30 Days of PH: Seeking a New Normal With a Lung Transplant

Jennica Clasby’s daughter, Brooklyn, was diagnosed with PH at age 3. (Photo courtesy of Jennica A. Clasby)

Day 18 of 30

This is Jennica A. Clasby‘s story:

When our daughter, Brooklyn, was diagnosed with pulmonary hypertension at the age of 3, the doctors continually used the phrase “new normal.” Little did we realize at the time that we would also frequently use it in our own family over the next 13 years.

We moved from our home in Colorado to sea level in Washington state to better accommodate Brooklyn’s condition. She has been on a variety of treatments since her diagnosis, from continuous IV medications to oral and subcutaneous forms of Remodulin (treprostinil). She also underwent Potts shunt surgery eight years ago as her condition declined, which helped to keep her progression stable and improve her quality of life.

In December 2021, Brooklyn was a freshman in high school and treating her pulmonary hypertension with subcutaneous Remodulin and other oral medications. She was doing well overall. Then she contracted COVID-19, but had only a mild case, which almost made us feel silly for how much we had worried throughout the pandemic.

But a month after her COVID-19 infection, she ended up in the hospital with low oxygen saturation. She spent five days in the hospital and was released with oxygen 24/7. That was the beginning of a quick decline in her health.

Brooklyn’s oxygen levels would drop to a dangerous level when she walked short distances. Every option was exhausted to help treat her symptoms. In July, doctors decided to refer her to the University of Washington’s Lung Transplant Center.

Brooklyn was admitted to the hospital in July to have a central PICC line placed, and she started treatment with milrinone, which is used to help protect the heart while she awaits transplant. We have been going through the transplant work-up, and as of Oct. 11, she is actively on the lung transplant waiting list.

We know this will be a tough road, but we are anxious for the possibilities that it can bring for her. With every new normal, there have been times of stress and discouragement, but also times of gratitude and hope for the future.

Read Jennica Clasby’s “30 Days of PH” story from 2020, “Quality of Life Improved by Potts Shunt Surgery.”

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.