Chapter 9 of "The Heart of a Heart Warrior" Featuring Heart Warrior Authors

How do heart warriors find incredible strength amidst life's most challenging moments? In this episode of "Heart to Heart with Anna," we bring you deeply touching and empowering stories from individuals who have triumphed over congenital heart defects (CHD). Join us as Megan Tones sets the stage with an introduction to Chapter 9, followed by poignant excerpts from Tori Geiger's "From Vulnerable to Victorious" and Jessica Carmel's "The Hearts of a Girl." Tori’s defining moment during a high school sports event and Jessica’s persistent battle with gallbladder disease highlight the resilience and courage of those navigating life with CHD.

Discover the transformative power of storytelling through Kimberly Russell's essay, "You Should Write a Book," and Dr. Brandon Lane Phillips' journey from a rural Louisiana childhood to becoming a successful pediatric cardiologist. Kimberly's narrative underscores how sharing personal experiences can be a beacon of hope, especially for parents of children with CHD. Meanwhile, Dr. Phillips' narrative based on "When I Wished Upon a Star" showcases the profound impact of mentorship and personal connections, enriched by his encounters with child actor Jeremy Miller.

As we wrap up, Megan and I reflect on the invaluable contributions of Baby Hearts Press, a cornerstone for the CHD community since 1996. We discuss our experiences with the "Heart of a Heart Warrior" series and urge listeners to advocate for these pivotal resources at their local libraries. This episode is a testament to the power of community, encouraging everyone to draw strength from shared stories and support each other through the most challenging journeys. Join us for an episode that promises inspiration, empowerment, and a reminder that no one faces their battles alone.

To buy this book, visit Baby Hearts Press (https://www.babyheartspress.com)

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Thanks to our newest HUG Patron, Ayrton Beatty and long-standing Patrons: Laura Redfern, Pam Davis, Michael Liben, Nancy Jensen, Alicia Lynch, Deena Barber, Carlee McGuire, Carter & Faye Mayberry, and Frank Jaworski. We appreciate you!

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Chapters

• 0:00 Anna's opening for the July 23rd episode
• 9:15 Jessica Carmel's Excerpt Chapter 16 read by Megan Tones
• 9:34 [Ad] & so much more
• 10:22 (Cont.) Jessica Carmel's Excerpt Chapter 16 read by Megan Tones
• 20:25 Jessica Carmel -- Chapter 17 "Angel" read by Anna Jaworski
• 29:27 Segment 3
• 29:47 Megan reading "You should Write a Book" by Kimberly Russell
• 45:43 Conclusion

Transcript

Speaker 1: 0:00

I have seen my life come full circle time and again. Yet at times I still wonder what life would be like without a heart defect. But deep down I wouldn't want to change a thing.

Speaker 2: 0:20

Welcome to Heart to Heart with Anna. I am Anna Jaworski and the mother of Hope. My daughter, hope, was born with a single ventricle heart in August 1994. Hope is my inspiration and she's the reason I am the host of this podcast. Today's episode is another special episode of Heart to Heart with Anna, where I will be featuring the newest book that Baby Hearts Press released last year. Today's episode features four authors. My co-editor, megan Tones, and I will take turns reading from the chapter.

Speaker 1: 0:53

Megan Tones read the introduction to Chapter 9, and she'll be reading that today. I'll read Tori Geiger's excerpt from her book From Vulnerable to Victorious. Megan and I take turns reading excerpts from two chapters in Jessica Carmel's book the Hearts of a Girl. Then Megan will read an original essay by author Kimberly Russell. Kimberly wrote the book in a heartbeat and I'll conclude the chapter by reading an original essay by Dr Brandelaine Phillips, who is the author of when I Wished Upon the Star.

Speaker 3: 1:28

I hope you enjoy Chapter 9 of the Heart of a Heart Warrior Chapter 9. Heart Warrior Authors. By now you may have read several essays and have seen that everyone has a story. Maybe you are thinking about telling your own story. This chapter contains excerpts from books written by heart warriors and essays by authors. We include Tori Geiger's opening scene from her book From Vulnerable to Victorious, which details a defining moment in her life. It's a strong start which I'm sure will leave you wanting more.

Speaker 3: 2:02

Jessica Carmel shares her experience of gallbladder disease post-transplant in the hearts of the girl. In her story she describes the pain she lived with for two years and the uphill battle she and her mother faced to find doctors who would listen. A serendipitous conversation with a family friend steered them in the right direction, but they still had to convince the doctors. In the end, their tireless advocacy won out and her story is a powerful lesson in not giving up. The other two essays in this chapter are by authors.

Speaker 3: 2:37

Kimberly Russell's essay you Should Write a Book. Something many of us have probably heard is about why telling a story matters. Feeling dubious at first, she soon found that sharing her story helped others in the CHD community, especially parents, her involvement in the Adult Congenital Heart Association and encouragement from others inspired her to write a memoir. In a Heartbeat, a Child's Heart, the Surgeon's Hands, a Life of Miracles. Brandon Lane Phillips, author of when I Wished Upon a heartbeat, a child's heart, the surgeon's hands, a life of miracles.

Speaker 3: 3:06

Brandon Lane Phillips, author of when I Wished Upon a Star, met child actor Jeremy Miller from Growing Pains via a Starlight Children's Foundation gift and the two formed a special bond. His essay Full Circle talks about the impact of that encounter on his life, his journey to medical school and beyond with a learning disability and his experiences since writing his book. I have yet to write a book, but have found getting my own stories on paper, so to speak, daunting. Be that fictional reality. Like many people, I have the modern-day equivalent of partially written manuscripts shoved in drawers, files and folders all over my computer full of snippets of ideas, lines I love but don't have a home for, and so many beginnings. If you're like me, or even if you're not, I hope this chapter encourages you to write those first ones.

Speaker 1: 4:00

Excerpt from Vulnerable to Victorious by Tori Geiger, chapter 1. The crowd was roaring and the gym lights penetrated the game atmosphere. It was a fierce game against the Blanchette Cavaliers and we had been preparing all week for this game. As a freshman in rotation on both the JV and varsity teams, there was nothing like a big game in the rival's gym. After finishing up the JV game varsity teams there was nothing like a big game in the rival's gym. After finishing up the JV game, just minutes before I rushed over to the main gym to join the rest of the varsity in warm-ups. I had just had the game of a lifetime during the JV game. Seven three-pointers, 30 points it was one for the record books and I was soaring high. So was my heart. The nerves of this game and excitement of the previous one were an overwhelming feeling, cheering on my varsity teammates from the bench standing and sitting constantly. The game intensified with every bucket and shot Ba-boom, ba-boom, ba-boom. I can still hear it in my head. My heart was racing, but it was fine. I told myself I got this. I wanted to get in the game and get my varsity minutes in, especially coming off such a hot streak in the JV game.

Speaker 1: 5:18

Then the gym started spinning. This wasn't good. I grabbed our team trainer, ty. Something doesn't feel right. My heart is pounding uncontrollably. He laid me down behind the bench on the gym floor and continued to take my pulse. You could see my heart pulsating out of my chest at this point.

Speaker 1: 5:39

It was a riveting scene. My whole body was shaking from the effects of the fast-paced rhythm. It wasn't slowing down. I couldn't catch my breath. This couldn't be happening. We better call an ambulance. I heard Ty saying to my dad and his training assistants my vision was going in and out at this point and the next thing I remember I was being rolled onto a stretcher with many curious eyes around the gym watching intensely. The doors to the ambulance shut. My dad sat on one side and the paramedic sat on the other side. This is only going to be a pinch. The paramedic said as he hooked me up to an IV. Can you tell me your name? How old are you? Do you remember what happened? Are you experiencing any pain in your chest right now? So many questions. I, I, I. It was so hard to breathe. I'm so out of breath I can't really talk. I said as I tried to answer his questions. That must have been a trigger, because the next thing I heard was Code Blue From Vulnerable to Victorious, turning your Chronic Illness into your Victory Story by Tori Geiger.

Speaker 1: 6:55

Going into Code Blue that night in high school has been the most traumatic event I have ever experienced in my life to date, but it was also one of the most defining moments in my victory story. It was a catalyst that shocked me back into the reality of living with a congenital heart defect, one that reminded me that my true superpower comes from being vulnerable and sharing the journey with others. You know what, laying on that cold gym floor during that traumatic night, I so badly wanted to pretend that I was a normal athlete, not an athlete with CHD, but that just wasn't my story. After that night, it was through sharing the hard times, the battles and the scars that I experienced healing in my journey, and through the years, my CHD has taught me that true strength and courage come from being vulnerable. That's where true impact can happen, too, and that's what I strive for each and every day. Through the journey of sharing my story with others, I have been building my resilience muscle stronger and stronger. That muscle, formed from my CHD experience, has become the superpower that has allowed me to achieve more dreams as an author, life coach and business owner than I ever thought possible, even though it was terrifying at the moment, that code blue launched me into a purposeful life that I am so grateful to lead today.

Speaker 1: 8:22

Tori Joy Geiger was born in 1997. Tori lives in the wine country area of Newburgh, oregon. She is a passionate entrepreneur and has owned multiple businesses serving a variety of needs from the time she graduated college in 2019. Tori has undergone multiple open-heart surgeries and procedures throughout her life. Growing up, she was an avid athlete, participating in volleyball, basketball and track. In high school, she played volleyball at Corbin University and later joined the track team at George Fox University as a high jumper. Part of her mission is to have a heart that beats for others and to help others achieve the same. Tori does this through her 50-50 CHD promise. 50% of her blogging commissions are donated to CHD organizations.

Speaker 4: 9:17

Heart to Heart with Anna 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, empower and enrich the lives of our community members. If you would like access to free resources pertaining to the CHD community, please visit our website at wwwcongenitalheartdefectscom for information about CHD, the hospitals that treat children with CHD, summer camps for CHD survivors and much, much more.

Speaker 1: 10:36

Embark on a heartwarming odyssey with Baby Heart's Pressure Gateway to uplifting stories for the CHD community. Introducing the Heart of a Heart Warrior book series inspiring those born with heart defects and their loved ones. Discover the heart of a mother, the heart of a father and my brother needs an operation.

Speaker 2: 10:55

Books celebrating strength love and familial support. Visit babyheartspresscom and be part of our loving community. Uplifting hearts one story at a time.

Speaker 4: 11:09

You are listening to Heart to Heart with Anna. If you have a question or comment that you would like addressed on our show, please send an email to Anna Jaworski at Anna at hearttoheartwithannacom. That's Anna at hearttoheartwithannacom. Now back to Heart to Heart with Anna.

Speaker 3: 11:28

Abridged excerpt from the Hearts of a Girl by Jessica Carmel, chapter 16 Braves. Maybe one of these days you can let the light in, show me how big your brave is. Say what you want to say and let the words fall out. Sarah Bareilles, doctor shopping is a curious phrase, especially when it's used in a derogatory way. Why wouldn't you try to find a doctor who is going to listen to you and help you find answers to why, after a heart transplant, things weren't getting better?

Speaker 3: 12:05

Dr P had accused us well, mom, of doctor shopping. It basically means that you, the patient, have several doctors that you are requesting care from, with none of the doctors knowing about each other. Sometimes people addicted to painkillers do this they go see several doctors to get multiple prescriptions. Painkillers do this they go see several doctors to get multiple prescriptions. Each doctor believes they're the only doctor that the patient is seeing and more than willing to prescribe the painkillers or whatever the patient is requesting to treat the ailment. I couldn't understand why Dr P would think that this is what we were doing For one. They were the one and only transplant team we were seeing. I didn't even know of any other transplant doctors, because no one was helping us any further with my stomach problems. We were clear about wanting a second opinion. It is every patient's right to get a second opinion in order to find a doctor With whom they feel comfortable and believe they can trust. It is not a simple task to find even one doctor who would take on such a complicated case, let alone a handful of them.

Speaker 3: 13:12

I was not looking for prescription drugs from any of the doctors, and my mum wasn't either. The pain in my side and back went right through me, taking my breath away. My mum insisted there was something more going on than gastroenteritis, so she pressed the doctors to figure it out. Then mum had one of those lightbulb moments during a conversation with a close friend of the family. The friend told her that her granddaughter, who also had multiple heart problems, had had her gallbladder removed at seven years of age because it was causing problems, had had her gallbladder removed at seven years of age because it was causing problems. She explained her gallbladder had shriveled and the family was told that there was a connection between congenital heart disease and gallbladder problems. It was a long shot to even suggest it to the cardiologist, but everything my mum had read and researched seemed to make my symptoms a little clearer and point to something possibly being wrong with my gallbladder, I went into Dr P's office for an emergency appointment.

Speaker 3: 14:13

A few weeks later I saw the transplant nurse practitioner, meg, who had known me for a long time before she worked with the transplant team. She had been a nurse on the cardiology floor and I always asked if they could put me on her rotation when she was working. She was my favorite and I knew she took great care of me when I wasn't having a good day. She always made me smile when she came into my room, so I was beyond excited when she became one of the nurse practitioners for the transplant team. We knew each other well and I thought she would be the one person who could help and who understood me.

Speaker 3: 14:52

Doubled over in pain, I told her about the newer symptoms of the piercing side and radiating back pain. I couldn't eat anything, especially greasy foods high in fat. My mum suggested that we have my gallbladder checked. She repeated what her friend had said about her granddaughter with CHD. Mum explained that she herself had had gallbladder problems, which suggested a possible genetic factor. Meg said there is no reason to. We know that you have gastroenteritis and that probably is what is causing the other pain. My mum turned, looked at me, then turned back to Meg and told her she wanted it checked anyway.

Speaker 3: 15:34

We assumed that Meg and the rest of the heart transplant team knew that the immunosuppressive medications Prograf and CellCept could cause gallbladder problems. Information about it was available on the internet. To make sure for myself that I wasn't crazy, I did my research. I decided to Google gallbladder problems after a heart transplant and gallstones and gallbladder disease symptoms. Sure enough, there was evidence that it was possible after transplant that the patient could develop gallstones, biliary pain or colic. The University of Maryland Medical Center webpage gave me the best description. Most symptoms listed were ones I had complained to the doctors about for months. I clearly remember Meg telling my mom and me, as we waited to see Dr P, the immunosuppressive medication could affect my gallbladder. It was reassuring to hear her tell us that, but I didn't understand why everyone was telling us it wasn't my gallbladder.

Speaker 3: 16:37

That was the first of at least half a dozen tests Ultrasounds, mris, x-rays, ct scans, stomach emptying tests, blood and urine tests. Every single test was negative, but the symptoms were only getting worse. They remained that way for the next two years. Dr W was my regular cath lab doctor, the one I requested every time I needed one. I got to know him and his dry sense of humor well. We respected each other and I trusted him literally with my life.

Speaker 3: 17:11

Mum and I went in one afternoon to see if we could get the results for one of my tests for gallbladder issues from Meg. She explained nothing showed up on this test, much less any of the other tests that I had done. I'll never forget it. I was with mum standing just off to the right of her. Dr W was behind the check-in desk when Meg was going through every detail of what the tests show no sign of gallstones. Dr W's look was you have got to be kidding me. You guys are back and you keep making a big deal out of nothing. It is all in her head. My heart sank at the look on his face. As he walked away he muttered to Meg and my mum it is probably just her menstrual cycle. As he walked away, he muttered to Megan my mum, it is probably just her menstrual cycle, it will go away eventually.

Speaker 3: 17:59

I could not understand why they wouldn't help. So what if the test showed everything was normal? Something was clearly not normal. The doctors said that if the test came back negative, then there was nothing more they could do. Eventually they tuned me out when they asked how I was feeling or if something hurt, because my answer would be yes, I don't feel good at all. The pain that is wrapping around my back is unbearable. I can't eat and I'm throwing up bile. I threw up bile when there was nothing left in my system to throw up.

Speaker 3: 18:33

A common symptom of gallbladder disease is the inability to tolerate greasy foods. French fries, pizza cheese and pretty much any fried foods were bound to lead to an immediate attack. It helps in breaking down all the fats and when the gallbladder is not functioning properly, it cannot process these fats and the bile works against the body because it has nowhere to go. I was told to try antacids to help with the acidity from the bile, which was normal Normal, I don't think. So Many nights I would come down to mum's office and tell her the pain was awful and I couldn't take it anymore.

Speaker 3: 19:14

She didn't know what to do at this point and her only suggestion was to call the doctor on call to see if he or she had any suggestions, at least for the pain.

Speaker 3: 19:23

We had every test done to rule out gallbladder disease and with each we hoped something would show up to prove I was really in pain and my mum wasn't crazy for insinuating that there was a problem with my gallbladder. I would stand in the doorway of mum's office as I called the transplant doctor on call. The doctor would call me back an hour later telling me they looked over my chart and all they could suggest was that we head down to the emergency room. Clearly that wasn't helpful and I knew I would just get sent right back home with no more answers or help than I had gotten before. The last thing I remember trying to eat was green bean casserole. I took less than a forkful before I ran to the bathroom sick and throwing up because the green bean casserole had touched my lips and instantly made me sick. It was close to Thanksgiving and I had been living with this pain for nearly two years.

Speaker 1: 20:18

Chapter 17,. Angel, spend all your time waiting for that second chance. It's easier to believe in this sweet madness, oh, this glorious sadness that brings me to my knees. Sarah McLachlan, we had made little progress trying to get the gallbladder problem under control. My mom, the family and I were convinced that it was a gallbladder, but the doctors thought otherwise. Dr L diagnosed the eosinophilic gastroenteritis and with that he turned his back on us. There was talk amongst the doctors that I was a trouble patient and that my mom was only there to cause more problems.

Speaker 1: 20:56

My mom was on a serious mission of looking for a new gastroenterologist in the Chicago area and soon got the name of one. My mom had a friend whose co-worker's husband was a doctor. He recommended a gastroenterologist at a downtown Chicago hospital. Both she and her husband had high praise for this doctor and said that he could help us. My mom gave the new doctor's office a call and scheduled an appointment. My mom knew I couldn't survive much longer the way I was living. I really wasn't living. I was miserable, sick and in pain constantly.

Speaker 1: 21:30

We finally were on our way downtown for the appointment. It was my first experience with a doctor that was not in pediatrics. I graduated to the adult hospital world, yet somehow it felt more like I was thrown into it. Dr PJ Carillas would see me and take me on as a patient, but he told us he was not promising anything. All he could do was to help the best he could. He said he had another patient he had treated with the same symptoms and all normal results on many tests, just like me. He said he suggested they remove the gallbladder and the patient's symptoms subsided. Hearing that, my mom and I both knew he would be the one to figure out what the problem was.

Speaker 1: 22:14

Dr Corriles had my record sent over from the pediatric hospital but he decided that repeating the test would be best. Dr Corriles did an endoscopy, colonoscopy, echo of my gallbladder and a stomach emptying study Instead of being injected with a radioactive material through an IV line. I had to eat a breakfast of radioactive eggs. I was sitting in the lab where the test was going to be performed when I got a plate full of the eggs. The thought of eating was making me nauseous. It took me at least 30 minutes to eat the plate of eggs. Once I finished, we had to wait a short time so the eggs could digest. They turned me nearly upside down and side to side to see how my digestive tract and gallbladder were passing the radioactive eggs. We would have the results within a week.

Speaker 1: 23:03

All the tests came back relatively normal. Dr Kouroulis tried putting me on some prescription antacids heartburn medication to see if that would help with any of the symptoms. They didn't help to any great degree but I did what he suggested. He told my mom and me in all honesty that the only way to know if it was a gallbladder was to remove it. While leaving that visit he reassured me that even though the tests were normal, removal wasn't completely out of the question. He said he wanted to do some research to see if he could get any information about my anti-rejection medications and a relationship to gallbladder disease. He called my house on a Saturday afternoon explaining to me he had talked to a fellow doctor and explained my case, including the medications I was taking. This doctor informed Dr Carrillas that two out of three people who are immunosuppressed have gallbladder problems and the only way to see if that was causing a problem was to remove the gallbladder. Cellsept has listed side effects that could cause problems with the gallbladder. I saw Dr Carrillas toward the end of October and by December he referred me to a surgeon to schedule a cholecystectomy gallbladder removal. So I wasn't crazy Because it wasn't obvious and no test came back conclusive of anything. It became an unimportant detail to Dr P, her staff and Dr L.

Speaker 1: 24:27

With the reassuring, kind, honest and willing-to-help attitude of Dr Corriles, we decided it was time to move on. We were finding another transplant team that could better support my needs as I got older. It was going to be much more convenient having all of my doctors under one roof, making a one-stop trip to the hospital. Amy, a friend and fellow transplant recipient I had met a few years before at the start of my transplant process, told us about Dr Kotz. She had since left the children's hospital and the same transplant team I had had a few years earlier.

Speaker 1: 25:01

My appointment with the surgeon who was going to be removing my gallbladder explained to us that there was a 50-50 chance that I would feel better once they removed it and I was willing to take that chance. He also said that two out of three patients that were immunosuppressed needed their gallbladders removed because of problems with the functioning of the organ that sometimes didn't show up on any tests. There was one catch he said he would not schedule surgery until after he came back from his vacation. It was about a week before Christmas when we saw him and of course I hoped he would remove my gallbladder the next day, but really my mom and I hoped we could get it taken care of before the holidays. Unfortunately, the surgeon did not want to schedule the surgery before he left. He knew my mom wasn't happy that we had to wait until he got back from his vacation and he made a note or mentioned to another doctor as we left that day that I was going to end up in the emergency room when he was out of town. Well, sure enough, I ended up in the emergency room twice. I could not stop throwing up and now the pain stopped me in my tracks. It felt like overnight everything got worse enough for me to end up in the ER again. They admitted me to the hospital and I spent another holiday season looking out a hospital window.

Speaker 1: 26:19

The doctors tried to control the nausea and pain the best they could and scheduled surgery Just after the new year. I had surgery for a laparoscopic gallbladder removal. Dr Shapiro was a surgeon, since the one I was supposed to see was still on vacation. Dr Shapiro was friendly and compassionate. I only had three minor incisions where they inserted the laparoscope removing the gallbladder through one of the three incisions. Dr Shapiro was great. I remember him coming to see how I was doing the next day. He only smiled and said glad I could help. It was a 45-minute procedure. Well, for me it was two years and 45 minutes. It was almost immediate. The pain dissipated overnight and I woke up hungry, really hungry. Food sounded good again and the thought of eating didn't make me want to throw up. The nauseous feeling was gone. It was surreal how fast the symptoms had left after they removed my gall bladder.

Speaker 1: 27:21

A few weeks after the surgery, we got a copy of the pathology report. It stated that my gall bladder was not functioning properly. Though there were no signs of gallstones or lesions, its function had been compromised. An unexpected and surprising bonus of having my gallbladder removed was that my seemingly endless migraines almost completely went away. It had taken me a long time to accept that I was not crazy and there truly was something wrong. I learned a valuable lesson through both the heart transplant and the two years fighting for my gallbladder to be taken out out that the doctors aren't always right. I knew there was something wrong, and my mom knew it too. Our strong gut instincts were telling us to not stop fighting until someone listened. We could have stopped, but the result would not have been as desirable as just holding on and fighting a little longer. I guess the best way, the only way to get through it, is to go through it.

Speaker 1: 28:18

Jessica Carmel was born June 7, 1983, in Norbrook, illinois, with HLHS, double outlet, right ventricle, drrv, mitral atresia, heart transplant and kidney transplant. Jessica had a series of three palliative surgeries, culminating in the Fontaine. At 15, she went into congestive heart failure and needed a heart transplant. Ten years later, she was in complete kidney failure and needed a kidney transplant. Her generous sister was her living donor.

Speaker 1: 28:50

Jessica received her bachelor's degree from DePaul University in business management and entrepreneurship and her master's from DePaul in Health Communication. She also wrote and published her memoir the Hearts of a Girl in 2016. Jessica is a diehard Chicago Cubs fan. She has always wanted to throw out the first pitch at a game, wanted to throw out the first pitch of the game. Jessica's dog, rocco, won the best pet costume, complete with jersey, toy bat and under-eye smudges, as a Cubs player. This content is not intended to be a substitute for professional medical advice, diagnosis or treatment. The opinions expressed in the podcast are not those of Hearts Unite the Globe, but of the hosts and guests, and are intended to spark discussion about issues pertaining to congenital heart disease or bereavement.

Speaker 3: 29:41

You Should Write a Book by Kimberly Russell. Kim, you should write a book, my grandmother would tell me occasionally, but I never understood why my life would be interesting to anyone From my point of view. I was no one special and lived a normal life in small-town America. I liked the idea of writing, but who would want to read about my middle-class family or my middle-class life? To me, I was just a normal kid. Years passed while I pondered writing a book and why my life would be important to others.

Speaker 3: 30:18

In 2004, everything changed when my cardiologist told me about the Adult Congenital Heart Association, acha. Kim, the next adult congenital conference is in Rochester. I think you should come. Dr Warnes, my Mayo Clinic cardiologist, commented. There will be sessions on several topics dealing with being an adult with CHD. At that point I had met only one CHD-er because my CHD cardiologist set me up on a blind date with another CHD patient. To think that other people with CHD were out there intrigued me, so my husband, tom, and I agreed to find out what it was all about To prepare for the conference.

Speaker 3: 31:04

I read many outstanding books about CHD. I learned so much more about the development of diagnoses and surgical treatments, about the development of diagnoses and surgical treatments. One book, in of Hearts by G Wayne Miller described the development of operations for CHD. Who would believe that a parent could be cross-circulated with a child so that their heart would pump the blood while the child's heart was stopped for repair? It included the story of the first successful cross-circulation story of a father who agreed to cross-circulation to save his son's life. It was an amazing story.

Speaker 3: 31:40

We arrived at the conference a bit early and helped with the final preparations and met some of the group leaders. Everyone at the conference was so friendly and welcoming. During meals, attendees could sit wherever they chose, so we sat with different people to meet and welcoming. During meals, attendees could sit wherever they chose, so we sat with different people to meet and greet While visiting with our new friends. At lunch I mentioned the book King of Hearts to express how good it was, mentioning the story of the first successful cross circulation. It was really the beginning of congenital heart surgery. As I was talking to one gentleman, he pulled out his copy and said yes, I have read it. I am that little boy. Tears flooded my eyes as I realized how current CHD history really is Incredible.

Speaker 3: 32:26

My husband and I went home very excited about the conference and our new friends who knew how much it would change the course of our lives. We volunteered for ACHA and I even became a board member. We have attended every conference since, except the one during the Florida hurricane. At every conference they provide great sessions about different CHD topics such as pregnancy, exercise, defect-specific care and much more. Mostly, we have enjoyed visiting with people who could relate to my medical issues. So much encouragement. At the end of each conference we shed tears, not saying goodbye. We say see you next time, hoping to attend the next conference. What an amazing experience to meet so many others. My Emory cardiologist said you know parents from the Heart Centre at Children's Healthcare of Atlanta, chia, could use the same encouragement. Here is the phone number to contact them. A couple months later, chia invited me to speak at their next parent meeting. Nervous as I was, the presentation went much better than I expected. Almost every mother stood in line, some of them in tears, to thank me for bringing them hope for their children. Bing On the way home, I suddenly understood my grandmother's words you should write a book.

Speaker 3: 33:57

Parents and families would appreciate reading the story of my middle class family and my life with the CHD. The next day I bought a notebook and pencil, drove to my doctor's appointment, checked in and started writing. I wrote in a heartbeat a child's heart, a surgeon's hands, a life of miracles for parents, grandparents, friends or anyone who has been affected by CHD. Because of the amount of research, it took two years to write the story. Details were important. It was necessary for me to learn more about my surgeons and doctors through my surgical records. During the process, I arranged a lunch with my first surgeon's wife. What a delight. The surprise and bewilderment on her face when she walked in was a joy and very emotional. Are you Kim? I nodded while standing to greet her. Yes, I replied. You're normal, you're healthy. Looking we hugged and tears slid down our cheeks. Meeting me reminded her that the sacrifices of being married to a surgeon were worth it.

Speaker 3: 35:10

To research my first surgeon, I went to John Hopkins. They have pictures of each class that Dr Blaylock taught how to perform the Blaylock shunts. Looking up and down the walls, I didn't see a picture of my surgeon. An older gentleman came out of his office and asked if he could help. I explained why I was there and he asked what was your surgeon's name? I explained why I was there and he asked what was your surgeon's name? Dr Conrad Lamb. I replied With his hands behind his back. He replied oh honey, you won't find his picture. He was brilliant. He heard about the surgery and taught himself. I have a feeling it is good that my parents didn't know that Apparently he was extremely talented. I am one of his success stories.

Speaker 3: 35:58

Our journey has been full of challenges and successes. So many great experiences. After writing my book, they asked me to speak at events up and down the east coast and a bit in the midwest. My husband and I have met so many great CHD families and other adults who know no one with a CHD or their specific defect. My grandmother's encouragement to write a book has proven to be a great idea. After all, helping others affected by CHD has been full of blessings for all of us. Kimberly's book In a Heartbeat reveals more about meeting and marrying her husband and the adoption of their two-day-old daughter Stephanie. Kim was born in 1960 and married Tom in 1981. They currently live in Atlanta, georgia. They have spent several years advocating for congenital heart defects nationally and locally, including volunteering at Camp Braveheart for 15 years. She loves her family and enjoys spending time with her precious grandchildren and great-grandchildren. A podcast featuring an interview with Kim and her daughter Stephanie can be found at lovingabrokenheartwordpresscom, episode 12.

Speaker 1: 37:15

Full Circle by Brenda Lane Phillips, md. So many days feel surreal that I often wonder was it just a dream? As I sat in the makeup chair, I caught a reflection in the mirror of former child actor Jeremy Miller from the old 1980s TV show Growing Pains. He was sitting across from me. His face had aged but he was still recognizable. Years ago I liked the character he played on the sitcom and often wished that my home life was a little more like his fictional one. Close your eyes. The makeup artist patted my face they're almost ready for you.

Speaker 1: 37:52

My heart raced as I walked onto the set of Fox and Friends with Jeremy to discuss our newly released book and our 30-year friendship. Wow, this dream is wild. How did I go from my rural Louisiana life all the way to New York City to be broadcast across the nation? I called Dr Tom Vargo in 2012 to share my good news I had passed my pediatric cardiology boards with needed accommodations. It felt good to hear him call me smarty pants. It was the highest I had scored on any national standardized medical examination.

Speaker 1: 38:31

Years earlier, I had experienced the same unbridled excitement that I had felt on the Fox and Friends set. I had been calm until Buzz Aldrin's name was mentioned overhead. I nervously began rehearsing my speech in my head. No one had told me an astronaut was going to be attending, standing on the ballroom stage in the famous Beverly Hilton. I got a sense of deja vu. I had certainly been here before, although not in this exact space. I saw many familiar faces as I glanced around the room. I knew some for the characters they played in movies and television. A few had won medals during the Olympic Games and others were from the pages of history.

Speaker 1: 39:13

I stood there in disbelief as I shared the story of a young boy with a broken heart. I spoke of all the young lad's mother had done to make him less blue In his eyes. His family had splintered because of his imperfections. I told how the work of the Starlight Children's Foundation had once brightened his world, before presenting an award to the organization's chairman emeritus, thanking him for his dedication to children. Many in attendance likely assumed the young boy was one of my patients. Ladies and gentlemen, please welcome Mr Steven Spielberg were the words that came out of my mouth. But the words that echoed in my head were came out of my mouth. But the words that echoed in my head were wow, this can't be real. I don't want to wake up.

Speaker 1: 39:57

A few years before, I had walked across the stage in a New Orleans hotel to receive a scroll Dr Brandon Lane, phillips they announced. It was the first time I had heard those four words said aloud together. I had dreamed of this day many times before, but this version was better than the rest. My longtime friend, dr Vargo, walked with me, placed a doctoral hood over my head and exclaimed this is a great day, doctor. As we exited the stage. He had been there from the start and knew all the highs and lows that had led up to this day. At the end of the ceremony, my classmates and I danced down the aisle with green umbrellas in hand as a jazz band led our way out of the ballroom. Did that really just happen, I thought, as I remembered the countless times Mama had told me don't get discouraged. God made up in your head what he missed in your heart. She tried to ease my self-doubt by encouraging my dreams, regardless of how improbable they seemed.

Speaker 1: 40:59

A few weeks before my graduation, I was having lunch with my friends when Dr Vargo called to say Congratulations, I'm so glad you matched with our pediatric residency program. I'm going to help you find a new doctor, but I'm going to look forward to being your academic advisor during your time here. I hung up the phone and rejoined Jeremy Miller and his co-star Kirk Cameron. We were on the set of their second Growing Pains reunion movie, which was being filmed just up the road from my New Orleans apartment. They even gave me a small part in the film.

Speaker 1: 41:32

I had dreamed of reconnecting with the cast of my favorite sitcom many times. More than once I dreamed the cast was on hand for the white coat ceremony that welcomed me into Tulane Medical School. Of course they weren't there, because that would be a little over the top. Sometimes my imagination could run wild. Growing Pains had been off the air for over a decade. Wasn't it unbelievable that Jeremy and Kirk were there to celebrate with me just as I was about to graduate from medical school and on the very day I would see my dream of working with Dr Vargo come true. It all seemed unreal and yet perfect at the same time, especially since I began doing really well in school after I received my wish. I could barely wrap my head around all that had transpired in a single rotation of the earth. A Hollywood writer couldn't have scripted it any better, I thought as I drifted off to sleep. That was their last day of filming and my friends left town the next day. Timing was everything.

Speaker 1: 42:33

During my third year in medical school, I was diagnosed with a reading learning disability. My internal medicine clerkship director insisted that I be tested. After noticing that I did better on non-standardized exams, she knew that I had needed open-heart surgery. Following my first year of medical school, I was reluctant to be tested. I was already the student with the bad heart. I didn't want to be the one who needed additional time on exams too. She was the first to tell me that learning disorders were common in people who had congenital heart defects.

Speaker 1: 43:08

When I was 11, I needed another heart catheterization procedure. I was jittery and nervous, waiting for the procedure to begin. I begged Dr Vargo to let me be awake so I could watch him work. He reluctantly agreed, but only after I told him I'm going to be a cardiologist like you one day. As I waited, I received a call from a lady named Amy. She confirmed the Starlight Children's Foundation would grant my wish to meet Jeremy Miller after a month of recovery. We've taken care of all the details. A limo will pick you and your family up at the Beverly Hilton. Jeremy will meet you when you arrive at the studio lot. You will have dinner with the cast and Jeremy will give you a tour before you watch a taping of the show. Before I left the hospital I remember thinking did Amy really call?

Speaker 1: 43:57

The thought of that wish was certainly bigger than anything I could imagine. They tested me for special education in kindergarten and I continued to struggle with reading in the first grade. Having to repeat the year was devastating. It made me feel I wasn't smart. Mama likely never dreamed her baby boy would be born with Tetralogy of Fallot. How could she dream of something she had never heard of before my birth? I'm quite sure my life today would be different if I had been born more normal.

Speaker 1: 44:28

Growing up I often wished my circumstances were different. Who wouldn't want to play football like their friends or have the perfect family like the ones you see on TV? Looking back, I realize I have been fortunate. My path in life has crossed with exceptional people, and some of them more than once. Many people don't live to see even one of their dreams come true. I have had more experiences and opportunities than I could have ever imagined. I have seen my life come full circle time and again. Yet at times I still wonder what life would be like without a heart defect, but deep down I wouldn't want to change a thing. The rest of my story can be found within the pages of when I Wish Upon a Star, a memoir penned with a childhood friend about the peaks and valleys of life. Brandon Lane Phillips MD was born in Alexandria, louisiana, in 1979. He was born with Tetralogy of Fallot. Currently he is a pediatric cardiologist practicing in West Monroe. He has best friends with an English bulldog named Praline. I hope you were as inspired by this chapter as I was.

Speaker 1: 45:42

I have enjoyed putting together anthologies over the last couple of decades. I'm getting ready to celebrate the 25th anniversary of my first anthology, the Heart of a Mother. I'll be conducting a special Kickstarter campaign for the release of a special edition of the book. Stay tuned for more information about that coming up in the fall of 2024. Megan and I are also excited to begin working with authors for the fourth book in the Heart of a Heart Warrior series. If you're interested in taking part in the book, please visit babyheartspresscom for more information under the tab labeled Submissions. Baby Hearts Press has been in business since 1996 providing resources for the congenital heart defect community. It would be an honor for us if you would request our books for your public library so others in your community would have resources available when they need them. Next week, megan and I will conclude reading the third book in the Heart of a Heart Warrior series.

Speaker 2: 46:42

We hope you've enjoyed hearing us bring to life. Words from authors in our community, adult authors who were born with a congenital heart defect.

Speaker 1: 46:51

Until then, I hope you have a great week and remember my friends. You are not alone.

Speaker 4: 46:57

Thank you again for joining us this week. We hope you have become inspired and empowered to become an advocate for the congenital heart community. Heart to Heart with Anna, with your host, anna Jaworski, can be heard at any time, wherever you get your podcasts. A new episode is released every Tuesday from noon Eastern time.