Paige Zils and Lindsey Doolan - phaware® interview 390
Nov 3, 2022
In this episode, pulmonary hypertension patient and @PHatStanford #RaceAgainstPH 2022 Pediatric PH Courage Award recipient, Paige Zils (10) and her mother Lindsey Doolan, discuss Paige's PH diagnosis and the importance of a great care team.
Don't miss the 22nd Annual Race Against PH at November 22 hosted by the Vera Moulton Wall Center for Pulmonary Vascular Disease at Stanford. Click here to learn more.
Lindsey:
Hi, this is Lindsey.
Paige:
I'm Paige.
Lindsey:
I am Paige's mom, and Paige has pulmonary hypertension. We live in
Santa Cruz, California. She is 10 years old, but she was diagnosed
when she had just turned three. We were at my parents' house in
Southern California. She was running around like any normal kid,
but she had turned blue and lost consciousness. She had a cardiac
arrest, the whole nine yards. One sister took over calling 9-1-1.
Another one was doing the Heimlich and then CPR. Just doing
anything she could. I was kind of in a state of shock, not really
knowing what was going on.
We were taken by ambulance to the closest hospital to my parents'
house. I was told that she must have just been dehydrated. I knew
that wasn't the case, because we'd been in the car all day. We had
been in the car for six hours, and she hadn't exerted herself that
much that day. We had to take another ambulance to a second
hospital that night who did have a pediatric ward suitable for her
case.
They started doing all kinds of tests. They checked her for if it
was a seizure, I mean anything under the sun they did. On the third
day we were at the hospital, they wanted to bring in a pediatric
cardiologist to talk to me. That was the last thing I wanted to
hear as a mom of a barely three year old. The cardiologist came in
and explained some things. Of course, I didn't hear any of it,
because I was so overwhelmed. She did say, "I think she might have
this condition, pulmonary hypertension." She said, "Where do you
live?" Because we were in Southern California and I said, "We live
in Santa Cruz." She was like, "Great. Stanford is up there and I
will write you a referral, but whatever you do, don't Google
pulmonary hypertension until you're able to talk to someone."
I took that to heart, because I was already freaked out enough, and
so I didn't want to freak myself out more. About six weeks later,
we got into a pediatric cardiologist up here, up in Santa Cruz. She
was wonderful, but it took six weeks to get in. It was just so hard
waiting, not knowing what was going on. We finally got in and she
said, "This is what I think she has. If you don't hear from
Stanford by next week, let me know." Of course, I got a phone call
from them and her whole team the next day. Paige and I were at
Stanford the following day. From there everything went quickly.
They've just taken such incredible care of her. They've been on top
of it since day one.
After she was seen and diagnosed properly, she quickly got on a
variety of medications, one of them being Remodulin, where she had
a pump, and she had subcutaneous medicine flow 24 hours a day. I
just remember being so overwhelmed and thinking to myself, "I can't
possibly do this. I'm not medically trained." I remember the nurse
who came to my house to train me being very stern saying, "If you
don't do this right or if it gets dislodged, she will go back into
cardiac arrest." So I felt an extreme amount of pressure on top of
this new diagnosis for my child. It was an overwhelming period of
time where I wanted to fall into a depression, and I also was super
anxious and worried about not being able to care for my child. It
was this weird dichotomy, but we figured it out.
The longer she was on the pump, we found ways to keep her site
lasting longer at the beginning. Sometimes it would last only three
days. By the time she got off the pump, which was just earlier this
year, she was able to keep a site for up to three months. So there
was a huge learning curve, and the only thing I can say to people
or parents who are being introduced to anything like this is that
you've got this. You have to trust yourself. I had to experiment
with the application of the medicine to figure out what worked for
Paige and her skin. The doctor supported me on that. It was
extremely hard for me. Obviously for Paige, and even for her
brother, because when we would have to do a site change, it was
traumatic. People often forget about the siblings of children with
medical issues.
Paige:
I had to really learn about this because I didn't know what to do
or how to do it when I first got PH at that point. I couldn't
understand what all this meant because I was just three years old.
It was really hard for me.
My friends have been really understanding about it. They've never
really treated me any different because of my condition. I never
really told my teachers about it or aids. My mom works at the
school, so she was really the only one who told all of them. But I
was the one to tell all of my friends. They were really
understanding about it.
Lindsey:
We're really lucky because I work as a teacher at Paige's school.
I'm there all the time. When she had her pump, if it started
beeping or if it accidentally got turned off, all the staff knew to
just come get me. I felt comfortable with her going to school
knowing that I would be down the hall. I feel very lucky. In fact,
she was in my class for one year. We also are at a very small
school. There's only about 120 kids total. That makes it very
unique in the fact that people are aware of Paige when she was
wearing her pump to be careful with her. On her first or second day
of kindergarten, she got up in front of the class and told her
class about her pump and to be careful and not bump into her. When
she was younger in the younger grades, she really had to advocate
for herself to protect herself.
But now that she's older, it's just so nice that she's able to be
in the same place as me. When she's not feeling well, she comes
straight to my classroom. It's just something that I couldn't
imagine not having as a parent. It's something that I'm so grateful
for. Since we are at a small school, we never really rushed to get
her a 504. She's in fifth grade this year. We recently worked
towards refining a 504 for her so that when she does move on to
middle school and high school, she'll have a plan in place. I
cannot assume that every school is going to be like her second
family, especially once she moves on to middle and high school.
Just earlier this year, Paige was able to transition off the pump,
off Remodulin. We started titrating her up on Uptravi. The reason
for this was because the last couple heart catheterizations that
she had just continued to show improvement. Taking into the fact
that her catheterizations were coming back improving each time, and
considering the quality of life she could have without the pump;
being able to go swimming, not having to have to go through site
changes, the whole nine yards, we decided that we were going to
give it a try.
We were in the hospital for a few days, and she came home. We
slowly titrated her up. The problem is she has several symptoms
from her new meds. Eight, nine months later, she's still
experiencing some of them. She will sometimes get migraines. She
often gets stomach aches if she doesn't eat enough, which is hard
as a parent to get your child to eat enough sometimes to take her
medicine. So there's different challenges with this medicine.
When she had just gotten on this new medicine, she was at school. I
don't know if it was the nausea from the medicine or wearing a mask
with the heat outside, but she passed out. So again, just me being
able to be there and being able to take action and call her doctors
right away was a gift that I'll be forever thankful for. Luckily,
she was okay, and we did some changes and tweaks in her medicine
routine. She's been great ever since minus the stomach aches and
headaches.
Paige:
Life has been hard, but I've gotten through it for about seven
years. It's been changing what I can do. I wasn't able to swim or
go in the water without something covering my arm. So I couldn't
swim that much. I couldn't do a lot of activities. I couldn't run
so much because that would maybe make me pass out or something like
that. I couldn't do any activities, at least fun activities. I
could stay inside, but I've been doing junior lifeguards this
summer. It was hard, but it was still easy enough for me to do it.
It was after I got off my medicine. My doctors have been treating
me really well. Without them, I don't think I would be this far in
life. They're super kind and funny. They've helped me a lot.
Lindsey:
Paige's team has been wonderful at Stanford. They answer any
question, whether it's a silly question or not. They are always
responsive. They get back to us right away. If her dad or I have a
question, they're always willing to help and to brainstorm with us
about different ways we can go about doing things. They talk to us
in a way that we understand. They're really there for their
patients every single day. I am so thankful for all of them. Dr.
Feinstein, for Michelle, all of them. They've just been so
incredible in answering questions and caring for Paige.
Paige:
Stanford, my hospital, does a really exciting event called
Race
Against PH to raise up money for medicine and
equipment to help people like me who have pulmonary
hypertension.
Lindsey:
We're especially excited to go this year for a couple reasons. One,
we haven't had it in a couple years because of Covid, but we're
really excited because Paige is being given the 2022 Pediatric PH
Patient Courage Award. She's being honored for all that she has
gone through. All the courage and bravery that is in her, and for
pretty much how awesome she is.
Paige:
If I could give any advice to a kid or adult or anyone like me who
comes into Stanford or anywhere, it's
a part of your life. You kind of just have to go with the flow. You
also need to eat a lot, and I've had a hard time with that. And
just listen to your parents. Your parents really know best.
Lindsey:
If I could give any advice to a caregiver of a child with PH, more
than advice, I would just give them a hug and tell them that
they're doing everything well and that they're going to be able to
do this for their child and not to get too overwhelmed. I would
advise them to have a friend or a community that they could talk to
and turn to ask questions. Just don't give up.
Paige's dad and I are so proud of the way that she's handled all of
this. I know that there is no one else in the world that deserves
this as much as Paige does. One thing that her doctor said when we
heard about her receiving this award was how impressed they are
that she's able to speak for herself in the doctor's appointments.
That she's able to advocate for herself. That she speaks up when
she's having symptoms, whether it's a side effect from her medicine
or tired from her PH. Paige really deserves this award just for all
the hard work that she's been through. All the bravery. I know that
she's going to be her number one biggest advocate going
forward.
Paige:
My name is Paige…
Lindsey: And my name is Lindsey…
Paige/Lindsey:
And we’re aware that we are rare!
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