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I'm Aware That I'm Rare: the phaware® podcast

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Claire Parker, PNP - phaware® interview #134

Mar 6, 2018

Claire Parker is a pediatric nurse practitioner at UCSF Benioff Children's Hospital who specializes in the treatment of pediatric pulmonary hypertension, a type of high blood pressure affecting the lungs and heart. She also participates in several clinical trials for medications used to treat pulmonary hypertension. In this episode, Claire discusses the Pulmonary Hypertension Family Weekend taking place March 9-12 at The Painted Turtle, part of the Serious Fun Camp Network.

Hi, my name is Claire Parker. I am a pediatric nurse practitioner with the Pulmonary Hypertension Program at UCSF, and I helped to establish our very first pulmonary hypertension family camp weekend with The Painted Turtle.

When I started with the PH team here at UCSF, Jeff Fineman, our Medical Director, had really wanted to do a summer camp for our kids with pulmonary hypertension for a while. Pretty straightaway, I got in touch with The Painted Turtle and found that they were a really wonderful partnership, in that they have a very already-established camp for kids with chronic illnesses. It's part of the Serious Fun Camp Network, which was founded by Paul Newman. Their mission statement is to reach beyond illness and to inspire kids with life-threatening diseases to become their greater selves, and that really fit in line with what we wanted to do.

Very quickly, they agreed to take us on as a family camp weekend, meaning it would be a long weekend in the spring, and not only the patients would come join us, but their siblings, their parents, really anybody that lives in the household with them. So, we had aunts and uncles and grandparents come join.

Throughout kind of the planning process, I met with several of the members of The Painted Turtle pre-camp and then helped run the show while we were there as well. But they have the infrastructure already created. They have this beautifully established campus that has a lake with boating and fishing, and horse stables, and a huge ropes course and zip line, and a swimming pool, and a gymnasium, and archery, and workshops for arts and crafts and for woodworking, and a lovely cafeteria-common space and these beautiful cabins.

And because they already have had the programming down from running these camps with other illnesses, it made it very easy for us to jump in and bring them a new diagnosis, and we kind of threw the curve ball for the medical stuff towards them. But they backed it up with all of their already wonderfully established programming.

2017 was our first year at camp. We brought 22 families from both UCSF and from the Stollery Children's Hospital in Edmonton, Alberta, Canada. We brought everyone there free of charge. We did quite a bit of fund-raising to provide full transportation and essentially pay for the entire weekend, so the families didn't have to worry about cost. This year we're hoping to bring closer to 30 families. We've got some new kids that are graduating kind of into the age range where they qualify for camp, and we hope to continue to grow from here.

The Painted Turtle medical staff knew a little bit about pulmonary hypertension, but no one actively had real experience in caring for kids with pulmonary hypertension and knowing the types of medications they were on. They had dealt with many kids with oxygen or wheelchairs, and kind of the mobility issues, but the idea of a Remodulin pump or an ERA or a PDE5 was a little bit more foreign to them. So we worked with them to do several trainings ahead of time and kind of gave them the basics of the pathophysiology and how the drugs work, and what might happen if things go awry.

But the other thing we did is we brought a lot of our staff with us: myself; Jeff Fineman; our other nurse practitioner, Elizabeth Colglazier; Hythem Nawaytou, our cardiologist; several nurses from UCSF. We had a few respiratory therapists as well that joined us, and some of our ICU docs, as well. And then also, the Stollery brought a few physicians and nurses, which was wonderful, because they intimately knew their patients as well, so we could kind of pinpoint if things were not looking great for any of these kids.

Almost none of the kids there had been to a camp like this. I think there's something kind of magic and powerful that happens at camp and when you bring kids with chronic illness to a very normal childhood experience. Right away, as soon as they got off the buses, there were smiles and laughter, and before we knew it, very quick friendships were formed between the children. I think that camp does an amazing job of making those items that make our kids with pulmonary hypertension stand out in the community just fade into the background. And hearing somebody say, "Oh yeah, my brother has a Remodulin pump, too." It's no big deal. And seeing somebody else with a nasal cannula is just, it fades into the background. It's just another accessory. And I think that really allows kids to be their best selves.

I think a lot of children with chronic illness and pulmonary hypertension hear, "Oh no, you can't do that," or "Maybe not. You know, you've got your oxygen." But at camp we say, "Yes, you can. Absolutely." We're not going to let a Remodulin pump or oxygen tubing ... or we even had a girl with a VAD, (a ventricular assist device), essentially an artificial heart pump in a backpack, with us that weekend, and we put them on the zip line. We put them on horseback. We let them go fishing and boating. We had kids with trachs as well. I discovered that one of our 16-year-olds with a trach plays the guitar and sings beautifully in our talent show.

And I think it leads to some increased confidence. I think it leads to increased independence, leadership skills, and really, I think most importantly, some increased self-worth. And I think it's kind of nicely illustrated by a story of one of our campers. I stood there with him and his mom as he was getting ready to go up the ropes course, and he was standing there in his helmet and his harness, and he wasn't quite sure if he could do it. And he stood there and looked up nervously, and we kind of reminded him, like, "It's just challenge by choice. If you don't want to do it, it's okay, but it looks pretty fun." And his brother was up there, and some of his new-found friends, and he decided, "Yeah. Yeah, I'm going to do it." He had an oxygen tank with him, which he couldn't bring up the ropes course, and so we unfurled over 50 feet of oxygen tubing and hoisted him up there.

And he made his way across the bridges and over the platforms, and he finally got to the area where the zip line was, and at the top they had a pile of superhero capes. He took one, and he put it on, and when it was his turn, he just totally, confidently jumped off that platform. He kicked his leg out, and he did this cool Spider-Man pose, and he flew down that zip line. His mom and I greeted him at the end, and he gave his mom a big hug, and he turned to me and he said, "Claire, Claire, did you see me? I was incredible!"

And I laugh every time I think about that, because I think most adults, or I think most people without chronic illness, would have said, "What a rush, what an amazing experience." But he said, "I was incredible," because he did something that even 30 minutes before, he didn't realize he could accomplish. It was a moment of pride, and he was so just enamored with this fact that he could do something he didn't think he could. And I think that that is the magic and power of camp right there.

My name is Claire Parker and I'm aware that I'm rare.

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