Donna Kay Hutchison, born and raised in Orange County, California, has pulmonary hypertension due to left heart disease (Group 2) and PH due to lung disease (Group 3). She and her husband Dave and their pet bunny Stretchy live close to the ocean in Bandon, Oregon, where she enjoys nature, photography, and arts and crafts.
By Donna Kay Hutchinson
Throughout my life, I have struggled with breathing difficulties. I would get short of breath when exercising, or my legs would feel like rubber bands when walking up hill. Doctors told me I was out of shape, had asthma-like symptoms and had restrictive lung disorder, but I never responded well to suggested remedies.
Several years ago, before a scheduled surgery, my doctor noticed a mild heart murmur and asked me to have a full workup with a cardiologist. After many tests, I was diagnosed with cardiomyopathy (disease of the heart muscle) and diastolic dysfunction (abnormal heart rate). A sleep study later showed complex apnea was contributing to my PH.
At the time I was scared but decided to do everything I could to take control of this disease and learn as much as I could. I found the Pulmonary Hypertension Association (PHA) and ordered some new patient resources.
I joined some Facebook support groups, but they primarily were geared to people with pulmonary arterial hypertension. So I asked four friends with Group 2 and 3 PH to start an independent Facebook group with me. Within a few months, I learned to add keywords to the group’s search criteria, such as diastolic dysfunction, sleep apnea, cardiomyopathy, HFpEF, Group 2 PH and Group 3 PH. Since then, the group has grown to more than 700 members in five years.
For several years, I didn’t work because my knee problems and my breathing issues. After I moved to Oregon, I started volunteering at a company called Washed Ashore, a nonprofit that creates huge sculptures from debris found on local beaches. We use the art to educate people about the environmental problems plastics cause. I now work part-time in the gallery and gift shop.
We lease most of the sculptures to zoos, aquariums and botanical gardens throughout the U.S. and Canada. We also display several in the gallery where I work. The gallery’s gift shop specializes in environmentally friendly products such as repurposed art and jewelry, stuffed animals made from recycled water bottles, educational books and alternatives to single-use plastics. My favorite part of my job is working with young children who visit with their families or on school field trips.
I try to keep my life as relaxed and stress free as possible because it helps me breathe easier and reduces pain. Sometimes the best things we can do for our health is to keep a peaceful environment, listen to our bodies and stay as active as our bodies allow.
Here are ways I do that:
- Remind myself that I am the only one I can control. I can’t control what others might say or think, but I can try to control how I respond to it.
- Spend time daily enjoying nature. Some days I’m able to go for a walk or hike, but other days it’s just not possible due to my health. On those days, I look out the window and watch birds on my feeder or bird bath, and I sit on the porch and listen to all the sounds around me.
- I’m extremely lucky to have moved near the ocean, and sometimes I look between the neighbor’s houses and watch how the water changes in color, sound, intensity, etc. It’s not so much where or what I look at, it’s noticing all the intricate details that help me relax.
- Take a drive through nearby neighborhoods. I look at the houses, as well as through the forest and along the coast. When the weather is bad, we often park and watch the waves crash.
- Focus on what I can still do that makes me happy instead of what I can no longer do. I can still take a short walk, work part time, play with my pet bunny, etc.
I’m not sure why all these little things help me so much. But since starting over in Oregon, we started focusing on the small things and have felt such a dramatic change.
Many of my doctors have commented that since I moved to Oregon, my health has improved. I’m really surprised that my attitude change seems to have helped my chronic pain and my PH.
To some, it may seem like a lot of work to keep life relaxed at my pace, but it allows me to enjoy life and not let PH hold me back.
PHA thanks Janssen Pharmaceuticals, United Therapeutics and CVS Specialty for supporting PHA’s Associated Disease Outreach and Engagement Program.
Donna Kay Hutchison