Blood Clot or Infection

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Penny, I know you are glad to be home. I hope everything goes well from this point on. When you've gotten some rest, please post and let us know how you are doing.


Kim
 
Hi guys...thought I should post a little something as promised. Endocarditis is what I have. (not sure of the spelling) Anyways after I had the TEE, the cardiologist gave me a call and said the blood cultures came back positive. He asked me to go to the hospital right away. I did as I was told and went in only to spend the next week there... (yuckie) Anyways many tests, an infectious disease specialist, internist, family doctor and 2 cardiologists... lets say I had a great team of docs on my side...
So 6 weeks of iv antibiotics and oral antibiotics will hopefully do the trick. If not, they say surgery...did I already tell you that? (sorry my mind is a little bit mush these days) Anyways I have this lovely little machine strapped to me for the next 5 weeks and I get to play nurse and change out my own iv bag of goodies... :)
My arm looks like the bionic woman with the tubing that was surgically inserted into my arm which is attached to the pump in my fanny pack.. I am hoping to bring back the old fad of fanny packs.. ;)
Anyways all is well, I don't feel ill other than tired so right now life is pretty great. I will keep ya posted... I am off to see the cardiologist on wed which makes me curious of what his next plan of attack will be.. take care everyone.. thanks for listening...
 
Hi Penny,

So sorry for your troubles! Please know that people here are very concerned, and wishing you a good recovery. I hope it will give you some kind of peace, knowing that you truly do have friends on this forum that care.
 
I'm sorry you got an infection, but glad they caught it and started treatment. Do you know what bacteria grew?
Have they done any echos since you were admitted? Hopefully the antibiotics will take care of it. Your lucky they have the fanny pack pump. When Justin had his BE when he was 11, he had to drag the IV pole around (luckily only when the meds were running)
Its a really good thing they spoted the infection during your echo, since you were feeling so well, it could have gotten alot worse before you had symptons, Hopefully the fact it was caught so early will help with clearing it up.
 
Back in the old days when I had it, I didn't have a pump either, but IVs were every 12 hours, so only twice a day and they were done in less than an hour. I'm curious, too, what the organism is, since didn't you have 2 sets of cultures and I thought I remembered you posting you didn't have any fevers. I knew someone who had endocarditis and did not have any fevers either, so though it's not common, it can happen, and glad it was found sooner rather than later.

Take care, take it easy and be well soon!
 
just glad to hear they're "up" on things and getting you taken care of!! Praying for complete healing for you, Penny! Take care and get your rest!
 
Penny - Glad to hear that they know what is wrong and treating you. Sounds like a long process and hopefully, it does work. No one wants more surgery. I will keep you in my thoughts and prayers. Pat
 
Luana said:
Back in the old days when I had it, I didn't have a pump either, but IVs were every 12 hours, so only twice a day and they were done in less than an hour. I'm curious, too, what the organism is, since didn't you have 2 sets of cultures and I thought I remembered you posting you didn't have any fevers. I knew someone who had endocarditis and did not have any fevers either, so though it's not common, it can happen, and glad it was found sooner rather than later.

Take care, take it easy and be well soon!
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Justin's were every 8 hours and he had 2 antibiotics. It probably seemed like even more of a pain since he was an 11 year old boy,So I was nervous with him dragging the pole around. Since by the time he was home, he was feeling really good, so got bored sitting watching tv or movies a couple times a day. I'm sure having the 3 big dogs didn't help my worrying.

I was thinking maybe Penny was lucky, in that she her infection was found early from her post op echo and not because she had already started symptons so then went to the doctor. So maybe the infection didn't have time yet to make her feel sick? IF so hopefully that is a good sign and might help with killing the infection before the valve is permantly damaged and needs replaced.
 
I would think that if the infection was visible, I would imagine that it was vegetation on the valve that was seen on echo and TEE, that probably means it was going on for a while. Not all infections cause a fever, certainly the great majority do, but I don't think lack of fever means she wasn't very sick. The visibility of it does concern me, though that's conjecture on my part, as we don't know for sure what was seen on the echo or TEE. I would hope it was not vegetation.
 
I just want to clarify, when I said it didn't make her feel sick yet, I was not saying she wasn't sick, just that it hadn't gotten to the point she felt any of the usual symptons that most people feel when they have BE, fever chills, just feeeling like crap to the point you call the doctor, and often you go to the doctor more than 1 time before they do the blood cultures and then an echo, so the infection has been growing weeks or months by the time alot of people are dxd.
Also since the blood cultures seemed to take a while to grow and were negative the first couple days, that most likely means there wasn't alot of bacteria in her blood yet, when they first saw the spot of concern on her valve. I don't know if the first blood cultures ever grew after incubating on the plates, or if the positive results came from a newer set of blood cultures that were drawn later.

When Justin had his post op infection, it was only 10 days post op and until the day he was admitted, he felt great. But the infection had already eaten quite a bit of his sternum and was in quite a few places under his sternum all around his heart. It also never got into his blood. So at least in his case, I know an infection can get very big, and you can be very sick, before you have any symptons and feel fine. Even with as bad as Justin's infection was, we kept hearing how good it was that it was caught so early,because it probably would make it easier to get rid of. The only reason his was caught early, was he has a problem with dissolving stitches not disolving and we saw he needed a couple pulled out so called the doctors, when they pulled the stitch they didn't think he sternum felt right so orderred echo, xrays, CT scans.
 
Lynlw said:
I just want to clarify, when I said it didn't make her feel sick yet, I was not saying she wasn't sick, just that it hadn't gotten to the point she felt any of the usual symptons that most people feel when they have BE, fever chills, just feeeling like crap to the point you call the doctor, and often you go to the doctor more than 1 time before they do the blood cultures and then an echo, so the infection has been growing weeks or months by the time alot of people are dxd.
Also since the blood cultures seemed to take a while to grow and were negative the first couple days, that most likely means there wasn't alot of bacteria in her blood yet, when they first saw the spot of concern on her valve. I don't know if the first blood cultures ever grew after incubating on the plates, or if the positive results came from a newer set of blood cultures that were drawn later.
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Lyn, I agree, and didn't mean to say you thought she wasn't sick. And you're right, we don't know which sets of blood cultures read positive, and don't know if they were testing for different pathogens in the second.

Sorry, but my point was not to disagree with you, but to drive home that endocarditis does not always present with a fever.
 
Penny I'm glad to hear you are in good spirits about this, I'm crossing my fingers for you that the anti-biotics work.
 
Hi! Lyn, Luana just read your posts and thought I should fill in some of the gaps.. doc originally said he saw what appeared to be some vegetation or a clot on the valve. That was after the first echo. After the TEE they said the first spot they saw appeared smaller but they could see 2 other small blips on the valve. All 3 sets of my blood cultures came back positive. They tell me its staph infection... :(
I am off to see the cardiologist tomorrow and see what he has to say. I was told there was the possibility that I would need surgery again. :(
I am concerned that the infection has caused damage to my new valve. I still don't have any major syptoms of great concern. I am a little tired, but it is pretty hard sleeping with this fanny pack strapped to me at night so the sleep could be better. A little short of breath when going uphill.. not sure if it is just because I haven't been walking much. But I will say my sternum has not completely healed. It still bothers me when I get up. They did a ct scan in the hospital of my chest but said it all looked great... I hope I get some answers soon.. but I keep saying to myself....just be patient...
 
Penny I wish I could give you a hug, I'm sorry you have to deal with this. It's horrible not knowing what's going on and waiting. Just remember we can't live in the future or the past, we can only live in this moment so enjoy each moment and patience will follow.
 
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