About Vicky
Vicky is the mother of an adult with CTEPH who was diagnosed in 2021. She helps moderate the Pulmonary Hypertension Association CTEPH Facebook group and volunteers in her community. “When my son was scheduled for surgery, I did an exhaustive search for CTEPH and PTE, and I found and joined the PHA CTEPH Facebook group. Our wonderful members literally saved this mama’s sanity during my son’s surgery and recovery.”
Vicky wants to make sure that nobody goes as long without a diagnosis as her son did. “It broke my heart to watch him struggle to find answers for his rare disease, and if I can help anybody, I want to make sure I do help them.” Vicky also can help with funding for medication or medical bills.
Vicky, who is retired, believes she can make a difference by helping patients and their caregivers learn to advocate for themselves. She lives in the U.S. Midwest.
Treatment familiarity:
- Macitentan (Opsumit)
- Riociguat (Adempas)
- Sildenafil (Revatio)
- Subcutaneous treprostinil
Experience with related illnesses:
- Chronic Thromboembolic Disease (CTEPH)
- Lupus
Other areas of experience:
- Being a caregiver
- Being a parent of a child with PH
- Connect to chat
- CTEPH
- Oxygen support
- Treatment access
Preferred communication methods:
Preferred languages:
- English