If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you


No announcement yet.

Dilated cardiomyopathy


About the Author


This topic is closed.
  • Filter
  • Time
  • Show
Clear All
new posts

  • Dilated cardiomyopathy

    [Dilated cardiomyopathy]

    Author: Kay (---.yhti.net)

    Date: 11-15-02 15:30

    Here we go again. I wrote in earlier with the history of my family. Some of us have been diagnosed with hypertrophic cardiomyopathy. My nephew, 13, has been diagnosed with dilated cardiomyopathy. Does anyone know the difference between the two? Any responses would be appreciated. Thanks,


    [Re: Dilated cardiomyopathy]

    Author: Sarah B. -Board Moderator (---.client.attbi.com)

    Date: 11-15-02 15:41

    Dear Kay,

    That is a bit odd. I would get a second opinion, honestly. Please call the office next week and get a referral. The info section on this web site talks about the different forms of cardiomyopathy.

    emedicine.com has an article about it. I tried to paste the url in here but my keyboard is messed up. if you go to the main site you cand search for dilated cardiomyopathy.

    But I think a second opinion is the way to go for right now.



    [Re: Dilated cardiomyopathy]

    Author: Kay (---.yhti.net)

    Date: 11-16-02 04:13

    Sarah, we did get a second opinion and it was confirmed. According to my mom's medical records, nine years ago, the doctor kept going back and forth between IHSS and dilated. One doctor said it "looked" like dilated and the other said it "looked" like IHSS. I don't know that they ever pinpointed for sure what she had. Is it possible that she had both? Thanks for the help. I will look up more information on the websites you suggested.


    [Re: Dilated cardiomyopathy]

    Author: Board Moderator (Sarah Beckley (---.client.attbi.com)

    Date: 11-16-02 04:38

    Dear Kay,

    Well, if you have "end stage" HCM, it can look like dilated, so maybe that was the problem.

    I hope your nephew is being seen by a specialist, yes?

    Lisa and I are at the AHA this weekend, but seh'll be back at the office later in the week.



    [Re: Dilated cardiomyopathy]

    Author: Lisa Salberg (167.165.39.---)

    Date: 11-16-02 18:12

    It is very uncommon to see an end stage HCM in a child, but it can happen. I would be very interested to see your family get screened for the genetic mutation that your family, as the family history is so strong... they should be able to find it as long as you are one of the known mutations.

    What are his measurements? What are his symptoms? What treatment options have been offered?

    FYI I did get your fax and will discuss it with some people on Sunday and call you when I know something.

    Best wishes,



    [Re: Dilated cardiomyopathy]

    Author: Kay (---.yhti.net)

    Date: 11-17-02 04:31

    I am in the process of getting copies of all of our measurements to send to you. I don't have any of them at present so it may take me a while to get all the copies from doctors. My other brother had his 5 year old daughter checked on Friday and she does not have the disease. Thank You GOD! Some good news for once. He went to the same doctor that I take my sons. He mentioned doing a genetics screening on my family. I will let you know what happens.

    I'm very confused. They didn't put my nephew who has dilated on any medication and said he had no restrictions. Until speaking to you I thought what he had was less serious than the rest of us. He is seeing a specialist. In fact, the second opinion doctor was Derek's doctor, Dr. Rhee. This is also the doctor you stated was one of the best in St. Louis. As soon as I get off the internet I plan on calling my sister and talk to her about all of this. My doctor, who is not a pediatrics doctor, did mention that dilated was much more serious. This is why I looked into it through you. Ok, my mind is spinning thinking about all of this. Good Luck in Chicago. Thanks for helping me out. You guys are great!


    [Re: Dilated cardiomyopathy]

    Author: Lisa Salberg (167.165.39.---)

    Date: 11-17-02 18:32

    Dr. Rhee stopped by the HCMA booth today...I missed him but Linda spoke to him, I hope to speak to him in the next day or 2.

    Kay...stay strong....we will figure all this out as best we can.



    [Re: Dilated cardiomyopathy]

    Author: Amy Williams (---.proxy.aol.com)

    Date: 11-18-02 06:34


    I work for the Bristish Cardiomyopathy Association. We deal with all of the main forms of cardiomyopathy - including dilated. I have pasted some info from our website for you. You can also visit the site at www.cardiomyopathy.org. We will also send you some info if you email me your address.

    Dilated cardiomyopathy is a very different from HCM and looks very different on an echo. Instead of a thickened muscle, the heart is enlarged and baggy...so it does not pump blood efficiantly. In most cases the cause of DCM is unknown. However in between 20-40% of cases it is genetic - so 1st degree relatives should be screened.

    Something about your posting - you say your nephew is not on medication. The current medical opinion in the UK is that DCM patients should be on a combo of ACE inhibitors and beta-blockers - this can prevent the heart from getting worse. In some cases DCM - if not genetic - can acutally get better, and even go away.

    DCM, like HCM can be very mild or very serious. If your nephew truly has DCM, please make sure he is seeing a DCM specialist.

    Hope this helps,


    From website:

    For many affected individuals, Dilated Cardiomyopathy (DCM) is a condition which will not limit the quality or duration of life. A minority, however, experience significant symptoms and there is sometimes a risk of sudden death. Evaluation by a cardiologist is recommended to confirm the diagnosis and to assess the outlook and particularly the risk of complications.


    Dilated Cardiomyopathy (DCM) causes the heart to become enlarged, and to function poorly.

    As a result the muscle of the heart becomes weak, thin, or floppy and is unable to pump blood efficiently around the body. This causes fluid to build up in the lungs, which therefore become congested, and results in a feeling of breathlessness, this is called left heart failure.

    Often there is also right heart failure, which causes fluid to accumulate in the tissues and organs of the body, usually the legs and ankles, and the liver and abdomen.


    In the majority of cases of DCM the cause is not known. The condition is then termed idiopathic (no cause has been identified) Dilated Cardiomyopathy. There are however, some factors that are accepted to cause disease in individual circumstances.

    Viral Infection

    People encounter many viruses every day and, normally, the body's immune system is very efficient at intercepting these viruses and neutralising them. However, many viruses still cause symptoms to develop (for example colds and coughs in the case of the flu virus).

    Rarely, a virus may affect the heart of a normal person, sometimes causing no symptoms, sometimes causing mild or severe symptoms of the viral infection itself. This is called viral myocarditis and is commonly caused by a group of viruses called 'Coxsackie B viruses' but the majority of people do not have any permanent damage to their heart.

    However, a small proportion of people who develop such a myocarditis can develop DCM, because the virus severely damages the heart during the initial infection, or because the virus triggers the body's own defence system (immune system) to attack and damage the heart (see Auto immune disease below)

    It is thought that some cases of an idiopathic dilated cardiomyopathy may have resulted from a previous mild virus infection that produced no symptom at the time.

    Auto-Immune Disease

    The body's own immune system is responsible for defending it against all foreign invaders for example viruses and bacteria. However, sometimes, this system malfunctions, and starts to attack the body's own tissues - this results in a so-called auto-immune disease.

    Examples of such disease include Rheumatoid Arthritis and Insulin dependant diabetes mellitus. In most auto-immune diseases, the immune system generates antibodies to attack and damage the tissues and organs. Hence in Rheumatoid Arthritis, antibodies develop against and attack the joints causing them to become inflamed and painful.

    In diabetes mellitus, antibodies develop against and attack the pancreas causing a deficiency of insulin. It is thought that a similar process occurs in some cases of DCM.

    Excessive alcohol consumption and exposure to toxic compounds

    Unfortunately, there are chemicals in the environment which can damage the heart. The most common of these is alcohol which depresses the function of the heart and, if consumed in excessive quantities for prolonged periods of time, can result in DCM.

    If an excessive alcohol intake is stopped before serious damage to the heart has occurred, then the heart can recover. In some cases, however, the damage is too great and the DCM persists lifelong. Irrespective of the cause of their disease, patients with an established DCM are advised to abstain from alcohol or at least to limit consumption to minimal amounts.

    Other chemicals such as certain anti-cancer therapies have been reported to cause cardiomyopathy in rare cases.


    Uncommonly, women in mid to late pregnancy, or soon after delivery, can develop DCM. In this setting the condition is termed peri-partum cardiomyopathy and occurs in approximately one in ten thousand pregnancies.

    Some of these women actually have DCM due to one of the other causes outlined above, but coincidence makes the disease first obvious during pregnancy, probably because of the extra

    demands placed on the heart. This type of DCM persists long after the pregnancy has ended.

    In true peri-partum cardiomyopathy the condition resolves within six - eight weeks of the delivery in 50-60% of cases, but may recur in subsequent pregnancy. The cause of the occurrence or recurrence of peri-partum cardiomyopathy is unknown.

    Women who have not completely recovered are advised to avoid further pregnancies.

    Familial disease

    Undoubtedly, there are some families where the genes they carry may cause DCM to develop sometime during life. Approximately 20 - 40% of people with DCM will be found to have one or more relatives with a cardiomyopathy.

    It is likely that auto-immune disease contributes to this type of DCM.


    The symptoms of DCM may come on slowly or can be very sudden in onset. People with different stages of disease will have varying combinations of symptoms.

    Shortness of breath

    This is very common and results from the lungs becoming congested with fluid. The fluid accumulates there because the heart's pumping action is poor. Some people notice breathlessness only when the heart's pumping action is poor. Other people only notice breathlessness when they exert themselves, whilst others are breathless even at rest: this generally indicates more severe disease.

    Swelling of the ankles

    Fluid often accumulates at the ankles, or sometimes at other sites such as the belly, or the small of the back. This is also caused by the weak pumping action of the heart. Fluid at the ankles is called oedema.

    Some people have only mild oedema towards the end of the day. Others have a lot of oedema all through the day: again, this usually indicates more severe disease.


    In DCM, because the heart is weak, muscles do not receive an adequate supply of blood, especially when exercising. This may cause a feeling of tiredness.

    Palpitations and Syncope

    This is a feeling of 'fluttering' in the chest or in the stomach area. Occasionally it can also be felt in the throat or head.

    Palpitations are also caused by an abnormal heart rhythm (arrhythmia) causing the heart to beat too quickly (tachycardia) or too slowly (bradycardia). Sometimes the palpitations are not related to an abnormal heart rhythm, but are caused only by anxiety.

    If an arrhythmia upsets the flow of blood, this can cause symptoms of dizziness or even fainting (syncope).

    Chest pain

    Some people with DCM experience chest pains either at rest or during exertion. This pain is not caused by narrowed blood vessels to the heart (coronary arteries), because these blood vessels are usually normal in patients with DCM.


    Some people develop symptoms and consult their GP. The GP may then refer the patient to a heart specialist. This doctor will in turn be interested in any of the above symptoms, and especially in whether there is any family history of heart disease.

    The doctor will perform a medical examination on the patient. Following this, some tests may be necessary and may include:

    Electrocardiogram (ECG)

    Signal averaged ECG

    Chest x-ray

    Holter monitor or 24 hour tape

    Exercise tests


    Blood tests

    Electrocardiogram or ECG

    An ECG records the electrical signal as it is conducted throughout the heart. It is performed by placing electrodes on the chest, legs and wrists Figure 3. The ECG shows changes which indicate heart muscle damage, but not the cause of this damage. In DCM the ECG abnormalities are not specific and may also be found in other conditions.

    Signal-averaged ECG

    This is a high resolution version of a standard ECG and allows the doctor to assess the stability of the heart's electrical activity. It is particularly useful for identifying people at risk of developing disorders of the heart rhythm.

    Figure 3

    Electrocardiogram or ECG

    Chest X-ray

    This is performed by standing in front of an X-ray machine for approximately 30 seconds. The results will show any inappropriate enlargement of the heart or accumulation of fluid in the lungs. Again, the findings on a chest X-ray are not specific for DCM.

    Holter monitor or 24-hour tape

    This is a continuous ambulatory (the patient may move around) recording of the heart rhythm made over 24 - 48 hours (Figure 4) and is useful for detecting any abnormality of the heart rhymn.

    Exercise testing

    This is a specially modified exercise test, similar to that used to assess patients with chest pains (angina). Breathing, blood pressure and ECG are monitored during an exercise test using a bicycle or a treadmill.

    This test allows symptoms, not obvious at rest, to become apparent when the heart is stressed during exercise, and also allows an objective measurement of improvement or worsening of heart function over time.

    Echocardiogram or ECHO

    An Echocardiogram is an ultrasound scan of the heart Figure 5. It is a simple test in which high frequency sound waves are transmitted through the skin by placing a probe on the chest wall. A picture of the heart is then produced from which an assessment of the size and function of the heart can be made.

    Blood tests

    'Baseline' blood tests are performed helping to create a health profile. In these tests a small sample of blood may be saved for future research purposes, as new developments in the understanding of the disease become apparent.


    Cardiac Catheterisation

    This test requires the patient to be admitted to a hospital, usually as a day case, but sometimes for a little longer. In this test a small tube is passed into a blood vessel in the arm or leg. A further, smaller tube, (catheter), is then passed into the heart under X-ray control. Through it, special measurements can be made, and a harmless dye can be injected to outline the heart and the coronary heart arteries (angiography).

    In general a light sedative and local anaesthetic are used when performing this test.

    Endomyocardial Biopsy

    Sometimes it is necessary to examine a small piece of heart tissue under a microscope. If this is required, the biopsy, which is performed as a day case, involves a small tube being passed via a vein into the heart, from the root of the patients neck. A few tiny pieces of heart are then taken and sent to the laboratory.

    In general a light sedative and local anaesthetic are used when carrying out this test.

    Electrophysiological Studies (EPS)

    This is a special type of cardiac catheterisation used to study the electrical activity of the heart in detail. It is needed when there are potentially more serious abnormalities of heart rhythm suspected. This procedure would usually require the patient having a light sedative and local anaesthetic.

    Radionuclide Ventriculogram

    In this test, a very small and safe amount of radioactivity in the form of a special dye is given by injection and often the patient is then exercised on a bicycle or treadmill. A special camera (gamma camera) is then used to scan the heart and a computer assesses the heart's ability to contract.


    Atrial fibrillation (AF)

    A very common abnormal rhythm in DCM. It can be associated with deterioration of symptoms or the development of blood clots (emboli).

    Blood clots

    In DCM the blood flow through the heart is slower than normal. This may allow blood clots to form within the heart or in the veins in the legs (thrombosis). If a blood clot dislodges from these sites and floats in the circulation, it can cause damage to many organs including the lungs (i.e. pulmonary embolus) and the brain (i.e. stroke).

    Therefore, some people with DCM need to be treated with anticoagulant medication (Warfarin), to prevent such clots from forming.

    Heart block

    If the normal electrical conduction system within the heart fails to function properly, the heart beat may become too slow. Light headedness or blackouts may be experienced. If this occurs, a pacemaker may be necessary.

    Heart failure

    This is a common feature of DCM. It occurs when the muscle of the heart becomes too weak to pump blood efficiently round the body causing a build up of fluid in the lungs and/or tissues.

    Some people have stable disease and there is little worsening of their condition. Others have progressive disease that causes heart failure. This usually affects both left and right sides of the heart (congestive heart failure) causing symptoms of breathlessness, swelling of the ankles or legs, prominent visible veins in the neck and a sensation of fullness in the belly.

    Rhythm disorders

    These generally cause dizziness, breathlessness, palpitations (awareness of the heartbeat), or may be symptomless. Some rhythm disorders that may occur in DCM are:

    Ventricular ectopics

    Occasional single extra heart beats. These usually require no treatment.

    Ventricular fibrillation (VF)

    Occurs rarely. A severe and serious disorder of the electrical activity of the heart rhythm. It will cause collapse and sometimes sudden death.

    Ventricular tachycardia (VT)

    Occurs commonly in DCM. It is often associated with a fall in blood pressure, and symptoms of dizziness, breathlessness, or fainting, but can be symptomless.

    Sudden death

    The risk of this happening is very small but may occur with little or no warning. It is usually caused by a severe arrhythmia or large blood clot developing.


    Presently, DCM is not curable although some patients improve spontaneously. Treatment is usually with drugs and is aimed at minimizing symptoms and preventing the development of complications and progression of the disease. A minority of patients deteriorate in spite of treatment and may require a cardiac transplant.


    This is the mainstay of treatment. Several drugs are in common use.

    ACE Inhibitors

    ACE (Angiotensin - converting - enzyme) inhibitor drugs are proven to prevent progressive dilation of the heart, and as such are of benefit to patients with DCM. Some users feel less breathless and experience improved well being on these drugs. However, it is beneficial in the long term in DCM to take these drugs even if there is no apparent improvement in symptoms in the short term.


    Amiodarone is an excellent drug for the treatment of heart rhythm disorders. However, it has several side effects, which require close monitoring and may necessitate the cessation of its use in any individual.

    Common side effects are easy sunburning, sleep disturbances, thyroid hormone abnormalities and occasionally liver, lung and eye problems. It is unusual for a patient to have severe or permanent problems.


    If heart failure is present, the body overproduces adrenaline. Over time this can cause further damage to the heart which can be prevented with beta-blockers. With a long term use these drugs will improve the outcome of patients with DCM.


    This is commonly used to control the heart rate if atrial fibrillation develops. However, even when the heart rhythm is normal digoxin is sometimes used to help the contracting ability of the heart muscle.


    These drugs are occasionally referred to as 'water tablets' and are used to off load the body of excess fluid by in creasing urine production.


    This is an anticoagulant drug which is used to prevent the formation of blood clots within the circulation.



    Some rhythm disturbances can be corrected by the delivery of a controlled electric shock to the chest. This is performed during a short general anaesthetic, and may be done as an emergency (if the patient is very ill) or as a planned procedure, when the patient attends as a day case.

    Heart Transplantation

    Some patients with DCM do not respond to medical treatment and deteriorate to such an extent that their quality of life is very poor. At this stage, the individual may be referred to a specialist hospital where an assessment will be made to see if cardiac transplantation is appropriate.


    A few patients suffer serious rhythm disturbances which cannot be controlled by medications but can be treated by a controlled small electric shock, The ICD is a device similar to a pacemaker which can deliver a small internal shock when such abnormal rhythms occur. It can prevent sudden death in high risk patients.


    Occasionally, patients with DCM develop a heart rhythm that is too slow. In these circumstances a pacemaker may be necessary to monitor the heart's rhythm and take over control if it becomes too slow. The pacemaker is implanted just under the skin on the front of the chest (Figure 6) and connected to the heart by wires inside the blood vessels.

    Patients with pacemakers need to have regular checks of pacemaker function.


    After the initial diagnosis has been made, all patients must be seen for regular checkups. This is necessary to monitor an individual's progress and adjust treatment as necessary. Follow-up is important as any complications that may arise can be identified and treatment started when it is most beneficial.

    The prognosis is variable in individual patients.

    Some patients improve spontaneously with treatment. Others remain stable with some adjustments to their lifestyle. However, a small proportion of patients continue to deteriorate despite treatment and may need to be considered for cardiac transplantation.


    In some cases, DCM seems to run in families. This suggests that there may be a genetic basis to the disease, although it is uncommon for all members of one family to have the condition. This means that some people may have no symptoms, or even no features of the disease but may still carry the abnormal gene(s) that determine the disease.

    Once someone has been diagnosed with DCM, it is usual for first degree relatives to be offered the chance to be screened for the disease. These people will undergo a similar series of tests, such as an Echocardiogram and ECG, as well as being seen and assessed by a specialist doctor.

    Approximately 25% of family members will be found to have a mild or early form of DCM even when they are free of symptoms. This early form of the condition is termed left ventricular enlargement (LVE). Some people with LVE will develop symptoms, and eventually develop DCM.

    It is as yet unknown what treatment is appropriate for people with LVE, but they are advised to be followed up with further investigations, and repeat medical assessments approximately once a year.

    Some family members will have a heart abnormality (Depressed Fractional Shortening - DFS) when screened but at present this does not appear to be an early form of Dilated Cardiomyopathy. No specific action or treatment is required.



    Generally alcohol consumption is not recommended in patients with DCM as it has a depressant effect on the heart muscle. Any individual diagnosed with the condition who wishes to drink is advised to spread the number of recommended units consumed over a week and to attempt to stay significantly within the suggested number. Low alcohol and alcohol free wine, beers and lagers are useful substitutes.


    If an individual is overweight, it places an extra strain on the heart. Sensible eating habits are encouraged to maintain weight within the normal range for height and age. As a rapid increase in weight may be due to fluid retention, it should always be notified to a doctor.


    Patients with DCM may undertake physical exercise as long as it does not produce undue symptoms. Thus exertion should be discontinued immediately if symptoms appear. By staying within exercise limits individuals should not find any difficulty in taking a moderate degree of exercise, albeit at a slower pace than other people.

    Moderate exercise in the form of regular short brisk walks is beneficial to patients with heart failure.

    Medical advice should always be sought before taking part in any competitive sports or strenuous physical exercise, as these should be largely avoided by patients with DCM.

    Family Screening

    When a person is diagnosed with DCM, it is advised that their family members should be assessed for the same condition. Usually this means first degree relatives, as well as their own partner.

    Each family member will undergo ECG, Echocardiogram, blood tests, and physical examination. Sometimes, early forms of DCM can be identified (see Families and DCM).

    Flu Vaccination

    This may be recommended by a doctor to prevent a severe bout of the flu which may in turn place an extra strain on the heart.

    Holiday and Travel

    It is advisable to see a Doctor for medical approval before travelling. If travelling abroad, it is also recommended that information be obtained from travel agents regarding insurance and the health care policy of the country to be visited.

    An El 11 form gives advice on health care in E.C. countries. It is available at most post offices and should be carried when travelling.

    Life Insurance

    Clearly, as with many heart conditions, difficulties may be encountered in acquiring insurance cover and/or premiums may be high.

    Pregnancy and Childbirth

    Occasionally, DCM can develop for the first time during a pregnancy and then regress; this is termed Peri-partum Cardiomyopathy, and can recur during subsequent pregnancies.

    Women with pre-existing DCM are prone to more problems during pregnancy and delivery. Sometimes, heart failure due to DCM can worsen during pregnancy.

    It is advised that a woman with DCM who plans to become pregnant is supervised jointly by an obstetrician and a specialist cardiologist.


    Although cigarette smoking is not directly associated with DCM, in all cases of heart disease it is advisable not to smoke as it will likely shorten life expectancy.
    NOTE: This is a post from the previous forum message board.