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Hrtofwmston
07-15-2009, 10:57 PM
At 17 I feel like a vet of the peds cardiology scene and at a recent meeting with some other families I provided a unique perspective on many issues they were worrying about for themselves and for their kids. If anyone has any questions or just wants to chat please contact me at benjohnson8350@gmail.com
CardioClay
07-20-2009, 12:53 AM
He's not the only ped vet, I am willing to talk too. Email anytime: JECsax218@comcast.net

(sorry Ben, just have to put myself out there too.)
bulybuly
07-21-2009, 11:17 AM
Thanks Ben and Jaimie! Knowing there are folks who grew up through the ped system with HCM is reassuring to us parents with kids...

So tell me, if you would, who took care of you (cardioligist) as you were growing up? Who do you think are the pediatric cardiologists who specialize in HCM (you both seem to be pretty darn knowledgeable from your own journey)(And if you had a little brother or sister in need of ICDs, where would you want them to go for that?

AND how did your parents introduce the idea of an ICD to you, if they did? I've tried "a little device that will keep you safe" " let you do more things" etc...trying to get the seed planted ....

Thanks!

Marsha
CardioClay
07-21-2009, 10:29 PM
Marsha: My cardiologist is Jack Rychik at CHOP (Children's Hospital of Philadelphia). I've had him since I was an infant. He's the only cardiologist I've had, and he knows well what he's talking about HCM.

I do not have an ICD, I was checked for the need to get one. Apparently, my HCM was bad enough to say it would not work in my situation. I'm not sure if I will need one in the future, but considering the stories I've read on here, it's possible.
Hrtofwmston
07-25-2009, 03:35 PM
I didnt get my parents easing me into the idea I had a doctor come in, take a listen and go "Yeah it would probably be a good idea if you got a pacemaker" As far as my cardiologist I've been lucky with Dr. Monica Goble at Sparrow Hospital in Lansing. (Shes also like U of M liason or something like that) If any of my little brothers needed ICDs I would hope they get them done at sparrow like me.