Living a Big Life With PH: Stacey McCarthy Shares Her Story
When Stacey McCarthy was diagnosed with pulmonary hypertension (PH), she was forced to confront a future filled with uncertainty. Over the years, she learned how important it was to advocate for herself, accept support and continue finding ways to live a full life with PH.
Now, Stacey is sharing what she has learned in her new book, This Big Ol’ Heart of Mine.
A PHenomenal Hope board member, longtime PH advocate and leader of a support group in San Diego, Stacey wrote the book with one person in particular in mind: someone newly diagnosed with PH who is searching for help, understanding and hope.
“I want a brand new PH patient to look on Amazon and see my book and let it be a guiding light,” Stacey said.
A Story Stacey Felt Called to Tell
Stacey never had plans to become an author. She enjoyed reading and creative writing in school and had played around with writing children’s books, but publishing a book of her own wasn’t something she seriously considered.
That changed after years of living with PH and, more recently, finding her Christian faith.
Stacey became a Christian three years ago and eventually felt that sharing her story was something she was being called to do.
The result is a deeply personal account of PH, faith, family, advocacy, motorcycles, grief and joy. Stacey writes about the difficult parts of living with a rare disease, but also about the people, experiences and ordinary moments that have made her life bigger.
Helping Others Understand an Often Invisible Disease
One of the challenges Stacey explores is something many people living with PH know well: you may be seriously ill without looking sick.
Talking openly about illness can be uncomfortable. It can also be difficult for friends and family to fully understand what someone with PH is experiencing.
Stacey has always worked hard to live as normally as possible, which can make that disconnect even greater. Even some of the people closest to her did not realize everything she was going through.
Her mother has been alongside Stacey throughout her PH journey and was the first person to read the book. Still, Stacey said her mom had no idea how much she had experienced internally until she read it.
Stacey has already seen the book help another family have a similar conversation. A friend in Maine who also lives with PH shared the book with her family, giving them a better understanding of what she was experiencing.
For Stacey, that was one of the outcomes she hoped for most.
Learning to Advocate for Yourself
Self-advocacy is an important theme throughout This Big Ol’ Heart of Mine.
Living with a rare disease often means learning to ask questions, communicate what you need and speak up when something does not feel right. Stacey hopes her experiences can help other patients become more comfortable advocating for themselves and taking an active role in their care.
That same desire to help others navigate PH is reflected in Stacey’s work with PHenomenal Hope and the San Diego PH support group she leads.
Her message is not that living with PH is easy. It is that a diagnosis does not take away the possibility of connection, purpose and meaningful experiences.
The People Who Made the Journey Better
Stacey spent nearly as much time editing This Big Ol’ Heart of Mine as she did writing it, with friends helping her throughout the process.
One of her favorite parts of writing the book was getting the opportunity to recognize some of the people who have made her own journey better.
Family, friends, fellow patients and the communities Stacey has found along the way all have a place in her story. So do motorcycles, adventures and the experiences she has continued to pursue while living with PH.
At its heart, Stacey’s message is a simple one: live life to the fullest.
“We are not in control,” Stacey said.
There can be fear and uncertainty in accepting that, especially after a life-changing diagnosis. Stacey’s story shows there can also be freedom in choosing to keep living, connecting and finding joy in the time we are given.
As she writes in This Big Ol’ Heart of Mine, “Even a struggling heart can still live a very big life.”
