Here I go again.....

[rosewynds]

Hi Everyone,

I haven't posted in awhile, so a little background before my questions. I was found to have a heart murmur in July of 2002. Was sent for an echo, which said I had mild aortic stenosis.

Fast forward a year to August 2003, I had been on a weight loss plan and had at that time lost 107 pounds. I had been having palpitations so my PCP ordered another echo. Well this one showed no aortic stenosis, but did say I had trace mitral and tricuspid regurgitation, which I was told wasn't that big of a deal.

Well I had an appointment with my PCP Monday evening, we chatted and he started listening to my heart, and he kept listening. He told me that my murmur has gotten alot louder since the end of December. He wants me to have another echo asap, so I am scheduled for friday at 9:30am. I had a dental cleaning in December with antibiotics, but 2 weeks after that I started to get sporadic night sweats. I just thought maybe "menopause", I am 44. But now I'm not so sure, I am getting them almost every night, also feeling tired.

I know my doctor suspects endocarditis, he checked my blood counts and said they were ok for now. But he told me that he is very highly concerned, and he is not one to want to worry anyone.

My question is, at the echo friday, if the tech sees anything that looks like endocarditis, will they notify the doctor right away, or will I have to wait until the appointment on March 13th to get results. Also, if it's not endocarditis, but a worsening of a valve or something I don't know what to think. I am really scared right now, I can tell my heartbeat is different, it has a vibration that wasn't there before.

Thanks for reading.

Lisa

 

[Bryan B]

Lisa,

I'm going to be straight up with you with my experience, as I had endocarditis recently. My main symptoms were:

Night sweats...so bad I had to keep a towel on my pillow and change my t-shirt in the middle of the night towards the later stages.

Extreme fatigue...especially towards the later stages.

Low grade fever.

Body aches.

Pain/pressure under my left nipple, left side, and radiating between my shoulder blades.

They finally did blood cultures on a Friday afternoon. My doctor called me Sunday morning to tell me they came back positive for strep.

They did an echo on Tuesday afternoon and were able to see vegetation on the valve. They admitted me immediately.

I was out of the hospital 3 days later sporting a PICC line and was on IV antibiotics for 7 weeks.

Not trying to scare you, but your symptoms sound suspicious. If you want to PM me feel free, but I have my cath tomorrow so I might not respond until tomorrow evening. I hope it's just a false alarm, but if not it's best for your docs to be very aggresive in treating it. I hope everything turns out ok...good luck to you!

 

[rosewynds]

Hi Bryan,

Thank you for your reply. I forgot to mention I have been having fever once in a while, but not every day. Last week I had one for 4 days around 100 to 101, but it went away. Tonight it's running about 99. Did you also get tender red bumps on your fingers, I have been getting these for the last 4 weeks or so.

I am just so scared of what the echo will show, then I worry what if it doesn't pick up anything and I really do have it. I just a mess right now, I should have gone to my doctor before this appointment, but I just didn't think it could be anything, until he told me about the murmur change, then I told him about the sweats, fever and bumps. Thats when he got concerned.

If I do have it, they send you home with a picc line for the antibiotics? I thought I would have to be in the hospital for a week or two. I would be alot better to be treated at home, that's for sure.

Good luck with your cath tomorrow, and thanks for your reply.

Lisa

 

[Bryan B]

Lisa,

I didn't have the red bumps on my fingers, but I'm sorry to say that is another symptom of endocarditis. I had a few lesions that looked like a small red pimple with a hard crusty center. I later found out that those were caused by enzymes from the strep bacteria as the bacteria died. My fever fluctuated as well, but most of the time it was only 1-2 degrees above normal. Did your doctor do a set of blood cultures or did he only do a CBC? I would think that if he does a set of blood cultures that come back positive along with the symptoms you are having that would be conclusive. They could see the vegetation on my valve, but I have read that it is not always visible.

I know this is easy for me to say, but don't get too scared. By the time they finally diagnosed me I felt so bad I was just glad they finally figured out what was going on. They can treat you as an outpatient once they identify the strain of bug. They only kept me in the hospital long enough to pin down the exact bug, decide on the best antibiotic, and insert the PICC line. Inserting the PICC line was virtually painless. The only thing I felt was a small prick when the tech gave me the shot to numb my arm. I was released on a Friday and the home health nurse met me at my apartment that afternoon to teach me how to administer the antibiotic to myself. I was doing it on my own the next day (although I panicked a little the next day and called the on call person to walk me through it). I was back at work on Monday. The nurse came once a week after that to check me out and change the dressing.

I know it's scary...my PCP had to give me a Klonopin while I was waiting to be admitted because it was taking forever for him to get in touch with the infectious disease specialist he was consulting to do the diagnostic part (figuring out the bug and picking the antibiotic). But my experience in the hospital was excellent. After I was admitted they did another set of blood cultures, and the rest of the time I just rested, watched TV, and surfed the internet (I had my laptop with me...lol). Let me know if I can help in any way.

 

[Nancy]

Lisa-

Gosh, I'm so sorry to be reading about this. I will keep you in my thoughts and prayers. Please keep us updated when you can. I know we'll all be worried about you.

 

[Bryan B]

Lisa,

If you're out there, please check in and let us know how you're doing. I've been thinking about you and wondering if you are doing ok.

 

[rosewynds]

Hi,

I'm sorry I haven't posted sooner. I had my echo March 5th, the tech didn't see any vegetations, but she did mention that they would have to be bigger than 3mm to show up on a surface echo.

I have an appointment with my pcp on Saturday, to get the results of my echo, I guess I will have to wait and see what the report says. I'm still getting night sweats on and off, and the red tender spots on my hands.

I am still worried about all this, hopefully I will find out what is causing it. I'll let you all know after my appointment Saturday morning. Thanks for thinking of me.

Lisa

 

[Bryan B]

Lisa,

Glad to hear that nothing was found on the echo. I hope your appointment with your PCP goes well too. Since you are still having symptoms make sure he does a set of blood cultures on you. The results of those can help them determine what's going on.

Wishing you the best for everything to come back normal!