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Current Postings on This Page (21):
• 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.
Lorena McManus, Winnipeg, Manitoba, Canada, January 11, 2008
• 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.
Ryan, England, United Kingdom, December 23, 2007
• 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.
Lynn M., Florida, USA, October 25, 2007
• 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.
Linda D., Georgia, USA, October 7, 2007
• 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.
John F., Nova Scotia, Canada, July 24, 2007
• 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.
R.G., April 24, 2006
• 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!
Charlene Frizzell, Moncton, New Brunswick, Canada, February 22, 2006
• 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.
Jan, Muncie, IN, October 23, 2005
• 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
P. J. Travers, Patient, Sydney, Australia, October 18, 2005
• 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.
SEC, Bandon, Oregon, October 02, 2005
• 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.
Cheri Wolfe, Birmingham, Alabama, September 21, 2005
• 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.
Sharon Bonnette, Navarre, FL, United States, September 17, 2005
• 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
Melissa Strandberg, Patient, Highlands Ranch, Colorado, September 09,
2005
• 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?
Betty Martin, Smithville,Tn, August 10, 2005
• 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
Pearl Stafford, Naples, Florida, January 12, 2005
• 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.
Angela, Long Island, New York, 09 Dec 2003
• 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.
Lori, Chicago, Illinois, USA, 20 Jan 2002
• 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
Sammi, Denver, Colorado, USA, February 9, 2000
• I also have dilated cardiomyopathy, and a number of other diseases. I
am recommending that you visit and join our family of CHFer's at Jon's Place.
Jon has over 200 pages with explanations of symptoms, helpful information, and
a forum that will help you get through this very tough disease. Most of us get
depressed, and are always trying to figure the questions that you are asking.
Even the doctors don't always know just how long we may live. But keep a positive
attitude Charles. Check it out at http://www.geocities.com/Heartland/Hills/2571/jonsplace.htm.
Tell em Doug sent ya! Good luck.
Doug Knuth, Michigan, USA, March 27, 1999
• 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.
Pete E., Healthy Heart Market, Minnesota, USA, December 13, 1998
• What is the prognosis for a patient with
Idiopathic Dilated Cardiomyopathy?
THE PATIENT: 48 year old white male, 6' tall, weighs 195lbs and lives in Dallas,
Texas
THE MEDICAL HISTORY/CONDITION: Idiopathic Dilated Cardiomyopathy (Dr. suspects
viral caused) which was originally diagnosed in Feb 95 with 40% Ejection Fraction.
Was also diagnosed as having Crohn's Disease at same time. Diagnosis made a
Mayo Clinic in Rochester, MN. Prescribed 10 mg Lisinopril and a Beta Blocker
(I have forgotten dosage).
June 95: Echocardiogram shows EJ at 55%. Local Doctor takes me off of all medicines.
October 95: Sudden Death episode in restaurant. Was dead 15-20 minutes with
CPR performed by nurses who were also in restaurant. Before leaving hospital
an ICD was implanted and testing showed an EF of 35%. Prescribed 10mg of Zestril
(Lisinopril).
June 96: EF 45%
Sept. 96: Sudden Death aborted by ICD
Nov 96: Holter monitor reports 1,000+ PVC's and 3 brief episodes of V-Tach.
March 97: Atrial Fibrillation for 60+ hours leading into Ventricular Fibrillation
aborted by ICD.
January 98: Scheduled stress echo test.
THE QUESTIONS: While I am typically a very positive person, I find myself in
need of information which will allow me the opportunity to carefully weigh
all of the relevant information about my illness. These questions, therefore,
purposely exclude the possibilities of a heart transplant or other new surgery
techniques that seem to offer a greater chance of extending life.
(1) Fairly extensive Internet and library research in Dilated Cardiomyopathy
reveals studies that indicate that 70-75%+ die within 5 years. What are the
death rates for the next five years and ten years?
(2) My ICD fairly well rules out death by Cardiac Arrest/Ventricular Fibrillation/Sudden
Death. Does this mean that if I fall into the statistical percentage of those
who die that it will be as a result of heart failure?
(3) With the understanding that heart failure can be rather slow or swift in
its failing process, what are the typical problems associated with congestive
heart failure (organ failure, etc…)?
Charles Taylor, patient, Dallas, Texas, USA, December 17, 1997
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