Joined: 22 Sep 2007 Posts: 1 Location: rochester , ny USA
Cardio Myopathy Posted: 09-22-07 15:02pm
I was diagnosed with viral cardio myopathy
in june of 2004. I had an ef of 10/15%.
Yes I was in bad shape.. but I have been
on coreg since I was diagnosed and my ef
went up to 50/55 % in about 6 months.. I
have been feeling fine.. Recently, within
the last few weeks I have noticed that I
am getting a little short of breath as
well as I have had a some "cramping "
feeling in my chest.. not pain.. The last
few nights I noticed when I lay down its
harder for me to breath, much like it was
in the begining before I was diagnosed.. I
have a slight cough, but no swelling (
edema) I would like to know if it is
possible for my ef to lower and if my
condition can worsen. I have taken good
care of myself. I take my meds avidly. I
am 49 yrs old and in otherwise good
health. I do not smoke and havent for some
years now.
I know I need to get checked.. but my
biggest problem is that I have no
insurance right now and I do not want to
end up with a huge bill from having the
echo done.. I am due for one, actually
over due.. . I was supposed to have an
echo done once a yr.. It is coming up on 2
yrs since I had the last one done.. but
because of insurance I have put it off..
thanks you
D cumberland
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BionicMan
New User, Becoming EHEALTHy
Joined: 06 Jan 2008 Posts: 2
Cardio Myopathy Posted: 01-06-08 22:02pm
Hey there,
I've had hypertropic cardiomyopathy since
I was 12 years old (a full 22 years ago).
The bad news is, even if you take all your
meds and do everything right, it can get
worse over time. Mine got to the point
where, 6 or so years ago, I couldn't even
stand up in the shower or climb a flight
of stairs without being short of breath.
I had open-heart surgery 5 years ago, a
myectomy to be precise, and afterwards, I
felt great. They took me off all my meds
and I felt more normal than I had in a
long time. Now, I'm Canadian, so all of
the tests and surgeries didn't cost a
dime, so I don't know how much an echo
would cost you. But after two years,
espescially with your condition, it might
be worth it to get one done.
If you want more perspective, pm me. And
good luck to you.
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redsoxgirl
Experienced User , Rather EHEALTHy
Joined: 01 Mar 2008 Posts: 183 Location: ,
cardiomyopathy Posted: 03-01-08 20:53pm
i am a 38 year old female with severe
cardiomyopathy caused by a viral infection
that invaded and diseased my whole heart.
i have had all of my valves replaced. i
suffer from severe heart failure which i
am hospitalized frequently for despite me
taking care of myself. i have been told
since my last hospitalization three weeks
ago to see my cardiologist every week plus
get a ton of heart tests done every week.
last week i asked the cardiologist to do
the procedure you had done and he said no.
i had an echo done yesterday and my ef is
now 8 and was told my cardioogist would
talk to me about it on monday. i feel very
sick swollen abdomen and feet. my blood
pressure in70/54 and my heart is pounding
at 140. i know when i see the
cardiologist on monday he will put me in
the hospital again. what is going on with
my condition? why would he not do to me
the procedure you had. i know with an
ejection fraction of now 8 my heart is
getting worse. what kind of treatment do
you think they will give me to help me? i
also noticed the vein in my neck is
enlarged and i feel it flutter now and
then. this just happened today. please
help you have gone through this. do not be
afraid to answer me truthfully. i would
rather know what to expect. insurance is
not an issue. i have good insurance. hope
you answer my post. ty redsoxgirl
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huffster
New User, Becoming EHEALTHy
Joined: 30 Dec 2006 Posts: 39 Location: Appleton, WI USA
Thanks: 1
Thanked:0
CoQ10 Posted: 03-16-08 10:13am
Have you considered taking a CoQ10
supplement? Not sure if it would help in
your case, but it might be worth a try.
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redsoxgirl
Experienced User , Rather EHEALTHy
Joined: 01 Mar 2008 Posts: 183 Location: ,
huffster Posted: 03-16-08 10:18am
thank you for your suggestion. i am
currently hospitalized awaiting an
implantation of a biventricular assist
device and eventually a heart transplant.
redsoxgirl
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redsoxgirl
Experienced User , Rather EHEALTHy
Joined: 01 Mar 2008 Posts: 183 Location: ,
huffster Posted: 03-16-08 11:59am
thank you for your suggestion. i am
currently hospitalized awaiting an
implantation of a biventricular assist
device and eventually a heart transplant.
redsoxgirl
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hopefullme
New User, Becoming EHEALTHy
Joined: 30 Apr 2008 Posts: 1
help Posted: 04-30-08 15:07pm
my brother was just told he has viral
cardiomyopathy and im wondering if theres
a chance he can have a normal life or if a
heart transplant is nessary i've also herd
that some people have only a few years?
can someone give me some more info as i am
going crazy with fear..
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This page was last updated on June 11, 2008
