I think I have endocarditis...

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deogloria

Hi everyone. Been gone awhile. Had my baby 2.5 weeks ago. Docs did it early, as they were worried by my symptoms. Went fine, baby is great.

I have a question. Since the surgery, I've had some weird symptoms. Don't know if they're heart related, c-section related, or new.

What has me worried is that I woke up a few days ago with a sore left thumb. It got worse over a few days, getting swollen, stiff, and more painful. When it started looking mottled at the base, purplish at the tip, and the tip felt cold, I went to the ER. They did an xray, just in case, and said there was no evidence of injury, or a foreign body, or tissue damage, or infection. They did a white blood cell count. Never told me the results, but I assume it was negative.

The doc put my thumb in a splint to "rest" it, gave me antibiotics "just in case", since I have a bicuspid valve, and told me to come back if it got worse. Today it was worse. The discoloration was better, but the pain was worse, and seemed to settle into my middle thumb joint. They took blood samples to rule out gout (won't hear back on that til Monday). Then I noticed spots on my thumbnail. The doc said it could be splinter hemorrhages, and to call my cardio on Monday.

After reading a bit on here, I'm thinking it might be endocarditis. They don't think it is, because I had a chest xray earlier this week that was normal, and didn't see any indications of infection. But I know one member on here posted that her husband's test results were all negative too, until he had a blood serum test done.

The pain is really bad tonight, even with vicodin and ibuprofen.

Could this still be endocarditis? I don't feel all that bad. Should I wait til monday, or go to the same day clinic and demand a blood serum culture?

Thanks!
 
if it hasnt already been done i would ask your doctor or ER to do blood culture tests where they take blood from each arm simple and quick ,think this should have already been done to rule it out!. also echo can pick it up .blood under nails is one symptom but also night sweats ,
check this link
http://www.nhs.uk/Conditions/Endocarditis/Pages/Symptoms.aspx?url=Pages/what-is-it.aspx
for peace of mind ,personally i would go now and get the blood tests done asap
 
I don't have any experience with endocarditis (thank goodness) but if you are really that concerned about it, then yes, I would go back and demand more testing. Did they give you any antibiotics when you were giving birth? Just curious because when I had both of my children, they gave me huge bags of antibiotics because of my heart to prevent endocarditis.

I hope you feel better soon. Congrats on the new baby!

Kim
 
Good to hear from you and much congratulations on the little one:)

Re the endocarditis,many have different symptoms,but the most common
are fever,loss of appetite,night sweats, and weakness.Some get these
hemmorhages,but I didn't and I had it twice.I read that about 40% will
get these,but I never heard of them being painful.It also seems like they
would be a mid to later symptom. But with the importance of catching
it early,I would play it safe and get blood cultures and an echo,since an
xray isn't too helpful in identifying this 'enemy'.
Please let us know how you are doing,my best-Dina
 
I just realized that you were the one who was pregnant with #6 and needing heart surgery. Did you have your surgery on your heart right after delivery or are you still waiting? If you did, I can only imagine how traumatic that must have been to have the baby and then OHS right afterward. I wish you the best.

Kim
 
I am not sure if the antibiotics will mess up the results of the cultures, they never did find the bug causing mine.

I felt ill, so very ill. No appetite, nausea, rigors, exhausted, tired and cold. I did have a pain in one finger and also pains in my legs but both of these were after it flared up again once some vegetation had broken off. After the initial ten days I just felt 'off colour', not ill, not well.
 
I have had some mild loss of appetite. Nothing major, just not as hungry as usual, and when I start to eat, I lose interest in the food pretty quick. It seems like my appetite has been a little better lately.

I have had a few episodes of getting the chills in bed, followed by feeling sweaty, ever since right after the surgery. But I always figured the sweatiness was because I'd bundle up after the chills. I don't recall having an episode of just being sweaty at night. I have, however, noticed that the last few days, when I lay down, I get a few seconds of dizzyness, and then it goes away.

Weakness...don't think so. But then, I also have a low hemoglobin since the surgery. They gave me a unit of blood...wanted to give me two, but I felt bad during the first transfusion, and my gut was telling me to refuse the second one, so I did.

I've had a very slight fever a few times since the surgery. Always 99-point-something. I almost never get fevers, even when I get an illness that has given everyone else in my family a fever. But the fever is so slight, the docs have dismissed it. I had been showing a bit of a fever even before the c-section, which I told the docs I thought was from a tooth infection. They didn't seem worried (which I thought was odd, given the whole valve situation). I did get antibiotics during surgery, but that was it. Don't know how much or what kind.

Kfay, I haven't had my heart surgery yet. They won't touch me til at least 3 months out from the c-section, because of the fluctuations in hormones and the tendency to bleed more after pregnancy. They did have a surgeon standing by during my surgery, had a central line in me, put me in icu with a monitor for a day and a half afterwards. (Which, by the way, really stunk, and has me dreading the heart surgery). They still don't know if they're going to repair the valve. That had been the plan, but since my valve is still functioning pretty well and hasn't worsened over the years, they may try to spare it, considering how short a time valves last (I won't be getting a mechanical valve this time around--my docs think a tissue valve makes more sense in my particular situation).

I think I'm going to call the hospital and see if they did do a blood serum test on me, which I'm pretty sure they didn't. If they didn't, then I'm going to go in and demand one. I know they probably think I'm a hypochondriac there...the nurse last night treated me like she thought I was there to get drugs. :mad: I don't want drugs, I want the problem fixed! I hate taking anything unnatural, and if I didn't need the pain killers, believe me, I wouldn't be taking them, especially since I'm nursing.

I'll let you all know what happens. Thanks!
 
sue943 said:
I am not sure if the antibiotics will mess up the results of the cultures, they never did find the bug causing mine.

I felt ill, so very ill. No appetite, nausea, rigors, exhausted, tired and cold. I did have a pain in one finger and also pains in my legs but both of these were after it flared up again once some vegetation had broken off. After the initial ten days I just felt 'off colour', not ill, not well.
Click to expand...

What do you mean by "vegetation"?
 
With endocarditis you get a build-up of the bacteria on the valve and it is called vegetation, it was explained to me as being a little like cauiflowers, but smaller of course. My stroke was caused by some breaking away and travelling to my brain then I started feeling unwell once more, more rigors, raised temprature etc and the pains in my fingers and legs.
 
It certainly doesn't sound like when I had endocarditis - fever, sweat, chills, extreme fatigue (hard to tell with a new baby), weakness and significant weight loss. The pain and discoloration sounds more like gout to me. My endocarditis was easily diagnosed from an echo, but the blood cultures confirmed it. However, if you are already on newer generation antibiotics, the blood cultures will probably come back negative. The good thing is that the antibiotics are probably already working on it, if that's what it is.
 
The same here. I've had endocarditis a few times in my life, that's why there's so much vegetation or pannus growth in & around my mechanical mitral valve. Each time that I've had it though, I have experienced the fatigue, fever, inability to eat & loss of weight, chills, sweats but not what is going on with your thumb.

A blood culture should reveal whether or not you have endocarditis though.

Good luck to you & congratulations on your new baby. Blessings to you both.

Take care!
 
"I know they probably think I'm a hypochondriac there...the nurse last night treated me like she thought I was there to get drugs."

To heck with what they think of you! You go right in and get the help you need. YOU know how you are feeling. Make them do their job.
 
I hear you about the doctors thinking you are there to get drugs. I had paracarditis about 10 months after my first surgery and didn't go to the hospital for 3 days. Then a few months later I had the same symptoms and they thought I was crazy and asked if I was on drugs? So I make sure I'm in a lot of pain before I go to the hospital now.
 
Well, I'm in the ED right now. At first I didn't think they were going to take me seriously, but they are. Kind of, anyway. The doc doesn't think it's endo. I just have a feeling it is. Or some kind of infection, anyway. I wonder if vegetation breaking off could be the cause of the pain in my thumb. They're doing a CBC and a blood culture, and who knows what else...took a ton of blood.

The doc said the antibiotics could affect the culture, but that the TEE tomorrow should show any signs of endo. I hope he's right. I'm just worried that if it's in the early stages, it could be missed, especially since I'm already on antibiotics. They've got me on 500 mg of cephalexin, 3x a day. Does anyone know if this is the right stuff to be on, if I do have endo? The last thing I want is to "kind of" get rid of it, then have it come back! I'd ask the doc, but it's so busy here that he keeps disappearing before I can get more than one or two questions in.

He said the chances of me having endo is extremely low, and the chances of them missing it is much lower than that. Of course, after having been told there was very little chance I had an aneurysm in this very ED last June, then finding out (after demanding a CT) that not only did I have one, but that it had been found at least three times over two years on previous CT and echos, and never mentioned to me...well, let's just say I trust my gut more than their assurances of my risk being "extremely low". :rolleyes:

Lisa: They did do a test for gout, I'm still waiting for that. They said it's unlikely, but possible, since I was recently pregnant. I have had some loss of appetite, a mild fever (but remember I've been on Ibuprofen for the last three weeks non-stop, 600mg 4x a day, so that could mask any lower-grade fevers), and a pink tint to my urine. Fatigue and weight loss, yes, but like you said, I just gave birth, so that wouldn't be unusual. I've also had sweat and chills, but not severe. Maybe it's just another kind of infection, or something else. But since it sounds like endo can take weeks or months to get to severe symptoms, I'm concerned that maybe I'm still in the early stages.

I'll say one thing...if I find out it's endo, I'm going to be really ticked. :mad: I've told them all along I suspected I could have an infection, and they dismissed it every time. If there's valve damage, I'm going to start making some phone calls up the food chain, because that's ridiculous. I'm not at all a feminist, but I don't think a man would be treated so lightly. I'm sure they think I'm all hormonal and having post-partum depression. Just like they said I was just "stressed" because I have "all those kids" the last time I came to this ED, when I was officially diagnosed (eventually) with the aneurysm. I think doctors--and nurses, even--are way too quick to chalk up women's complaints as exaggerated, hysterical, or the result of anxiety or depression. Sheesh! Okay, rant is over. :D
 
Jeremi:

It's unfair that hospital staff is so suspicious towards people. I do understand they probably get a lot of fakers in there, especially on the weekends (I think that's probably why she was suspicious). But it wasn't her call on whether to give me drugs or not, it was the doctor's, and I don't think it's right that her attitude suddenly changed towards me after the doctor offered me vicodin and I accepted it. I was reluctant--I didn't want painkillers, I wanted answers. But I also didn't want to be stuck in pain over the weekend, or have to come back to the ED seeking drugs, you know? Luckily the doctor was super-nice, and I think he understood where I was coming from. My concerns were clearly on finding out the source of the problem, and he realized that.

I'd hate to think of you getting really sick because you don't want to go to the ED til you're in a lot of pain. At least if it's during the day or during the week, you should go in. They should be less suspicious, I'd think.
 
By the way, everyone, thanks for the advice and everything. I'm soooo bored in here, all alone, and there's no tv. Fortunately there's wifi, but I can't stream anything to listen to or watch, and I can never concentrate enough to really read in the hospital, so this is all I've got. :) They do have a phone in here, which is better than some ER rooms, but since my husband is home with all six kids, including my newborn, he's a little bit busy to talk, lol.
 
I'm glad they are testing and hope you get some answers. You asked if that was the right antibiotic, but they onlky way to know is see what grows if there is an infection and what works for it, when Justin had BE, he needed vanco and gento. Did you get your WBC? Justin's was high when he had his BE
 
I think they did a white blood count in the ER last night. They never mentioned to me what the result was, and there was so much going on I forgot to ask. I'm assuming it was okay. I'm sure they'll do one tonight, too.

Just found out I'm going to some lame short-stay room off the ED to stay the night. I'm seriously thinking of leaving. They're only keeping me overnight to get the TEE set up for tomorrow. I don't see why I need to stay for that. I should be able to come back tomorrow for the TEE. They've already drawn the labs. If that room looks like I'm not going to get any sleep in there, I'm out of here.
 
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