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Questions relating to dilated cardiomyopathy

Dr Perry Elliott, consultant cardiologist from the Heart Hospital in London, answers questions about dilated cardiomyopathy (DCM)

I was diagnosed with DCM about a year ago. I feel I've made a pretty good recovery and wonder if I need to continue taking medication. There are some conditions where it seems all right to stop taking drugs for a while. What would you advise?

It is important to recognise that your improvement has been achieved as a result of the medications. To maintain this improvement you will need to remain on the drugs. It is possible some drugs (in particular diuretics) may be able to be gradually withdrawn or the dosage reduced. It is not advisable to temporarily stop taking any of your drugs.

I have heard that some people on drug treatment for DCM gain weight. Is this due to the effect of the drugs or other factors?

It is very unlikely that any of the drugs used to treat DCM will cause weight gain. An increase in weight is much more likely to relate to dietary factors and a lack of physical activity.

Is pericarditis an early sign of DCM?

Pericarditis is typically caused by a viral infection. It may also be caused by hormonal problems, certain drugs and autoimmune conditions. It is not generally an early sign of DCM unless the heart muscle is also inflamed - a condition known as myocarditis. In a small number of people this can progress to dilated cardiomyopathy if untreated.

I have DCM and asthma. Can I take betablockers?

If you have DCM and asthma, you have to be very cautious with betablockers. They can exacerbate spasm of the airways and therefore if you have a history of asthma you should always discuss beta blocker treatment with your GP and/or cardiologist.

Should children of a parent diagnosed with DCM be screened for the condition?

Approximately a quarter of individuals with DCM have a family history of the same condition. The advice on whether and who to screen is tailored according to other clues from the history, physical examination and blood tests that can suggest a genetic diagnosis, as well as the pros and cons of screening otherwise healthy individuals. If you are concerned about inherited DCM, discuss it with your specialist.

Is diabetes connected to DCM?
In people with severe DCM there can be secondary changes in the body’s metabolism that result in diabetes. Conversely, there is some evidence that people with diabetes can develop a form of cardiomyopathy caused by the diabetes itself.

I have DCM and my drugs give me a dry mouth and throat. What can be done about this?

A dry throat is an unusual complication of ACE inhibitors and betablockers. If this happens, your drugs should be reviewed by your GP and/or cardiologist.  If one of the drugs is suspected to be the culprit, then it may be possible to change to an alternative formulation.

I have DCM. What is the recommendation for taking medicine if you get a bad dose of food poisoning with diarrhoea and a fever which may last a couple of days?

In general it is wise to continue with most prescribed medications. An exception can be diuretics (water tablets) as these could exacerbate dehydration caused by diarrhoea and vomiting.  If diarrhoea or vomiting persists for more than 48 hours, seek medical advice.

Since my heart transplant I have erectile dysfuntion. I have seen a local consultant urologist who has prescribed 20mg Cialis tablets twice a week. Do you think it is safe for me to take?

Cialis and Viagra can interact with others drugs and can lower blood pressure. You should discuss the use of these drugs with your transplant team.

What is spongiform DCM?

Spongiform DCM is also known as myocardial non-compaction. This is a condition where areas of the heart muscle appear spongy or honeycombed. It was first recognised in 1932, the first diagnosis using echocardiogram being made in 1984. Deep channels, known as trabeculations, are present in the heart muscle. The condition mainly affects the left ventricle but can also affect the right side of the heart. The treatment is the same as for other forms of DCM.

I have DCM. Can I take over the counter cold relief medications?

Generally these drugs will be fine to take but always check with the pharmacist. If you are taking warfarin, be careful to check that the drug you have does not include aspirin. Aspirin can increase the action of warfarin.

I have DCM and have been found to have low blood pressure (BP). How low can my BP go before it is considered dangerous?

Some of the drugs prescribed for DCM do tend to lower BP. When someone is started on drugs such as beta blockers or ACE inhibitors they are given a very low dose. The dose is then gradually increased every two weeks or so until the person is taking the maximum dose that they can tolerate. If the blood pressure is 90 without symptoms then there is no reason to be concerned.  A blood pressure value below 90 is not necessarily a problem if there are no associated symptoms. Symptoms of low BP are light-headedness, fainting and feeling extremely tired. If these occur, discuss them with your doctor.

I have recently been told my DCM is cured.  Can this happen?

In general DCM is not curable and you should not stop taking your medication without consulting your specialist. However, the function of the heart can return to normal or near normal is some causes of DCM caused by inflammation in the heart or when it occurs following pregnancy (peripartum cardiomyopathy). In such cases, some medications can be reduced or discontinued.

Though I am continuing with the same DCM therapy, my drugs have recently been changed to what I am told are cheaper versions. Will this cause a problem?

When a drug manufacturer's exclusive licence runs out, other makes of the same drug are produced. These are usually cheaper than the original version. You can see this in your supermarket by comparing the cost of a branded name paracetamol with a similar non-branded product. This is obviously relevant in a cost-conscious health service. Generally the drugs are the same and should not cause a problem. Occasionally some people notice a difference in their symptoms when their drugs are changed in this manner. If this happens, discuss it with your doctor.

Is it possible for hypertrophic cardiomyopathy (HCM) to change to DCM?

In some people with late-stage HCM, the heart muscle can become thinner, mimicking the appearance of DCM and causing heart failure symptoms. However this is a rare complication of HCM.

Is it safe for someone with DCM to have cosmetic surgery?

As with any surgery the risk must be assessed in each individual. The idea is to tailor the risk to the individual. Cosmetic surgery should be considered a surgical procedure. As such, a proper medical history should be taken. The risks are more in relation to the severity of heart failure symptoms and heart pump function than anything else. Practical issues such as whether the patient can lay flat for enough time need to be considered. If the patient is on warfarin this also needs consideration. The patient would need to inform their GP or their anticoagulation clinic of the planned surgery and to plan whether adjustment of the dose or event stopping warfarin is required. It may be considered unsafe to change the warfarin dose as it may place the patient at risk. To stress the point, the individual circumstances of each patient must be considered so that risk can be identified.

Can exposure to diesel fumes cause DCM?

It is not thought that diesel fumes have any action directly on the heart to cause cardiomyopathy. It is believed that workers exposed to high concentrations of diesel fumes are likely to have some sort of skin or lung reaction.

What is an LVAD?

A left ventricular assist device (LVAD) is a mechanical pump that's surgically implanted in the abdomen. The pump helps to support the work of a heart where the pumping function has been affected. The pump is attached to an external power supply and control system which is usually worn on the patient's belt. Though originally developed as a method of supporting a patient's heart during the wait for a donor heart, LVADs are now being used as a treatment to support a heart weakened by conditions such as dilated cardiomyopathy.

I have DCM and am now feeling very well on my medication. How much exercise can I do? 

In general, maintenance of a healthy lifestyle, including regular exercise, is important. It is also important, however, to avoid any level of exertion that causes you to have symptoms and we also advise people with DCM to avoid competitive sports.

I have DCM and am due to have a hip replacement. Will this operation be safe for me? 

Advice on surgery in people with DCM needs to be tailored to the individual. But if your condition is under control and your symptoms mild, it is perfectly possible to proceed with this operation. It is important that the surgical and anaesthetic teams involved in your care communicate with each other.

Why do people get chest pain with DCM?

Chest pain is a relatively common symptom in DCM. The mechanism is unknown but it may relate to abnormalities in the small blood vessels in the heart muscle.

Is it best to stop drinking if you have DCM?

Alcohol depresses heart function and when taken to excess can cause dilated cardiomyopathy. When DCM is caused by alcohol, complete abstinence is advisable. If DCM is unrelated to alcohol, most doctors would not advise complete avoidance of alcohol, but it is best to avoid a regular intake of large amounts. You should also ask your doctor about interactions between alcohol and your medications.

Is atrial fibrillation common with DCM?

Atrial fibrillation is common in people who have any type of cardiomyopathy. In many cases, the heart can be restored to a normal rhythm using drugs or DC cardioversion. If this is not possible or fails to work, then the rhythm can be controlled with drugs that slow the heart rate. In anyone with prolonged or frequent episodes, anticoagulants will usually be recommended.

I have just been diagnosed with DCM and my doctor has just increased the doses of my ACE inhibitor and betablocker. I now feel worse. What should I do?

I would report this to your doctor immediately. In this situation, I generally advise that you should return to the doses before the change. I might then consider increasing one or other drug, but not both together.

How would doctors decide if I needed a biventricular pacemaker to treat my DCM?

Biventricular pacemakers have been shown to improve symptoms in people with moderate to severe impairment of heart function and a particular ECG pattern called left bundle branch block. Under current guidelines, biventricular pacemakers should be considered only when medication has failed to improve symptoms.

What is known about brain performance, DCM and the drugs used to treat it?  I am studying at university but have found that my learning abilities and memory have both changed since I was diagnosed.

Cognitive problems are well recognised in people with impaired heart function. There are many different factors involved, including a reduction in blood flow to the brain and the side-effects of drugs used to treat DCM. People are affected in different ways. Many people also experience symptoms of depression and anxiety following diagnosis.

I have dilated cardiomyopathy (DCM) that seems to be well controlled. Can I go deep sea diving?

Diving, whether in a swimming pool or in open water, requires general physical fitness and good health. While the risks of deep sea diving for someone with DCM and no symptoms are probably very small. I would suggest following advice set out by the British Sub-Aqua Club (BSAC), that is available on line at www.bsac.com  To my knowledge the club has not produced any specific guidelines for cardiomyopathy, but it does have a network of medical advisors who are specialists in the effects of diving on the cardiovascular system.

 



The Cardiomyopathy Association's Registered Charity Number is 803262.
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