newbie

[Guest guest]

Hi,

I am " mummy " to a 22 year old daughter who has been dealing with

multiple organ problems - myasthenia type muscle weakness, heart

conduction problems leading to a pacemaker at 17, colonic dysmotility

leading to a loop illeostomy when she was 20, her gal bladder stopped

working so they took that out, her kidneys waste potassium and magnesium

so she is on supplements and amelioride, and she had a splenic infarct thats

lead to removing her spleen, has had trouble with infections and most

recently has spent the past 10 months in the hospital because of chronic

bacteremia and endocarditis which led to removing her pacemaker and wires,

putting in a temporary one for 6 weeks, putting in a new pacemaker, then

taking it our a month later during open heart surgery while they removed her

growing heart vegitation (they also removed her thymus). Her new pacemaker

is attached to the outside of her heart. The docs have tried three trials of no

antibiotics, and this last time she had fevers up to 105.8 with rigors 3 to 4

times a day. It took 6 days of three different IV antibiotics along with a

fungicide to bring her fevers down (her wbc went up to 48.....thankfully it is

back down to 10). She is taking IVIG every three weeks to help boost her

immune system, and she gets epogen shots three times a week to boost her

blood counts (she is chronically anemic). Her doctors have thought that she

has a mitochondrial cytopathy, but her blood tests have been negative for the

DNA mutations). I was wondering if anyone knew of a correlation between

chronic infection and mitochondrial disorders.

Thanks,

Lyn

Bonnie's website is www.caringbridge.org/az/bonniemarie