Endocarditis

[Philip]

I am almost 7 months post-op but am now 5 days into IV antibiotic treatment for endocarditis; another bump on the road to recovery. Have any of you experienced this after your valve replacement? Was it resolved with antibiotics? What physical restrictions did you have during treatment? Was additional surgery required? Tomorrow a main line will be installed to replace the temporary IV used for the last 5 days. Any information will be appreciated.
Philip

 

[Natanni]

Nathan had a PICC line with IV Rocephin that we did @ home twice daily for 6 weeks (I am a nurse, made things a little easier) in his right arm ( he is left handed). He had no restrictions that either of us remember, but he did find it difficult to ride his motorcycle. A surgeon I worked for offered to do a Groshong Cath which is a little more out of they way on the chest region, but
he opted to just keep the PICC. My husbands endocarditis (Strep Viridans) was Pre-AVR.

Do they have any idea how you aquired BE? What bacteria is involved? The infection control team @ the Mayo had been told by our local hospital that Nathan was positive for Staph which turned out to be the Strep Viridans when cultured by the Mayo. Nathan had 3 Trans Esophogeal Echos "TEEs", brain MRIs, and serum blood cultures for 3 months while dealing with endo. Keep us posted!

 

[Lynlw]

Justin had BE(also had steph V) and had 6 weeks of vanco and gentomycin, he really didn't have any restrictions besides it being hard to use his arm w/ the pic line in it,
and he was only 11 so it was mostly couldn't play basketball or go snowboarding . it was before he got his pulm valve replaced but after 3 other heart surgeries, but he got thru it w/out any more damage to his heart or valves.
I was just telling janet earlier this week, that because of the pic line he had to miss a snowboarding trip w/ scouts so I told him I would take him as soon as his line was pulled, so we went 3 days after it came out. and Just Justin's great luck he was walking out of the lodge and an adult was carrying a snowboard over his shoulder and turned around and hit justin in the mouth knocking a tooth out. You should have heard Justin ped card when i had to call and see what he wanted to do about it.
hopefully they picked up your BE before any damage was done, lyn

 

[PJmomrunner]

Ugh!!! Sorry to hear this, Philip. I'm pullin' for ya!

 

[Adrienne]

I had endocarditis (strep viridans) in 2004, over a year before my surgery. It did not come on as a result of a dental appointment. It was one of those fluke things where maybe my gum bled and the bacteria got into the bloodstream and happened to latch on to the valve.

I was in the hospital for 5 days on IV antibiotics (penicillan and gentimycin) (sp??). Then they put in a PICC line and I had a portable pump for 4 weeks. It got rid of the infection, thank God, but the first week I was on it, there were all kinds of things that went wrong due to the nurses at this community health center who handled changing the tubing, etc. etc. It was the first time they had used this type of pump.

 

[sue943]

Sorry, mine was also pre-OHS, and was the cause of my heart problems. Being Britain, I was hospitalised for almost six weeks until I was completely clear of infection. I wasn't confined to bed apart from the early days but had no energy anyway and just lay in my bed most of the time reading.

It was two weeks after diagnosis that my heart valves began to murmur, My diagnosis was two and a half months after my first symptoms, it was only the stroke that caused me to be taken to hospital and then to be diagnosed.

I didn't have a main line at all and as the treatment continued so it became more difficult for them to find new veins to use.

I hope you are well soon with no complications.

 

[Philip]

Thanks everyone. Friday the bacteria had not been identified specifically, but the family is Gram Positive. They said we would have a better grip on the cause once identified. A PICC line will be installed today. I feel ok but am afraid of dislodging vegetation by exercise until given approval to play hard.
Philip

 

[sue943]

Having had a stroke due to dislodged vegetation then I agree with you, not good.

Are you actually feeling well enough to exercise? How did you know you had endocarditis, what made you get checked out?

 

[Adrienne]

Like Sue943, I am amazed you feel well enough to exercise!!!!! Just walking a short distance wore me out the first couple of weeks with endocarditis!

 

[Kathy Canistro]

Hi Philip,

I had prosthetic valve endcarditis 7 months after my first OHS. I got 2 mechanicals in June 2005, in Jan 2006 Iwas critically ill and had to get the first valves replaced. The antibiotic Gentamycin caused my kidneys to fail and I had to changed to naphcillin (spelling) I had a power PIC line with a double lumen for 6 weeks after the second OHS. I was a tough road to recover from the second OHS. I was really worn out for many weeks. I wish you a speedy recovery.

Kathy

 

[sue943]

I also had gentamycin and I got renal impairment after a few weeks and was taken off it.

 

[Marguerite53]

Hi Philip. Just want you to know I'm thinking of you and hoping for an update soon. Sounds like you're getting more of a science lesson than you ever, ever wanted. Hoping this will all be resolved for you soon.

Marguerite

 

[Philip]

My bacteria now has a name: "propionibacterium acnes" commonly found on the skin. The assumed point of entry is a small cut or scratch. It has been months since I had either that I was aware of.
I mentioned to the cardiologist on a routine visit that I had low intermittent fever so it was off to the lab. I was surprised when the cultures came back positive. The scary part of all this is that the fever subsided prior to the start of antibiotic treatment and not being the type to go to the doctor for little things this would be growing untreated if I had not been in for a 6 month visit. My radar has now been re-tuned.
I will take it very slow on the exercise until cardiology instructs me otherwise. I don't feel like working-out hard but I feel well enough to do something. Exercise for me has always been something that you do daily, a part of your routine like brushing your teeth instead of something that you fit into your schedule if you can.
Thanks again for all your replies.
Philip

 

[Praline]

Philip,

Philip,

I am so sorry to read about your endocarditis. I am sending positive thoughts your way. I hope you feel better soon.

 

[toni]

Philip,

I know this is a very old thread, but my husband is currently in the same situation, and I'm simply looking for more info. We are currently at MAYO, and have been told that finding the propionbacterium acnes as the cause of endocarditis is quite rare. My husband at this point is having diminished kidney function, so all antibiotics stopped for now. Hoping that it is the vancomycin that's causing it, and not the penicillin (g). Hoping you've had a positive outcome.

 

[Mileena46]

Don't know anything about this Toni, but wanted to tell you I am pulling for you both!

 

[normofthenorth]

Toni, I'm pretty sure philip survived his BE, and is still blogging here, but I don't know if his Endocarditis was resolved with IV antibiotics alone, or not.

My Dad had BE a couple of times and got over it with a PICC line and Penicillin, but his valves were in relatively good shape (though he'd had rheumatic fever as a kid).

The only other info I've got is from a new (2010) article by Tirone David, Armstrong, & Maganti (at TGH), about the remarkable "Gold Standard" longevity they've been getting with the Medtronics Hancock II "pig" valve. I've posted a link to the abstract a few times, and I only have the full text by fax.

Here's the section on BE:

Patients with prosthetic heart valves have a low but constant risk of endocarditis. The freedom from endocarditis in this cohort [1100-odd patients] was 94.5% +/- 1% at 20 years. Survival was poor if patients were treated with antibiotics alone. Most patients referred back to our institution had repeat operations, and only 1 of 16 died. During the past 2 decades, we have adopted an aggressive approach in the treatment of prosthetic valve endocarditis, but the outcomes remain largely dependent on the patient's clinical status when the operation occurs [11].

The footnote is to a 2007 article by those same authors plus Gavra, Feindel [my guy!], & Regesta , entitled "Surgical treatment of active infective endocarditis: a continued challenge".

Probably not what you wanted to hear, but I hope it helps.

 

[toni]

Here's the deal with my husband, Fred: Mechanical valve (carbo medic) placed in July 2009 because of a bicuspid valve; July 2010 major hemorraghic stroke - coma, life support, survivor! Off all anticoagulants until December 10. December 15 "shower" - several emboli to the brain. Two days later, clot found on mechanical valve - transported to MAYO (original surgery here; Sundt surgeon, Sarano cardio doc). Tried heparin therapy to dissolve clot - no go. Surgery on December to replace carbo med valve with a Medtronic Freestyle Porcine. Difficult surgery, 12+ hours, but great recovery - home Christmas Eve. December 27th, call that infection found on tissue removed from clot. Antibiotics started, now stopped because of kidney situation. Hoping to resume some form of antibiotic soon. It's our understanding that this form of bacteria (propionbacterium acnes, commonly found on one's skin is rare to find as culprit of endocarditis) - we welcome any info/research/experience with this. Thanks for the good thoughts and info shared thus far.

toni

 

[Lynlw]

Norm, you may be thinking of a different Phillip. Altho he did well, here is one of his first post after his picline came out http://www.valvereplacement.org/forums/showthread.php?19331-Unplugged-and-back-in-action&highlight=



Toni, I hope they are able to find an antibiotic that doesn't bother Fred's kidneys soon. Hopefully the infection did not spread and since the infected valve was already removed, he doesn't have any of the bacteria still in him. I'm guessing they did blood cultures when he was readmitted, IF they did do them do you know if anything grew? Justin had BE when he was 11 with a strep infection, he had 6 weeks of vancomycin and gentomycin and recoverred well no damage to any of his valves or any of the other things like patches conduits ect he has.
10 days After his conduit surgery in 07 he was readmitted because his incision didn't look good to me, (he was doing great beside that) and when he went in to get checked, he had a fever come and go so they did an echo and xray, both looked good, but they admitted him and did a CT scan which showed an infection under his sternum. So they did ER surgery the next morning. He had a pretty bad infection not only in the area around his heart, but also in alot of his sternum, they removed everything that was infected. He was started on IV vanco and gento until all the test came back to show what he had growing>
It turned out his was also caused by a very rare never seen in sternum bacteria "staph warneri" the good news was even tho his chest area was infected the bacteria never went to his blood (negative blood cultures) so since the infected parts (and a little around them) were removed no other areas had any infection grow..including his heart or valves, conduit ect which was a concern since he has alot of man made material, wires ect which are easier for infections to spread on. Hopefully Fred's infection did not go anywhere beside the valve that they removed either. Anyway when the cultures and sensitivity (test that show which anti-biotics work against his infection) came back one of the antibiotics that worked was bactrim, so instead of needing the 6 weeks of vanco and gento again he was able to just have bactrim. Hopefully they can find another antibiotic that works against propionbacterium acnes that isn't as tough on the kidneys and other organs.
You know Fred and you have been in my prayers since you first posted he was in the OR the other day. I PRAY that 2011 is a much better year for the both of you.

 

[normofthenorth]

+1 to Lyn's hopes and wishes, Toni!

Lyn, both of those posters are "Philip", and they both have "Join Date: Jan 2006" & "Location: New Orleans, LA", so they do seem like the same guy. Was I wrong that he is still blogging here now?