Mar 27, 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. 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.
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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