Sisters Beat Rare Heart Disease After 9-Year Fight

When Megan Kaverman walked into the emergency room in 2016, she refused to leave without answers.

For nine years, the Ohio woman had suffered through weight gain, shortness of breath, and crushing fatigue that left her unable to function. Doctors told her she was too young for heart problems. One suggested she just eat less pizza.

At 27, tests finally revealed the truth. Kaverman was in early heart failure from heritable pulmonary arterial hypertension, a genetic disease so rare it affects fewer than one in a million people.

The condition narrows lung arteries, forcing the heart to work so hard it can eventually fail. About 70% of patients don't get diagnosed until their heart is already failing.

Kaverman called her diagnosis day her "rebirth." Treatment at the Cleveland Clinic helped her regain her life, and she became determined to spread awareness about the disease.

Two years later, that mission hit close to home. Her sister Katie Gusching, then 32, started struggling to breathe during simple tasks like climbing stairs. Her legs swelled and her vision briefly went white.

Kaverman recognized the symptoms immediately. She urged Gusching to ask doctors about pulmonary hypertension.

The tests confirmed it. Gusching had the same rare disease.

"If she hadn't gone through hell and back to figure out what she had, who knows if I'd be here," Gusching said.

The Bright Side

Today, both sisters are thriving under treatment at the Cleveland Clinic. The disease has no cure, but new medications have transformed their lives.

Kaverman now runs 5Ks without losing her breath. Gusching hiked over three miles last year, something she thought her diagnosis made impossible. The sisters are planning a trip to the Dominican Republic together.

They're also enrolled in clinical trials helping develop new treatments. Their pulmonologist, Dr. Kristen Highland, has watched the field transform from having zero treatments to multiple options that give patients real hope.

The sisters schedule their clinic appointments together so they can carpool and catch up. What started as a devastating shared diagnosis has become unexpected quality time.

"Katie and I have always shared a lot, and I just feel like this brings us closer together," Kaverman said.

Now 36 and 39, both women are advocates for pulmonary hypertension awareness, urging anyone with unexplained heart symptoms to ask their doctors about the possibility of the disease.