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Date: Sun, 15 Apr 2007 05:49:45 -0700 (PDT)

Subject: Re: Re: Rose, about this heart thing

To: Neurosarcoidosis

In-Reply-To: evpuqi+d9e8 (AT) eGroups (DOT) com>

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Hi ,

It only gets to me when I feel my heart acting up. Otherwise, I put it out of

mind. The thing about heart (and lung) involvement is that it is so " there " when

it causes problems. Even so, I say a prayer and move on. My EF (1 yr ago) was

52% which is the low end of normal...they are going to do another echo this

week. My main diagnostic confirmation was arrhythmias (esp when trying to lower

the prednisone), and the 2 thallium cardiac stress tests that showed a patchy

uptake during rest (VERY clinically significant for sarcoid inflammation) and

exercise. My s Hopkins physician at the Sarcoidosis Clinic looked at my

tests and confirmed cardiac sarcoid. I take atenolol and vasotec and also

prednisone and cellcept along with many other meds. The cellcept doesn't bother

me at all. The pred of course has many side effects. Always feel free to ask me

anything...you are not being nosey...we're all here to help and share.

Blessings,

Becky

L jca_susan@...> wrote: Hi

Becky,

Yes you are right - it is difficult to not worry about it but i

refuse to let it take over my life. I think enough of the sarcoid

has alread done that. Do you mind if i ask what your ejection

fraction was? I am also on 2 different types of heart tablets so

make the heart relax a little and easier to beat. I am assuming you

must be on some too? Anyway sorry for being nosey!

Take care

> Hello, >

> I just thought i would share this experience with you as i have

cardiac > sarcoidosis. I had an echo done in Nov 05'. It wasn't too bad

but did > show that the results were a lit bit abnormal. Now as far

as i am > concerned my specialist should have kept a closer eye on it

and he > didn't. As of September last year i have an " ICD " which stands

for > Implantable Cardioverter Device. This now has to regualte my heart

as > i have scarring in my heart and have ended up with Ventricular

> Tachycardia where the heart can start beating too fast. I was

having > alot of palpatations

at the time and believe the damage had probably > already been

done. I also have to take 2 different types of > medications every day

for the rest of my life even if the sarcoid > disappears. I am only 33.

All i want to tell you is to be very > careful. If you think you are

having ANY issues with your heart get it > checked out straight

away. There is no harm in being too careful. > Rose is right - it is

difficult to diagnose. Let me know if you have > anymore

questions. > > L. > > > >

> > >

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