When Terry McGraw was diagnosed with idiopathic pulmonary arterial hypertension (IPAH) in January 1990, she had never heard of the disease, then known as primary pulmonary hypertension (PH).
“During the first few years after my diagnosis, my husband and I focused on doing all we could to learn about the disease and get answers,” says Terry, of Natick, Massachusetts.
Her husband Tom remembers being terrified. He worried that Terry wouldn’t be around for their two daughters. “The fear of them not having Terry hit hard,” he says. But Terry fought, and Tom began to plan and fight on her behalf.
Making a difference
The McGraws are among the families who have lived with PH for many years – in their case, decades.
In the early 1990s, little information was available about PH, and the McGraws didn’t find the fledgling Pulmonary Hypertension Association (PHA) for about five years. Terry slowly became involved with PHA as time went on and the association grew.
At first, she started participating in an online forum to connect with other patients who exchanged advice. As her kids got older, she began attending support group meetings and started fundraising for the PHA Boston O2breathe Walk.
Through her participation, she realized PHA’s importance to the PH community.
“Because our disease is so rare, we need a louder voice,” Terry says. “PHA is a strong advocate that projects so much louder than we could muster on our own.”
Tom got involved a few years later. “At first, I was more focused on Terry and our kids, but as time passed, I realized that PHA was an important ally to us.”
Tom, Terry and their daughters, Mary Clare and Annie, started the fundraising team Tipperogues for Terry” for the Boston O2breathe Walk. Tom and Mary Clare also got involved with the PHA Greater Boston Support Group, eventually becoming co-leaders with Wendy Berry, who has PH.
“This disease stinks, but it can be managed,” Tom says. “Over the past 30 years, I have seen firsthand what determination can do when combined with support from family, friends and committed and caring professionals.”
Looking back, Terry recalls the looks on the doctors’ and nurses’ faces when she was diagnosed. They told her: “We’re sorry; you have a tough one.”
Thirty years later, she says she has many wonderful memories because of great doctors and nurses, friends and family, fellow patients and PHA staff who helped her fight.
“I am living proof that you can survive, and PHA was a big part of my journey.”
Terry and Tom originally shared their PH journey in the December 2020 issue of Pathlight magazine, which launched the Pulmonary Hypertension Association’s 30th anniversary. If you’re not a PHA member, join today to enjoy Pathlight, reduced PHA 2022 Conference rates and more.
Join the McGraw family in fighting PH and give hope to the PH community for the next 30 years. Donate to support PHA’s mission to extend and improve the lives of those affected by PH.