I'm Aware That I'm Rare: Jody Petry
My name is Jody Petry, and I’m from Milwaukee, Wisconsin.
I am a PH patient diagnosed about three years ago. My daughter, who’s 12, was diagnosed about seven years ago. My own path to diagnosis was noticing shortness of breath and increased fatigue with activity. I’m adopted, but I have medical records from when I was an infant, and the discharge summary talks about high pulmonary pressures. These are from when I was about a year old. I’ve had those since I was 18, and have passed them on to doctors. Nobody has ever picked up on that. When I started experiencing symptoms, because of my daughter, I knew pretty much without a doubt what it was.
Went to a PH specialist who had me do a six-minute walk and an echo. He told me I needed to walk farther, get my blood pressure under control, and lose weight; and told me to come back in a year. My primary care doctor sent me to a cardiologist, who then did a right-heart catheterization and diagnosed me.
I’m on oral meds. My PH is fairly well controlled. Still have some activity limitations as far as being able to … My husband likes to bicycle, so I have a pedal assist bike now so that I can go on rides with him, because I couldn’t handle the hills where we live. Gave up some of my volunteer work. I still work full-time but gave up some of the volunteer work that I also did with my kids’ schools because I couldn’t keep up with everything.
Taryn is 12 and was diagnosed at 5. Growing up as a toddler, we thought she was difficult. She would complain about walking up stairs, that her legs were tired. It’s like, “Well, it’s church. I know it’s not your favorite place to go, but you can do this.” But we saw it more as being difficult.
She had episodes of syncope when she was a year old, was hospitalized for a week, and was discharged with a diagnosis of systemic hypertension. Then, when she was four, her renal doctor wanted a baseline echo, just wanted to see how the heart was handling her high systemic normal blood pressure. The cardiologist walked in and said, “We think there’s more going on here.” In researching it, it’s like that explains a lot. Developmentally, she was on target, but activity-wise, she didn’t do as much.
He followed her for about nine months before doing a right-heart catheterization, and then the right-heart cath confirmed the diagnosis of pulmonary hypertension. Up until about three months ago she was on oral and inhaled meds only. In April we added the central line. What we’ve seen during her diagnosis and her experience with PH is that, as she grows, her pressures go up and down. Her activity tolerance goes up and down.
She does Irish dance. Very physically challenging, and she can’t do a lot of it, but she enjoys it quite a bit. We gauge how she’s doing pretty much on can she make it through a dance class. What dances is she willing to try and what dances isn’t she willing to try? She likes to just tell you, “I’m fine.” “You look a little tired. I notice you didn’t do this.” “No, mom. I’m fine.” We really have to base how she’s doing on what we see and interpret with her activities.
Looking at my own situation, had I not been aware, had I followed this pulmonologist, this doctor’s advice and gone home, I could have been very much sicker before I was diagnosed. Being aware of pulmonary hypertension, and the symptoms, and the diagnosis track, I knew not to stop there. I knew to go back and ask my doctor for a different referral. Because I knew that there was something more to it.
With kids, my son, we’re watching him very closely. He’s been diagnosed with asthma but we keep going back to the cardiologist to make sure that the shortness of breath and the blueness that he’s experiencing is not pulmonary hypertension. Because, at 16, he’s not going to tell me something unless it’s really bad, so I want to keep on top of those things.
I’m Jody Petry, and I’m aware that I’m rare.