pacemaker lead endocarditis

My daughter is 10 yrs old. She has congenital heart disease (tetralogy of fallot) underwent repair surgery when she was 9 months old ! Subsequently had a pacemaker installed at 6 yrs .

She was perfectly fine and then suddenly developed high fever went into cardiac failure and was diagnosed with endocarditis. ..vegetation on the lead. I was shattered and thought I had lost her.
Moved her to one of the good hospitals of India. ..she is currently on high dozes of antibiotics and has come back to her normal self.

The issue is that the lead needs needs to be removed and there is this fear of the vegetation getting dislodged. Thus many were considering open heart surgery !!!
Doctors are meeting tomorrow and see as to what will be the best approach.
They say lead endocarditis is rare....anyone out there experienced this ??.
Cant see my baby suffer :(

4 Comments

This IS rare!

by donr - 2013-05-15 04:05:17

Zas: My heading says it all. I will not begin to offer a comment other than what is below (I took this from a report written by a team in Barcelona, Spain It seems to echo what three other articles said about it.:

"CONCLUSIONS:

Electrode lead endocarditis occurred in < 1% of pacemaker and ICD implants. Conservative treatment without explantation of all hardware failed in all patients, and surgical treatment during antibiotic therapy was effective in eradication of infection but was associated with a 12.5% mortality. The only patient characteristic associated with treatment failure or death was the absence of surgical removal of all infected hardware. Complete extraction of the pacemaker or ICD should be considered as standard therapy for most patients with CD endocarditis."

I assume that you have access to Google's search engine in India. If so, Search on the entry "Pacemaker Lead Endocardia." AT least a half dozen articles should show up. Two of them are by an Indian Dr. names Singh. At least there are Indian Dr's who are familiar w/ the problem, so you are not in a wasteland of medical knowledge.

If you cannot find them on Google, Pls send me an answer & I'll send you the links to the articles. You really need to read them yourself.

My opinion is that if caught early &b treated aggressively as described in the articles, your daughter has a serious, but not hopeless, situation.

Don

ditto the above comments...

by lubro - 2013-05-15 10:05:17

being a father, I understand that you would rather be sick yourself than have your child sick. my prayers and positive thoughts are headed your way...lots of good people here at PMC, and I'm sure you'll find some answers...hang in there, and do take care of yourself...gotta be strong for your daughter...

Lubro

Thoughts & Prayers

by Many Blessings - 2013-05-15 12:05:59

Hi Zas,

I am so sorry that I have no information to give you either, but I want you to know that I am keeping you and your daughter in my thoughts and prayers.

I know there will be someone out here that can help you, and give you advice. It may take a while, but hang in there, I know someone will give you some guidance and answers.

Blessings to you and your daughter.

thank you all

by zas - 2013-05-18 09:05:26

Thanks to everyone for the support, really appreciate it.
Its finally fixed, surgery us scheduled for Monday morning. ..20th. Praying for the best.
It will be the small procedure, done in cath lab .

Don...yes I have been continously reading about it....and have finished almost all the articles !!
She has been getting heavy antibiotics since almost 2 weeks now...and doctors are pretty confident. But as a mother I am still scared.
We are in of indias best cardiac hospital. ...I think its best in asia.so I am hopeful.
Her complicated tof repair was done here too.

Again thank you all...will keep updated.

You know you're wired when...

You play MP3 files on your pacer.

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