30 Days of PH: Giving Back to the PH Community

From left, Chris, Evan, Ryan, and Mandy Gayken. (Photo courtesy of Mandy Gayken)

Day 24 of 30

This is Mandy Gayken’s story:

I first heard about pulmonary hypertension (PH) not long after my son Evan’s one-year checkup. His new pediatrician noticed a heart murmur that his previous doctor hadn’t detected. An echocardiogram revealed that the right side of Evan’s heart was enlarged. So we were off to Children’s Minnesota Hospital from our rural home to investigate further.

“What causes right-heart enlargement?” was a question I’d end up Googling for hours, trying to find something fixable to put me at ease. Pulmonary hypertension was the top reason cited, but I was terrified of it. Nevertheless, additional testing confirmed that my son had severe idiopathic PH. We immediately started him on an oral medication and oxygen. 

As a toddler, Evan started to have syncopal episodes. In response, we were airlifted to Houston, where his new PH specialist started him on an aggressive treatment plan. This included a strong, continuous infusion of a vasodilator medication.

Things were tough, and on many days, it was hard to cope. I started searching for hopeful stories and treatments and found exciting new research and understanding about the disease. I also found a Facebook support group and learned about children who have lived with PH for many years and have good lives overall.

We eventually moved to Texas to be closer to Evan’s PH specialist, who has been instrumental in how well Evan has done. As Evan’s pulmonary pressures lowered, he got the chance to try taking only oral medications. He’s been pump-free for two years and is loving every minute of it. 

I don’t know what life would be like If we’d never heard about PH. Would we appreciate and value the time we get to spend together as a family as much as we do now?

We certainly wouldn’t have had a deep understanding of what it means to have to fight to survive. We wouldn’t have met other great people in the same rocky boat as we are, who continue to help us along this journey. Family, friendships, and hope are how we get through the tough times.

I’m now in a place where I’d like to help others struggling with PH. As I thought about ways to help the PH community, the first thing that came to mind was the Pulmonary Hypertension Association. This is one of the first places people go to find information and support. I’m grateful that there’s a resource like this for those who recently have been diagnosed or are looking for more information along the way.

Pulmonary Hypertension News’ 30 Days of PH campaign will publish one story per day for PH Awareness Month in November. Follow us on Facebook and Instagram for more stories like this, using the hashtag #30DaysofPH, or read the full series.