How Are You Doing After Your MD Visit Today?

[Guest guest]

Hi :

Just wondering how you made out today. You have been in my thoughts and

I hope

everything went much better for you and that the doctors are able to

help with the

way you've been feeling the past few days and get you set up for a new

battery

pronto! Let us know when you can...

Sending You Healing Thoughts,

Jody

wrote:

>

> good morning all its 5am here and thought i wold check in before

> taking off. have been awak since 230 am am really tired but tme to

> splash some cold water in the face and get moving. will check in when

> i get back later today. hope you are ok and doing better

> today. Jody well what i can i say, guess im speachless right now,

> . and Staci, keep smileing, makes people wonder what you're up to.

> Take care all

>

>

> >

> > From: Candi <candi51gmail (DOT) com>

> > Subject: Left Ventricle

> > Non Compaction

> > @groups .com

> > Date: Sunday, July 20, 2008, 8:45 AM

> >

> > Hello-

> > I was diagnosed with Left

> > Ventricle Non Compaction in

> > January. I am 31

> > yrs old. My EF is getting slightly

> > better now that I am on meds- Ace

> > inhib, beta blocker, HCTZ, etc. We

> > have gone from talking transplant

> > all the way to just treating with

> > meds and watching.

> >

> > There were many studies that

> > showed one of reasons for the high

> > mortality of this condition could

> > be linked to sudden cardiac death due

> > to Vfib so my Dr's decided I

> > needed an ICD. This is fine with me

> > because it does give me peace of

> > mind that I won't just keel over.

> > It's seems to be that same dilema

> > probably alot of us have- " not crazy

> > about having this thing in my

> > chest but it is the lesser of the

> > evils "

> > mentality. I only have one lead at

> > this time but they can add up to 3

> > momore if my EF decreases and I

> > need to be paced.

> >

> > Anyhow- I am trying to locate more

> > people with this condition and am in

> > the process of setting up a

> > website with info for patients and

> > families

> > with info about LVNC and to create

> > a community so the LVNC'ers can

> > contact each other. So far I have

> > met one woman in Canada, one in

> > Massachusetts, and one man in

> > London with this condition. I am in

> > Illinois. We are all being treated

> > very differently and have

> > enjoyed " comparing notes " so to say.

> >

> > If anyone has been diagnosed with

> > this condition or has any experience

> > wit this type of cardiomyopathy, I

> > would love to hear from you.

> >

> > Thanks for reading!

> > And thanks to the moderators and

> > all who post- this is a great

> > resource!

> >

> > Candi

> >

> >

> >

> >

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