My 14 year old daughter had rheumatic fever at age 10 which damaged her mitral valve. At some point, hopefully in the far future, she will need sugery to replace the valve. I am wondering if there is someone she could talk to that would let her know what to expect and make the experience less scary. Thank you.

Our almost 16 year old son, too, faces a mitral valve replacement somewhere, hopefully, far in the future. It's Boruch Hash-m about 14 years already of saying "far in the future." His issue was a congenital heart defect secondary to Down syndrome. He had his defect repaired at 5 months, but was left with a mitral regurgitation which for the last 14 years has been labeled 'moderate to severe.' He's on plenty of meds - dig, lasix, spironolactone, enalapril - and we go for a checkup every 6 months - echo and all. Our wonderful doctor - Rubin Cooper currently chief at Cornell (assistant at Columbia Babies) here in NY - is always very reassuring. He feels we'll see signs (changed energy level, shortness of breath, etc) that perhaps it's time to consider the valve replacement well before it is seen at a checkup... He has remained very small in stature which has maybe been a hidden bracha because his heart too hasn't grown so his mitral regurgitation hasn't worsened.
I certainly know of people well into adulthood who've done beautifully after a valve replacement (and would certainly be available to talk), and kids should have an even easier time...
Is your daughter's activity level restricted? Dr. Cooper has repeatedly told us that our son won't run the marathon (sometimes I'm not so sure!), but that's about it for limitations! Are you in the NY area? Are you pleased with your cardiologist?
Chazak ve'ematz and refuos to all...

When I was 8 I had my first episode of Rheumatic Fever with a pre-systolic murmur and I took Pen VK for a while and STOPED, when I was 10 I had a relapse I was hospitalized for 10 days and then when on with the Bicilin shots for AT LEAST 25 YEARS AND BARUCH H' I am off the bicilin and have no sign or symptoms of anything

please share your positive experiences as well
Text