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Jamie and Diana Cruz - Race Against PH - phaware® interview 346

Oct 27, 2020

Jaime Cruz is a caregiver to his daughter, Diana, who is this year's Pediatric Courage Award Winner of the 20th Annual Virtual Race Against PH 5K/Fun Run, taking place November 1st, 2020.

In this episode, they discuss Diana's pulmonary hypertension diagnosis and how she navigates this disease. #raph20virtual

Register for the 20th Annual Race Against PH 5K: med.stanford.edu/raceagainstph

Register to watch the LIVESTREAM event Sunday 11/1 @ 9am PT: 
https://us02web.zoom.us/webinar/register/WN_gu-7DZyuRIaNTFjRRMTd7w

Enter this week's Costume Contest (Oct 26-30) 

Steve Van Wormer:
Hello, and welcome to, I'm Aware That I'm Rare, the phaware®podcast. I'm your host, Steve Van Dormer, from Phaware Global Association and today we're bringing you the last of Stanford's 20th Annual Race Against PH podcasts that are pointing to this great event taking place virtually November 1st, 2020. Today, we've got a real great pair of guests for you here, Jamie Cruz and his daughter, Diana Cruz, who's a 15-year-old pulmonary hypertension patient. They are from Sacramento, California. Jamie and Diana, welcome!

Diana Cruz:
Hi.

Jamie Cruz:
Hi.

Steve:
So Jamie, tell me a little bit about what led to Diana's diagnosis. When did you know that something just wasn't right with your daughter?

Jamie:
When she was little, she would get tired and purple in her face and it was hard for her to breath. At the time, it was happening more and more. One time, she fainted, so we had to take her to emergency room. They didn’t know what caused that, so we come back home. When she relaxed, she would come back to normal. That happened three times. The third time, she got really bad, so that's when we had to do more studies to see what was causing this. Finally, a cardiologist here in Sacramento, contacted Dr. Jeffrey Feinstein in Lucile Salter Packard Children's Hospital.

Dr. Feinstein [along with Dr. Rachel Hopper and Michelle Ogawa, CPNP] started to think about the pulmonary hypertension. That was the problem with Diana. We had to take her to Stanford. They did a lot of studies for almost two months. They finally found that it was high pressure in her lungs, so they start to give her some medication. The first medication she took was Remodulin® (treprostinil) injection. That is what she's on right now. That medication is working really good for her. Basically, she can do normal things like, walk, run, go to school. She’s fine with everything. It's good medication. We are glad that we’ve have that medication for almost 10 years for her. She's fine now. I mean, she's [still takes] the IV medication, but she's fine.

Steve:
Diana, what was some of your earliest memories that something was going wrong with you?

Diana:
I remember fainting. I feel like that's one of my earliest memories. I don't remember a lot what happened before when I was really young. I just remember in first grade, I would faint and a lot of stuff like that would happen to me. Well, I always knew what I had, because I had this pump on me, so it was kind of obvious, but as I grew older, I knew what was going on. Basically, if it was really hot, I wouldn't go outside, because that would make me faint. So, I took precautions and that made it better too.

Steve:
As a young girl in elementary school or even going through middle school. How did you navigate that, all those years?

Diana:
In elementary, I used to have a bigger pump, but obviously now it's developed into a smaller one, so it's much better for me. It doesn't really affect me in any negative way. I see it also in a very positive way, because I'm here so that makes it better. But you shouldn't be worried at all. You're going to be fine. It doesn't matter. If you have the pump that I have if you're worried about people teasing you or bullying you or something, you can't even see it. It's pretty small. I've never had problems like that. I just live my life.

Steve:
Tell me a little bit about your experience at Stanford at the Race Against PH, which again is happening November 1st, 2020. I'm assuming you've been to more than a few of these races along the way, correct?

Diana:
Yes. I've actually only been to one though. I never really knew about them until like two years ago. That race it's great. Especially if you're the one that has pulmonary hypertension. It's fun to go to and you just see everybody supporting.

Steve:
Do you and your family have a race team? Is it just you and your father or do you have other friends and family or community members that have raced along with you in the past?

Diana:
Oh yeah, for sure. My mom was with me. She's a great person. She was there with me, my cousins and my father, yes. My father was there too. It was good.

Steve:
If I'm not mistaken, you had a phone call just about an hour or so ago with all your doctors and nurses there at Stanford. They awarded you with a special honor this year called the Pediatric Courage Award Winner. Can you tell me a little bit about that call?

Diana:
It was awesome. My family, was there [on Zoom]. My dad just told me, “Oh, they're just going to talk about your appointment.” I was like, “Oh, okay.” So, I never saw that coming. I never knew that was going to happen. Then, I had family from everywhere who was there. So, that was great seeing them. I’m really honored and grateful that I received that award. I did not see that coming. Yeah, it was pretty great.

Steve:
So can you tell anybody that's listening being a Pediatric Courage Award Winner, what brings you the courage to face each day and to do all that you do and in spite of this disease?

Diana:
My family, they're amazing and they keeps me going. I stay positive, which really helps, because there's going to be bad days, but there's going to be great days also. I think you should really focus on that, because you shouldn't really focus on all the negatives. My future too, because right now, sure this is happening. Right? But, look forward to your future too. Just focus on that too and have something to look forward to every day.

Steve:
How about you Jamie? What traits do you see in your daughter that define her as a courageous fighter in this disease?

Jamie:
We always support her, but she really have good attitude. She's positive. She never worries about this disease. She always thinks in a future. She's a great kid. That's why she got that award. When we go to the hospital and they see that she would like to participate in studies that have all the kids that have the same thing, she always says, yes no problem. She's very good with that, too. She helps out with the new cases coming up, with kids like her, because she feels really good. She's really a strong girl, smart. She likes to participate in everything. She’s positive and has a good attitude.

Steve:
This year's race, unfortunately with COVID-19 is turning virtual. There's a flip side to that coin. It's a great event as you've said, Diana, in person having attended before. But this year being virtual, it's opened up to people all across the United States and world, frankly. What do you think you would tell people who didn't have much knowledge of pulmonary hypertension or the work of Stanford or this race, for that matter. Why should people participate virtually in The Race Against PH on November 1st?

Diana:
To support. It's fun to do and it's supporting, as well. For the people who have PH, I know it makes me happy to know how many people are there and how many people are like, “Oh, we're with you. We know you're going through a lot of stuff and we're support you.” So, that's very important. What's also really good about the race and how it's virtual, there's people from all over the world that can be there too.

Steve:
One thing that's really cool leading up to this race, that's a virtual race, as we said. It technically takes place on November 1st, but it's happening now as we speak. What we've been doing throughout the whole month of October, here, is various contests that have been taking place leading up to this race.

This week's contest, is actually a costume contest takes place between October 26th and October 30th. Because the race takes place in November, it also correlates with pulmonary hypertension month, as I mentioned. To help generate that awareness, we want to challenge everyone to a costume contest, where you wear the color purple, because as many of you know, purple is a color that's used to show support for pulmonary hypertension. So, be creative and the more purple people are wearing the better.

What we want people to do for this week, is to take six photos or selfies of yourself in your favorite pose in your purple costume. You can even make a sign to show your support for pulmonary hypertension patients or The Race Against PH, here at Stanford. Post it on their website by Friday, October 30th. That website is med.stanford.edu/raceagainstph. What's going to happen is there's going to be two adult winners, two children winners. They're each going to receive a $50 gift card. So, please give yourself time to upload this. The deadline is Friday, October 30th, 3:00 PM Pacific. So, please take part in that we'd love to see your costume.

Jamie and Diana, I really thank you guys for sharing some of your story. Congratulations on becoming this year's Pediatric Courage Award Winner, that's amazing!

Diana:
Thank you.

Jaime:
Thanks a lot.

Steve:
Thank you all for listening and we hope to see you on November 1st for The Race Against PH. Thanks so much everybody.

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