Stevenson, Wash. — Fifteen years after learning she has life-threatening pulmonary hypertension (PH) and five years after being diagnosed with breast cancer, Debra Watkins of Stevenson, Wash., is loving her life.
PH is a progressively debilitating disease resulting in high blood pressure of the lungs due to narrowing of the pulmonary arteries. It forces the right side of the heart to pump so hard to move blood into the lungs that it can lead to heart failure and death. Symptoms are non-specific and include shortness of breath, fatigue and chest pain and consequently people with the disease go months, sometimes years, believing they have something other than PH. Most people living with PH are ultimately diagnosed with an advanced form of the disease. But early and accurate diagnosis, quality care and appropriate treatments now available for two forms of PH — pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH) — can extend and improve the quality of life for many people living with the disease.
When doctors told Watkins she had PAH, the median age of survival without treatment 2.8 years from the time of diagnosis. She said even though this was a crushing diagnosis, it became grave when in 2007 she passed blood clots through her heart down her arm. Her doctors said she would be lucky to live another 18 months. Four years later, she’d lived long enough to get the third big blow of her life – her cancer diagnosis. She said it almost killed her spirit, but only temporarily before her sense of humor rescued her from a moment of furious self-pity.
“I went out on my deck and yelled at God, saying ‘enough already, what more do I have to give?’” She felt broken, not sure how to carry on. “But then I told myself what I tell so many others. ‘Everybody’s big is their big. You just have to put on your big girl pants and carry on’.”
Watkins will share her story of hope and inspiration Saturday, August 12, at PHA on the Road in Portland, Ore. The free Pulmonary Hypertension Association (PHA) day-long education, networking and support event is open to patients living with PH and associated conditions, as well as their loved ones. The event will also recognize Don Stevenson, also known as The Pacing Parson, who two years ago, at age 79, walked across the country to raise awareness and funding to support PHA. As the nation’s leading PH organization, PHA delivers integrated patient and health care professional programs that advocate for patients, catalyze research for a cure, empower PH patients and caregivers, and enhance patient care.
Five years after undergoing a mastectomy, Watkins is cancer free. She manages her PH with the help of oxygen and medication delivered by an infusion pump placed under her skin. Sometimes, she gets extra help getting around with the use of a scooter. Watkins fills her life with things that make her happy, spending time with her family and advocating and fundraising for PHA. She said she’s not fighting PH, she’s living with it.
“My family inspires me to live. Every day, their love keeps me moving. Just the miracle of life and appreciating this gift – that’s what keeps me going. My job is to live this life, this gift, to the best of my ability,” she said.
Watkins has been married 47 years. Her husband, her two daughters and their husbands and her two granddaughters are a part of her everyday life. Watkins is also an active PHA support group leader and event fundraiser. For five years, she has hosted an event called Toasting for a Cure, raising more than $300,000 for the organization’s Robyn J. Barst Pediatric Research and Mentoring Fund. Several years ago, unable to fly because of her PH, she made special arrangements to pack enough oxygen and medication for a three-day train trip across county to join others living with PH in Washington to ask members of Congress to co-sponsor legislation supporting the PH community.
“I have to be brave,” Watkins said. I. stand in the possibility of a cure. I believe It’ll happen in my lifetime. My advice to others living with PH or any other life-threatening disease is to live a full life. Find out what inspires you and live in the possibility. I have to live in this space. As long as I have breath in me as long as I’m loved and get to love, that’s enough.”
In addition to hearing Watkins’ story, PHA on the Road participants will take part in interactive presentations, educational sessions and networking opportunities. PHA on the Road provides participants with complimentary breakfast, lunch, childcare and parking. The forum takes place 8 a.m. to 5 p.m. at the Double Tree by Hilton Portland 1000 NE Multnomah Street, Portland, OR 97232. To register for the event and to learn more, please go to https://phassociation.org/ontheroad/portland.
About the Pulmonary Hypertension Association
Headquartered in Silver Spring, Md., the Pulmonary Hypertension Association (PHA) is the country’s leading pulmonary hypertension organization. PHA’s mission is to extend and improve the lives of those affected by PH; its vision is a world without PH, empowered by hope. PHA achieves this by connecting and working together with the entire PH community of patients, families, health care professionals and researchers. For more information and to learn how you can support PH patients, visit www.PHAssociation.org and connect with PHA on Twitter and Instagram @PHAssociation and on Facebook at www.facebook.com/PulmonaryHypertensionAssociation.
“Toasting for a Cure” co-founders and patients (L-R) Bridie Halbach, Debra Watkins, Bethany Barnes. Debra Watkins was the recipient of a 2016 PHA Impact Award for her philanthropic work in raising money for the Robyn Barst Pediatric Research Fund. She will speak at the 2017 PHA on the Road event in Portland, Ore.