summer. Self-medicating with this and that, bicycling and sailing, living my life normally except for the coughing and occasional spewing. Saturday Night, after a long day on Lake Ontario with high temperatures, brutal full sun and next-to-no wind, and a long uphill bike ride home, I felt pretty "dead". Either that night or next morning, DW stuck a thermometer in my mouth, and I had a fever. During the day, I just wanted to stay in bed. But my temp was gradually rising, from 38-ishC to 39.1C -- Sorry, Yanks. but 37 is normal = 98.6 and that bigger number is somewhere around 102 or so F -- and I was feeling sweaty then chilled in alternation. All of that made me worry about Endocarditis, and made it easier for DW to drag me to the ER.

After several waits, more numerous than individually long, I was admitted to an ER bed and I'd been seen and tested by two post-triage nurses and a Doctor. they'd taken 4 or 5 blood samples (including FINALLY the 5ml sample for a full blood culture) and a urine sample, and taken chest X-rays. And they'd convinced themselves after some head-scratching and conferring (with TWO Cardiologists!) that my fever and chills and feeling like Death Warmed Over were much more likely from a UTI (Urinary Tract Infection) plus a bit of pneumonia, and not from BE. So they gave me a fancy quinolone-family antibiotic pill and a prescription for more, and sent me home. I'm still not due to take my SECOND pill for another 3.5 hours, but my fever is virtually gone and I feel way better, pretty close to normal. Blood-culture results won't be back for a day or two; if I haven't heard, I'll phone them.

OK, so while I'm writing this post, I get a message from the ER, phoned back and they tell me "I seem to be growing a bacteria(um)". And they want me to come back for "reassessment". When the nurse left to get a Doctor, I got cut off. So far I'm waiting for her to phone back. . .

Stay posted!
 
Well at least your on a antibiotic and hopefully it will keep this bacteria at bay until them doc's really know what going on.

Good luck and please keep us posted.
 
For those of us living with artificial heart parts, endocarditis I think is our biggest fear.

Hang in their Norm. You lucked out and got a medical team that is looking out for you.
 
Thanks, all. Made it back to the ER this afternoon (but this time by bicycle) with the name of the Doctor I was to consult with, and to give another blood sample. I made it through the magic doors relatively quickly, into the Rapid Assessment Waiting Room. Not so rapid for me. While I was there, the Doc whose name I was given had left for the day. Confusion may have ensued, not sure. By the time I inquired (heck my iPod batteries were down to 20%!), Doc was gone, and a Nurse Practitioner was playing catchup with my file. She seemed nice and competent enough, but couldn't really figure out why the Doc wanted more samples, nor could the Doc she asked. I gave the samples and left.

What I learned: The culturing and analysis is listed as "partial" on her form, presumably meaning they are still analyzing the bacterium. So far they know it's a gram-negative bacillus, and that's all they know. And now they can start a second one, as well as continuing to analyze the first.

Seems to me that some gram-negative bacilli love munching on heart valves and others don't seem to, so I think I care which strain it is -- as well as whether or not it's resistant to the pills I'm popping, of course.

Far from sharing the "aggressive approach" that UHN has adopted in cases of (possible) BE among their HVR patients (which I/we have commented on before), she said the quinolone-family oral antibiotic I'm on is appropriate for all of the "bugs" in the gram-negative family, so I should keep taking them for now. Wait to hear, go back if I get worse.

It reminds me a bit of the eye surgeon I presented with my "golden horseshoe" false ocular image. He examined me, and said it could go one of three ways: It could get better, stay the same, or get worse. I said "For THIS you went to Med School? Can't you at least say it in Latin??" :)

Good luck to ALL of us!
 
I don't know if I'm correct about this, but since you are already taking antibiotics, can't that throw off the results of subsequent blood cultures? Hope for your sake it isn't endo.
 
Have you called your cardiologist? Instead of just waiting around for the er docs? if not I probably would have as soon as the cultures showed possible growth, well that's what we did anyway and they admitted justin and started the antibiotics Iv while waiting for the rest of the blood culture info
 
Thanks, Lyn. ER called me again today to check that I'm still feeling better (Yup!) and to tell me to make appointments with my GP and my Cardiologist ASAP. And if the Cardiologist can't get me an echo ASAP, the GP can send me to an Ultrasound lab for it. (My cardiologist hires outside contractors to do "his" stress-echos, and when he sees their numbers, he doesn't trust them, so I can't WAIT to show him some really "outside" test results! ;) )

I'm phoning, I'm phoning. . .
 
OK, so I've been somewhat reassured about the BE, though there's still a small risk. Turns out I've got both a UTI and a blood infection, both of them with e. coli. That's a huge personal "ewww", but a relief because e.coli doesn't usually love to munch on heart valves, though it occasionally does so.

Another wonderful bit of news is that my remarkable GP has returned from maternity leave -- YAY! I'd missed her. Very sharp. Quick and business-like but also patient and personable, and amazingly high-service, like returning phone calls promptly, calling during evenings and other strange times when appropriate (used to be to tell me my INR results when I was on Warfarin), etc. I'm impressed. Her replacements were OK, but she's a gem. (And no, I'm not drooling after her.)

The ER Doc who phoned me Tuesday proposed that I drop my current quinolone-family antibiotic and start a fluoroquinolone-family antibiotic (cipro-something) instead. I told him I'd really like to avoid fluoroquinolones if possible, because they're now acknowledged to multiply the risk of tendon rupture, and I've already ruptured both Achilles tendons and a finger tendon, playing competitive volleyball, so I don't need any "help"! The Doc didn't have enough info to choose a substitute, so he recommended I phone back the next day.

First, I got in to see my great GP. While I was sitting there, she phoned the hospital and got them to agree to fax her the "sensitivities" of my blood and urine cultures. (Isn't that kind of "let's just get this done" attitude rare in GPs?) Soon after I left, she phoned me. She got the urine culture list, which was the important one, because that was the culture where my existing antibiotic didn't give great coverage, it was fine on the blood infection. So she suggested that she prescribe a common antibiotic (forget the name, sorry) that she usually prescribes for her patients (mostly women) who have similar UTIs. She decided that a slightly extended 10-day course should be appropriate, reasoning that it must be a fairly serious infection to have gotten into my bloodstream.

When I said I might also go ahead with my planned phone call to the Hospital Docs, she said "Sure, why not?" I did, and they confirmed that I should be fine on those two different pills. She had phoned/faxed in the prescription to my local drug store. Before going to pick it up, I phoned ahead to ask them to have it ready AND to tear up the Cipro-family prescription. "It's already done!" said the pharmacist. The UTI antibiotic is twice a day, the earlier blood-infection one is once, so I've got a schedule to keep. Reminds me of when I was on Warfarin and Metoprolol, but without the INR checks.

Now I've got to call my Cardiologist's office to find out why they haven't called me to schedule an echo, after receiving my GP's referral. If they tell me she never faxed it to them, I'll be shocked! :)
 
Still feeling fine, UTI gradually resolving I think. Popping pills for about another week. Went for an echo at my cardiologist's office Friday, got a call from him today = Sunday(!). Nothing special about the echo, but he wouldn't expect to see anything on a normal echo cardiogram "unless you were at death's door", i.e., with huge vegetations hanging off my valves. On the ONE hand, he's pretty reassured by the specifics about the infection. (As he said it, "Having a valve replacement doesn't protect you from getting all sorts of normal infections, and they're not all Endocarditis.) On the other hand, while normal echos are pretty useless, a TEE. . . and he seemed tempted to send me for one, on the remote chance that it would find something.

I was much less keen than he was. He also said it probably made sense just to finish the course of my antibiotics, and do nothing unless I spiked a fever after that, or got other symptoms of infection. So that's what I'm doing.

It seems that some times I'm pushing to get tests, and other times I'm pushing NOT to get tests. . .
 
I know the feeling. . .

About a month after my surgery, I was readmitted with symptoms that could have pointed to endocarditis. They did all the tests and finally attributed my symptoms to an intestinal issue probably caused by the side effects of meds given during surgery. Tests were no fun, but knowing it wasn't endocarditis was worth the discomfort.
 
BTW, when I quizzed the Echo-cardiogram tech about my effective Aortic area, he said it looked like more than 1.5 sq. cm. That may sound wimpy to most of you folks, but mine's been more like 1.3 max since it was implanted, which is one of the main clouds in my sky. When my cardiologist phoned on Sunday, just before we hung up, I asked him, too, and he said it was 1.2 sq. cm. Can't seem to shake that cloud. . .
 
Might be worth plotting the range of measurements you have been quoted since implantation. There is a variability to echo measures, and no single measurement is likely to be the correct one. Your valve is likely somewhere within the range defined by all the measurements taken to date, though. The variability is due to differences in machines, transducers, technicians and a host of other things. I guess that's why they always want to do a cath if precise measurements are needed - the echo's are only close approximations. They can show trends, just not with high precision.

That said, I couldn't even tell you what my 1-year post-op echo showed, while I did know all of my pre-op measurements. It just isn't as important to me right now.
 
Glad you're improving Norm and hoping it continues and you may want to eat some good Greek yogurt! Best Wishes :)
 
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