Endocarditis

As far as valve selection, I am going to rely on my surgeon's experience and not try to second guess. His first choice is mechanical valve, If there is significant damage from endocarditis then he will use a homograft. He has ordered both for the surgery.

My blood culture showed an unusual bacteria for endocarditis, Staphylococcus saprophyticus. It is responding to antibiotics.

Thanks for all the information and well wishes. Surgery is tomorrow.

Good luck on your 3rd surgery!
In 2009, after 6 weeks of antibiotics 23 hrs a day, I had to have my 3rd surgery to replace aortic valve/graft from previous surgeries and mitral repair, because my rare bacteria caused lots of damage. My surgeon at Stanford also said he would use mechanical and would only consider a homograft if my tissue was too damaged. (He said I would only expect 10 years from a homograft). He ended up creating an aortic valve in graft for me and placed the valve up along the aorta to avoid my damaged tissue. It was a 2 surgeon job. I awoke feeling really good!
I hope this is what you experience as well!!

Hi

Val said:

As far as valve selection, I am going to rely on my surgeon's experience

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That's what I have always done

Val said:

It is responding to antibiotics.

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Fantastic news

Val said:

Surgery is tomorrow.

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Here's wishing you a straight forward procedure and an uneventful recovery

Best Wishes

Val said:

I went to the ER with a fever of 101 F because I recently had an ablation was following discharge instructions. Because I was found to have slightly elevated troponin levels and WBC even though I no longer had a fever, they admitted me.

They started culturing my blood and giving me a series of tests including an echo. Only the echo was a little off. Showed slightly more regurgitation across my onx aortic valve than a year ago. Cardiology recommended a TEE (trans esophageal echo) if my blood culture came back positive.

By day 3 Troponin levels were in a steady decline, WBC was normal, so I was to be discharged the following day. That night blood culture came back positive so the next day I had the TEE which show infection of the OnX valve, root and synthetic aortic artery. The same day I met with a surgeon that I didn't know and surgery to replace the OnX is scheduled for Friday, that is 4 days in the future.

This happened yesterday. Suddenly my future is uncertain.

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I had IE ten years ago. After about 6 weeks of on and off fever; weeks of on and off antibiotics, a blood culture finally came out positive. An 11mm vegetation was discovered by TEE. PICC line and IV antibiotics for 6 weeks, then a curveball as a particle of vegetation moved to my right leg 5 weeks later resulting in an emergency arterial thrombectomy and including a 3 compartment fasciotomy because the heparin was ineffective. I was able to avoid heart intervention, per se, and everything came out fine. Probably another 6 weeks of IV antibiotics. I'm praying for you Val.

St Jude is ok, been in use for many years, OnX is just an improvement over St Jude since was created by a team of people that walked away from St Jude, is the only mech valve that opens 90 degrees and has panus protection, The only thing about Onx company is dont bother with the 1.5 - 2 + asa , just do as St Jude does 2 -3 for AVR; We all got what we got, some had a choice some did not, my friend has a Ball-In-Cage for 41 years and dont tell her anything else is better

Hi Val,

i am sending you my best wishes. You got this and we will see you on the other side.

I am glad they caught this early and I will be hoping for an uneventful surgery for you.

Please do let us know once you nake it to the other side

All the best
Tommy

Well I made it to the other side.. Thank you for all you support, it made the process so much easier.

Surgery was Friday. Now on Tuesday we're looking at discharge plans. Mainly waiting on infective disease to come up with a plan. I'm going home with an ATS heart valve and valsalva graft.

Thank you everyone.

Val said:

Well I made it to the other side..

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I love the good news stories!!

Best Wishes for a smooth recovery

Val said:

Well I made it to the other side.. Thank you for all you support, it made the process so much easier..

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Fantastic to hear, Val!
Clapping from London.

That's great Val! Welcome to the other side!

Please keep us posted on how your recovery progresses. As you gradually get back to your normal, and often times better than prior to surgery, it can be a rewarding recovery journey.

Brilliant news. Welcome to the other side

Just got bad news. Two stains of staph still active in heart tissue. They will suppress it with 6 weeks of IV antibiotics and then try to keep it under control with lifetime antibiotics in pill form. If anyone has a similar diagnosis, I'd like to talk.

Val said:

Just got bad news. Two stains of staph still active in heart tissue. They will suppress it with 6 weeks of IV antibiotics

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so, are you on a PICC line or is it still by a cannula?

Val said:

and then try to keep it under control with lifetime antibiotics in pill form.

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I have some experience with ongoing infections, although I did not require a valve replacement as my infection entered during my 2011 surgery and while close did not enter the main blood stream and infect the interior or the exterior of the prosthesis. The thread for that is here ... as a result of that I remained on antibiotics for over 10 years. My situation is of course different, but during that time I had opportunity to come across others who were on lifetime prophylactic antibiotic cover and remain so.

Best Wishes

pellicle said:

so, are you on a PICC line or is it still by a cannula?

I have some experience with ongoing infections, although I did not require a valve replacement as my infection entered during my 2011 surgery and while close did not enter the main blood stream and infect the interior or the exterior of the prosthesis. The thread for that is here ... as a result of that I remained on antibiotics for over 10 years. My situation is of course different, but during that time I had opportunity to come across others who were on lifetime prophylactic antibiotic cover and remain so.

Best Wishes

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Thank you for the info. It's comforting knowing I'm not the only one. Info is limited on Dr
Google and some what scarry

I had endocarditis that was not diagnosed until after my mitral valve was shredded (term later used by the surgeon after he took it out). Consequently I had emergency OHS concurrent with an active infection. With the goal of saving my new mechanical valve (and my life) I was on IV antibiotic (Rocephin) via a PICC line at home for six weeks afterwards. That did the trick and no antibiotics since then except for dental cleaning. That was 13 years ago.

pellicle said:

so, are you on a PICC line or is it still by a cannula?

I have some experience with ongoing infections, although I did not require a valve replacement as my infection entered during my 2011 surgery and while close did not enter the main blood stream and infect the interior or the exterior of the prosthesis. The thread for that is here ... as a result of that I remained on antibiotics for over 10 years. My situation is of course different, but during that time I had opportunity to come across others who were on lifetime prophylactic antibiotic cover and remain so.

Best Wishes

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I'll go home on a picc line.

Thank you for sharing. Sounds like what happened to me. Not sure why they are recommending antibiotics for life.

I’m happy to hear you are doing okay!
Too bad that darn bacteria is throwing a monkey wrench into your recovery.
My rare bacteria, s. Lugdunensis, also came back on me only a few days after I was discharged on a picc line with gentamycin, vancomycin and oral rifampin. My cardiologist sent me back to Stanford where I stayed another 7 days and then home with Nafcillin in a 23 hr a day bag through my picc line and still rifampin orally for 6 weeks. I was tested after that and it was gone. Then, I had to have my 3rd surgery to replace aortic valve, graft and mitral repair from my nasty bacteria. I didn’t need long term antibiotics, so possibly your bacteria is more worrisome and they want to be sure to protect you. All the best to you!!

Val said:

I'll go home on a picc line.

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I am sorry that you are having these issues. But - YOU CAN DO THIS. YOU WILL SUCCEED!

2 years ago I had a PICC line for 4 weeks. I did my own infusions at home, which was very convenient. My lessons from this experience are listed below.
- My PICC line was installed at the hospital. It was no worse than getting an IV line installed.
- Talk with your medical team several days before scheduled release to coordinate with the home health team who will help you with the PICC line maintenance, provide you with the antibiotics syringes, etc, when you go home. You don't want your hospital release delayed because a home health care nurse cannot schedule a meeting with you.
- Every week they shipped me a box of antibiotics syringes, saline syringes, etc, in an insulated 18"x18"x24" box. I'm normally home during the day, and I live in a nice quiet are in Iowa, USA, so that box could safely sit on my front steps for a couple hours. Consider how your supplies will get shipped to you. My antibiotics needed refrigeration, so I had a shoebox size container in the refrigerator.
- I had to infuse antibiotics every 8 hours. It took about 15 minutes of careful activity. Clean the end of the PICC line. Flush the PICC line with a saline syringe. Clean the PICC line end. Slowly infuse the antibiotics for 2 minutes. Clean the PICC line end. Flush the PICC line with another saline syringe. Clean the PICC line end. No interruptions from pets, significant others, children, phones, etc! You also need a place to spread out your kit while you do this work.
- I tracked my activity on a paper to ensure I remembered to do the infusions 3 times each day; you don't want to miss a dose, nor do you want to double dose. I also used an alarm as a reminder.
- Since I was doing this during the winter in Iowa, I had a sweatshirt with cutoff sleeves so I could stay warm during this task. My PICC line was on the inside of my triceps on my left arm.
- The nurse who installed my PICC line said exercise and normal activities were all fine, just don't put pull on the PICC line itself.
- Once a week a home health care nurse came to my house to clean and inspect the PICC line.
- I could take showers, but I needed to keep the water off the PICC line. Being an aerospace engineer, I wrapped a thin towel around my upper arm over the PICC line, then I put an open ended plastic bag over the towel with rubber bands, then I wrapped the bag with Glad PressNSeal, and then I sealed the ends of this plastic tube with athletic tape.

I hope this information helps.

Note: If I need to be hospitalized again for an extended stay, I will ask for a PICC line instead of an IV line, because my IV lines wear out after a few days, and after a few weeks, both arms are worn out.