Endocarditis

[mina]

They are wanting to put me on Ceftriaxone. But I understand that it’s in the penicillin family and I’m allergic to penicillin. So they’re going to do some testing tomorrow to see if I can take it and they’ve sent a sensitivity test to Mayo Clinic. So I’m in the hospital for a few more days.

I'm allergic to penicillin, too, and had no reaction to ceftriaxone (which they switched to at some point from the vanc). Your mileage may vary, of course. But it's way better than the vanc. Vanc can save your life, but it's the 'big guns' and has lots of potential side effects. For example, it's an ototoxic for some (including me - it did significant damage to my hearing). But better lost hearing than dead!

Good luck. It sounds like you're finally on the right path and in good hands.

 

[mecretired]

I'm allergic to penicillin, too, and had no reaction to ceftriaxone (which they switched to at some point from the vanc). Your mileage may vary, of course. But it's way better than the vanc. Vanc can save your life, but it's the 'big guns' and has lots of potential side effects. For example, it's an ototoxic for some (including me - it did significant damage to my hearing). But better lost hearing than dead!

Good luck. It sounds like you're finally on the right path and in good hands.

Thank you. I should get my PICC line today. Sensitivity test should come back tomorrow. If it’s ok I will be switched from vancomycin to rocephin. Discharge on Friday. Social worker is checking out my options/insurance coverage for after discharge. I can’t tell you how much I appreciate alll of you sharing your experiences and advice with me. It has helped so much.

 

[Duffey]

Thank you. I should get my PICC line today. Sensitivity test should come back tomorrow. If it’s ok I will be switched from vancomycin to rocephin. Discharge on Friday. Social worker is checking out my options/insurance coverage for after discharge. I can’t tell you how much I appreciate alll of you sharing your experiences and advice with me. It has helped so much.

I hope all goes well. We’re headed to Columbia on Friday. We’re apt to pass you on I-70!

 

[mecretired]

I got my PICC line in yesterday. Sensitivity test of my strep to rocephin was positive. I was given a sample of rocephin and had no reaction. I’m all set with home health to do my rocephin in the PICC line at home. Getting discharged today after today’s dose of antibiotic. All is good. Won’t be passing you on the road Friday Duffey.

 

[Protimenow]

It's great to hear that you're going home. I hope the antibiotic is easy on you and completely eliminates that nasty bacteria.

I'm looking forward to seeing more follow-up posts.

 

[mecretired]

I came home from the hospital Wednesday after a week in the hospital. I am on 2gr of recephen daily which my husband gives me via push IV in my PICC line. We will do this for 6 weeks. When I was being discharged my cardiologist said he felt sure I did have endocarditis even though they didn’t actually see bacteria on my valve. He’s also sure it started before my first fever in mid March. So I’ve had this for 5 months. Prior to the first blood culture in the hospital I had been on two oral antibiotics. Cardiologist was surprised that my blood culture started growing bacteria within 3 hours. Initially home health will come into my home weekly to draw blood and change my PICC line dressing. All is good for now. I am so thankful for good insurance and pray for that same blessing for all of you.

 

[Protimenow]

Amen to that.

 

[QuincyRunner]

I too was on Rocephin for six weeks at home via a PICC line to rid myself of Endocarditis. Unfortunately it came a day late and a dollar short since this was after they had removed my infected mitral valve. Like RNeal, Lesneski, and OldManEmu, the BE was not diagnosed for months after it had started eating away at my MV. The "excuse" I was given was that because I had been started on various antibiotics early on that the blood cultures could no longer identify the bacteria involved. It was not until a TEE was done late in the game that my infected MV was spotted and it was only later determined that a teeth cleaning had started the bacteria ball rolling. Happy to hear, Mecretired, that your valves have apparently survived the onslaught after all these months.

 

[mecretired]

I too was on Rocephin for six weeks at home via a PICC line to rid myself of Endocarditis. Unfortunately it came a day late and a dollar short since this was after they had removed my infected mitral valve. Like RNeal, Lesneski, and OldManEmu, the BE was not diagnosed for months after it had started eating away at my MV. The "excuse" I was given was that because I had been started on various antibiotics early on that the blood cultures could no longer identify the bacteria involved. It was not until a TEE was done late in the game that my infected MV was spotted and it was only later determined that a teeth cleaning had started the bacteria ball rolling. Happy to hear, Mecretired, that your valves have apparently survived the onslaught after all these months
Glad you came out the other side. My surgeon actually came to my hospital room to explain how difficult and dangerous another surgery would be. Since I have the grafted valve he would have to replace the whole thing again (ascending aorta, aortic valve and aortic root). My aortic arch has some calcification so this would be extremely difficult and dangerous. I’m so glad my team of doctors got serious about this as soon as they did. I know now I will demand a blood culture as soon as a get another fever.

 

[mecretired]

I just want to throw this out there before I go a little more silent for my next 5 weeks of antibiotics. I got online with my patient portal to get copies of all tests and labs that were done while I was in the hospital. The biggest surprise was a CRP sensitive lab result of 38.37!!! I know that is really high. Have any of you had similar CRP’s?

 

[ejc61]

Sorry I'm a little late with this mecretired.
I had my endocarditis event 5 years ago. For a period of 6 weeks, run a fever, take oral antibiotics, finish antibiotics fever returns, get blood culture but a took antibiotic and skewed results, after second or most likely 3rd blood culture weeks later, infection confirmed 12 mm vegetation. Admitted to hospital and under care of infectious disease doctor and my cardio. Around the clock IV antibiotics with PICC line, rocephin and a 6 week supply to bring home. After 3 weeks, vegetation reduced to 5 mm. All is good. a few weeks later after my last dose and my PICC line removed and over a course of a few days, I pull up lame. Wound up in hospital needing an arterial thombectomy and because heparin didn't work for me that day, a 3 compartment fasciotomy. One week in the hospital. Left the hospital with another 6 week supply of daptomycin, a cane and a walker. Used that damn cane for a good 6 months. My mitral valve has some scarring but pretty much ok.

 

[mecretired]

Sorry I'm a little late with this mecretired.
I had my endocarditis event 5 years ago. For a period of 6 weeks, run a fever, take oral antibiotics, finish antibiotics fever returns, get blood culture but a took antibiotic and skewed results, after second or most likely 3rd blood culture weeks later, infection confirmed 12 mm vegetation. Admitted to hospital and under care of infectious disease doctor and my cardio. Around the clock IV antibiotics with PICC line, rocephin and a 6 week supply to bring home. After 3 weeks, vegetation reduced to 5 mm. All is good. a few weeks later after my last dose and my PICC line removed and over a course of a few days, I pull up lame. Wound up in hospital needing an arterial thombectomy and because heparin didn't work for me that day, a 3 compartment fasciotomy. One week in the hospital. Left the hospital with another 6 week supply of daptomycin, a cane and a walker. Used that damn cane for a good 6 months. My mitral valve has some scarring but pretty much ok.

Wow! You’ve been through a lot. They didn’t see any vegetation but thought it was probably there. I had been on antibiotics and my culture started growing within 5 hours. My crp was 38. Do you know what your crp was? Was yours strep? Any idea how you got it? I’m 3 wks into my 6 weeks of Rocephin. lol is going well so far. Still get tired easily. I’m seeing my infectious disease doctor today.

 

[mecretired]

Wow! You’ve been through a lot. They didn’t see any vegetation but thought it was probably there. I had been on antibiotics and my culture started growing within 5 hours. My crp was 38. Do you know what your crp was? Was yours strep? Any idea how you got it? I’m 3 wks into my 6 weeks of Rocephin. lol is going well so far. Still get tired easily. I’m seeing my infectious disease doctor today.

Just got back from seeing my infectious disease doctor. Found out my crp was .415 as of yesterday. In 3 weeks it went down from 38 to .415. Wow! Antibiotics are doing their job.

 

[ejc61]

Wow! You’ve been through a lot. They didn’t see any vegetation but thought it was probably there. I had been on antibiotics and my culture started growing within 5 hours. My crp was 38. Do you know what your crp was? Was yours strep? Any idea how you got it? I’m 3 wks into my 6 weeks of Rocephin. lol is going well so far. Still get tired easily. I’m seeing my infectious disease doctor today.

Well the key is getting a good culture without having antibiotics in the system. So you caught it in time. I went about 6-7 weeks before getting a positive blood culture. Kind of hard when you're trying to time it between antibiotics which was my problem. They did a TEE to determine the vegetation so good for you. So going forward, any fever at about 101 for any reason means a trip to get a culture done. I'm not familiar with the crp number. I do know my white blood count (wbc) was 12. I had strep strain F. Oddly, I had dental work done during my first round which was approved by my ID Dr. The official/unofficial cause is unknown unfortunately. However, consider that you may probably need to stay in contact with the ID doctor. In my case, I've been instructed by my cardio to let my ID know if having surgeries, biopsies, etc. I do remember being more tired than usual. Hopefully, you'll be done after your 6 weeks. Most likely an echo or TEE to check at that point.

 

[OldManEmu]

Cultures are next to useless if you have been on antibiotics. I had my first culture done months before the endocarditis was found and as I had been on antibiotics they came back negative. When the endocarditis was found it was after I was becoming sick again and cultures were done after being off the antibiotics for about 2 weeks. My CRP at this stage was also tested for and it was 196 when above 10 indicates significant inflamation from infection, autoimmune problems or cancer.

 

[Protimenow]

FWIW, OldManEmu, there's an insurance company in the United States called Liberty Mutual (they go by the name LIMU). They have a new series of commercials with the LIMU Emu -- this Emu is a frequent star of the commercials -- poor bird. In one commercial, it's outside a bank with rather reflective glass - and does what I suppose other Emus do when it sees its reflection in a mirror. In another, it's dressed up like the human it works with, complete with sunglasses.
It's a nice break from their other stupid commercials, and I doubt they harm the Emu in any way.

Now, when I see the commercial, I'll think about you, OldManEmu, and endocarditis.

 

[vitdoc]

I agree that blood cultures should be done. But while you are using antibiotics the yield for blood cultures may be reduced and you might get a false negative. So cultures could be obtained while on antibiotics and they might be positive but they might need to be repeated when off antibiotics.

 

[mecretired]

I agree that blood cultures should be done. But while you are using antibiotics the yield for blood cultures may be reduced and you might get a false negative. So cultures could be obtained while on antibiotics and they might be positive but they might need to be repeated when off antibiotics.

My infectious disease doctor said he will do blood cultures one mont after the end of my 6 weeks of iv antibiotics. He also said I should probably have blood cultures done any time I run a temp over 100.5——before I start oral antibiotics.

 

[ejc61]

It’s the new normal.

 

[mecretired]

Just wanted to give a final update on my endocarditis saga. After being in the hospital 8 days and having a picc line put in, I went home and was on 6 weeks of iv Rocephin. Picc line was taken out October 1 and blood cultures were all clear. All testing seems to show there was no damage done to my st Jude aortic valve. It took me until about the beginning of January before I would say I felt back to normal—back to working out at the Y and having my energy back without resting during the day. This all started mid March so it was a long year. It is great to feel good again.