What To Ask Your Doctor
Realizing you have hypertrophic cardiomyopathy can change your life but learning more about your diagnosis can help you feel in control. There are a few basic things you can do to help manage the process when you first learn of your diagnosis. It's important to make sure any questions you have about the disorder are addressed. But don't limit yourself to these five questions.- How will having HCM affect my life?
- Is there anything I can do to manage my disease? Does my HCM require treatment?
- What kind of lifestyle modifications do I need? Can I still exercise?
- When should I talk with my children or other family members about genetic testing or screening?
- Second opinions: Should I have one?
Once a diagnosis is established, there are many different treatment approaches your doctor may recommend. For some people, lifestyle adjustments may be enough to control symptoms and sustain life. For others, doctors may suggest certain drugs, a surgical approach, or a combination of different methods. The treatment route will depend largely on the severity of the disease and the patient's overall health.
Understanding Your Diagnosis
Read More- Have someone come with you to the doctor: it is important to bring a close friend or family member not only to support you, but also to help you understand and digest all the information.
- Take notes: write down what you hear can help you focus and create a record of the information so you can refer to it later on.
- Don't be afraid to get a second opinion: your doctor won't be offended if you get a second opinion, and even if he or she is, don’t worry about it! It is extremely important to go through the process with a doctor you trust.
Questions To Ask Your Doctor about HCM
Once you've received HCM diagnosis or even if you or a doctor just thinks you may have it, it's important to make sure any questions you have about the disorder are addressed. Below are some suggestions to get you going, but as always you should try to remember that you deserve to have all your questions answered. Don't limit yourself to these five questions if there's more you're needing or wanting to know about this rare disorder.1. How will having HCM affect my life?
"HCM must be looked at as a lifestyle changer," Dr. Philip Weintraub, a cardiology specialist based in New York, tells SurvivorNet. He advises avoiding any hard drugs, such as cocaine, and cutting back on alcohol. "You don't want to invite other agents that might be toxic to the heart muscle. You do not want to use illicit drugs, especially cocaine. You don't want to use alcohol because alcohol itself could act as a depressant."2. What kind of lifestyle modifications do I need? Can I still exercise?
Implementing a series of healthy habits after you’ve been diagnosed with hypertrophic cardiomyopathy is important for all patients, but these changes may look different for different people.
Dr. Weintraub suggested prioritizing habits, such as:
- Moderate exercise
- Avoiding isometrics exercises like weight lifting
- Maintaining weight
- Getting on a healthy sleep schedule
- Discussing/managing stress
- Avoiding substances that put strain on the heart
"You want to [stay] at a healthy weight," he added. "You don't want to put more strain on an overstrained system by allowing obesity to settle in. Sleep is [also] very important. Sleep must be obtained because people who don't sleep well and develop sleep apnea compromise their general health."
A heart healthy diet includes a variety of fruits, vegetables, whole grains, and lean meats and fish. A diet low in animal fat may also be helpful, since it may reduce cholesterol.
Dr. Aeshita Dwivedi, a non-invasive cardiologist at Lenox Hill Hospital, told SurvivorNet that finding the right exercise routine is also important when taking care of heart health.
"It's also important that you remain active, which means moderate activity" Dr. Dwivedi said. "A lot of patients with hypertrophic cardiomyopathy are restricted from doing strenuous activity because it can actually make their condition worse, but it's important to still stay active and [patients] can consider a supervised exercise program to remain active as well."
3. Is there anything I can do to manage my disease? Does my HCM require treatment?
How HCM is treated depends a lot on the individual patient and the severity of the disease. In some instances, simple lifestyle modifications may be sufficient, while in others, beta blockers (drugs used to manage abnormal heart rhythms) or pacemakers (devices that help the heart to pump blood) may be required.
"In some cases, one can use lifestyle modification in those that are asymptomatic or less than symptomatic. In the more severe cases, one needs to bring in an arsenal of medications," Dr. Weintraub explains. "In the past, we've used beta blockers, [which are] drugs that block adrenaline from the body with the thought process being that if you could decrease contractility of the left ventricle, you will decrease the amount of obstruction that occurs when the blood is being pumped out of the heart."
In April 2022, the Food and Drug Administration (FDA) approved a new treatment called mavacamten for people with certain types of obstructive HCM.
"Mavacamten is an agent that will reprogram the muscle fibers of the heart," according to Dr. Weintraub. "These are the muscle fibers, and they will downscale them to the point where they don't produce as much muscle, which is contrary to what is necessary and what develops in hypertrophic cardiomyopathy.
"The drug has been studied and it appears to be quite effective in improving the quality of life where people who have experienced heart failure generally can move to a lower class in terms of how symptomatic they are."
4. When should I talk with my children or other family members about genetic testing or screening?
The disease is normally passed down through family members. If you have a parent with hypertrophic cardiomyopathy, you have a 50% chance of having the genetic mutation for the disease as well. Those with close relatives who were diagnosed should speak to their doctors about the need for screening.
"In some cases, a gene can be identified," Dr. Dwivedi says. "But in some we're still learning more about the disease and we don't exactly understand all the genes that lead to it. If you are lucky that your family has a gene that's been identified, it can be used to screen your first degree family members like your brother, your sister. If you're planning to start a family in the future, identifying a gene can be very helpful in risk stratification of your offspring as well, and can also help counsel during pregnancy."
According to clinical guidelines from the American College of Cardiology and the American Heart Association, in first degree relatives of select patients with genetic or inherited cardiomyopathies, genetic screening and counseling are recommended to detect cardiac disease.
5. Second opinions: Should I have one?
Once you've gone through all of the tests needed to diagnose your disease and your doctor has recommended a course of action, you will likely, finally, feel a sense of resolution. But no matter how qualified and experienced the doctor who diagnosed you is, there may be a lingering feeling about getting a second opinion. It's OK to consider your doctor's treatment recommendations as just the first step in figuring out what to do next.
A second opinion gives you the chance to explore other therapeutic options. Another doctor may offer a new perspective on your disease, and possibly recommend treatments that are different than what the first doctor you saw suggested.
Knowledge is power. By asking your doctor these questions, you can learn more about your diagnosis and make informed decisions about your treatment options. Remaining positive throughout your journey will help you successfully manage your symptoms and take advantage of opportunities for support.
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