30 Days of PH: Balancing Work, Family, and PH Is Challenging But Doable

Photo courtesy of Kayla Marie

Day 11 of 30

This is Kayla Marie’s (@itskayyyla) story:

My name is Kayla. I’m 26 with a 4-year-old daughter, and I’m about to get married this December.

I was diagnosed with pulmonary arterial hypertension (PAH) by a heart cath on June 18, 2020, and was admitted to the hospital for treatment on July 1, 2020. I spent 13 days in the hospital, mostly in the ICU. I eventually found out I have hereditary PH. My biological grandmother passed away from PH a long time ago.

I was very down through most of my hospital stay, but my friends and family kept my spirits up. Together, we developed #TeamKayla and have been trying to heighten awareness about PH and raise funds to help researchers find a cure. I also went back to work at my receptionist job. I worked for a local doctor’s office at the time, and my co-workers, too, helped raise awareness about my disease.

Trying to work full time, spend time with my family, and manage this disease is not easy but my family and friends make it doable.

I have good days, but also very bad days when I’m so tired I don’t know how I’ll make it through the day. Even though I have those bad days, I continuously try to balance everything and make sure to keep going.

We had our first annual T-shirt fundraiser for PH this year and raised $152. That money will be donated to Barnes-Jewish Hospital at Washington University Medical Center where I will receive PH treatment in January at my next check-up.

I hope to continue to work as long as possible, but know that I can’t push my body too hard. Even if the day comes when I’m unable to work, I will continue to raise awareness about PH and to fight for a cure.

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.