Crunching Numbers for CHD Research

Antara Mondal was born with aortic stenosis and has undergone open-heart surgery. In this episode of Heart to Heart with Anna, Antara shares what it was like growing up with a congenital heart defect (CHD), how it affected her childhood and early adulthood and why she chose to study statistics at Carnegie Mellon University. She'll also explain to Anna what field of study she plans to pursue as a post-graduate and how statistics can help doctors working in the field of pediatric cardiology.

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Transcript

spk_1:   0:00
It's so fascinating to be ableto see the subjects that I studied in school be put into practice, especially into something that I can really relate to on a personal level.

spk_2:   0:20
Look, I'm to heart to heart with Anna. I am Anna Gorski and the host of your program. I'd like to announce a brand new contest that will be conducting for the summer of 2019. We want to hear your stories. We want to know how an episode of heart to heart with Anna has impacted your life. Share your 500 to 2000 words story with us. We'll post them on. Our website will let people vote for the story that touches them the most. The first place winner will get a heart to heart with Anna Shirt of your choice. The second place winner will get a heart to heart with an a tote bag, and the third place winner will get a heart to heart with the animate See hearts Unite theglobe dot work For more information. Today's show features Ah, Heart Warrior, and our episode is entitled Crunching Numbers for CHD Research with Aunt Tera. Model and Terror model is a heart warrior. She was

spk_0:   1:11
born with aortic stenosis and has had two catherization Zach, one open heart surgery to replace her aortic valve, born in 1996 and Terror, graduated from Carnegie Mellon University in December 2018 with a degree in statistics. Her first open heart surgery was a Children's Hospital of Philadelphia, or Chop during the summer of 2017. It was a chop that in terror is understanding of what her degree could do for her in helping others with congenital heart defects came to light. Welcome to heart to heart with Anna and Terra.

spk_1:   1:46
Thank you for having me. I

spk_0:   1:48
am so excited to have a brand new graduate on the show. That's really exciting. Let's start by having you tell us about your heart defect, aortic stenosis and how it affected you growing up, especially since it seems like you were so much older when you had your first surgery. I

spk_1:   2:05
remember I was always the slowest kid on the playground and an elementary school. I would always get in trouble for taking forever to finish the mile or never being able to climb the rope. I never really thought it was because of my heart. I always thought I just wasn't a strong as everyone else, and my parents never made me feel like my heart was an obstacle. But it was always weird to me that I was the only kid who had to miss school toe. Go to the cardiologists, and I remember I used to think that other parents were being bad parents for not taking their kids to the cardiologists. And in middle school I started taking jazz dance classes, and my heart never really bothered me until I qualified for Advanced Jazz, which basically doubled the number of rehearsals and the intensity of them. Oh yeah, in 11th grade, I ended up having to quit dance. After my cardiologists recommendation, he said, Ah, radiant across my valve was way too high, and it just wasn't safe anymore. And so he recommended me for a balloon valve alot plasticky, and I was 16 at the time, so I missed a week of school for this. And, you know, even after that first procedure, I still wasn't really able to comprehend the severity of my defense, especially because I felt amazing after that ballooning like I knew what it felt like toe breathe normally. Yeah, I went to Disney World after that, and I attended my junior prom a month later and I thought I was basically fixed and all my doctors told me I could lead a relatively normal life, so I had a pretty regular high school life after that.

spk_0:   3:31
So were you able to dance again after that, or was that still a no? No.

spk_1:   3:35
I actually just started again last month. Did you? Really?

spk_0:   3:39
Congratulations. That's awesome. Let's talk about where you decided to go to college and how your parents felt about you leaving home to go to college.

spk_1:   3:50
I applied to colleges all over the country. I always thought I wanted to head out West, where it was warmer and sunny all the time, and the thought of my heart never once crossed my mind. And it probably would have been different if I wasn't feeling perfectly healthy. And when I was accepted to Carnegie Mellon, I was ecstatic, and I was ready to move across the estate from Philadelphia to Pittsburgh, and my parents were on board with the transition, and, you know, I think they felt just as any other parent would when their child leaves home for the first time. Like we never knew that my balloon vow would only last two years. So they didn't think about my health. And to be honest, neither did I.

spk_0:   4:29
Well, that's understandable because you went so many years before you had anything done. And then after you did have something done, you felt so amazing. They didn't tell you this might only be a temporary fix.

spk_1:   4:41
I remember before that surgery they had told me I could possibly have another ballooning done later. But I just felt amazing after that. So, everything

spk_0:   4:51
you normal? Are you the oldest? Yes, I am. Okay, so I was a big transition for your parents to let you go to school. But I looked on the map, and it looks like Carnegie Mellon is only about four hours from your home.

spk_1:   5:03
Yeah, it's about a 300 mile drive,

spk_0:   5:06
so that's far. But it's not like you went to California or to Florida, so I can see where your parents would be like. Okay, we're on board with this. So what was the biggest challenge that you faced as a young adult with a congenital heart defect as faras managing your schedule A college? Were you able to go to school full time?

spk_1:   5:25
Yes, I was in school full time up until my surgeries. It wasn't until my sophomore year of college that my heart decided to act up. And I remember there would be days when I was too tired to get out of bed or I'd get so dizzy walking to class and I have to stop and take a break. Um, I remember one day I felt so awful in my amazing roommate at the time, took me to the E. R. Because my heart was going into weird rhythms and this was right before Thanksgiving and my parents drove the 300 miles to be with me in the hospital in Pittsburgh. And there the doctors had told me that I was fine and that I was just dehydrated. And I think dealing with these symptoms in a different city and being all alone was one of the biggest challenges I had phased. Sure, I was also told I would need surgery just as my junior year was ending. So I ended up taking a semester off from my first semester of senior year to take the time to recover. And this felt like a huge obstacle to me. Because at a school like see him, nearly everyone is always ahead of the curve all the time. They're either graduating early or juggling school and re surgeon. I really thought I was like the outcast there, just lagging behind a full semester. One last challenge I face, um was that after surgery, it came very cautious about my health and always thinking about it. You know, I think I lost a lot of the independence during this whole process. So I took my semester off to travel to India just with my younger sister. And I think, Wow, Esso, I think doing this really help me gain back that sense of independence. And I thought that if I could survive in another country after surgery, I would be just fine being away, like being 300 miles away from home.

spk_0:   7:06
Wow. So your parents were on board with you going all the way to India? Yeah. Shortly after your surgery?

spk_1:   7:12
Yes. My dad had said my reward for going through surgery would be a first class plane ticket to India.

spk_0:   7:17
Oh, my goodness. Wow. So not only did you go, you went first class. That awesome. Is that well now, had you been to India before?

spk_1:   7:25
Yes, I have.

spk_0:   7:26
So it wasn't like you were going to a foreign land for the first time.

spk_1:   7:29
Yeah, but it was just great being able to go alone or just with my younger sister. And, you know, not having my parents watch over me. Well, yeah.

spk_0:   7:37
Kind of restored that sense of independence that maybe you were afraid you were losing.

spk_1:   7:41
Yes.

spk_0:   7:42
Were you familiar with the hospital system in India? Just in case something should happen?

spk_1:   7:47
I did look up on the eighth th a website of all the hospitals that would be near me that specialized in ch D. So, thankfully, I didn't need any doctors or anything, but personally, I'm not too familiar with how their hospital system works. But I knew where the doctors were located.

spk_0:   8:04
Well, that's good. So you went armed with some information. You weren't going totally blind into that situation. And you had your sister with you. So just the case that they happened, you guys could have each other, and I think that's a really good thing. Did you have trip insurance too?

spk_1:   8:20
No, we did not.

spk_0:   8:22
That might be something you want to consider for the future.

spk_1:   8:25
Yeah, that makes

spk_0:   8:26
what do you think was the best decision you made in that time for him? Do you think the best decision was actually taking that trip with your sister? I think

spk_1:   8:34
so. I was very iffy on if I wanted Thio go or not, because we would have to book our tickets in November. And my surgery was at the end of August. I remember after, like, the six week period when I met my surgeon and my cardiologists, I asked them if I was okay to travel abroad on. They all said I was perfectly healthy and I could start doing whatever I wanted to do again. And I figured if I didn't go now, during the time where I had six months all to myself, I didn't know when I would be able to go again.

spk_0:   9:07
Oh, so it Carnegie Mellon semester. It's six months. Yeah,

spk_1:   9:12
it's about like, 5 to 6 months,

spk_0:   9:14
so that gave you a good long time to recover from your surgery.

spk_1:   9:18
Yeah, So it was like my fall semester. I would go back right after New Year's.

spk_0:   9:23
How long were you in India?

spk_1:   9:24
I was there for three weeks. Wow,

spk_0:   9:27
that's a good vacation. So what was the most interesting thing you saw in India?

spk_1:   9:33
Well, that's a tough one I went to in Calcutta. There's the Victoria Memorial, which was amazing. I've always driven past it, but this time I had the stamina toe Go inside and explore this huge. It's almost a castle. That was one of the highlights of my experience,

spk_0:   9:52
and you had the stamina to do it, which was, Ah, highlight. I'm sure Annette probably bolstered your confidence even a little bit more. Yeah, awesome

spk_3:   10:03
takes this hot industry we're offering. That's a mechanical hot. And he said, now that I've had enough to give it to someone worthy, my father promised me a golden dressed twirling held my hand and asked me where I wanted to go. Whatever strive for conflict that we experienced in our long career together was always healed by humor.

spk_4:   10:24
Heart to heart with Michael, please join us every Thursday at noon, Eastern as we talked with people from around the world who have experienced those most difficult moments

spk_2:   10:39
Forever by the Baby Blue Sound collective. I think what I love so much about this CD is that some of the songs were inspired by the patient's

spk_5:   10:50
many listeners will understand many of the different songs

spk_2:   10:53
and what they've been inspired. Our new album will be available on iTunes. Amazon dot com. Spotify. I love the fact that the proceeds from this CD are actually going to help those with congenital heart defects Enjoy music home tonight forever. Look,

spk_4:   11:16
you are listening to heart to heart with Anna. If you have a question or comment that you would like to dress down show, please send an email to Anna Dworsky at Anna at heart to heart with anna dot com. That's Anna at heart to heart with anna dot com Now back to heart to heart with them

spk_0:   11:35
and Tara Before the break, we were talking with you about your congenital heart defect and how you managed your schedule. It's school with your ch D, but now

spk_1:   11:44
I want

spk_0:   11:45
to talk to you about your major. Why did you choose the study statistics? I've

spk_1:   11:50
always been a math and science person, and an intro Stats course was required as a Jenna at my school, and once I took that, I knew that's what I wanted to do. It's Ah, very applied form of math on Dhe, the branch that I'm in currently. It's not abstract at all. I never really knew what I wanted to do with statistics until my heart problems started worsening. And I remember one of our first project after I found out that I'd need surgery involved us predicting if a person would have cancer based on multiple predictors and risk factors. And after this project, I started looking up the application of statistics in pharmaceuticals and in clinical trials, and I always thought I would end up in marketing analytics, since I do have a business minor. But I realized that the field of biostatistics would have more of a direct impact on society. And that's when I knew I wanted to focus on the clinical aspect of statistics.

spk_0:   12:46
So is your degree in statistics or biostatistics? It

spk_1:   12:50
is in statistics, but I am currently, like in the job. And then I am specialized in biostatistics.

spk_0:   12:56
Wow. Well, so tell us about your experience in the hospital. What did your doctor say to you when they found out what you were studying. It

spk_1:   13:03
was the first time that I met my surgeon in May of 2017 that she told me about the true importance of statistics in the field of medicine. And I remember she kept saying that I should work for them once I graduated. Uh huh. I initially laughed it off, but during and after recovery, I have read so much by that time about clinical trials and CHD and different papers on CHD outcomes that I realized I had learned many of the statistical methods that these researchers were using. I had already learned them in school and has pushed me to take a few grad classes at University of Pittsburgh and chronic illness epidemiology. And I also ended up interning at Memorial Sloan in New York just to really figure out if this was the field that I really wanted to pursue. And my surgeon had also connected me with a statistician that she works were Then I was able to meet with her and talk about all the studies that they were working on a chop and how clinicians used these results at the bedside.

spk_0:   13:59
Isn't that just amazing. And how awesome that you're surgeon took it interest in you personally and helped you to find a way that maybe you could use what you were studying in school to help other people just like you.

spk_1:   14:13
Yeah, she really was my inspiration to go into biostatistics. Now you're working at the hospital where you had surgery. You actually take it a job there. Tell us about that. I'll admit it's kind of weird. I'm always up on the cardiac floor and I have flashbacks of my time spent in the hospital, but I really wouldn't trade my job for the world. I'm working mostly on cardiac projects with the current fellows in the department. And you know, it's so interesting to see what they're passionate about. You know, the rarest of C H. D S and I've been exposed to so many CHD is that I haven't heard of on also cardiac terms like those numbers that we get after our echoes. I personally never understood them until a doctor just last week requested some stats on them. And it's honestly amazing just to see how these studies are eventually put into clinical practice or just realizing that we really do need more research to be done.

spk_0:   15:06
So do you actually go to the bedside of certain people as you're doing your research?

spk_1:   15:12
No, I personally I'm never at the bedside. I interact with a lot of the positions who basically have data, and they'd like to run statistics on them.

spk_0:   15:22
So are you at the hospital itself or a building near the hospital? I mean, cause I know trap is huge.

spk_1:   15:29
I spend my time. It's about half and half. We have a research building about a mile away from chop. And then I also spend a lot of time on the cardiac floor at chop in their conference rooms.

spk_0:   15:40
And what's the biggest challenge of the job that you have right now? I

spk_1:   15:44
think the biggest challenge of my job right now is just being a fresh graduate and just having so much to learn. Still, you know a lot of the statisticians. I'm working with their amazing people who have masters and PhDs and statistics and biostatistics. And, you know, I've just graduated with my bachelor's, and I'm still in the process of learning a lot of stuff that I haven't learned yet.

spk_0:   16:06
I think it's oppressive that even before you started at Chop, you started taking some graduate level courses. Are you continuing to take some graduate level courses?

spk_1:   16:16
I do plan to start my master's next year doing my master's part time while still working. But, yeah, I think those graduate classes really helped me discover that bio stabs was the way I wanted to go

spk_0:   16:28
on. Is that what your masters would be and then buy a statistics? I didn't even know biostatistics was a for you. I mean, it makes sense now, but when I was in school, I don't think it was a field

spk_1:   16:40
gets recently started gaining a lot of recognition.

spk_0:   16:43
I just think that's amazing. And I love how you're able to take what you studied in school and immediately apply it to something that's really so important. And you're learning while you read the stats on people's research, you're learning what those numbers mean. I mean, I imagine the next time you go, I get a necco yourself. You're going to look at those numbers with fresh eyes, aren't you?

spk_1:   17:07
Yeah, I'll run some stuff on them. I don't

spk_0:   17:09
have funny. Well, you said something a little earlier. That really kind of struck May. You said, how you sometimes have those feelings like PTSD being in the hospital. I want to talk to you just a little bit about that because I think that's something that a lot of us who have dealt with congenital heart defects half to deal with and that is, you know, certain smells or certain sounds or just being in that same environment where you were so vulnerable just a short period of time before how it can impact you. What do you do to overcome any anxiety you might feel?

spk_1:   17:47
I never really thought this would be a problem for me. You know, after surgery, a lot of people were just like you made it through. You're done. You have nothing else to worry about. And yet for a few weeks after surgery, I didn't feel that good. I just kept thinking about everything that happened to me, and, you know, it was a lot of why me and I think I really opened up to my sister about this and I was able to talk to her, and you know, she's seven years younger than me. But she was the sweetest soul. She really helped me through that time, and she would always try to engage me, and we would talk about how whatever happened happened for a reason. Maybe if I didn't have surgery, wouldn't have this job today, or she always made sure we saw a light in the situation.

spk_3:   18:34
Hi, my name is Jaime Al Croft, and I just published my new book, The Tin Man Diaries. It's an amazing story of my sudden change of heart as I went through a heart liver transplant. I can think of no better way to read The Tin Man diaries than to cuddle up in your favorite hearts. Unite the Globe sweatshirt and your favorite hot beverage, of course, in your hearts Unite Blow mug, both of which are available. The Hug podcast network, online store or visit Hearts Unite theglobe dot

spk_4:   19:05
tthe heart to heart with AMA is a presentation of hearts Unite the Globe and is part of the Hug Podcast Network Hearts Unite The Globe is a nonprofit organization devoted to providing resources to the congenital heart defect community to uplift and power and enrich the lives of our community members. If you would like access to free resource is pretending to the C H T community. Please visit our website at www congenital heart defects dot com for information about CHD, the hospitals that treat Children with CHD summer camps for CHD survivors and much, much more.

spk_5:   19:48
Anna Dworsky has written several books to empower the Congenital Heart Defect or C H D community. These books can be found at amazon dot com or at her Web site, www dot baby hearts press dot com. Her best seller is The Heart of a Mother, an anthology of stories written by Women for Women in the CHD community. Ana's other books, My Brother Needs an Operation, The Heart of a Father and Hypoplastic Left Heart Syndrome. A Handbook for Parents will help you understand that you are not alone. Visit baby hearts press dot com to find out more.

spk_2:   20:25
And Tara Now that you're out of school and you're an adult and you're

spk_0:   20:30
working in a hospital setting, I imagine that you see health care a little differently. You're also lucky because chop. It's one of the most renowned hospitals for babies born with congenital heart defects, and they have grown with the Times to include Care for a Adults With C HDs. Tell us about your health care now and especially whether or not you see an A c H d specialist.

spk_1:   20:51
Yes, I do. Currently Thean Amazing, a CHD specialist at Penn, and she's seen me through college surgery. And now this job I'm so fortunate and grateful toe work alongside my care team. I think many of the projects that amount are with doctors and nurses who had cared for me in the C I. C. U and see See you. I think I'm pretty lucky to experience what happens behind the scenes. You know, while I'm not at the patient's bedside, I do get to see how these health care professionals are really just trying to improve the lives of CHD patients with their research. And just a few days ago, a doctor from the UK came to chop to speak about how he was using machine learning and artificial intelligence to create better MRI's and Children with C H. D. And it's so fascinating to be ableto see the subjects that I studied in school be put into practice, especially into something that I can really relate to on a personal level. Wow,

spk_0:   21:43
to be able to be engaged with your care team professionally as well as an individual, that's really awesome, that you get to see their pet projects said to their what they're trying to do to make a difference, because I think that's the thing that impresses me so much about this field is that thes professionals? They put their heart and soul into it, don't they?

spk_1:   22:05
They really do. And you know, it's not something that we have. Patients really ask doctors when we see them. Like I never asked my cardiologists. So what projects are you working on right now? It wasn't really until I got this job that I realized how invested they are in this field,

spk_0:   22:19
and I'm taking it. The chop is a very big institution on research.

spk_1:   22:24
Yes, it is

spk_0:   22:25
not. All hospitals spend tons of time on research or encourage. They're professionals to do a lot of research. But I'm always reading about research coming out of chops, so I know that there dedicated not only to providing excellent care to their patients, but also to be on the cutting edge of research and terra, what are your plans for the future. Good

spk_1:   22:46
question. I am hoping to start my master's degree and biostatistics within the coming year. And before next summer, I'm planning to buy a house in Philadelphia. So I have easier commute to work in terms of work, though I do have a few research ideas about CHD that I'd love to work on with a few physicians. So we're sorting through the logistics of that. Oh,

spk_0:   23:09
wonderful. You mean research that you've come up with the design for?

spk_1:   23:13
Yeah, I just had a few ideas about DHD outcomes, and I haven't seen any papers published about them. So trying to figure out if I can have a physician mentor me to actually bring this to petition? Oh, my gosh,

spk_0:   23:26
that would be amazing. So are you able to work with maybe some other statisticians to help you with that? Or is it something that you would just work with the A C H D docks?

spk_1:   23:36
So I do have another statistician that I worked on a lot of projects with. She is a PhD level statistician. So she's really my mentor here helping me, make sure I mean, using the correct methodology and things like that so we would probably do it together.

spk_0:   23:51
That sounds fabulous. Well, if you could give one piece of advice to a tea with CHD who's looking to go off to college, what would you tell him or her? And

spk_1:   24:02
what would you

spk_0:   24:02
tell their parents? I

spk_1:   24:04
would definitely tell them to make sure this is for both parents and the child to make sure that there are a CHD specialists in the vicinity and just have an initial consultation them. I think if I did this, managing my CHD at school would have been shown much easier. And our physiology is really make it difficult for regular cardiologists toe understand and diagnose us. So I bet if I established that care team before hands, I wouldn't have been released from the e. R for being dehydrated. I think that's like when my problems really started getting worse. I would tell teens to take initiative even if they feel fine, because CHD tends to show symptoms gradually until it becomes our normal. So we don't even realize that our health is deteriorating. I think parents should also make sure that their child knows their defect like the back of their hand and to immediately see a specialist. If something doesn't feel right, however, I would let them know that, too, not limit their child's potential just because of their ch d. I don't know where I'd be today if my parents restricted me from pursuing hobbies that I was passionate about or just living home for college. I think at the end of the day, everything works out for the best.

spk_0:   25:08
I love what you said about having the parents not hold their Children back, but letting them know that they should have an a C H D specialist that might restrict where they go to college. I was really surprised that you told me that you weren't really considering that when you were picking your college, because I have a son who has a single ventricle heart, and his cardiologists was very clear with him. What colleges he did not want him to even consider because they were too far away from a good center. Is that something that she would encourage teens and parents toe? Look, it

spk_1:   25:44
definitely especially. You know, I just think if I have that conversation with my cardiologists, I would definitely take more importance on location of the school.

spk_0:   25:55
One of the other restrictions that my son realized was that, and like you, he had surgery as a team. He had his third open heart surgery at 17. Right before he was going off to college, he realized that going to schools that were spread out far where he would have to do tens of walking was not as good an option for him is going to school in New York, where the buildings are built up and not out. I

spk_1:   26:21
never visited Carnegie Mellon until the day I stepped foot on campus for the first day of classes.

spk_0:   26:26
You did it go visit beforehand.

spk_1:   26:28
No, I did not. And I didn't realize that Pittsburgh was on a hill. Yeah, definitely. Good point, you.

spk_0:   26:34
Wow. So you were having to go up and down Hill to get to your classes?

spk_1:   26:39
Yes. Thankfully, CMU is pretty flat, but the city itself is on a hill, so there are a few streets that are pretty tedious to walk up.

spk_0:   26:48
See, these are things that you don't necessarily think about until after the fact. And it could make a big difference. Yeah, the fact that both you and Alex went to school shortly after having had an open heart surgery. Me, Alexi, it is surgery on November 1st. And then he started back the next September. So it was a little bit less than a year. And he said he wished he had taken a complete year off. Did you feel like the semester that you took was enough?

spk_1:   27:17
Yeah, I thought that was it. Not They think just go into India. Really bolstered my sense of independence and being able to carry around huge bags and walking around. Really? I figure cmu would be a breeze after that.

spk_0:   27:31
Well, yeah. You weren't carrying a suitcase that most should be carrying a backpack, right? Exactly. So how long wish your hospitalization after the surgery if

spk_1:   27:40
you haven't ate Dean. Oh, so it was fairly quick. Yeah, it was pretty quick.

spk_0:   27:45
How do you feel now, my dear?

spk_1:   27:47
I'm doing pretty well right now. I have my follow up scheduled for two months. I'm here doing research. Pensions?

spk_0:   27:54
Yes. So you're working full time and you're doing some research as well? Yeah, that's awesome. Well, thank you so much for coming on the program today and talk. It is about your life and your profession. I just think this is amazing.

spk_1:   28:09
Thank you for having me.

spk_0:   28:10
It was so much fun. Toe learn about statistics and by the statistics, I feel like I've come away with fresh knowledge, which is really cool. Well, that does conclude this episode of heart to heart with Anna. Thanks for listening today. Please check out our website for this special program we have our our patrons. You can get special opportunities merchandise and you might even be able to meet with the heart to heart with an A team in person. All it takes is a small regular donation to make a big difference. Of course. Ah, large. Today she could make it even greater difference. That's all for today's episode. Remember, My friends, you are not alone.

spk_4:   28:49
Thank you again for joining us this week Way Hope you have been inspired on Empowered to become an advocate for the congenital heart defect community Heart to heart with Anna with your hose down, Jaworski can be heard every Tuesday at 12 noon eastern time