30 Days of PH: An Accredited PH Center Gave Us the Support We Needed
Day 12 of 30
This is Irene Chipounov’s (@irinachipounov) story:
Our 8-year-old daughter, Karina, was born with a right-sided congenital diaphragmatic hernia (CDH). She spent the first six months of her life in the NICU at Rady’s Children’s Hospital in San Diego, California.
Karina underwent one surgery to fix her CDH with mesh and another for intestinal malrotation and G-tube placement. She was diagnosed with pulmonary arterial hypertension and chronic lung disease at birth because of CDH.
Karina was discharged from the hospital with severe pulmonary hypertension (PH). She started on sildenafil, and a cardiologist added Tracleer to her regimen. When she was 2 and these meds hadn’t lowered her pressure, Karina was placed on Remodulin via subcutaneous (under-the-skin) injection.
San Diego doesn’t have a pediatric PH specialist, so we contacted the clinic at UCSF. It was the best decision we ever made! There, we received the support we needed that the local hospital couldn’t provide.
Karina was on Remodulin for three years. It dropped her PH numbers four times, but she struggled with skin sensitivity from the adhesive tapes and injection site rejection.
Our child didn’t have a normal life due to pain medications and the stress from changing her injection site every two weeks. Fortunately, her pressure was stable enough to try the Tyvaso inhaler, a different method of receiving treprostinil. Her pressure didn’t change but her quality of life improved dramatically.
Karina is loving and optimistic, despite all she has been through: hospitalizations, catheterization, viruses, and an airlift to UCSF. She also is artistic, sings in six languages, plays the piano, and loves to dance. She was excited when the Make-A-Wish Foundation granted her wish to record her own song in a professional studio.
We look forward to Karina excelling in the future despite this horrible, incurable disease, and we look forward to a cure. May all PH kids and their parents stay strong and seek treatment from an accredited PH center!
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.