Oct 13, 2020
Lindsey Doolan is a caregiver to her daughter, Paige, who is a pediatric pulmonary hypertension patient.
In this episode, they discuss Paige's PH diagnosis and the importance of the 20th Annual Virtual Race Against PH 5K/Fun Run, taking place at Stanford on November 1st, 2020 #raph20virtual
Register for the 20th Annual Race Against PH 5K: med.stanford.edu/raceagainstph
Enter this week's Time For Burpees! Contest (Oct 12-16)
Steve Van Wormer:
Hello, and welcome to I'm Aware That I'm Rare: the
phaware podcast. My name is Steve Van Wormer from Phaware Global Association. We're
bringing you another episode featuring the virtual Race Against PH 5K and
Fun Run taking place November 1st, 2020 for Pulmonary
Hypertension Awareness Month 2020.
The Race Against PH was started in 2001 by a pulmonary hypertension
patient and her family in an effort to promote awareness about this
devastating illness and the funds raised support research efforts
and are dedicated to finding new treatments and ultimately a cure
for PH.
Today our guests are Lindsey Doolan. She's a caregiver to her
daughter, Paige, who is a pediatric pulmonary hypertension patient.
They are from Santa Cruz, California. Ladies, welcome.
Lindsey Doolan:
Thank you.
Steve:
This year's race is a virtual 5K. I know you've participated in the
past with your family and friends, but this year it's going to be a
virtual race. I just want to tell the listeners what that really
means. Stanford is opening this up to anywhere that you're
listening. You can participate by running, walking, hiking,
skipping, hopping, jumping, whatever you'd like to do from any
location you choose. This is due in part of course, to the
challenges of COVID-19 and the current public health crisis
guidelines. So, we're encouraging people that are listening to
participate wherever you are. But to that end, this is the 20th
year of this amazing event. Every year, it's families, friends,
communities, doctors, pharmaceutical sponsors, and community
transcend on to Stanford to support this effort. I wanted to talk
to you ladies about why it is that you race, but more importantly,
maybe we should give a little lead up of what your connection to
pulmonary hypertension is and how Paige's diagnosis first came to
be.
Lindsey:
Paige is eight years old right now and she was diagnosed just a
month after she turned three. She was really young. We had never
even heard the words pulmonary hypertension before. It wasn't in
our vocabulary. I had never heard of it before. We are from the Bay
Area. Myself and my two young kids drove down to my parents' house
in Southern California. When we got there, they were playing and
she was running around and she had a cardiac arrest. So, we spent
three days in the hospital down there, away from home. They did all
kinds of tests. Finally, they recommended we go see our current
doctor at Stanford.
Steve:
What was your first impression when you learned of this
diagnosis?
Lindsey:
Oh, just pure, overwhelming fear. I was totally overwhelmed. I
really tried hard not to Google everything about it and just really
trusted the doctors. I was already scared and sometimes the
internet can just enhance that.
Steve:
So, it's been a few years since her initial diagnosis. How have you
seen the response to the medication she's been on?
Lindsey:
She's doing so well. First of all, the doctors that she sees are
amazing and she's able to keep up with all her friends and do PE
and do all the normal things a kid does. Her medication seem to be
working well and everything seems to be going smoothly now that
it's been five years later and we're all kind of used to this
now.
Steve:
Let me ask you Paige, when you first went to school and you had to
go into a classroom, to your teachers, your counselors and or gym
class, whatnot, how do you describe your pulmonary hypertension
illness?
Paige Doolan:
I just say that there's a bandage over my button, because that's
what we call it.
Lindsey:
Paige goes to a really small school. There's a total of 100 kids, K
through 6th grade. So, the first day of kindergarten, she got up
and explained to her whole class about her sight and how to take
care of her, because five-year-olds can be kind of wiggly. Since
then, we've grown up in the same group of classmates and everyone
just knows what Paige deals with and they respect her. They take
care of her. Everyone on campus always checks in on her. We've had
nothing but love and support from all of her classmates. Would you
agree, Paige?
Paige:
Yeah.
Steve:
Paige, are you going to virtual school at the moment because of
COVID or are you back in in-person school?
Paige:
My mom's a teacher, so I'm in personal school, still on Zoom.
Lindsey:
She is allowed to come into my classroom when I'm teaching
virtually.
Steve:
Well, what do you enjoy more, Paige? Do you enjoy the virtual
classroom or being in classroom-classroom?
Paige:
I'd rather have it with like normal people, not virtual people.
Steve:
Well, that's what's interesting about this race at Stanford. Of
course, with hundreds or thousands of people racing, it'll be an
interesting year this year with a virtual race. Why don't you tell
me a little bit about some of your experiences with your team or
your supporters that you've taken place in the Race Against PH in
the past?
Lindsey:
This is our fifth year going. It's her fifth year of diagnosis. Our
first year, it was just us and another family. Every year Paige's
support has grown. It's become an annual event for our friends and
family. Friends from school come. Family comes from all over. This
year it's exciting because all of our family and friends will be
able to join us because it's virtual.
Steve:
To that end Lindsey, why is it that you race? I mean, I understand
fundamentally as a caregiver, as a parent, but what is the real
drive to go out there every year to raise awareness for this
disease?
Lindsey:
Well, that's just that. It's to raise awareness. Like I had said
before, I had never heard of pulmonary hypertension before we were
affected by it. Also, you get a sense of community when you're
there. It feels really good to know that everyone at this race,
hundreds or thousands of people around you are all fighting for the
same thing. It feels really good that each year, our little group
of supporters have grown, as well.
Steve:
Paige, when you go to these races, I'm assuming you run into your
doctors or your nursing team. Have you come across them in previous
years?
Paige:
Yeah. Sometimes they're even on stage talking.
Steve:
And dressed up in like superhero capes and stuff like that,
right?
Paige:
Probably.
Steve:
To anybody that's listening that's never taken part in this race or
has not learned about pulmonary hypertension before, what do you
think you'd like to tell people that might be listening to this?
Why this disease is important or why it's important to you?
Lindsey:
What I would like to say to anyone who has never raced in this race
or hasn't heard of pulmonary hypertension before is that it's an
illness that affects people's daily lives. I just want to bring
more awareness to it, because the more awareness, the more medicine
that can be developed. The more clinical trials. More awareness
usually equals more money, more money equals better medicines,
really ultimately.
Steve:
What is it as a caregiver that you would like to let people in on
that might be hearing about this disease for the first time?
Lindsey:
This illness is so complex and the treatments are also just as
complex. I think early on, I really doubted myself and my ability
to care for Paige. I'm not a doctor, I'm not a nurse. I didn't go
to school for that. But as the years go on… I'd like to talk to the
parents or the caregivers of anyone who might be affected with this
illness. As the years go on, you become more confident in your
ability to care for your loved one. Paige is on a subcutaneous
medicine. It was really, really intimidating at the beginning. It
was a lot to handle on top of just her diagnosis alone. So, I would
just like to say to anyone who's listening, who might be feeling
like it's overwhelming, I'm five years into it and I'm just now
feeling really confident. I know that those caregivers who are out
there, you can do it. You're strong enough. You got this, and you
have so many people rooting for you and your loved one.
Steve:
This has been a very crazy year. As we wind it down, what is your
hope or vision for 2021 as you look ahead to the year ahead?
Lindsey:
First and foremost, I hope for COVID-19, for us to get some kind of
vaccination or end to that, just because it puts our PH patients at
such a higher risk. And of course, every single day, my wish, my
hope is for an ultimate absolute cure for PH. That's going to
always be my number one prayer and wish until the day it
happens.
Steve:
How about you Paige?
Paige:
Well, like she said, I want a vaccine for COVID-19 and for PH.
Instead of the button, I also wish that we can only take medicine
and not have to have like a button --
Lindsey:
...A site.
Paige:
Oh yeah, a site on you all the time.
Lindsey:
This race is super near and dear to our hearts and we're looking
forward to be able to share it with all of our friends and family
worldwide this year, since it's going to be virtual.
Steve:
Well, speaking of having a virtual event, there's also some virtual
contests happening every week as a lead up to this race, again,
happening on November 1st. For week two of this lead up to the race
is a contest called Time for Burpees, and that's
taking place October 12th through the 16th.
For this week's contest, instead of focusing on a six-minute walk,
we'd like to have people take part in a six-minute burpee contest
for week two. Now, the first thing I wanted to know was what is a
burpee? A burpee is a squat thrust with an additional stand between
reps. It's a full-body exercise that uses strength training as an
aerobic exercise as kind of a warmup to people that are taking part
in these races or events. It's a basic movement performed in four
steps, known as a four-count burpee. It's all explained on the Race
Against PH website. I'll have a link in the description here, but
that website is www.med.stanford.edu/raceagainstph.
So the object of this contest is to see who can do the most
burpees in six minutes. Go as fast as you can, or as slow as you
like. We just want to see you, frankly. Wear your favorite Race
Against PH t-shirt or anything else purple for that matter. If you
decide to do that contest, please let us see it, have somebody
shoot it for you or shoot yourself. The rules are on the website.
We'd really like you to upload some videos and see you getting your
burpee on. To make sure you have enough time to upload the video,
you have to upload it before October 16th at 3:00 PM. Again, all
the instructions are on the www.med.stanford.edu/raceagainstph
website. This contest is sponsored by Sports Basement.
Ladies, I thank you so much for sharing your story, sharing your
history with Stanford and the Race Against PH. We look forward to
seeing you virtually with your friends and family, but thank you so
much, Lindsey and Paige for being here today.
Lindsey:
Thank you so much.
Paige:
Thank you.
Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Never miss an episode with the phaware® podcast app. Follow us @phaware on Facebook, Twitter, Instagram, YouTube & Linkedin Engage for a cure: www.phaware.global/donate #phaware #ClinicalTrials @PHatStanford