Morgan Nuchols, 28, is a member of the Pulmonary Hypertension Association’s Generation Hope Facebook Support Group. The group is for people with pulmonary hypertension (PH) between 18 and 39 years old. Morgan, of Torrance, California, enjoys puzzles, singing songs from her childhood and playing with her 14-year-old dog Lucy.
By Morgan Nuchols
I was born on July 26, 1993, with congenital diaphragmatic hernia, which is a hole in the diaphragm. It occurs during fetal development and can cause organs to be pushed into the chest. My left lung was abnormally small.
As a child, I had four surgeries to repair the hernia. I was on oxygen from birth until I was 6. After that, I needed it mostly at bedtime.
I began to show signs of PH as a baby. My skin would change from blue to purple to bright red. My PH was found after an echocardiogram when I was 8.
Around the time of my diagnosis, I had many seizures and quickly gained weight, which was all fluid. All babies with congenital diaphragmatic hernias have PH, but some grow out of it as their lungs get larger. But PH can return, like it did for me.
After my PH diagnosis, my cardiologist said that I needed to be on oxygen fulltime. A few years later, I started my first PH medication, Tracleer. I was also on sildenafil and later nitric oxide.
Despite my conditions, my life was as normal as possible. My oxygen tank was part of me, and I knew that it helped my lungs and heart. I was aware that I had a few scars, but I didn’t know their back story.
After my final diaphragm repair in 2007, my PH was horrible. I had to be fed through an IV until 2015. At the same time, I was on a diuretic and took iron supplements.
I found the PH community in 2015. It helped me learn more about PH, and I met other patients. About a year later, I found the congenital diaphragmatic hernia community. I’ve been helping both communities ever since.
I looked into genetic testing and sent saliva samples, as did my parents, to help with congenital diaphragmatic hernia-PH research.
I’ve kept healthy during the pandemic, and I’m fully vaccinated. A lot of my childhood symptoms disappeared as I grew up. I get worn out with certain things, but not everything. My shortness of breath comes on only when I do too much around the house.
Life is like a rollercoaster. There are many ups and downs and a lot to learn along that way. I have a lot of hope for genetic research for both communities.
Morgan shares her story as part of PHA’s 30th anniversary celebrations. If you’re a long-term PH patient or caregiver, submit your story
to PHA’s Right Heart Blog. Read more first-person stories from people with PH
, caregivers, families and friends.