Finding a solution for HCM

Loren Berenbom, MD, helped Willis Hoskins treat his HCM

Willis Hoskins was taking medications to control his HCM symptoms, but it wasn't working. A trip to the emergency room helped him realize he needed a higher level of care. Find out why he traveled more than 5 hours to The University of Kansas Health System for treatment. Read his story.

Hypertrophic Cardiomyopathy

Hypertrophic cardiomyopathy, or HCM, is a type of heart disease that occurs when the heart muscle is abnormal. In HCM, the heart has difficulty pumping blood to the rest of the body, which can result in a number of serious heart issues. HCM is a common genetic condition that affects men and women, adults and children, and is a cause of heart failure, abnormal heart rhythms and sudden cardiac death.

The University of Kansas Health System provides comprehensive assessment and treatment for those with hypertrophic cardiomyopathy in Kansas City. Our doctors have successfully treated hundreds of people with HCM, and our hospital has been designated as a center of excellence by the Hypertrophic Cardiomyopathy Association.

If you have a family history of HCM, or are experiencing symptoms, contact us. Request your appointment online or call 913-588-1227.

About hypertrophic cardiomyopathy

Hypertrophic cardiomyopathy causes an abnormal thickening of the heart muscle. This can keep the heart from functioning normally. It also can disrupt the electrical currents in the heart. HCM is the most common inherited heart condition, affecting about 1 in 500 people.

Most people with HCM live long and healthy lives. But HCM is the leading cause of sudden cardiac arrest in young athletes. It also can cause:

Risks and symptoms

This disease is autosomal dominant. That means it requires only one gene from one parent to pass to the child. If one parent has the abnormal gene, each child has a 50 percent chance of inheriting the disease. If one of your parents or siblings has HCM, you should be screened.

In addition to those with a family history of HCM, those who have or have experienced any of the following conditions may also benefit from screening:

  • Sudden cardiac arrest
  • Fainting (syncope) or lightheadedness – especially during or shortly after exercise
  • Shortness of breath
  • Decreased exercise tolerance
  • Chest pain
  • Rapid or irregular heart rhythms

Diagnosis and treatment

The University of Kansas Health System offers the most current imaging tests for HCM. Which tests your doctor chooses may depend on your symptoms and their timing. Some of the standard tests to diagnose HCM are:

HCM can be treated a number of ways. The University of Kansas Health System offers all of today's leading HCM treatments in Kansas City. Your HCM treatment will be determined by your doctor and care team.

  • Lifestyle changes
    Making these changes can reduce your risk of having an abnormal rhythm.
    • Stop using tobacco.
    • Control your blood pressure.
    • Control your cholesterol.
    • Control your salt intake.
    • Drink alcohol only in moderation.
    • Exercise regularly (check with your doctor first).
    • Reduce your caffeine intake.
    • Be careful with cold medications. Some have ingredients that promote heart rhythm problems.

  • Medications
    Medications can treat reduced heart function or heart rhythm problems.

  • Surgery
    HCM sometimes requires surgery to remove part of the thickened heart muscle.

  • Alcohol septal ablation
    A small tube or catheter is inserted into a blood vessel in your groin or arm and into your heart. Through the tube, the doctor can improve the left ventricular outflow tract obstruction and related symptoms. It is an alternative to open heart surgery.

  • Cardiac catheterization (cath or angiogram)
    A small tube or catheter is inserted into a blood vessel in your groin or arm and into your heart. Through the tube, we can perform tests and treat problems.

  • Permanent pacemaker
    A pacemaker is implanted beneath the skin on your chest to help control abnormal rhythms in your heart.

  • Implantable cardioverter defibrillator (ICD)
    This is like a pacemaker and a defibrillator in one. It can provide an electrical shock to restore your heart's normal rhythm.

Why choose us

  • The University of Kansas Health System is a nationally recognized center of excellence for HCM. Only programs with state-of-the-art prevention, diagnosis, treatment and research are recognized as centers of excellence. Our hospital is the only hospital in the region to receive this recognition.

  • Our doctors have extensive training in HCM diagnosis and treatment. They have a wealth of experience from years of providing care for hundreds of patients and families.

  • Our experienced nurse clinicians also are knowledgeable about HCM and adult congenital heart disease. They understand your concerns and are happy to answer your questions.

  • What truly sets the program apart is the strength of multiple heart specialties coming together. Most programs include only an electrophysiologist and a surgeon. We include an interventional cardiologist and an echocardiographer, too. Your diagnosis and treatment plan will benefit from the perspective and coordination of four specialties.

What to expect

Once you have made your appointment, a nurse clinician will contact you before you arrive to get your medical history, your family medical history and your medical records. This will help ensure that your visit is as streamlined as possible.

Your cardiologist may order one or more tests to determine whether your symptoms are caused by HCM. Once a diagnosis of hypertrophic cardiomyopathy is made, your care team will develop a treatment plan that may include medications, heart surgery or a minimally invasive procedure.

HCM can progress over time, so be sure to continue with regular screenings.

  • Every 12 months between age 12 and 23 (Growth spurts may accelerate the progress of HCM.)
  • Every 5 years after age 23