When she was 5 years old, Ashlynn was diagnosed with pulmonary arterial hypertension, which is when there is high pressure in the pulmonary artery and lungs, causing the right heart to work harder. Now 13, Ashlynn continues to receive care at OHSU Doernbecher Children’s Hospital. We sat down with Ashlynn and her mom, Tammy, to learn more about their family’s experience.

Can you share more about how Ashlynn was diagnosed?

Tammy: As a parent, I always thought something was wrong even though the doctors told me everything was fine. There was just something there – I remember playing doctor with Ashlynn and her two sisters and I could hear her heart beating stronger and faster than theirs. She had been tested previously for failure to thrive but they couldn’t find anything. Ashlynn fainted on us at our home in Klamath Falls one day, and we took her to the doctor again, where they heard a heart murmur. So we went up to Doernbecher and they did an echocardiogram, and they knew right away what was going on. She was still sleeping during the procedure when they came back in the room with five people to look at the echo. That was when I knew something was seriously wrong – it was really scary. Afterward, the doctor delivered the news: pulmonary hypertension.

How has life changed for Ashlynn and your family since the diagnosis?

Tammy: The diagnosis changed our world. She had to get a right heart catheterization and spent 12 days in the OHSU Doernbecher PICU. We originally thought she would be going home with a PICC line but instead decided she could administer medication subcutaneously (Sub-Q) to lower the pressure in her heart and slow the progression of the disease. It’s not a cure. She’s on a bunch of different meds – one is a pump that stays in her arm all of the time and she wears it in a fanny pack. The team at Doernbecher taught us how to do everything, and we still see them every few months for echocardiograms and right heart catheterizations.

Ashlynn: Because of the Sub-Q pump medication, I can’t just hop in a shower, bath, hot tub, pool or lake. It takes preparation with covering and water proofing my site and pump before I can do any of those things.

Tammy: Yes, she missed out on a lot there for a while. A few years ago, I heard about this PICC line cover (see photo, right) that can go over her arm so she can swim and take baths and that was really nice. I’m so amazed with her. People see her little fannypack of medication and ask, “What’s that?” She gets up and does what she can physically, though she’s not allowed to play sports. Every once in a while, she has to slow down and stop, take her time and get her breath back. We know we’re faced with the possibility of a double lung transplant to make the pulmonary hypertension go away and save her heart, but that’s a whole new thing on its own!

What advice would you give other kids and families who are going through something similar?

Tammy: Trust your instincts. And know that the way you react to medical things – your attitude – has a huge impact on how kids are going to react. I’ve done most my crying behind closed doors. I’ve always been very straightforward with Ashlynn about what’s going on and what the future may hold. She’s so strong and brave and willing and isn’t scared to go to appointments or get heart catheterizations. I also joined some social media support communities and those were really scary at first because pulmonary hypertension is a rare condition and everyone is at such different places with it. The more I read, I realized everyone has their different medical histories and it’s actually become a pretty helpful resource for me.

Ashlynn: Be brave, never give up and think positive.