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Anna's Buzzsprout Affiliate Link
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Social Media Pages:
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Website
spk_1: 0:34
welcome
spk_0: 0:34
to the eighth season of Heart to Heart with Anna. Our theme nous is in his care for adults with congenital heart defects, and I have a great show for you today. Today Show is transitioning from teen to adult. In our guests are Nicole Vickery and Sarah Clark. Nicole Vickery is executive producer and president of Silent Cries Productions, Incorporated and producer at Wolf Entertainment Productions. She has worked for years in the nonprofit sector, most recently with the Adult Congenital Heart Association. Nickel Victory is a tetralogy of fellow survivor Nicole attended the University of South Alabama, majoring in business finance with a minor in public relations. She resides in Huntsville and devotes her time to CHD education through a public speaking engagements, the use of social media, book publications and film production. She has one daughter adopted from China in 1996 currently a senior at the University of South Alabama, and her second daughter, adopted from India in 2000 passed away in August 2000 and 13 months of age from complications from cerebral palsy. Well, meet Sarah Clark in the second segment of the show, Welcome to Heart to Heart, with Anna Nicole.
spk_1: 1:42
Hi and thanks for having me. It's always a pleasure chatting with you. Oh,
spk_0: 1:46
it's always a pleasure for me to chat with you. And my longtime listeners may remember that you were on the show way back in Season four when you did the show. Silent Cries moving from philanthropists to producer
spk_2: 1:58
It's great to be back. Thanks. Yes, it seems like a long time ago. Just is a brief update for those of your listeners interested after my second pulmonary valve. Replace that last year. I'm doing better health wise than I ever have. And Silent Cries. We put the documentary portion in the can. It's done, and we're ready to start filming the narrative portion of the first docudrama. T. I see that because we've gotta have comedy and they're not just in drama about CHD ever produced, and it's called collisions rocking the scars because that's what I'm all about is rocking my scar. And I'd like to ask your listeners to stay tuned our Facebook page and websites for ways that they can help make this film become reality so we can educate and support research on this critical issue.
spk_0: 2:45
Well, I'm so glad to hear that you have made some progress. I'm excited for you. Oh, my. Thank you. Wow. Yes, please. And you keep me posted. Okay, well, let's get back to this shows. In our previous communication, you worked really hard firm transitioning from a teenager to an adult to make sure you did everything right. That's what you were telling me about, but on things I brought. So why don't you share with us a few things that gave you difficulty in transitioning from team to adult and what you did right? This still turned out wrong.
spk_2: 3:15
Well, I think first and foremost, speaking of age, I reached adulthood at the end of the 19 eighties. And pediatric cardiology was a medical school discipline. Adult congenital heart disease was not taught in college. It was taught through mentorship programs. That one, in fact, that's kept me alive this long. When I should have been gone a long time ago, things that were right growing out my parents never sheltered me from my heart issues as a child, they always answered questions I had was lucky. My dad left medical school to join the space program in the early sixties, but probably helped most of us all because we had medical textbooks than always. Had a new PDR every year because he remained interested in medicine. Also wanted to stay on top of what was going on with me, his child. And he's never spared an expense with us where it comes to health even to this day. He tells me You need to go to a doctor or hospital. I'll pay for it. I'll find a way. You just stay on top of things and stay well. But with that wonderful education and support group for my family, I transferred. South Alabama was a sophomore in 1989 and when the first things I did after turning 19 is, I went to look for cardiologists. I thought, You're an adult. It's time to see somebody. I have not seen anyone since 1980 I thought that to get and what practice would be a good idea. So GP was well acquainted with the entire South Alabama cardiac group out there and he sent me to see you, someone specific. That group got it wrong and sent me to a different doctor. I ended up in a test, rushed in for a transit Soulful Geo echo, An emergency heart catheterization where the doctor was dealing with something he was not informed on at all. We basically almost killed me on the CAF table. For one thing, I didn't medicate me properly. He was yelling at me during the Captain. The whole experience still shakes me to the core today. And that was almost 30 years ago. I was only 19 so I decided that we tried again. I finally got in with the doctor that munchie p wanted me to see. But the thing that they didn't know that we really know now is that no regular cardiologists knows anything really about adult congenital cardiology, and that was one of the biggest mistakes. But, Tom, I was 25. I wanted to start a family and I went to my cardiologists in Mobile. Went to my GP much you, Ryan. And they would say, Well, your heart smart, large. You don't have pulmonary hypertension. That's good. But then they would say, If you have a child, you're probably gonna die, so you shouldn't have Children. And the Giant was ready to give me Instruct me Anyway, I didn't listen to my own voice in my head. I didn't listen to my heart instead of like other people insinuate their ideas on me. And instead of going and getting a check up in Birmingham or had gone this child, I listened to the people around me and I just went ahead with hysterectomy and proceeded with trying to adopt Children. I did everything I could to keep my heart healthy, and I would have a different life had I gone back to Birmingham. I learned in 2007 that had I gotten back there in my early twenties, I would've gotten a new pulmonary valve and I probably could have had Children. My career would be on the trajectory that it was on in my early twenties. I would never been in heart failure, which I was for over a decade, and my life would have been different. But at the same time, I can't regret it all because I can't imagine my life without my beautiful China doll, who my then husband adopted in 96. It's just really interesting Thio see, no matter how hard you try, sometimes the system failed you, and that's one thing that I tried to get out toe parents and teens and Tweens, know your story and look at the next step in life before you make it so that you're ready and prepared for it. I was just flying by the seat of my pants and didn't know what I was doing. And I was alone because my parents were 350 miles away.
spk_0: 7:08
Wow. So it seems the most important lesson you've learned is knowing your story, but also getting the right help in the right place. Am I understanding you properly, Nicole?
spk_2: 7:17
Absolutely. I think that those are very critical lessons. Most importantly, is learned them. Listen to myself. My God, my heart. Nobody can feel what I feel And I've even talked to paint doctors about this. If I break my leg, you can empathize with a shared experience. But you don't know exactly what my pain feels to me and how it feels and how it affects my daily life. Same thing with our hearts. Nobody knows but you. I fought with doctors for years, banging my head against the proverbial wall. Hospital visits repetition of my story. And so I was blue in the face and darn near death. By the time I found a doctor to really listen, I was really, really sick. 36 year old with a teenager and I found a doctor who wasn't too arrogant to say I cannot help you, but I think I know who can. And those words changed my life forever. I found myself back in the same pediatric cardiology facility I'd visited for years as a child. Now I was with my car. Dios protege. That's how they mentor back in the eighties, in the nineties era. Yeah,
spk_1: 8:23
they took them
spk_2: 8:23
a few months to get it right. But they realized I need to open heart stat. I mean, they only do Children in the summer, And I had a June 26 slot, so that tells you anything was emergency. They had to do it. And so as I move into this next stage of life, I want to take those lessons learnt because I have cardio is now they're getting ready to retire, and so I'm gonna have to go through this all over again. And they don't understand how stressful it is.
spk_0: 8:50
It is trying
spk_2: 8:51
to have a system in place. No other doctors gonna take it and just go buy that. You gotta read the wheel every time.
spk_0: 8:57
Yeah, and that is very stressful. My sympathy goes to you, Nicole, because it's very scary. It's not just stressful. It's scary. What if somebody who comes in next gets it wrong? I mean, at least when you were with your doctor's protege, you knew he knew what your other doctor D'oh! And if he didn't, he could pick up the phone and call him. That is the one good thing about the pediatric cardiology community. I never drink. I
spk_2: 9:23
never smoke and never did drugs. All because I was scared it would kill me, right? I really did everything I could to make sure I say a lot. But the quality of my life has suffered to the point where they're been days that I don't even know. What did I do all this sit on my best days behind me. I love doing that.
spk_0: 9:43
Yeah. You don't expect to think that in your twenties or in your thirties?
spk_2: 9:47
No, Never. I
spk_0: 9:48
really don't. But I think thank heavens you did do all the things right, Because imagine what your body would have been like if you had abused it, and instead of abusing it, it seems like you pampered your body. You were very detail oriented with your body. You knew that you had to take care of it if you want it to take care of you. And so I had you for doing all the right things. Nicole. I really did. It's not easy. It's not easy to avoid pure pressure. It's not easy to avoid all the vices that are out there, but we're
spk_1: 10:18
going to talk
spk_0: 10:19
about what advice you and Sarah have in 1/3 segment. But don't leave yet listeners, because when we come back, we get a chance to meet Sarah Clark and discover the challenges that she faced in transitioning from a team to an adult. CHD Survivor will be right back. Welcome back to our show. Heart to Heart with Anna Chauffeur. The congenital heart defect community Today Show is transitioning from teen to adult, and our guests are Nicole Vickery and Sarah Clark. We just finished talking with nickel victory about some of the difficulty she experienced in transitioning from a team to an adult survivor, and now we're going to turn our attention to Sarah Clark. Dr. Sarah Clark is on a mission to make her transposition of the great arteries and mustard procedure the least interesting thing about her. Sarah is associate library director at the Rogers State University Libraries in Claremore, Oklahoma, and recently completed her doctorate in higher education leadership at Oklahoma State University. Just blog's and podcasts about library leadership issues at Better library leaders dot com In her spare time. Sarah, in its rights plays tabletop are P GS and coho. Zilch. A Monkey's podcast. The podcast is about the 50 year old boy band, not the primates. Sarah lives in Northeast Oklahoma with her husband and two cats. Welcome to heart to heart with Anna Sarah.
spk_4: 12:12
Oh, I'm thrilled to be here, Anna. This is gonna be fun.
spk_1: 12:16
I know you
spk_0: 12:16
and I have so many things in common, and I love the monkeys.
spk_1: 12:19
Whoa. Well, I grew up with the gays. Well,
spk_4: 12:24
then you should be listening
spk_1: 12:25
to zilch. I do need
spk_0: 12:26
to check out cells, but I also want to check out the better library leaders dot com podcast because I think that is going to be fascinating. Let's talk about you transitioning from a teenager with transposition of the great vessels to an adult survivor talked us about your transition.
spk_1: 12:46
Okay, When I aged out
spk_4: 12:47
in the late nineties because I'm a little younger than Nicole, I was basically told by my cardiologists Doctor is up to go have a good life. I think he did not mean that in any sort of negative, I think you're really gonna die. So I'm gonna lie to you about it way. But we're in a positive things look really good for you way because I had pretty much been healthy since my mustard. I've never really had any serious issues. He did tell me to check in with a cardiologist's quote if I had a problem and preferably somebody who did know something about CHD that even suggested that if I ran into any issues to call his office and they refer me to somebody. But see, here's the thing. I never had a problem, so I didn't really know what to be looking for. So I was just going on my life. I finished college. I got my first job. I had two or three kind of hectic years of just transitioning into being a grown up, and I guess right before I got married, I thought it would be a good idea to check in with the cardiologists. So I called around the Tulsa area, found somebody who said they were an expert in a ch d. So it's like a I'm doing the right thing. So I went to make his appointment, and I actually went in first to do an echo. And in retrospect, this should have been warning flag number one because I walk in, I do. The echo are getting ready to do my thing. The tack walks in. He's about 18 tops. I mean, he's like, just this little baby face kid. And you know, I'm used to the people who are doing this all day watching, and he says, Oh, hi, have you ever had an echo
spk_1: 14:26
before? And I'm like, Did
spk_4: 14:29
you even look at my chart? At this point? I pulling off my shirt and all the scars become apparent was like, Yes, I've done this before and I get down on the table. They put on the goon. He starts doing this thing with lawn, and then, hey, just it's this utterly confused look on his face when he sees the screen off course. I am transposition and I mustered in a systemic right ventricle and bless this poor kid's heart.
spk_1: 14:58
I don't know, but he's like, he's like, I don't understand
spk_4: 15:02
where anything is. And I said, I have transposition of the great arteries with a mustard procedure, and he's like, did it? I
spk_0: 15:11
must waas deadly condiment, Sweetie,
spk_4: 15:15
I know. I think he kind of did because he literally was pulling medical books off the shelf trundle make heads or tail of it. And I'm like, Okay, yeah, this is gonna be great. So then the next week I come back in tow, have my actual visit with the cardiologists, he six of oxygen sensor on my finger. I don't think he even didn't e k g. We talked for about, I don't know, 10 minutes, tops. My fiance was there, and basically he was asking me if I was having all these problems. I said, no, no, no, no, no. And he was like wealth. And I'm kind of confused as to why you're here. Everything looks good to me. Have a good
spk_1: 15:53
day. And, uh, as I crush Oh, okay,
spk_4: 15:58
then. And I couldn't find anybody else in the Tulsa area at that time. Thank goodness it's changed to specialized in CHD, and there was also pride, a little bit of denial going on. So I lived my life for the next about 8 to 10 years, I think. And I didn't see a cardiologists. There was definitely some denial going on. Fortunately, I don't have any serious issues, though. In retrospect, I wonder if I was having a little bit off fluid back up. But I'm not just like a little bit of water weight that I thought was just me being chubby, but I was also chubby, But we'll get to that. So in, I guess, around 2010 2011 we were at the car place and flipping through the Tulsa Monthly Community magazine, and they were doing a piece on the 50 up and coming doctors in Tulsa. And then I just was skimming the cardiologists as you do, and I saw that we now had a guy in Tulsa who specialized in folks with C HDs Alencon Ishii, Great guy. So I was like, you
spk_1: 16:57
know, it has
spk_4: 16:58
been a while, and I probably ought to just get looked at, make sure everything's okay. So I call him. I make an appointment, I go in and I'm feeling a little nervous about it. But not big. And then a first I had to get on the scale and I got to see a number that I had not quite realized. I had gotten, too. And then after that I found out that I had a right ventricle ejection fraction of 42% and I didn't have to go find out when Ejection fraction Woz. And he explained it to me and he said, That's not great And I said, Well, where is the point that I should start worrying? And he said, We start getting concerned about people once they're at the mid to high thirties, and I was like, 42 is not that far away from that. So I basically freaked out. I went full bore, low carb paleo. I was working out five days a week. I mean, I kind of had to start walking, and then I kind of was able to transition into a couch to five k thing. He put me on my first apartment Since I was a toddler, I was on a certain and then later on, he moved me till I sent a parole just for blood pressure. And I was losing tons of weight, I think a fair bit of waterway to like I mentioned Bennett side of fat, too. I wound up losing over £40 in six months. I was getting fit. I was kind of walk running, waddling five K's and what I had my follow up M R I. My ejection fraction went from 42 to 55 it wasn't that I was in bad health. When I went to see him. I was just what I thought was my normal. But because I've never been on a heart man, certainly not in my living memory and because I didn't know how things have changed in the decade or so, I've been out of care. I was just open to these whole new vistas that I could do in my life. I could run. I never thought I'd be able to run, and I could run like two or three minutes of the stretch. Now it's amazing. I used to be one of those people where I had to get a hours of sleep a night or I would not be able to function. Now I do just find on 6.5, and it's just little things like that that have helped me sort of get a new lease on life. Plus, I've kind of come to a new emotional understanding of my mustard. I've sort of embraced it a little bit more, and I don't think I would have been able to take that emotional part of the journey without getting back into care.
spk_0: 19:14
Wow! Wow. Okay, you and Nicole could definitely write a book just about transitioning. I mean, really, this is such a huge issue, and I don't find enough people talking about it, and that's why I think it's so important for us to talk about it on this show. There are lots of different ways to transition. Unfortunately, so many of the adults that I'm talking to this season, and it's so much fun to do a whole season just with adults, because I'm learning so much. But so many people, especially people who are 30 years of age and older, were told they were fixed or it'll just come back if you have a problem and they pretty much were lost to follow up care. And now they're coming back to it, thanks to the A C h A or thanks to whatever it is that brought them back into having cardiac care. And they're saying it's a whole new world out there. No, it's just totally different. Like you said, there were different meds or a different training for the doctors. So they actually know what to do with you adults. Because, let's face it, you guys aren't easy.
spk_4: 20:09
We're weird for special.
spk_0: 20:11
Well, Sarah, what do you think was the most appointed lesson you learned from now? Transition? It seems like there were a model essence, but what was the most important one?
spk_1: 20:21
It's all about
spk_4: 20:22
finding your balance. I did need to find out who I waas aside from the hole heart thing. I mean, my parents actually did a really good job of not making it a very big part of my life, and it barely came up other than my clinic day once a year, really. But I still had to figure out how to balance it with the rest of my life. for me. I found that I do grudgingly have to make CHD part of my life. But I've also figured out a way to give it the minimum attention possible to make sure that I have a healthy life in all senses of the world. Because, okay, if you're getting the best care in the world and your hearts as good as it can be, given your situation, But you're afraid to take that cool vacation or find a way to be a parent of that something very important to you in your life or any of the other things that I hear people fretting about. I mean, I've heard people freaking out about whether or not they should get tattoos. I mean, I'm like, Okay, check and make sure there's something you don't need to do to protect yourself. But at the end of the day, if you
spk_1: 21:28
want to go
spk_4: 21:28
to China, go to China. If you want to get the darn tattoo, get the darn tattooed because I don't think that my cardiologists in my heart surgeon went all the way. Fuss tohave me, just sit in my room for my entire life, afraid to live. I think I'm supposed thio squeeze every bit of life I am supposed to squeeze out of it. And you know, I'm
spk_1: 21:50
having fun too.
spk_4: 21:51
So finding your balance is what it's about.
spk_0: 21:56
I love it. I love it. I agree. And I think that's true whether you have asthma. Ah, heart defect cancer. I mean, look, there were so many people who have different kinds of disabilities that interfere with them having the kind of life they want to. It's all about balance. Okay, So you have asthma, make sure that you have your inhaler with you. Okay? You have cancer will get treatment early. Okay, So you have a DHD. I mean, let's face it, just about every human being has something that they're dealing with. And if you can find that balance where you do Wachusett pay the minimum and attention so that you're taking care of those needs. But don't make that the focal point of your life focused on having a quality life. I think we'd all be happier, healthier people. I love it. Okay, well, we're out of time for this segment. We have to take a quick commercial break, but don't leave. You have folks because, as you can see, these women are just amazing. We're gonna have both of them in the studio together and talk to them about what advice they have For others with congenital hard to fix will be right back. Welcome back to our show. Heart to heart with Anna Chauffeur That congenital heart defect community today show is transitioning from teen to adult. And we have two fabulous guests Nicole Victory and Sarah Clark and we just finish talking. Was there Clark about some of the things that she experienced in her transition period? And Sara, you could be a comedian. You had me in stitches for I think what was so funny is is so true. And so it's something that I hear I know other adults with see each of these, they're gonna be listening to this and say, Oh, my gosh, that's my life. She lived my life. It's
spk_1: 23:58
so you know, you cannot make any
spk_4: 24:00
either mope about this stuff or you can laugh about it. And I chose many, many years ago that laughing about it was more fun. So there you
spk_1: 24:07
go have a sister because I preach
spk_2: 24:12
girl, cause that's the way I've been my entire life. I don't write out that. I laugh. You
spk_0: 24:16
know I love it. I love it. You girls are just amazing. Okay, so now we need your advice. I'd be clearly you ladies have lived through this. You know exactly what it's like to transition from team to adult. But let's face it, most of your life, God willing, you are an adult. You are not a kid. And you're teenager for a very short period of time. So we need to know how to make that transition as smooth as possible. So, Nicole, let's start with you. What advice do you have for teenage CHD survivors who are listening to this show?
spk_2: 24:43
Well, first of all, be glad you didn't grow up when I did. But just the decade of difference between Sarah and myself, I didn't know what an Echo Waas because we didn't have echoes until they had him. And it was new. You know, when I started my adult care, But talk to your parents as soon as you can. And parents talk to your Children from the time that they are aware of their bodies and scars on them and don't make their lives revolve around their CHD. But teens ask questions. Rager, clinic notes. These
spk_1: 25:15
are
spk_2: 25:15
things that doctors didn't do in my day. I have one clinic note from my pediatric cardiologists and basically didn't say much anything and start thinking about your cardiac care. As you plan for college or whatever your other post high school plans are and working it in there, you don't have to live with your CHD defining you. It sounds like I do, but it's just because of my advocacy work. Believe me, I don't let other people know about it most the time trying to talk about it. But you do have to have a plant, and I think if you decide you're going to school in Timbuktu, then you need to find the best adult congenital heart doctor in Timbuktu. Who knows about your particular defect. Because thes centers regionally are specialized in in different disciplines like tetralogy of local people will go to one place where transposition will go to a different cardiac centre. So learn about that and make plans just like you would for your career. Go in his entry level and you start looking at the next step. Something I learned in the Martian. You solved the first problem. Then you move on to the next problem. If you keep solving problems long enough, you get to live. In our case, I think that's a good takeaway for our kids coming out.
spk_0: 26:26
Okay. I love it. Yeah, I agree. 100% 11. Okay, Sarah, what would be your advice to a teenager who is listening to this show?
spk_4: 26:35
My advice is that you can't live in fear about the future because I've seen so much innovation and improvement even just in the last five years. We're at the lucky sweet spot being a little younger than, say, Nicole, that we've got enough people in line ahead of us that they're sort of figuring out the early bugs in the system. And most likely, if something comes up, they will have seen it before and be able to take care of us. But at the same time, the flipside of not living in fear is that you can't live in denial either. Everybody just has their one weird thing in life that they have to deal with. That some of us have several.
spk_1: 27:20
I may be in that category. But, you know, you have to figure out
spk_4: 27:25
where the one we're thing are three weird things or whatever fit and the overall picture of your life. I think my parents did a really good job of teaching me how to keep it in perspective and not something I've been able to hold on to as I go through life. But if you struggle with that, that's something you need to work on. But at the same time, I often say that my TA is about 1% of my life, but I also have to recognize that it's the 1% that makes the other 99% possible.
spk_0: 27:52
Oh wow, that's actually pretty profound, Sarah.
spk_1: 27:55
Wow, that
spk_0: 27:57
truly, truly. But I think that's really amazing that you said that you don't let it to find you, and yet it makes the rest of your life be what it is because I think you guys are amazing, and I think it's kind of like the story about the butterfly. So you have the caterpillar who's going to morph into a butterfly. But if it doesn't fight to get out of its cocoon, it dies. If somebody else opens it up for the caterpillar and it dies. It has to go through that struggle. And I think that Nicole and you, you guys have really had to struggle to be where you are today. And I think it's major such powerful people. Well, that's just my opinion. Of course I'm your number one fan. So what could I say?
spk_1: 28:38
Oh, thank you. Okay,
spk_0: 28:42
Nicole, we just have a couple minutes Life. So tell me what advice you have for parents of Children with C. H. D. S so they can help make this transition from team to adult as seamless as possible.
spk_2: 28:53
Parents need to educate their Children. I believe that letting the ch d. B the 1% of our life, but it's the 1% that allows the other 99% toe happen comes through education. You let him live and grow, but they need to know everything they can about themselves because it's part of their body and it's going to live with them until the last breath they take when they pick up the baton as an adult, just like we raise our kids to be good adults, we raise them to pick the right mates, if that's what they decide to do. We teach them the same thing about their bodies and what they need to do to take care of them as best they can and get them through adulthood. Because one day we have to back off and we're not gonna be around to
spk_0: 29:34
do it, all right? And
spk_2: 29:35
it's what we teach them from little guys all the way up that stays with them forever.
spk_0: 29:41
I love it. It's all perfect. Thank you so much to call. That really is excellent.
spk_4: 29:45
The advice I would give to any adult with congenital heart defect is to just be kind to yourself to find those opportunities to pay it forward.
spk_0: 29:53
I love it. I love it. Well, I can't believe it, but our time is already up. So thank you so much for coming on the show. Nicole.
spk_2: 30:00
It's been a lot of fun.
spk_0: 30:01
Well, thank you so much for coming on this show, Sarah.
spk_4: 30:04
Wonderful. I had a great time today. Thank you for having me so much. It was a great experience.
spk_0: 30:08
This has been so much fun. That concludes this episode of heart to heart with Anna Thanks for listening today. Please come back next week on Tuesday at noon, Eastern time. Until then, please check out our website heart to heart with anna dot com and support our sponsor Baby Hearts Press most reportedly remember, My friends, you are not alone.