30 Days of PH: My Daughter Is Living Her Best Life

Photo courtesy of Jessica Nichols Johnson

Day 25 of 30

This is Jessica Nichols Johnson’s (@7261Johnson) story:

Kayleigh Johnson is a typical teenager with one huge difference. She fights for every breath she takes.

When Kayleigh was born, she had two holes in her heart. Her doctors decided she didn’t need surgery to close the holes. By the time she was 6, the holes in her heart had closed on their own, and she was released from the care of the pediatric cardiologist.

Kayleigh continued to live just like other kids her age. She played soccer, took dance classes, played with friends, and found her love for being a daredevil, always wanting to go faster and higher.

At 7, she began fainting when she exercised. She saw many doctors and had many tests. She was diagnosed with things such as anxiety attacks and asthma.

To say our world was turned upside down on July 11, 2014, is an understatement. That is the day our 8-year-old Kayleigh was diagnosed with pulmonary hypertension (PH). Within days of being diagnosed, she was started on subcutaneous (given under-the-skin) Remodulin and other medications.

At that time, I found online sources that said the life expectancy for someone diagnosed with PH was four to six years. I thought of it as a countdown. In my mind, every birthday, holiday, and first day of school was one less day we’d have with her.

Although we’ve had many ups and downs living in our “new normal,” our family has learned a great deal about PH and ourselves. Kayleigh is a brave, courageous, strong, thriving, and loving person.

This year, we celebrated Kayleigh’s seventh year since diagnosis. Her PH is now stable. Today, she enjoys texting with friends, making TikTok videos, and participating in her high school’s marching band, in which she plays the clarinet. My daughter is not a statistic and is living her best life.

Pulmonary Hypertension News’ 30 Days of PH campaign is publishing one story per day from someone who has been affected by the disease for PH Awareness Month in November. Read the full series for more stories like this, and follow us on Facebook and Instagram, using the hashtag #30DaysofPH.