Struggling for Answers: A Family’s Journey with Heritable Pulmonary Hypertension

Struggling for Answers: A Family’s Journey with Heritable Pulmonary Hypertension

Megan Kaverman sensed something was wrong. At 18, she experienced weight gain and shortness of breath. Her doctor couldn’t pinpoint the issue. By 25, fatigue overwhelmed her. Breathing became difficult. Despite many visits to healthcare providers, no clear answers emerged. Her weight gain was noted, but its source remained a mystery. A doctor advised reducing pizza intake. High blood pressure was dismissed as mere nerves.

Trips to the ER provided little relief. The symptoms were downplayed due to her age. Kaverman persisted, visiting the emergency room in 2016 at age 27. Tests revealed early signs of heart failure. She refused to leave without answers, and was admitted to the ICU. Intensive diagnostics uncovered heritable pulmonary arterial hypertension.

Despite the daunting diagnosis, Kaverman chose optimism, calling the day her “rebirth.” Treatment at the Cleveland Clinic enabled her return to normalcy. Yet, two years later, her sister Katie Gusching showed similar signs. Recently a new mother, she struggled with daily tasks. Difficulty breathing, swelling, and transient vision loss raised alarms. With Kaverman’s suggestion, tests confirmed pulmonary hypertension.

Heritable pulmonary arterial hypertension is genetic, causing narrowed lung arteries, elevated blood pressure, and increased heart strain, according to Mayo Clinic. It can lead to heart failure. Orphanet data indicates less than 4% of these cases are heritable, affecting fewer than one in a million. Most diagnoses occur when heart failure has set in. While uncured, treatments manage it effectively.

Initially, Gusching mourned lost activities like hiking and swimming. Navigating insurance policies was taxing. Kaverman provided unwavering support. “It’s good to have someone to ease the pain,” Kaverman remarked, acknowledging her unique advantage. Under the care of Dr. Kristen Highland and Dr. Adriano Tonelli, both sisters benefit from Cleveland Clinic‘s clinical trials.

Highland expressed optimism due to the progress: “There are a lot of treatments now.” Kaverman and Gusching aim to raise awareness about pulmonary hypertension. Kaverman encourages acquaintances with persistent cardiac symptoms to explore the possibility of the disease.

“I want to help those who can’t,” Kaverman affirmed. Both sisters’ condition remains stable, enabling Gusching to resume loved activities. Kaverman’s new medication transformed her life, allowing her to participate in 5K races sans breathlessness.

The sisters plan to celebrate Gusching’s birthday in the Dominican Republic. “It’s wonderful to do things I couldn’t before,” Kaverman shared. Although the journey was challenging, Gusching noted silver linings. Their joint appointments foster connection. Kaverman concluded: “Sharing everything strengthens our bond.”

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