ACM is rare, has at least 5 identifiable genetic causes, and was first diagnosed in 1982. Many questions remain on how best to treat this disease and what to expect once the diagnosis is made. Also, doctors can’t determine which patients are at a higher risk of developing possible fatal arrhythmias. Medical treatment and alternative therapies that might affect the long-term outcome of the disease have not been well-studied. In addition, there have been no controlled studies on the effect of exercise, ICDs, medications and procedures over a number of years on a person diagnosed with ACM.
ACM and exercise
An important recommendation for individuals with ACM is exercise awareness and perhaps limitations. It is thought that exercise places additional strain on already weak heart muscle connections. What intensity of exercise that is safe for individuals with ACM is not yet known. For many patients, exercise can provoke arrhythmias. There are also numerous reports of sudden cardiac death from ACM that happen during physical exertion. This is based on experimental data and clinical observations. Exercise may also accelerate progression of the disease.
It should be noted there seems to be an increased incidence of ACM in young, very athletic individuals, especially men.
It’s currently recommended that competitive athletics and endurance sports should be restricted in patients with ACM. Instead, patients with ACM are advised to focus on mild aerobic exercise such as walking or playing golf. If higher levels of exercise are performed such as jogging or bicycle riding, it’s recommended that it be limited in duration and intensity as much as possible. It’s best to talk to your doctor about what types of exercise are right for you.
Affects of stimulants on ACM patients
Patients who are prone to arrhythmias are generally advised to avoid stimulants of all kinds, including but not limited to nicotine and caffeine. Other stimulants include Sudafed (pseudoephedrine) which can be found in cold and flu medications. People with ACM can get arrhythmias without taking stimulants or exposure to alcohol.
Because a heart with ACM has the ability to conduct abnormal electrical impulses, arrhythmias can happen at any time. Although it’s human nature to try and find a cause and affect relationship, there is not an identifiable cause for all arrhythmias.
Pregnancy and Gene Testing
The decision of persons with ACM to conceive a child is difficult and should be made on a case-by-case basis.
Although there is little information on pregnancy on patients with ACM, women have had uncomplicated pregnancies, even with those who have an ICD or are taking medications. However, there are some medications that can harm the baby as it develops, so you will need to talk to your doctor to see if he/she would recommend that you switch medications temporarily. Pregnancy does put extra strain on the heart. If you are planning a pregnancy, or become pregnant, you should consult your cardiologist and obstetrician as soon as possible. You can also talk to your doctor about medication options during delivery, delivery options, and monitoring of your heart during labor.
Once a person has a mutation, whether due to family history or a new mutation, there is a 50 percent chance that the mutation will be passed on to each child.
Genetic testing can be done in a fetus. Some couples may request pre-natal diagnosis through amniocentesis at the beginning of the pregnancy to determine the genetic status of the fetus and to consider terminating the pregnancy if the gene mutation is present. Ethical and legal issues apply in these situations. However, according to geneticists, even if a genetic test is positive in the fetus, it wouldn’t tell you the possible severity, if any, of the disease. In other words, the gene may be present without doing damage or it could cause signs and/or symptoms of ACM.
Other options to be considered are adoption, artificial insemination using donated mature eggs or sperm, and pre-implantation genetic diagnosis. Another option is the use of in vitro fertilization to conceive embryos that can be tested for the family mutation before being implanted in the mother. This procedure is restricted to severe and untreatable diseases.
Flu Vaccinations
Patients who have a chronic health condition such as heart disease are more at risk for complications from the flu. Therefore, doctors usually recommend being vaccinated for both the seasonal flu and HlNl, or swine flu. These are separate vaccinations. If you have heart disease, get the shot, not the inhaled mist vaccine. The shot contains killed virus and can’t make you sick. The mist form of the vaccine contains a weakened live virus. If you are a family member of or a caregiver to someone with ACM, you should also receive both vaccinations to reduce the odds of putting your loved one at risk. Talk to your doctor right away if you think you may be coming down with the flu. Seek emergency treatment if you have any of the following: difficulty breathing or shortness of breath, temperature over 101 degrees F, pain or pressure in the chest or abdomen, sudden dizziness or confusion, or severe or persistent vomiting.
The long-term outlook
Once diagnosed with ACM, patients ask what will happen to their heart over the years. Some patients will have bouts with arrhythmias that require changes in medications, procedures and/or ablations. The majority of people who stop doing strenuous exercise early on in the course of their ACM diagnosis do quite well. Once the arrhythmias are controlled with medication, and/or if a patient receives an ICD, very few patients in the U.S. die from ACM. The ICD offers protection from sudden cardiac death and, at present, most patients with symptoms of ACM are receiving this treatment. With increased longevity, patients may eventually develop heart failure and some may require heart transplantation. However, there are only a few patients who have developed such severe impairment that they require a heart transplant.
The progression of ACM is usually slow. Currently, it’s difficult to predict in which patients the disease will progress and how quickly. Thus, using an ICD in ACM patients to prevent death may not be necessary for many patients. Additional research is need to determine which ACM patients are at high risk, or likely to be, for sudden cardiac arrest.
The long-term outlook for most patients who have been diagnosed with ACM is good. Because of improved cardiac imaging and genetic testing, individuals are now being diagnosed with ACM at a much earlier stage of their disease. Since the first clinical diagnosis in 1982, significant advances have been made in the understanding of all aspects of this disease. Today, doctors believe most people who die from ACM weren’t diagnosed before their death. For many individuals, the diagnosis of ACM comes as a surprise. For others, it explains a long history of symptoms that they never understood. In either case, patients and their families may feel a sudden loss of well-being and a perception of helplessness. With any diagnosis of a chronic illness, it takes time to adjust to the psychological, physical and emotional impacts of this disease. Most individuals learn to cope by gathering information about ACM and find comfort knowing that with proper medical care and a few lifestyle adjustments, they can live healthy and productive lives. You should discuss with your doctor guidelines for diet and healthy living, as well as being aware of symptoms that could indicate a complication related to medications, treatments, or the disease itself.
For more information about the diagnosis and treatment of ACM, please visit www.heart.arizona.edu.