I'm Aware That I'm Rare: Claire Parker, RN

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. Claire also participates in several clinical trials for medications used to treat pulmonary hypertension. She often serves as a moderator for the nursing workshop at the International Conference Neonatal and Childhood Pulmonary Vascular Disease. In this episode, Claire discusses her role as PNP and how PH impacts the entire family, including patient, parents and siblings.

Transcript:

Hi. My name is Claire Parker and I’m a pediatric nurse practitioner with the Pulmonary Hypertension Service at UCSF Benioff Children’s Hospital.

My role as a nurse practitioner is pretty multifactorial. I follow children with pulmonary hypertension both in the hospital and out of the hospital. I’m there from the beginning from diagnosis through all of the work up testing that’s done, through getting kids out of the hospital and home, and doing checks with them in clinic. We know their medications. We know their diagnoses but we also know what activities they like to do at school and who their siblings are, and where they’re going on vacation, and what they like to do in their free time. It’s a very special bond and I feel incredibly privileged to be a part of this team.

Pulmonary hypertension is a disease that not only affects the child, but it completely affects the entire family. I have so much respect for the parents of kids with pulmonary hypertension, because it encompasses their entire lives. They become medical experts in probably an area that they never wanted to know anything about. They become nurses. They become historians. They understand their children probably just as well, if not better than most of the medical team. It’s not an easy disease to live with. I think that these families often feel very isolated because it’s a very rare condition. We have some families that have never met another kid with pulmonary hypertension and they have to rely on the support from online chat groups, online resources, such as phaware and I can’t imagine being in their shoes.

I think a lot of times, kids are incredibly resilient. They don’t let chronic illness or pulmonary hypertension stop them from doing what they want to do. I think that parents are often more anxious and over vigilant, because they know the consequences and they’ve read the medical material and they know what could happen, which is terrifying. I think kids just tend to fight through. They surprise me at every turn when we think that they are not feeling well and feeling sick, they still just want to play and be kids.

We have a wide variety of siblings. Some are older and some are younger than the patients. We have had older siblings help care for the patients. They do teaching on the sub-Q pumps or the oral medications and help with that. Often, I find that parents are trying to relieve them of that burden. We have many younger siblings that the attention kind of goes away from them, especially when the patient is in the hospital. I think it’s got to be a really hard position for parents to be in to be able to balance the love and attention and care for both their well child and their sick child. We often try to involve groups like Child Life. We have our family camp, which involves the siblings because I think that they sometimes need to remember that they’re just as important and just as loved and just as cared for as their sick sibling counterpart.

We have not had many issues with compliance at all actually. We’ve been very lucky and that all of our families are very responsible and I find that the kids get into the routine and many of them feel better when they’re on medications or on treatments, so they tend to stick with it. We do see periods where it gets tough, where sites for sub-Q pumps, they’re going through them rapidly. They’re having a lot of site pain. It may not be something that they want to do, but they tend to persevere through it. We also have had some teenagers that have taken some deep moments of thought about what they really want for their quality of life. We haven’t had anybody decide to go off therapy because of quality of life issues, because I think we are seeing more hope and we’re seeing kids live longer and transitioning into adulthood.

I think seeing our patients graduate to the adult program, it comes with mixed emotions. There’s a source of pride and I feel really impressed and proud of these kids for making that adult leap. It takes way more autonomy and independence. They’re going to have to rely on themselves and they’re going to be responsible for calling their pharmacies and managing their own medications and not necessarily have so much handholding as we do in pediatrics. In some ways, it’s a little bit hard to let go of that control and let go of knowing that we’re the ones that are going to be watching out for them because we do grow to care for all of our patients, not only due to their medication regime, but just knowing them as people and for the person that they really are.

I think that the best piece of advice I could give for a newly diagnosed family would be take a deep breath. Know that we’re going to explain all of this to you over and over again as many times as you need. Take some time to look at all of the options. Read up from websites and articles that have been recommended by your medical team, and know that we’re here with you every step of the way and we’ll be in this together.

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

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