I'm Aware That I'm Rare: Jennica Clasby

Pediatric pulmonary hypertension caregiver, Jennica Clasby shares her family’s story.  Jennica discusses the challenges of moving across country to sea level and leaving their support system behind in Colorado.

Transcript:

My name is Jennica Clasby from Arlington, Washington.

I have a daughter, 9-year-old Brooklyn Clasby who was diagnosed with Idiopathic Pulmonary Arterial Hypertension (IPAH) when she was 3 years old. She was immediately started on treatment, she was already in severe heart failure at the time of diagnosis. At the time we were living in Colorado, and so she went directly to Colorado Children’s Hospital where we met Dr. Ivy and started on her treatment.

I had no idea what pulmonary hypertension (PH) was. We had showed up in the ER, so she had gone over and had this echo and they called us and said, “Get her to the ER, they’re Flight For Life-ing her to Denver” and the doctor came to us and he said, “She has pulmonary hypertension, this is very serious”. We just had this thought, “Oh, we’ll just go up to Denver and they’ll just fix whatever the problem is and we’ll be on our merry way”. We had this child who looked completely healthy and we had no idea what we were in store for.

She was immediately started on IV, so that was a huge change to begin with, learning that whole process of doing sterile procedures and no longer being able to swim without a dry suit, and really just everything that came around the medication part of it. After two years, the doctor also recommended that we move to sea level because she wasn’t getting much better. She was stable, but not much better on all treatments. We decided to move to Washington because it was a lot like Colorado, and our family still needed our mountains.

So we moved to Washington which helped improved her exercise tolerance a little bit, she was now able to ride a bicycle, which she wasn’t able to do in Colorado. We still didn’t see any improvements in her pulmonary hypertension, so that was a little disheartening to not see that improvement. We had hoped that her pressures would maybe improve, but unfortunately it didn’t. It was very challenging because all of our family and our entire support system was in Colorado. But on the other hand, it’s kind of fun to just have to pack up and go on this new adventure and that’s just kind of the way we chose to look at it is, “Hey, this is just an adventure that God is sending us on and we’re just going to go to Washington and see what happens”.

We had never even been to Washington before, but we just went and drove a car and said we’re going to drive around until somewhere spoke to us and this perfect, cute little organic farming town just popped out and really is just the best community, about 40 minutes from Children’s and has really embraced us. We love it there and our kids are all thriving there, all three of our children. It really turned out to be the best thing and we really just tried to have a great, positive attitude and more excitement about it then really dwelling on the fact that we were leaving everything we ever knew.

After a couple of years, she began to decline and we decided to do an experimental surgery over doing transplant. Two years ago we opted for the Potts Shunt, which is where they connect the pulmonary artery and aorta, so most of her blood bypasses her lungs and just goes down into her aorta. At the time that we did that, she was incredibly sick. She couldn’t walk 10 feet without being very short of breath, and was no longer gaining weight or growing or really thriving at all, so we opted for this Potts Shunt over a transplant because we can get it done quicker. Transplant was going to take quite a bit of time for her. The surgery was very rough and very scary, but as soon as she turned that corner in recovery, she has just done amazing. She’s now gaining weight and thriving, and she’s playing sports, she played softball this last spring and really is just doing fantastic. She was able to be weened off of her IV medications to where now we’re just on all oral medications, a total game-changer for us.

Brooklyn is our middle child, so she has an older sister who’s two years older than her and she has a younger brother. I was six months pregnant with her younger brother when she was diagnosed. This is all he’s ever known, so he doesn’t really care either way, this is just Brooklyn and he still wrestles her just the same way that he would anyone else. Her older sister seems to be a different story. She remembers a time when this wasn’t our normal and this wasn’t the way we were living our life. She’s pretty sensitive and she worries about those things, but it’s also driven her in a different way too. She’s only in seventh grade now but very focused on going into the medical field and helping and she’s talked a lot about developing some sort of foundation for the siblings of sick kids. She recognizes that there is a need for the siblings of kids, and whether it be a camp or some sort of very small Make A Wish type thing, but for the siblings. So that’s something that she really aspires to do. I think it’s driven her in a different way. She’s never been jealous or upset over those things but it’s just made her want to do something with it. It’s been impressive to watch.

I’m Jennica and I’m aware that I am rare.

Listen to “I’m Aware That I’m Rare: the phaware™ podcast” at www.phaware.global/podcast. Learn more about pulmonary hypertension at www.phaware.global. #phaware