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Idiopathic Dilated Cardiomyopathy 
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Current Postings on This Page (83): • I am a 40 y.o. female with 5 children. I was diagnosed with Cardiomyopathy 4 months ago with an EF of 40%. I have worn monitors frequently which has shown as many as 42,000 PVC's in 24 hours. I have also had runs of V-tach. I also have a severely regurgitative MV. I had a PVC ablation which was ineffective and am going for another in 2 weeks and I am taking several meds including Lisinopril, metoprolol and mag sulfate. My mother died from Cardiomyopathy at 58, her twin brother at 63, and I have a cousin with the same diagnosis as well. I am symptomatic every day, and I try to keep a positive outlook..yet I know I don't have a crystal ball. Was just reading these posts and wanted to add my story with a few thoughts...There are so many worse things out there in the world. (I have seen most as I am an ER nurse). This is not the end, only a new challenge. Whatever any of our outcomes, in the end..everything will be OK. my Mom said that when she was diagnosed at 55. Even though she lost her battle, I know she is OK and so are we...just miss her a lot!! Love your families as though today was your last and fight to live as long as you can. God Bless all of you! Keep up the good fight! • Thanks so much for this web site..I am a 56 yr old women who was diagnosed with dilated cardiomyopathy in June 2011..my cardiologist. Didn't even explain my condition to me...he told me to look it up online...well when I saw that there was no cure and the death rate was high...I went into depression thinking I am going to die in a few years ...I am on all the was meds. I have been reading that everyone is on.my heart rate function was at 15% when I was in the hospital...it has gone up to 35-40% ...I am having complication with irregular heart beat...I'm going in tomorrow they are going to do an ablation on my heart to help stop the irregular heart beat...I hope it helps...I have fatigue on a regular basis...all I do is try to relax in watch a movie so I won't dwell on it. This blog has really encouraged me to heard what others are feeling and how they are treating this disease. I am going to find an other doctor who will discuss my condition more openly...with the prayers of my friends and my Creator I'm trying to live each as my last, and enjoy my family and tell them I love them everyday. • Diagnosed with Asymptomatic Idiopathic DCM in January 1998. First cardiologist misdiagnosed me with EF of 25 and intra ventricular blood clots. He gave me 5 years. Second opinion- EF 35, no blood clots, enlarged size, out of range wall thickness. Treatment included massive doses of Coreg (100mg/day) which was pretty radical in 1999. No ICD. My heart size shrunk back to normal along with a normal wall thickness by 2005. EF of 60-65 in 2009. Still on beta blockers and other meds. Feeling good and active at age 63. Still play tennis 4 hours/week and work out 3 hours/week plus working 40 hours/week. The Coreg was brutal especially when going from 50mg/day to 100mg. Thank God I'm on maintenance Toprol XL these days. It's like candy compared to Coreg. • My husband was diagnosed in 1992 with idiopathic CM thought to be from exposure to a Coxsackie virus as an ER nurse. EF was 17% when dx. Meds - amiodarone, lasix, vasotec, digoxin, spironolactone to name a few helped. At the time, they gave him ONE year to live. Following year he developed Ventricular Tachycardia. He wound up having an AICD implanted - first one was big and took three incisions and wasn't redundant so when the wires fractured there was no coverage! Thankfully we did not know that until he developed a severe URI which caused CHF and off to the ER. On chest x-ray, they saw the broken wires. My husband managed to live until 2007 and did not die because of his cardiac problems. He was misdiagnosed as having a malignancy that was actually an abscess and one of the doctors at the VA poked it and four hours later he was dead. Bottom line, the cardiac care he received was extraordinary. The fact that we both are RNs was a mixed blessing - we knew all the problems and liabilities involved. My husband, especially after the AICD implant, lived his life to the fullest. The medication regimen managed to increase his EF to over 30%. Live all your life to the max. • diagnosed in Jan '03 with IDC. EF was 10%. Once meds (coreg, altace, thyroid, lasix, aldactone, digoxin) to maximum doses over first two months, EF rose to 40%. It is now almost 9 years later--on third defibrillator. This one resynchronizes my ventricles. I feel more fatigued over past few months. Harder to walk even on flat surface w/o any SOB or laboring. However, today's echo showed IMPROVEMENT in the cardiac muscle and an EF of 50%. So, yes, one can improve. Must be another reason for fatiguability and laborious respirations with exertion. • I was diagnosed with CM in June of this year. EF of 30% was put on a small dose of Coreg, ACE inhibitor, baby aspirin. I have exercised most my life, don't feel symptoms, or shortness of breath around this. I have consulted two cardiologists. One says since it is now November and last echocardiogram was about the same 35% I should put a pace/defibrillator in, also diagnosed with sever sleep apnea, other cardiologists believes C-pap will improve the EF...anyone hear this before? Right now very depressed which isn't helping but can EF improve either with medication (increasing Coreg) of C-Pap..new at this any experience with EF improving over time...one cardiologist says if it hasn't changed yet it won't? Not sure who to believe...any feedback around improving EF is appreciated. I have stopped drinking, never smoked and lost 20 lbs (mostly from depression) I can walk run 3 miles with out issues but not sure if I should be exercising...this illness is difficult to understand...When i was told i had CM I did not believe i had heart damage, meaning that my heart would improve...is that not the case most of the time. • Am 87. My progressive heart block became total Jan.1998. Heart normal
otherwise. Had one-wire pacemaker. Echo in 2003 showed enlarged LV and EF 30.
Cardiologist thought cause might be virus or desynchronization. Got an ICD with
3 wires, Coreg 2x37 1/2, Losartan, Spironolactone and lots of vitamins. Latest
echo shows LV was rebuilt with normal wall thickness, but echo still 30. (Was
told EF is not as important as we think it is) Reduced Coreg to 2x25, other meds
same. Live on 9 acres, not as chipper as I used to be, my wife says it's my age.
Tough to have a young spirit in an old body. Cardiologist says I can live another
10 years, hope so, am curious to see how the occupation will fare. Wish I could
be there... • I'm a 32 year old male in reasonable good health,
wife and 3 children, diagnosed just 3 weeks ago with idiopathic DCM,
my EF is 10/15%, has anybody
any experience at this level? • My sister had chemotherapy for breast cancer 10
years ago at age 34. In spring of this year she began having symptoms of
CHF which she thought was asthma.
In June she became very ill and was finally diagnosed with an enlarged heart,
CHF, dilated cardiomyopathy with an EF of 10%. We have now been told that her
EF dropped 26 points after her chemotherapy was finished - unfortunately she
was never told that she had sustained heart damage. She died on August 27,
2011. Has anyone else experienced anything similar? I think ALL chemotherapy
patients
should be followed up at least annually by a cardiologist and am seeking answers
as to why this is not being done. She leaves behind her husband and 3 daughters.
I welcome any comments. • This is to address the lady
who's 28 and wanting to get pregnant. I was 6 months pregnant and 26 years old when I found
out that I had IDC.
Me and my baby almost didn't make it. It was a miracle we both survived
the delivery. That was the biggest problem because when you go in labour
your heart has to pump 500 cc of blood per something...I went into heart
failure, water in my lungs. I had an emergency c-section and was in ICU
for 3 days. My baby was born 5 minutes after they sedated me and she was
great, thank God. She had no problem, but I was in trouble, big trouble.
I was advised that another pregnancy would kill me so we decided not to
have anymore children, but remember I was already pregnant when I found
out about my condition... • Just over a year since diagnosis of non-ischemic
CM. EF was 15, went to 20 over 90 days on meds. stayed there. now - max
beta blockers, statin, aspirin, lasix, spironolactone, avapro, Feeling
really good - light physical working 6-hour day no prob. (I'm 70 now.
Only remaining symptom is I sweat easily. Regained 20 of the 40 pounds
lost during onset and early recovery, not delighted with that but i look
more "normal". not obese but 20 over ideal. ICD was implanted 9 months
ago - no triggers yet, but much pacing activity (THEY guess that's at
night).Doing MUCH better than anyone thought i would - and not really
doing anything special except religiously taking scrip drugs plus co-q-10.hope
you all fare
as well. • I am a 53yr old women, diagnosed with CHF
in 2000 and then had a pacemaker put in back in 2003. I have been in
hospital several times over the years. I
am on coreg, lasix and several other meds. My GP doctor says he doesn't know
how I keep going, I just amaze him. My cardio doctor is also happily amazed
and my echo last week went from EF of 13-15% 20-25%. We have discussed
Heart Transplant,
but I am not sure I want to do it. So, it is on hold. I live in Colorado and
there is pretty good air here. I am now thinking to move to San Diego, CA and
I know the air is very bad there. I know the altitude will help me breath easier,
but an concerned about the air quality now that I have been ill. I am from
CA, but I have been in CO 11yrs, and wonder if the air quality in CO
could be what
has helped me stay alive - well of course plus my pacemaker and good doctors.
Is San Diego, CA a good move for someone with CHF? • I just turned 60 and have had Idiopathic
Dilated Cardiomyopathy for 9 years. I have bounced between 20 % 30%
EF. I have been converted by my ICD 21 times with the last time taking
5
shocks to get me out of V-Tach. I have gone into V-Fib 3 times. I found
the best "To live by Info" at http://hartfalenderwijs.nl/en/lifestyle.htmI
just wished I had found and followed his advice sooner. I have had
to give up all exercise but swimming. By swimming slow I can keep
heart
rate below 100. I swim with a pull buoy or just fins. I can't kick
and arm pull at the same time because my heart rate gets too high.
It have
gotten my workout up to 2500 yards. Of Course there is a nap afterward
have to shut it down after about 3 weeks and give my body a rest. I
have to completely shut down for a week before and after a vacation.Is
anyone
else swimming?There is a Summer Camp for kids 7-16 http://heartcamp.com/
I believe that it is free the first year. Sitting up in a reclined
position helps when you are feeling bad.Last but not least - I am waiting
for
cloned hearts. • Hello all! I am 28 years old and 3 months
ago I was diagnosed with idiopathic cardiomyopathy my EF was 38%. My
cardiologist hasn't given me an exact reason
but thinks I may have gotten an infection in my heart. She isn't really telling
me much at this point but am on medications and will have another ultrasound
on my heart in august. The biggest part of this that is troubling to me is
that I was told for the next 6 months it would be dangerous for me to
get pregnant.
My husband and I want to try for our first child next summer and my dr said
that I would have to be at 45% to even consider getting pregnant and
still be high
risk, she would prefer I wait until I am at 50%. Has anyone here dealt with
this while they were pregnant and could give me some advice or information.
I really
feel that as soon as my dr gives us any type of okay i want to try to get pregnant
but am also afraid of what could happen to me or my future child if I decide
to get pregnant before I hit the 50% mark. Thanks! • Hello, I’m going to be 34 the next
day, and just found out about my heart EF is at 40% and valves leaking
on both right and left, i have 2 boys and 1 girl, you could have never
told me that this would have happened to me.
I’m scared for my children finding me dead, or where they will end up.
every day i have chest daily and they radiate across my right breast and down
my right arm. trying not to think of the worst,i try to show my babies love every
second and take life one day at a time. if anyone that is a single mom with small
kids ages 11-16mths,please email me with info on how to coupe and style changes.
Thank you to whoever came up with this post idea, i feel a little better knowing
I’m not the only one. Thank you..... • I am a 57 yr old male with DCM-HF (diagnosed
last year) and Narcolepsy (N-diagnosed 1996). Last echo had LV @ approximately
9.0. My EF approximately
30%, give or take. AICD implanted 1/16/2011. On 2/16/2011, 4th lead added to
AICD, placed on back of heart; charge was insufficient with 3 leads for effective
cardioversion. Awkward position, as meds for N exacerbate my heart and AFIB
(diagnosed 1996), while DCM related symptomology and meds increases fatigue,
etc., further
aggravating my day-to-day struggles with N. Pending outcome of VA rating, which
should place me at 100% disability. Working as a tax auditor is very stressful.
Whole situation is very depressing. Am I the only narcoleptic with DCM-HF and
AICD? • I was diagnosed with ICM in 2004. An EF
of 40% and plummeting. I was overweight at about 70 lbs. Even before
I had lost the 70 lbs. I started a regimen of Coq10 (NSI CoQ10 + Alpha
Lipoic Acid + Acetyl L-Carnitine HCl 600-1000 mg daily) Corvalen- Hawthorne
Berry-Fish Oil 8 grams-Am now 57% EF after 6 years. Thank you Dr. Sinatra!! • One thing that I have realised is that the
statistic shows that patients after being diagnosed do ok with medications
I have been taking enalipril, lasix,
K-dur and xanax because I also have arrhythmias I wear a life vest (externally
worn defibrillator) because of the SCD that cause my mother demise, this was
until my Doctors figured out my unusual presentations which was I started with
PVC's in dec 2009 then within 6 months of taking propranolol for PVC's my EF
when from 60% on echo to 28/30% on MRI, Since then I have been out
of work since october
of 2010 and considered disabled I am a nurse with a cardiac background. Now
that I have genetics to blame my entire family will be tested including my
2 year old who has a murmur at this time and gets an echo yearly. But
I believe
that the drugs work and that if we as patient take them as we should along
with a little restrictions (fluid/sodium) that we can all discount the
statistics.
I have found a lot of help with cooking meals myself and using more herbs and
spices rather than salt products that are salt free with a pinch of salt is
great. metalozone is great with lasix but everyone should consult their
physicians before
taking any meds • I'm a 49 y/o male who was diagnosed with
idiopathic cardiomyopathy 16 months ago. My ef was 10% and I was admitted
to the hosp. once with CHF. With the use of medication i.e.; Coreg,
Norvasc, Lasix and life style changes i.e.; reduction of alcohol and
tobacco,
I now have an ef of almost 60%! I also exercise more and try to watch
my diet. I won't say these results are typical for everyone, but I
do believe lifestyle changes are essential. • hey guys I am 27 years old female diagnosed
with IDC genetic positive, i had a EF of 28% and after and ablation for
30% pvc's my EF went up to 40% after
7 months since I was diagnosed to be genetic positive and my mom died of SCD
then
i will be getting a pacemaker and AICD. • Firstly, Thank you very much to the person
who started this blog. I am a 28yr old male and was diagnosed 5 month
ago (Nov, 2010) I'm on carvedilol, bisoprolol, and spironolactone.
(10mg, 10mg, and 25mg respectively) My ef was 15% at diagnosis and recently
still at 15% a month ago. I am currently in the midst of further testing
to determine if I will be put on the transplant list. I am determined
that I can better my situation through diet, exercise and rest. Some
days are better than others. From time to time I find myself getting
upset, angry and scared but it's places like this where I can read
of
other peoples good results that give me hope that I will indeed better
my health. I wish everyone all the best and hope some day they will
find a way to permanently reverse the
effects of DCM. Cheers, • diagnosed at 20 with moderate IDCM with
an ef of 35%. Its been a year and a half and I'm still trying to cope
with it. You would think after a while
you would get over it but its not that easy. Thanks to meds, positive support
and light exercise I have been able to cope. I know i will one day require
a transplant or some major surgery but a positive attitude takes you
a long way.
to date my ef is 50% • Hi my name is TIM, i was diagnosed many
years ago with this Cardiomyopathy. i had always believed that it was
normal to have to bend over and use my arms and hands to rest on my
knees and gasping for air and feeling like my heart was going to fly
out of
my chest. I am on many meds but i still feel the same and i can tell
I'm going down hill fast. I have 2 boys that i love dearly and want
only the best for them and a new wife that i love with all my heart but
i
feel as if my life is draining from my body and feel like theirs very
little time left for me, its ok i have had a great life and i wouldn't
change a thing but i hate the thought of putting my loved ones through
the pain because of my death. I guess it cant be avoided but i just
hope god sees fit to let the loss of me not way so hard on them and just
try
to move on and remember the good times we shared while i was here.
Just want timmy (JR) and Travis know how dearly i love you both,and to
my
wife, i feel so LUCKY to have you in my life and will miss you dearly,
(I'm a lucky, lucky man.(THANKS GOD) • I am a 47 yr old female diagnosed with cardiomyopathy
after second child 16 years ago. Diagnosed with irregular heartbeat during
first pregnancy, progressed
into cardiomyopathy. EF was 28 at one point. For past 9 years heart was great,
almost back to normal. Probably caused by anorexia, then two pregnancies -
too much for heart to handle. All has been great until white blood cell
count came
in too low. Not sure what that is about. Cardiomyopathy can't be cured but
it can be maintained! kfibkins@yahoo.com feel free to give my email to others. • I totally understand that this is not an "ask
the doc" type forum, just seemed odd that more posters do not respond to
what others have said... that was the point I was trying to make :) My
Cardio is very happy my EF is up to 50 and he actually referred to it as "having" a
cardiomyopathy...my heart size is also down to a normal 5.6 I know I
should be incredibly relieved and thankful, but I am always doubtful
about things
coming
crashing back down.... • Sharyn -- First of all, the fact that your
EF is up to 50 is great news. As for your questions, these Forums are not
"ask the doctor" Q&A's, but places where patients can share
their
experiences,
information,
etc. From time-to-time a Forum editor or moderator may chime in with
a specific piece of information or reference to a study but, as we state
in
several
places, nothing here should be viewed as a substitute for medical advice
from a healthcare
professional.
That being said, hopefully some readers will help you out here with their
stories. By the way, what has your cardiologist said about your increased
EF? • Why am I not seeing any responses to these messages? It seems odd to me
and I am wondering if I am "missing" something here? I was diagnosed in 2008
with DCM and an EF of 20.... on all the regular drugs since then but have stopped
digoxin and lasix over a year ago because my EF is up to 50 by MUGA Scan...I
want to know what are the chances that my EF will remain good and not do a back
slide? Can it remain stable for the rest of a normal life span? • Hi, I am 45 and have suffered from Atrial Fibrillation
for a long time. I have just been diagnosed with Cardiomyopathy and have
to have a ICD. I have two children and am scared. I have read that other
moms are in the same situation. Please email me and maybe we can help
each other. Very scared and not sure how to function knowing the mortality
rate
and how to help my children and husband. [Editor's note: we don't post
patients' email addresses in order to protect their privacy. However, replies
to this post will be put up and the poster will be notified.] • Back to Cardiologist 2 weeks ago. In spite of
feeling really good my echo showed only an increase of my EF of 10, was
10 is now 20. He recommended a biventricular pacemaker with automatic implanted
cardioverter defibrillator. Bummed out but considering and still feeling
fine, (if puzzled). • Danny G -- We try to keep communications between
users of these Forums as public as possible -- only because information
exchanged may be helpful to others. We also don't post email addresses
to protect users from Spambots that collect these off web pages. However,
if Bill K or anyone wishes to communicate privately with you, they
can post here, and we'll relay the request privately -- as we have done
to Bill K. • Bill K from Ohio -- how can someone email
you? I am exactly what you described. I am looking for emails from
anyone who has lived 10 years with dilated cardiomyopathy • I am a 53 year old woman who was diagnosed
with idiopathic Cardiomyopathy in 2004. My EF was 15% for 9 months
after that, I was scared that it would never
go back up! I felt okay, tired easily but was able to get out and around. Hated
being on coumadin! Against my cardiologist's advice, I did start CoQ 10, and
after a few trials of on it, off it, I DO feel better on it. I stopped
work for almost
a year, then went back part time as my EF rose SLOOOOWLY. At 6 years post diagnosis
I am back to work full time (took me 1.5 years to do that), my EF is 48%. I
don't do anything really exertional, I can do light gardening, occasional
lifting,
cooking, most housework,shopping and horseback riding, etc. I still drink wine
occasionally, but do restrict how much and how frequently. I take 100 mgs of
Toprol XL 2X a day, and 10 mgs of lisinopril 2X a day. I like the long acting
Toprol/metoprolol (XL) much better. When I get a cold my heart can get a little
funky, I hear cardiac muscle doesn't like histamines! I use a neti pot and
it seems to really help to prevent colds and lessen their symptoms if
you do get
one. I also take anti-oxidants and vitamin D3 and get flu vaccines.Good nutrition
helps. • I have a friend 36 yrs of age that tells
me that his heart is only working at 15% capacity. They say he is a
deadman walking. I guess it's congestive heart failure. I am scared for
him,
but would like to understand more. What is the death rate with this
prognosis. He cannot seem to find anyone that will help him and they
send him away
with a survival timeline of 6 months to a year. Is there anything that
can be done to regain what he's lost? Really worried, he is my best
friend. Please Help. • I'm 69, diagnosed with CM 70 days ago during
ER and hospital admission. Arteries good with exception of partial blockage
of Ramus (stent inserted). Short
of breath, couldn't lie on back, sick "cardiac" cough, depression, panic etc.
EF of 10% at the time. Cardiologist initially put me on Carvedilol, lasix, spironolactone,
aspirin, simvastatin and this week, added diovan. Carvedilol started at 6.25
twice a day, now up to 25mg twice a day. Carvedilol knocked me down pretty good
in the beginning but I guess I adapted to it and no adverse effects now. Feeling
GREAT now ! Energy almost back up to "normal". Likely due for echo soon and
will be interested in EF. If I felt a 1.5 of 10 at the outset, I'm a 9.0 now.
Surprised
and pleased. • I am 46 and had an EF of 10% at 44 years
old. Responded to medications and had EF of 51% by Muga scan. Now,
2.5 years later and still on meds, my EF is 34%. I am pretty scared and
worried.
Anyone else that can comment on this? Thanks. My cardiologist wants
me to get a CRT. I wonder why I got worse, will I get better without
CRT.
My left bundle branch block is also back. Thank god for Coreg or I
would be dead already, I take 100 milligrams daily again, was only taking
about
25 mgs a day and wonder if that's why I got worse. Any thoughts? • I am 34yrs women living with a dilated cardiomyopathy at first said to
be idiopathic until further testing that shows my LVBB had not developed so the
electrical blockage was the beginning of a domino effect leading to end stage
heart failure. I am on the highest dosages of all my meds 2yrs. I have not shown
any change -- my energy levels vary I am tired and feel weak most of the time.
I have problems with my legs terrible bruising and burst veins if I stand for
any length of time. I have 4 children and am having all of them tested I look
for any warnings of heart related symptoms because until the doc asked me a list
of questions I had no clue that it wasn't normal to feel as I always have. I
was a very athletic person: swimming was my sport, basketball I excelled at most
of the sports I played but I had to breathe differently than everyone. I had
many scary moments as a child even to this day but breathing exercises are a
must
if
you are like me and lose your breath walking & talking. I am so depressed angry
just an emotional nightmare I know my body very well and I am feeling myself
worsen. I wish I could stop feeling like this I am scared for my loved ones.
How
can I help them be ok??? • I checked with my cardiologist regarding
CoQ10. He said there is no scientific evidence to support that it helps
with the DCM and therefore does no suggest that his patients take it.
However, he said that some of his patients take it and report feeling
better. He said there is no evidence that it does any harm and if the
patient believes it is helping he does not see any reason it should
not be taken. As I said before you should always check with your personal
MD before taking any supplements. Also had a good report from my doc!!!
The meds appear to be working and EF is now between 30-40%. He says
my
target is 50% so hoping the progress continues. Much less edema and
a bit more energy now. Yahoo!! • To everyone wondering why they have this.
It is possible that it is just a genetic thing we have and they will
never be able to give us an exact answer
as to why we got this condition. This is not what we want to hear. Most of
us want a cause and a fix. I know I did when I got the diagnosis. With
this condition
we hope to stabilize it. The damage already caused will not resolve since it
is the heart muscle itself that is affected. But as I said in another post,
80% of us will respond and stabilize on meds. That is very good odds
in the medical
world. • To Sandy 12 --
As a nurse who works in research, I would advise you to always check
with your MD before adding
any over the counter supplements. Although
they
are labeled as "all natural", etc, some can have significant interactions with
RX meds. Years ago I had a very bad reaction to a natural OTC diet aid that everyone
else in my office was taking and raving about. I did not know that it was the "natural" version
of ephedrine and should not take it if you are prone to having a low blood sugar.
While this may not be the case with the ones you are taking, it is always a good
idea to have the MD check OTC PDR before you take them. Good luck. • Has anyone with Dialated Cardiomyopethy
also been diagnosed with Multiple Sclerosis on here? If so email me at
walshfarm@hotmail.com please I need your
help! • I am a 53 year old female who has been
diagnosed with DCM in the past month after going to the MD for swelling
in my feet. As no cause was identified, we are treating with Diavan,
Coreg, Lasix, and Aldactone. EF was <25%. As my cardiologist explained,
80% of patients will improve on meds, 10% will remain unchanged, and
10% will worsen. I am hoping to be in the 80% group. Good luck to us
all. • i am 54 yr female with idiopathic cardiomyopathy
and i have asked for a prognosis only once. they didn't know why i
have this and they don't know for
how long. my meds are lisinopril and carvedilol. also have had thyroid problems
for 30 years. it's scary and i'm grateful for meds as I can now walk and talk
but i don't know what else is going to happen. • I am a 53 old white male diagnosed with
idiopathic dilated cardiomyopathy in March 2010. EF was 22%. I am on
all the regular meds with no signs of improvement after 2 months and
another eco. 6 days ago I decided to add 100mg of ubiquinone (co q10)
1000mg l-carnitine 2 times per day. I have not been back to my cardiologist
yet. That will be next week and I will probably get chewed out, but
I can tell you that I feel so much more energetic after starting the
co
q10 and l-carnitine that I don't care. I will continue taking even
if he tells me not to. Good luck
to all. • I'm 33 and was recently diagnosed with DCM
It was found during a routine echocardiogram which showed an EJ of 40%
and a dilated left ventricle. I was
put on Benicar for bp. Six month later my EJ improved to 50%. I work out rigorously
5 times a week and never felt symptoms. I am confused why I would have this.
I guess it could be worse. Cardiologist said it could be from working out.
Confused by that statement. He said I don't have to worry about my myocardium
being stretched
or thinned. Still confused by this. Help • Just a few days ago I found out I have
a dilated left ventricle with an EF slightly less 40%. I was told it
could have been caused by a virus or ischemic event(s). I'm still going
through a Rule Out causes process and return to my Cardiologist in
a few days. Are there any specific questions I should ask my Cardiologist?
I'm a 42 year old male in great shape and no significant history of
medical
issues. I ran a marathon a few years back, swim team for 7 years and
I've never had high BP and my lab work within limits. I'm really confused
but
more so in denial. Thanks for any suggestions you can give. Markanthonyhamm@aol.com • I am only 13 yrs old, and am about to have
open heart surgery. I have aortic valve regurgitation which has kinda
caused dilated cardiomyopathy. at
least i think that's how it works its really confusing. I have already had
2 surgeries to treat ventricular septal defect. can someone tell me what
my chances
are?? the doctor hasn't said much and I'm a bit scared to ask. please i wanna
know.
thanx
:) • I was 26 when I was diagnosed with chf
and primary dilated cardiomyopathy, in march of 2006. My ef was 10%.
I've been on every medication under the sun for this. They can't up
it or change anything because then my blood pressure drops down to heart
failure rates. I have the icd put in in jan of 2008 when my ef dropped
from 40% to 25-30% in 6 months. I've been through hell and back with
this. But I have a will to live and fight this for my son. • Diagnosed on December 1st 2008 with EF of
15. Since that time have followed advice of my cardiologist regarding
diet and exercise. Take carvedilol, lisinopril
and digoxin. Supplements of CoQ10, Fish Oil, and low dose aspirin daily. Have
progressed from thought of needing a transplant to normal. Just have to keep
watch of what I eat and exercise. Having a positive outlook and saying a few
helps out a lot. Keep positive and watch the sodium intake..... Have been able
to shock both my doctors with the progress that I have made. Just don't give
up. Miracles can happen! d(^-^)b • I was diagnosed with dilated cardiomyopathy
2 months ago. I am 47 and a mother of 4. I am on lisinopril 5mg once
a day, coreg 6.25 twice a day, aspirin, and meds for hypothyroidism,
which I've had since I was 11. Not sure why exactly I got this, but,
suspect due to my thyroid disease and being on too much of one of those
meds that was added 1.5 years ago. I think it damaged my heart. But,
I also had flu really bad in spring for several weeks, and LOTS OF STRESS
FOR 6 MONTHS PRIOR. Right now I suffer with A LOT of back pain. It seems
to get better if I take more Coreg and lay down. Back pain and left arm
pain were my presenting symptoms. My husband is an internist and sats
that with the treatment
with ace inhibitors & beta blockers life expectancy is way longer than previously.
My cardiologist said to reduce my cholesterol or I could have some problems in
10 - 15 years, so I take that as a POSITIVE! He said I have no activity restrictions
so I am going to exercise A LOT. I think thinking positive, praying, and giving
to others is important. Live like you have only a little time, but, expect to
live a long time! Get rid of resentments & love
everybody! • My dad was diagnosed at 50 years old in
2003 with DCM and was a triathlete before this. He took it easy for a
few years and just competed in his first triathlon
since the diagnosis last month (Oct 09). He still trains but feels a bit tired
after lots of training. I tell him it's his age!... he's now 56. He has his
echo in March 2010 and I hope that his heart hasn't enlarged since his
last check-up
over a year ago. It's important to take each day as it comes and not let it
be the main focus in your life. It will be interesting to see what his
EF is. • To Lorena: I read your story and I am surprised
that we share so much. I too have RA and was treated with ENBREL. My
life has not been the same since. First was atrial fib, then endometrial
precancer, congestive heart failure, atrial fib, lymphoma, then cardiogenic
shock due to adriamycin. I have been dx with dilated cardiomyopathy due
to the chemo. I had chemo from 10/08-3/09. Adriamycin discontinued after
my EF went from 55% to 40% after 3 round. I went into cardiogenic shock
the DAY AFTER I got my good PET scan results and had to have a interaortic
balloon pump put in and then had to have a pacemaker/defib put in later
that week. I also had pericardial effusion 2 weeks later when one of
the wires poked through my heart muscle. I would love to discuss further
with you. • I'm a 40 y/o female and I was dx with Dilated
Cardiomyopathy and CHF last month. They said it was probably caused by
a virus. I have 2 daughters 11 and
8 and it takes all I have to take care of them. My EF was 15% when I was dx.
This is all new to me and I am very scared. I'm on lots of meds and I do what
the dr's say but I still feel tired all the time. I'm just trying to get some
facts about this but every website I pull up is very negative on the prognosis.
Does anyone have any encouraging websites? And I am having trouble finding
information on a low sodium diet. • I was diagnosed last March 2009 and my
EF was 15%. I started meds and at some point EF was 30% in July. Last
week was back to 15%. I am not feeling well but doctors said just to
wait and keep taking coreq 12.5 twice a day because when we tried 18
was too much for me. Please give me some advice, hope, information.
I am 40 yrs old recently married and planting to become a father next
year.
I
feel strong but sad... • I am an RN who's husband was recently dx'd
with dilated cardiomyopathy. He has been on CoQ10 since 1990 for dental
issues. Now that he is 63 and just
rec'd this dx, he has been depressed but . . .I've told him that he has been
walking 4 miles a day and asked him how he felt. He said he feels great so
I told him to quit worrying about it. That is with an EF of 16. ALL of
his MDs
have commented on the fact that he has been taking 100 mg 3 x a day of the
CoQ10. He will continue on it. It is protective of the kidneys and useful
for dialysis
pts too. We are going to take it one day at a time and he will take his Coreg
and Lasix as ordered. I am convinced of the positive benefit of CoEnzymeQ10
in the treatment of cardiomyopathy. He went from 16% to 20% in a week
after diuresing
with Lasix (2 gallons of fluid lost). Now we wait for the heart cath and further
ECHOs. My personal opinion is that CoQ10 can't hurt and there's lots of evidence
that it helps. I prefer the TwinLab brand from Swanson Vitamins as it was used
in the original tests at Wilford Hall in San Antonio that I read initially. • Long term idiopathic dilated Dilated Cardiomyopathy
survivor. Originally diagnosed in 1998 with EF of 25%. Second opinion
diagnosis was 35%. I went to a CM specialist at the Cleveland Clinic
who put me on a regimen of several drugs with the most prominent being
a 100MG of Coreg/day. That's right, a 100MG which was pretty controversial
in 1998. Fast forward to today. EF is 65% with normal heart size and
wall thickness. No restrictions but still take BP medication and 50MG
of Beta blockers per day.. I am a happy 60 year old with a very active
life style. I thank God every day for having a great doctor and being
one of the lucky
ones. • my husband is 33yrs old.his dialated cardiomiopathy
was diagnosed in 2001. an ICD is implanted but now his E.F is 18%.he
ia on good medication but health
is going down day by day.plz pray for him. • Diagnosed with dcm in 2007 on lisinopri,bisopolorol,furesmide,statins
and amlodipine, also have left bundle branch block and mild heart failure.
Always tired, very short of breath and low at moment my ef is now 60%.
Any tips on dealing with everyday life and trying to stay positive. I
am 40 and my cardiologist says
that 5 years prognosis is rubbish. • My father was dianosed with a form of viral
cardiomyopathy 3 years ago and is not doing very well to date. he is
going down hill very fast i think, if anyone could give me any advice
on whats going to happend or how long he might have because he doesnt
like to talk about it, anythin would be greatly appreciated!!! • Well let's see. I am a 31 year old female
who was diagnosed with dilated cardiomyopathy after the birth of my 2nd
child on August 31, 1999 right after I turned 22. I have been on strong
doses of Coreg, Enalapril, Furosemide, Digitek and Sprironolactone since
the very beginning. I found out that I have diabetes as well. First off
let me say that having a strong mind is very important when receiving
news like this. I am in my 9th year of the disease and I have to say
I feel great. The beginning was a bit rough but once I got into the mind
frame
of "I have a disease, it doesn't have me", I started to feel better. You must
not let it get you down and enjoy every day that you get to continue to live.
When you allow this condition to get into your head, that is when you start to
go down hill. So my advice to you all is to keep your head up, keep a positive
attitude and a positive outlook and you will defy all of the odds. My EF when
I was diagnosed was 21%. Now it is 48%. I have setbacks every now and then but
I never let them get the best of me. I always say..."I may not feel good today
but tomorrow will be better".
I have to say that it always is. • I do not know what to do or think I am so confused.
I am a firefighter & paramedic.
During fire academy in 2000 I noticed when I would run or do our circuit drills
my heart would feel sluggish, like it could not give me what I needed. ( I ignored
it--we are worst patients-firefighters are healthy, right!!) Them a stress test
for fire-medic-the cardiologist told me I needed a cardiac cath-I told him he
was crazy. I was 34 y/o. Anyway I ignored many signs, symptoms. Well at 36 y/o
on July 18 I went into respiratory arrest then cardiac arrest, woke in er on
ventilator. #@ days later I was extubated and learned I have heart failure and
cardiomyopathy(viral, probably). The nurse was so cold-told me the diagnosis
as she walked out door backwards!! UCH tampa ICU, My ef is 40%. The md cardiology
says this is forever--and will get worse--my primary says it will go away because
I'm young!!I don't know what to believe no health ins, no job now,cant work as
fire-medic at this time or never again So I ve been told--i get so out of breath,
dizzy, passing out, exhausted. My bill is 150,000 now--what to do--Im scared--I
don't want to die in 5 years I have children or a heart transplant!! I eat very
little, my children have to stay with their dad because I cant afford to feed
them!!!-DO YOU KNOW WHAT A HORRIBLE MOTHER I FEEL LIKE!! my email is taliduke@yahoo.com,
please send info on these conditions--i feel I'm not getting far. I also have
pharyngeal spasm, and pneumonia--my belly swells then my hands and feet--very
uncomfortable. I can gain up to 5-7 lbs in ONE day!!! Thank G-d I'm alive. • I've have Dilated Cardiomyopathy for over 15
years and doing very well. I also had an ICD implanted 15 years ago.
To answer your question ... if you want to be the odds of the 70%-75% death
rate within the first 5 years, you MUST get acutely involved with your
own health! There are many supplements you can take to help increase
your
EF rate , your energy level along with decreasing any VF or abnormal
heart rhythms. For starters do a google search for: Hawthorn Berry, Taurine,
CoQ10, antioxidants and Germanium, Magnesium. I have no financial interest
in the following news letters and highly recommend them: www.natutalnews.com,
www.hsibaltimore.com and www.douglassreport.com. If you have questions
about
IOCD's, go to my web site at: www.DefibrillatorAnswers.com. • WHAT DOES IT MEAN EJECTION FRACTION 82% • I am 46 year old male and have been diagnosed
with dilated cardiomyopathy due to inherited familial reasons. My EF was
37% on diagnosis and I was
not able to be prescribed beta blockers due to having asthma, so I was
only prescribed ACE inhibitors. But after a year of being on ACE inhibitors,
my EF is now 50%
What are the prospects for my life span? • I'm very happy to have stumbled across
this site and hope it's still active. I'm 47 yrs old I've been
struggling through the medical system for more than 2 yrs, at which
time I started
becoming short of breath and unable to complete my regular workout.
The shortness of breath continued to worsen and eventually I was
referred to a cardiologist who dismissed an EF of 43% and decided I
had some
other
cardiac abnormality. After not being able to prove this abnormality
he basically sent me back to my family doc who luckily is terrific
and I
now have another cardiologist. I'm on lasix and coversyl. I also
have rheumatoid arthritis so between that and the continuing fatigue
and
shortness of breath I've not been able to work in two years. I
have a (l) ventricular
dilated cardiomyopathy. We are speculating that it could be a
late effect of a cancer chemo drug (adriamycin) I took in 1995. Is anyone
else experiencing
cardiomyopathy from this cause. • i am 23 years old and have been diagnosed
with dilated cardiomyopathy due to viral illness and also have an ICD,
i hope everyone can recover on medication
and i wish everyone the best of luck, i have found a friendly community at www.cardiomyopathy.org. There
is a message board for people and friends with this problem. my question is,
my EF is 22 and appeared to be 15 on the last echo before i left, the 15
avg. was them verbally guessing the estimate while doing the echo. • HEllo: I have a diagnosis of dilated cardiomyopathy
with EF of 20%. Doctor saying I need implanted ICD. Not sure I like
the idea. What is the operation like and does it mean my life will be
cut
shorter? Do others think it would be
a good thing? Thanks. • my son was diagnosed with dilated cardiomyopathy
in 2001. He is also on the highest dose of coreg, lanoxin, zestril, lasix,
spiralactone, and a host
of other medications. His EF now is 50%. He has since been diagnosed with diabetes
and plantar fasciitis (as his feet hurt all the time). My question is does
heart failure get better and then all of a sudden get worse? Will he
ever be able to
come off the medications? How long can you live with this disease? I was told
he will need a new heart by the time he is 40 and he is 32 now and is this
true? Please email me and let me know some of you that have experienced
this. My son's
father died of the same thing when his father was 25 years old. • I am 55 years old and was diagnosed with
Idiopathic Dilated Cardiomyopathy in May of this year. I am currently
on Carvedilol, Perindopril, Lasix, Amiodarone and Warfarin. I entered
hospital with atrial fibrillation and an EF of 10-15%. After medication
I am up to 25-30%My shortness of breath has abated but I have no energy
and tired with the least exertion. I have read so many Mortality stats
I don't know which to believe. My doctor says he just doesn't know
how it will
play out. • I am a 53 year old professional. dxed 1
year ago during insurance PE, EF= 19%. Was in bigimini. Had ICD put
in, on correg and altace, Lot better, EF about 60%. Have beem back at
work
full time for 11 months. Doing well, but boy, at end of day I am tired.
My wife is told I am doing well and doesn't understand, if I'm doing
so well, why I don't get up and do some things in the yard like I used
to. No win deal. • Hello! I have a 3 1/2 year old daughter
who was diagnosed with Dilated Cardiomyopathy in January 2006. She has
her tonsils taken out on Dec 29/05 and the doctor discovered an irregular
heartbeat. A stress test was done and it was discovered her septum has
a major defect causing loss of blood flow. Her ejection factor is somewhere
between 28-33. Her doctors say this is unusual and one doctor said he
has never seen this before. Do any of you have information on young children
having this disease? What is the expected life for a child with this?
She is now on medication for her heart and blood pressure. She is not
showing any symptoms. Any information or story you can provide would
be helpful. Thanks! • My mother died at age 54 of cardiomyopathy.
I am 53 and was diagnosed 8 months ago. I am in early stages. I am on
Coreg and my EF has increased about 5 pts. Does anyone else have shortness
of breath on this drug? Do you have double vision? I have other neurological
problems (familial) that may have caused my cardiomyopathy. This problem
runs in my mother's family. I am a college professor and I had to quit
work this semester because of my fatigue and depression. I also have
fibromyalgia. • I was diagnosed in April 2004 with Idiopathic
Dilated Cardiomyopathy with an EF of 19%. I was treated by my local cardiologist
as well as the clinic at St. Vincents Hospital heart/lung unit (Victor
Chang Unit). I was prescribed Carvedilol, Tritace, Lasix, Aldactone,
Asprin, Digoxin, and Progout(to control the Uric Acid) for the condition.
My ejection fraction improved from 19% to 67% over the period April to
March 2005, this has reduced to 50% since May 2005 and remains stable.
I have subsequently returned to work. I am 51 years of age. The learned
medical professionals believe I had a predisposition to the disease given
my father(deceased 1963) and both siblings suffer from a form of the
disease, the trigger in my case is unknown. A rehabilitation program
run by the local hospital was of enormous benefit in raising fitness
levels (safely) and adjusting to life with a poorly functioning enlarged
heart. As for the stats on death rates - they bear no relation to how
you deal with your illness. AVOID BECOMING ONE! Take control of managing
your health, seek to do the best you can in those things you can control,
ie, diet, (safe) exercise, positive activities,the advice you receive
from all your health professionals - and let the statistics take care
of themselves • Forget "70% dead in 5 years"--For a technical
discussion of prognosis and survival of people diagnosed with various
kinds of cardiomyopathies, see: UNDERLYING CAUSES AND LONG-TERM SURVIVAL
IN PATIENTS WITH INITIALLY UNEXPLAINED CARDIOMYOPATHY. Felker GM, Thompson
RT, et.al. New England Journal of Medicine:2000. Vol. 332 (15) pages
1077-1084. Figure 1 on page 1081 uses survival curves to graphically
display relative survival rates of different diagnoses. These analyses
were done using patient data from 1982-1997, so these patients were not
getting some of the very advanced therapies now available. Idiopathic
cardiomyopathy, which includes viral cardiomyopathies, has a curve that
levels out at about ten years with about 57% surviving more than 13-14
years--the cut-off point for this particular dataset. Please see a qualified
specialist who can help you live with this disease as comfortably as
possible. As demonstrated by people posting to this chat, it is possible
to improve your functional status and overall health with good medical
care and good self-care. • I was diagnosed with dilated cardiomyopathy
in Feb/2005 with an EF of 15%. I am a 46-year-old female. The doctors
believe this condition is a result of Novantrone, a chemotherapy drug
I took from 08/2002 - 04/2004 to try and slow down the progression of
my Multiple Sclerosis. I started on some medications: Lisinopril, Digoxin,
Coreg, and Lasix. I haved limited mobility, but try to exercise and watch
my diet. Yesterday another echo showed I still have an EF of 15%. My
neurologist believes over time my EF should improve. My cardiologist
believes if it was going to improve from being off the chemo drug, it
would have already improved. The cardologist is recommending that I get
an ICD. The prognosis for this condition are not very encouraging ( mortality
rate - 5 years?). Are these numbers reliable when you consider my age?
I have three children, ages 12, 9 and 7. Are there other options available?
Is there more things I should be doing? I want to do everything possible
to see my kids grown. • I am 54 year woman diagnosed 11/2 years
ago with cardiomophathy. My ejection factor was 20% at diagnosis and
has improved to 27% in the last year and a half. I am taking co-reg,
digitek, & altace. What is my prognosis? I have read so many conflicting
reports that I am confused. I just want an honest report as to life expectency. • I currently celebrated my 43 birthday and
have been diagnosed with Congestive Heart Failure and Idiopathic Dilated
Cardiomyopathy in November 2002 with an enjection fraction of 15%. The
Doctors were wonderful, they didn't know what the causes were, they gave
me a 25% chance of getting better or worse and a 50% chance of staying
the same. Six Months of monthly doctors appointments, and a second Echocardiogram
I was up to 35% on the enjection fraction, Last December 2004 I had another
test completed it was at 37%. I am on four drugs, Digoxin, Lasik, Metropol,
Lotensin. They say it may have been a virus, they also say that I have
to be patient and continue to exercise, sleep eat right and take the
drugs. I have added vitamins (one a day) and CoQ10. As to longevity,
I try not to think about it, it's depressing. But am going to believe
that as long as the symptoms don't manafest themselves it's another day
and that's a good ting • I am 56 yr old female dx with IDC in March
2005 poss cause adriamycin for tx of Hodgkins.E fract 20-25% taking lasix,altace,synthroid,and
toprol-xl,watching NA intake and fluid restriction.in 5 months E fract
improved to 30-45%.Due to b/p meds tired and very low stamina.I have
been trying to increase by walking daily. Was scheduled for defib/pacemaker
but due to improvement was put on hold.Problem:phy wants me to return
to work full time as nurse in large hosp. I am very scared I will die
because of the phy work and strain. I was having great difficulty trying
to do my job. I feel alot better and am breathing so much better. Now
that I am up to 30-45% what are my chances of having sudden death due
to arrythemias. I am considered class 3 almost a 2. Help? • I have a very dear friend that has just
been diagnosed with viral cardiomopathy he is 54 years old. was feeling
well until about 3 months ago. his ef today was 25. I work in the medical
field but his own doctor has not been honest with him about what he has.
I have seen his reports because I work for his internist, who happens
to be very much into natural medicine. His cardiologist has not told
him the consequences of his disease • I was 38 when diagnosed with Dilated Cardiomyopathy.
I am now 45 female. I had an EF of about 33%. I am now at EF 55%. I was
told by cardiologist that he had a pt that was good for 10 yrs & then the
condition came back. He said 33% get better 33% get worse 33% stay the
same. By the way I outlived my cardiologist. He died of a sudden heart
attack. I take lopressor 50mg/2x day.cozaar, kdur, lanoxin,lasix, & ambien
5mg at nite.they think virus or childbirth could have brought it on. Never
any clear answers. Its a wait & see condition. I was told yrs ago if my
condition didn't improve heart trans.or possible pacemaker. • I was just diagnosed with dilated cardiomyopathy
with an EF of 40%. I turned 43 yesterday and am the mother of a 3 year
old. I was told today from a doctor friend that his cardiomopathy patient
went from a EF of 20% and being non-mobile to 35%just from taking CoQ10.
He said the dose can vary from 30-100mg per day. His patient feels good
now. I am going to ask my doctor about it this week, because he believes
in alternative treatments. • My 36-year-old brother has chf and cardiomyopathy.
He is also on coreg and a host of other medications. He really has problems
with the fluids. He is now in atrial fib. They tried to do a carioversion
on him yesterday with no success. They plan to take him back again next
mondaY to try it again. Is there anyone out there who has gone through
this and has found a successful method to keeping off the fluids and getting
back into sinus rhythm? Please write. Some people have been telling us
to try the co-q10. They say it works wonders? Can anyone tell us about
this from personal experience? we are desperate and need help. Thanks • Hello, I am also a heart patient, 36 years old
with similar problems. For a more detailed look at my condition go to www.healthyheartmarket.com.
I am on a medication called Coreg that seems to be improving my condition.
My EF 3 years ago was 10, now it is up to 27. My doctors believe that with
the introduction of Coreg, and taking good care of myself, i.e. exercise
and low sodium diet (see my website) I can beat the statistics. These mortality
statistics seem to be changing day by day. Feel free to contact me for
more info and other resources. • What is the prognosis for a patient with
Idiopathic Dilated Cardiomyopathy? |
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