It is common for DCM patients to experience an overwhelming (at times) feeling of tiredness. The problem is that a DCM patient may appear healthy and normal to others when they are not feeling well, as DCM affects your heart, which affects your energy level. Additionally, your energy level may fluctuate, so your family may not understand what you are experiencing.
The rollercoaster nature of DCM energy levels may cause stress on your family and/or caregivers. Some patients can continue working with little disruption to their routines, others cannot. Every patient is unique and will react to DCM in a unique way. Keep in mind the stress on your family and/or caregiver as every patient will have a different response to their condition.
Sex Continuing sexual relationships for those with DCM can be problematic for both males and females. However, sex is an essential part of our being human. Discuss with your physician your concerns about sexual activity. Continuing sexual relations for those with DCM is usually not an issue, but like all physical activity, should not be over-done.
Pregnancy To repeat a familiar refrain on this page, every patient is unique, and so, one must consult their physician to determine if becoming pregnant is advised or not. Most physicians do not advise pregnancy with DCM due to increased risk of death during or soon after delivery. This is especially relevant with significant DCM accompanied by heart failure, or certainly with advanced disease. However, every individual is different, so it is essential to consult your cardiologist before becoming pregnant.
Family Denial of Your DCM Since a patient with DCM may appear normal, it is sometimes difficult for family members to recognize your limitations. There is no easy way to convince others of your limitations, and the only known way to counter this misperception is through increasing family knowledge and understanding of DCM. Participation in a support group can connect you with others who may be experiencing similar issues. Sharing information about DCM with your family, such as information on this website, is another means to educate them about what you are experiencing.
Transmission of DCM to your Children If you have DCM “of unknown cause”, more specifically known as “idiopathic” or cause unknown, it is likely that it has a genetic basis that can be transmitted to your children. Other causes of DCM, specifically if you have had a heart attack, is in most cases not considered genetic.
For idiopathic DCM, the current medical guidelines recommend that all first-degree relatives (parents, siblings, children) of anyone diagnosed with idiopathic DCM undergo clinical screening (ECG, echocardiogram) to exclude DCM, and then continue to have clinical screening done every 2-5 years.
Genetic testing is also recommended. If a gene mutation can be found that explains the DCM, then the at-risk relatives can also have genetic testing done to see if they also carry the DCM-causing mutation. If your children have inherited the mutation or mutations that are causing your DCM, the earlier they are knowledgeable of this, the better to start clinical screening. Early detection can lead to early treatment and better outcomes. For more information refer to Genetics Section on the DCM Foundation website homepage.
You can also help your children and medical science to understand DCM genetics if you enroll in a genetic-based study, as not all genetic causes have been identified. We still have much to learn. Please see the DCM Project website for more information
IS IT NORMAL TO BE ANXIOUS WITH DCM
It is normal to have anxiety about your condition, your treatment, your medication, and the eventual outcome and progress of your DCM. Seek out others with DCM and share your experiences. Many with anxiety about their DCM have reduced their anxiety through participating in support groups and discussing their conditions with others.
WHERE DO I GET HELP FOR MY ANXIETY?
Some medical practices or hospitals have support groups where patients can gather to discuss in person their situations. Check out the resources available in your area, or online and get involved. You’ll be better for it, and probably help someone else experiencing the same feelings as you have.
Support groups on social media may also be helpful, as long as one understands the advice dispensed in these non-medical groups should never be confused with the advice from your doctor. Sharing with other people with heart conditions on social media can be very helpful in reducing anxiety while realizing that others may be experiencing similar feelings as you.
SUPPORT FOR DCM PATIENTS & FAMILIES
There are online forums where patients seek support and guidance in managing their conditions. There are also several social media support groups, as well as physician-supported groups in some cities. Facebook Groups which may provide additional support and information include:
- “Cardiomyopathy Support Group”
- “Dilated Cardiomyopathy”
To join device-related support groups, please visit:
- “Living with an ICD (Support Group)”
- “Pacemaker Support Group”
- “Living with a Medtronic Pacemaker, ICD, or CRT Device”