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Lindsey and Paige Doolan - Race Against PH - phaware® interview 344

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.

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