Heart to Heart with Anna

Heart Mom Kelsi Rogers on Jett's Electrical Problems with His Heart

April 02, 2024 Kelsi Rogers Season 19 Episode 443
Heart Mom Kelsi Rogers on Jett's Electrical Problems with His Heart
Heart to Heart with Anna
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Heart to Heart with Anna
Heart Mom Kelsi Rogers on Jett's Electrical Problems with His Heart
Apr 02, 2024 Season 19 Episode 443
Kelsi Rogers

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This episode of "Heart to Heart with Anna" features a very special heart mom. Kelsi Rogers talks about the surprising circumstances around her son's heart condition. Born with an electrical problem in his heart, Jett has already faced life-and-death situations several times in his short life. Not even three years old yet, he has undergone an ablation and an open-heart surgery.

Tune in to find out what kind of heart defect Jett has, why the ablation was so extensive, and what kind of surgery eventually saved his life.

Following the interview with Kelsi Rogers, co-editors Megan Tones and Anna Jaworski read the last half of Chapter Seven: Facing My Mortality from their new book The Heart of a Heart Warrior Volume Two: Endurance.

Links mentioned in this podcast:

HeartFelt: https://www.facebook.com/heartfeltscreening
Tiny Tickers Trot: https://runsignup.com/Race/Events/CA/Chico/TinyTickersTrot

Baby Hearts Press: https://www.babyheartspress.com (for more information on the book The Heart of a Heart Warrior and more!)

To sign up for a Baby Hearts Press Book Study, visit our website here: https://www.babyheartspress.com/volume-2

Become a Supporter of the Podcast: https://www.buzzsprout.com/62761/supporters/new

& so much more
A bi-monthly podcast where we share the stories of our Caregivers, patients and...

Listen on: Apple Podcasts   Spotify

Support the Show.

Anna's Buzzsprout Affiliate Link

Baby Blue Sound Collective

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Show Notes Transcript Chapter Markers

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This episode of "Heart to Heart with Anna" features a very special heart mom. Kelsi Rogers talks about the surprising circumstances around her son's heart condition. Born with an electrical problem in his heart, Jett has already faced life-and-death situations several times in his short life. Not even three years old yet, he has undergone an ablation and an open-heart surgery.

Tune in to find out what kind of heart defect Jett has, why the ablation was so extensive, and what kind of surgery eventually saved his life.

Following the interview with Kelsi Rogers, co-editors Megan Tones and Anna Jaworski read the last half of Chapter Seven: Facing My Mortality from their new book The Heart of a Heart Warrior Volume Two: Endurance.

Links mentioned in this podcast:

HeartFelt: https://www.facebook.com/heartfeltscreening
Tiny Tickers Trot: https://runsignup.com/Race/Events/CA/Chico/TinyTickersTrot

Baby Hearts Press: https://www.babyheartspress.com (for more information on the book The Heart of a Heart Warrior and more!)

To sign up for a Baby Hearts Press Book Study, visit our website here: https://www.babyheartspress.com/volume-2

Become a Supporter of the Podcast: https://www.buzzsprout.com/62761/supporters/new

& so much more
A bi-monthly podcast where we share the stories of our Caregivers, patients and...

Listen on: Apple Podcasts   Spotify

Support the Show.

Anna's Buzzsprout Affiliate Link

Baby Blue Sound Collective

Social Media Pages:

Apple Podcasts
Facebook
Instagram
MeWe
Twitter
YouTube
Website

Speaker 1:

I remember my husband and I were together, Dear I'm excited to be by Leslie. Castro-dupin. This is the start of my big journey.

Speaker 2:

By Leslie Castro-Dupin hey.

Speaker 4:

This poem is one depiction of how a dying person is a small part of me.

Speaker 3:

The poem also provides an insight of how poorly one's converse feels like In the writing process.

Speaker 4:

I'm hard to heart with him. I am in a trance, Misspelled words, Om and enjoy in my head. I've been so important to you, thank you, I made a mission.

Speaker 2:

I've been a master, I was all a blob of oxygenated blood flow all because of the decaying heart and the lack of oxygenated blood flow and jet's extreme relation dear. We've fought so many battles together. And the lack of Relation, dear. I'll be honest with you, we've fought so many battles together. And the lack of oxygen.

Speaker 4:

you've seen me at the worst. You've seen me at my worst Too bad. We've fought and stick around, but it's truly your time to go. Today is the day like any other.

Speaker 3:

It's up to you.

Speaker 4:

It's truly your time to go Check out those when life is a date.

Speaker 1:

Today is the day I get to be honest. It's up.

Speaker 4:

Thank you for keeping my heart beating.

Speaker 3:

Thank you for the first few beats of light. Thank you for pulling through our first surgery.

Speaker 4:

I just wanted to say thank you. Thank you for keeping my heart beating, thank you for the first few beats of light, thank you for pulling through our first surgery. Thank you for keeping my heart beating, thank you for the first few weeks. Thank you for pulling through your first surgery. Thank you for the second surgery. Thank you for all the cardiac tests. Thank you for not failing me, even though you tried to Thank you for the second surgery. Thank you for not failing me Even though you tried to.

Speaker 4:

Thank you for not failing me, even though you tried to on one too many attempts. Thank you for the third surgery, even though I had my doubts and fears. Thank you for the third surgery, even though I had my doubts and fears. You are as strong as a rock, you always managed.

Speaker 1:

We could be in a hurry in time.

Speaker 3:

You were the hatred and the frustration.

Speaker 1:

Goodbye for everything. You were my friend, you were my foe, you were the happiness in me.

Speaker 3:

You were the sadness in me.

Speaker 1:

You were as strong as a rock.

Speaker 3:

You were the part of me that I loved. You were the parts of me. I hated.

Speaker 4:

You were the hatred. You were the hatred, anger, frustration. You were my one and only first true love.

Speaker 3:

You were the part of me and I rest in labor.

Speaker 1:

You were the part. Thank you for everything. He was having a very. You were my 18, only first true love to august rest in peace.

Speaker 3:

Okay, thank you for everything, just a very tough time.

Speaker 1:

August 8th 2019. Breathing that's not doing well. Rip. We still didn't know if that was even a routine or a routine, or what was happening when you're facing a break of death the realization of having the surgery removed. Rip.

Speaker 4:

When you're facing a break of death, the realization of having the surgery removed from your body, replacing your organ with someone else's organ, and difficult to process.

Speaker 1:

At least the process was for me, so I wrote this literally hours before my heart rate was going to be 20, 20, 19. A special thanks to the cardiac surgeon, Dr Christopher Scoriotino. A special thanks to the cardiac surgeon, Dr Tracy Snyder. Instead, I was just like where's my?

Speaker 3:

name Because he was rushed off to the hospital, and Dr Tracy Snyder, your child, instead, I was just like where's my name? Because he was rushed off to the Hepatitis C coordinator in Pittsburgh, and my husband and Tracy Snyder, I don't pay him the NICU when I got the intravenous drug.

Speaker 1:

We'll go ahead and have you follow up the intravenous when he's 10 days old at a special. Thank you to my 29-year-old female.

Speaker 3:

I got a culture monitor on at Tad Egg, old Oregon Dota and a party action show team at Presbyterian Hospital in Pittsburgh and my family.

Speaker 1:

A special thanks to my 29-year-old female intravenous drug.

Speaker 4:

So we 29-year-old female intravenous drug at a 29-year-old organ donor intravenous drug. I am mighty, but I may live to tell my story.

Speaker 2:

Leslie Castro is a congenital heart disease survivor who was diagnosed in 1973.

Speaker 4:

So one month old, a nice, nice PI who was diagnosed with pulmonary stenosis and more of a medical report which was about two hours from us Pulmonary stenosis and multiple other congenital heart defects and multiple other congenital heart defects. So in 1985, 31 years old, she had the heart damage procedure In 1905, there's something going on about the heart damage procedure In 2019,. Leslie Willing accepted a hepatitis C from late-heart disease three procedures and Leslie Willing accepted a hepatitis C in 2019.

Speaker 1:

Leslie Willing accepted a heart disease, her leaving family grew up with congenital heart disease.

Speaker 4:

It didn't stop her from becoming a 29-year-old female in the future. She was receiving a master's degree in education.

Speaker 1:

She has traveled extensively throughout the United States, canada, mexico and the Caribbean, central America, europe and the PFO.

Speaker 4:

He had a very small degree in English and Western English and she loves traveling, hiking, reading photography and exercising Leslie has been an advocate for CHD Central America since 2006 and in a 24-hour period until her demise. So CHD is over 36,000 dB.

Speaker 3:

So, premature ventricular contractions extra beats leslie has been an advocate for chd since 2006, advocating yeah, it's a very advocating with the adult congenital and conquering chd and this leslie has been an advocate for chd since 2006 advocating with the adult conenital Heart Disease Association and conquering CHD.

Speaker 1:

On top of that, he was also having significantly long runs of ventricular tachycardia. That's how we found out his diagnosis of VT.

Speaker 3:

Oh my gosh. And yet here you'd had him home for a week and I imagine you had been feeding him and bathing him, and I imagine you had been feeding him and bathing him, all those first time things that we moms do, and you hadn't noticed any problems. He was completely normal. Isn't that amazing that he seemed so fine and yet internally, invisibly, he had all these funky things going on with his heart. So the good thing is he never fainted, he wasn't having trouble eating.

Speaker 1:

We had issues with breastfeeding, but I was pumping and he was taking a bottle and he wasn't modeled, he wasn't turning colors like very typical newborn.

Speaker 3:

Yeah, okay, Was he jaundiced?

Speaker 1:

No.

Speaker 3:

Isn't that amazing? It's amazing to me how the body can compensate and how things can not seem as urgent as they are. So now you're terrified because you've just been told that your kid's heart is just erratic and it's not behaving properly. And nobody wants to hear this. What was their solution to this condition?

Speaker 1:

He was started on procranol in Blocker. He did O'Hanocranol for a couple months and then he started having severe low heart rates. He was getting down in the 40 beats per minute at three months old. He wasn't rousable, like we couldn't get him to wake up. So we at the time had him monitored with a NEVO wrist monitor so it measures heart rate and oxygen. We also have the outlet foot monitor. I mean we went crazy just trying to monitor him, and thankfully so, because we ended up on a life flight, because when he was in about 40 beats per minute our hospital doesn't love touching pediatric patients. It's not a children's hospital locally, so they prefer to transfer them. So then he eventually was changed to an antiarrhythmic. He was put put on a pleconide, which he did okay with symptomatically, but it just wasn't really doing the job. He still had a significant amount of extra beats and it just was clear that he wasn't going to quote unquote grow out of this out of this.

Speaker 3:

No wonder why he's lethargic. His heart is working to keep him alive and he doesn't have the energy beyond survival at this point. So that's terrifying. Okay, so now we're still not seeing him grow out of it. The new medication is not working, so now what?

Speaker 1:

So the flecainide probably started around four months old after one of our life flights and we stayed on that for a significant amount of time. And then, when he hit one is when we had a talk with his electrophysiologist, a very serious talk about whether it was in Jet's best interest to move forward with an ablation. We made the extremely hard decision to move forward with the ablation.

Speaker 3:

So for people who don't know what an ablation is and why this is so hard for Kelsey, an ablation is actually an invasive procedure. It's not open heart surgery. Most of the time although my child did have an ablation during an open heart surgery you don't have to have an open heart surgery to have an ablation, but they go in with a catheter and after they find out where the faulty pathway is, they actually burn it so that it can't continue to have that faulty pathway. Now what's scary about ablations? And I am not a doctor, I'm just heart mom. But because my kids had ablations in the past and because I am curious about this and feel a need to know it, I do know that sometimes ablations can occur later. So it's not a fix.

Speaker 3:

Like so many things with congenital heart disease, this is not a one and done. It's just not so. You do it once and you know it's invasive and it's scary Anytime your kid has an ablation. It's scary because you never know what else could happen. So I commend you for doing the research. It sounds like you have a good electrophysiologist who studied Jet extensively, so it's like you had lots of data for him to study him and he felt that, to preserve his heart as best they could, that an ablation would be the right choice for him. At one year of age, how big was he, had he been gaining?

Speaker 1:

weight. Okay, he had. Honestly, from the outside you would never think that there was anything going on. Internal Jet is brilliant. He's so smart. He knows probably more than I do. He's just incredible. He looks just like a chubby little one-year-old.

Speaker 3:

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 4:

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:

You made a hard decision and they said, okay, we're going to go in to do an ablation on this baby. Of course they had to anesthetize him and that's hard and intubate. Well, yeah, of course that's to preserve the airway, so, just in case something does happen, they don't have to do it emergently. So yeah, he's been intubated and they're performing this ablation. Tell us how it went for him.

Speaker 1:

My husband and I sat in this sad little lobby for what we thought originally was going to be between three, four hours for this ablation, and his ablation ended up being around nine hours.

Speaker 3:

Oh, my goodness.

Speaker 1:

Yeah, yeah. And that's how long my child's open heart surgery was yeah, I can't imagine having a nine hour ablation wow, right, okay, yeah, so what had happened? The electrophysiologist came out and it was like he hadn't been to war. What he ended up finding is originally, we were thinking that there was only one spot that was going to need to be ablated, and there was 17.

Speaker 3:

Oh, it wasn't happening in just one area, 17. So just when they thought they would get a normal rhythm. It would still be erratic and they had to go find the next one.

Speaker 1:

Yes, his diagnosis got upgraded to fascicular VT, which is very rare and extremely hard to ablate. We were very blessed that his electrophysiologist took on the task of even ablating the fascicular VT, because most will not, especially in an infant, but fascicular VT is very deadly. So we knew that we made the right decision with moving forward with the ablation.

Speaker 1:

And we were. So on cloud nine, we were just like oh, we did it, we made the right decision. My husband and I get in the elevator to go wait in a different waiting area for post-op and we hear over the loudspeaker code blue, oh no.

Speaker 2:

On floor two.

Speaker 1:

Oh, sweetie, I'm so sorry and you immediately think that's my baby my husband and I just looked at each other and we were like there's no way, right, that's not possible. We just got an update on him and we of course get a call then from his electrophysiologist explaining that they went to go extubate him and, um, they don't know what's going on. He can't breathe on his own. Basically he desatted to high 60s. They had an emergency re-intubate him and at this point I was just like, let me see my baby right now. I need to see him right now. And of course then we're waiting hours because probably trying to stabilize him, you know and sure it's after hours. At this point we're calling on an after hours phone. Oh, my god, let us down. Let us down to come see our baby. What's going on? Someone needs to fill us in.

Speaker 1:

And we get down there and it's like a movie. My knees quite literally buckle when I first see him. He is so swollen, he's intubated. No one should ever see their kid intubated. That's traumatic in itself and he looks awful. He's unrecognizable as my son and I just don't even understand what's happening. So we get quickly transferred up to the PICU. I just keep asking PICU doctors is he going to live? Is he going to live. What is happening? No one knows. No one knows what's happening. We just know he's in cardiac shock, he's in metabolic acidosis and he has acute fluid overload because during the ablation they have to use an irrigation tool to cool where they're ablating.

Speaker 1:

So since his ablation was so complex, even though he was on a diuretic he was on Lasix during it it wasn't enough and he had gained over six pounds in fluid.

Speaker 3:

Oh my gosh. In less than 24 hours, that's a lot of fluid for him to gain, so was he in congestive heart failure no, he luckily was not.

Speaker 1:

They weren't even able to get a sensible line on him for the first 24 hours because he was so swollen. So we weren't able to run enough blood work because at this point he just had a regular ib I think it was in his hand.

Speaker 2:

Sure.

Speaker 1:

We basically spent the first 72 hours just praying and hoping. Everything was so up in the air. He ended up being intubated for six days. He was in the PICU for 10. We went down to a step-down unit about the day before we got released and he had a massive D-sat down to the upper 60s again. So he needed a blood transfusion. He just didn't have enough blood.

Speaker 3:

Oh my gosh, wow, wow. That's so much, and yet he was discharged the next day after the blood transfusion.

Speaker 1:

It was probably like 32 hours later so he rallied back after he got the blood transfusion he did, and it was incredible how his heart rate went back to a normal rate and his oxygen went back to normal. He just didn't have enough blood, like you, got to give me something to circulate. So when he got that he was doing a lot better, he looked better. He had been so crazy pale as you can imagine and he just looked much, much better. Sure, he just looked much, much better. But of course he had been on every medication under the sun and they had put him on vancomycin. They didn't know why was he reacting like this to an ablation? This is so atypical.

Speaker 3:

However, we've noticed from the beginning that Jet is atypical. If 99.9% of the babies who have arrhythmias diagnosed in utero are fine, that was not Jed. It sounds to me like he has been that one in a million baby and yet look at what a tough guy he is. He's rallying back. He obviously had a strong will to survive despite all of these things. But a nine-hour ablation that is just torture. That is such a long time for him to have to be still and it's just not normal. Babies are not normally still like that for nine hours and having people poke wires in their heart and I mean I can understand his body saying whoa, what is going on? And being in shock. It might be weird if he didn't go into shock after something that extensive, but you're still dealing with the bradycardia. Are they concerned at this point that he might need a pacemaker?

Speaker 1:

No, so luckily he hasn't had any lower heart rate after the ablation, but of course he does still have some extra beats. It's not even close to what it was before and we haven't seen any VT. But following this ablation he had been home for only 20 days and then at the park looked like he fell asleep in my arms and one thing I know about my son is he does not go to sleep without a fight. And I knew something was very, very wrong and I remember I yelled at my friend call 911.

Speaker 3:

And I laid him down and started CPR on him and good for keeping a level head, mama, because that's got to be so rough. You knew he's not just asleep, he's unconscious. I got to do something. I'm hoping he was breathing okay at that point. No, no breath, oh my gosh. Yeah, he was breathing okay at that point. No, no, no breath.

Speaker 1:

Oh my gosh he was yeah, he was not there, he was completely model, fully blue. I thought I had seen modeling before, because he's a very pale baby anyways, but this type of modeling was so shocking there was one piece of the modeling that was over his part that I was just like oh my gosh, like this is insane. There was an off-duty firefighter there.

Speaker 3:

Wow, incredible, okay so you had an angel there.

Speaker 1:

Yes, yes, he was sent from above 100% and he started CPR for me on Jet and he resuscitated him. He was there with his two kids, who are actually around the same age as Jet His wife is my best friend now I bet yeah. And so we get to the hospital and at point, jet has undetectable blood pressure. He is around 96 degrees.

Speaker 1:

He is throwing up blood. My husband and I get pulled aside by a social worker preparing us for the death of our son. Oh my gosh, I couldn't even look at her. I was so rude, but I was was like I can't do this right now. I just need to be in the room with him. I need to figure out what the next steps are. I'm not giving up. We're not done here. They had an echo tech come in who's been doing echoes for 30 years and she said she has never seen on a child's echo what Jet had, which he ended up having a left ventricle pseudoaneurysm, the left ventricle of his heart ballooned out and the only thing keeping the blood in is the outside skin of the heart. So no muscle.

Speaker 3:

That's why you saw the modeling color on his skin. Oh my gosh, she can't believe her eyes Truly.

Speaker 1:

She called over another tech.

Speaker 3:

Sure, absolutely. They let you be in the room while this was happening.

Speaker 1:

Yeah.

Speaker 3:

Well, that's a blessing so you could be there with your baby. Just to let him know mommy's here.

Speaker 1:

Yeah, At this point they're having to give him boluses of fluid to get a detectable blood pressure, Like stuff is not good and we live in a very small town so we don't have a Ferdiav unit for kids, and so they're looking at me like I'm so sorry that your child's about to die. At this point the doctor is talking to Jets, UC Davis doctors, so we get him on a life flight. It is a no parent life flight, Of course. We drive down there. I don't remember walking into the PICU two hours away, but I somehow get up there and I'm met at the doors by the pediatric cardiac surgeon and he sits me down, draws me a picture of what's going on and says your son is a ticking time bomb and I need you to sign consent forms right away. My husband hadn't gotten to UC Davis yet. We had to drive separately because he waited to load jet on the life flight. I took off so that I can meet him there when he landed.

Speaker 3:

You're all by yourself and you're saying here, sign this paper. What were they going to do?

Speaker 1:

He said this surgery is extremely complex. We are going to need to cut out the ballooned area and patch it. He said he will be going on bypass and this surgery is going to be very long and challenging and I can't make any guarantees.

Speaker 3:

Oh, my word. And you're there without your husband and you're having to make this decision, and what decision did you have? It was either this or a death sentence. I mean really, there was no choice, no choice, no choice at all.

Speaker 1:

Yeah, I am very lucky there's a nurse practitioner that's part of his cardiac clinic. Her name is Stacy and she's incredible. She held my hand through the whole thing.

Speaker 3:

Wow, okay. So now your husband makes it while the baby is in surgery.

Speaker 1:

Yes, yeah, so he's in surgery. We're just waiting, waiting, waiting. We're not getting any updates, we don't know, anything.

Speaker 1:

My only thought was at least with him in surgery, he's sedated and not in pain. Whatever the outcome may be, he's not in pain right now. I was scared to be hopeful. Of course, my baby's my world, he's everything. Finally, I could not take it anymore, so I went back to the hospital they had sent us up at Ronald McDonald and I was like I got to get an update and as I was going in I see my baby on this giant bed being wheeled in with every machine known to man and I was like he lived. My baby is alive right now.

Speaker 1:

The cardiac surgeon pulled me into the conference room. I think my husband teleported because he was there so fast. The surgeon takes my hand and he says that surgery went as best as it probably could. Can I show you Jet's heart? And he showed me a picture of his heart and the patch and it's a one centimeter patch which in a tiny baby heart is really big. And he lived. He was in the PICU for less time than after his ablation. He was in the PICU for five days. Then we got to go home. We got to bring our baby home.

Speaker 3:

Isn't that amazing. We are lucky to live in the day and age we do. We are lucky to have found each other. I'm glad you belong to Heart Moms. Before we go, I know that you have a special event coming up. Can you tell my listeners about this event and if they can take part in it?

Speaker 1:

Yes, that would be amazing. So on June 30th we are putting on a five-day in Chico, california, and it is in support of a 501c3 called Heartfelt. Heartfelt does cardiac screenings to California communities. They provide ECHOs and EKGs. They have screened over 60,000 people and saved over 1,000 lives. They're absolutely incredible. We really need funding to keep this going. They screen people from ages five years and older. They do a lot of adolescent athletes. They'll go into schools and what city is this in?

Speaker 3:

Chico, chico, california.

Speaker 1:

Is there a website where they can get more information? We have a Facebook event. It is called the Tiny Tickers Trot. It is a 5k run slash walk or you can look it up on run. Sign up and look up Tiny Tickers Trot. If you're not able to make it and you want to consider donating, there's a donation button on the website as well.

Speaker 3:

Great, and I'll make sure that I have those links in the show notes. So, friends, if you're on your exercise bike or if you're driving to work, don't worry about writing it down. It'll be in the show notes and that's the description of the show. So thank you so much for coming on the program today, kelsey. Yeah, thank you so much. Well, friends, that does conclude the interview portion of the podcast. We'll take a short break and when we come back you'll have a chance to hear my co-editor, megan Tones, and me read from our new book, the Heart of a Heart Warrior.

Speaker 4:

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 3:

I'm excited to continue reading from the Heart of a Heart Warrior, volume 2. Last week, megan Tones and I read the first half of Chapter 7, and this week we will finish that chapter and read the conclusion. I'll start with New Diet New Life by Travis Martin. New Diet New Life by Travis Martin. Life was good. I thought nothing would ever go wrong. Unfortunately, that is not always how life works.

Speaker 3:

In 2013, I ended up in the hospital dehydrated and in renal failure. This was just after my second year of college. The previous two years looked like a scene out of Animal House. I was drinking regularly, living off dollar menus and sleeping as little as possible. I was making time for work, school and the fraternity life, and my health was not on my radar. Although the hospitalization was scary, it was not enough of a wake-up call, even when I heard the doctor in the hospital say my kidneys were failing. The only actual change I made was that I started seeing a nephrologist.

Speaker 3:

My childhood was unbelievably normal. After being born with an atrioventricular septal defect and a hypoplastic left ventricle, in March 1993, I received the gift of life in a heart transplant and thrived from that point forward. I played baseball from the time I could stand and got my black belt in taekwondo by the age of eight. It was a shock to most people to learn of my transplant, seeing the accomplishments and success I had as a kid. As time went on, I kept the information to myself to reduce the coddling and worry people felt after learning. I had a condition. I was told often that I was just as healthy, if not healthier, than most kids. My age as 2014 started, the partying slowed down, but my diet seemed to take a serious downturn. I wasn't facing any immediate health challenges, but I started gaining weight and eventually hit my heaviest point in my life. My kidney function remained low, but I was only being told that there was a problem, without being given any ways to repair the situation. There was a disconnect that made me feel like I was completely doomed and the only way to improve things would be with medication and an eventual kidney transplant.

Speaker 3:

In May 2015, I was with a close friend of mine, a vegan and lover of all things holistic. We spent most of our time watching documentaries and playing Mario Kart, usually unproductive, but on this day, I experienced a paradigm shift, one that would ultimately change my life and the trajectory of my health. We checked out a new documentary titled Fed Up, an explanation through storytelling of the negative impact of sugar consumption in processed food and most products we enjoy on a day-to-day basis. I was shocked. The simplistic breakdown of the problem resonated with me as I left her house. After the film, I went straight home and watched another film, fat, sick and Nearly Dead, about an Aussie that came to America to complete a 60-day juice cleanse. In just three scant hours, my entire perception of food and diet had changed. It was as if a freight train had run me over and backed up. To make sure I got the point. I went into my kitchen and threw away everything that didn't align with my new beliefs, which was pretty much everything I had. The next day was Cinco de Mayo. I woke up and found a juice place near my house and began my journey as a vegan.

Speaker 3:

Over the next two months, I juiced two to three times a day and only usually ate one meal a day. To be perfectly honest, the lack of meals resulted from my lack of cooking awareness or what I could eat to fit my alternative lifestyle. Looking back, it makes perfect sense. I lost 40 pounds in two months. I was basically only taking in liquids.

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Right around this two-month mark, I went to get labs done to see if the change was more than just weight loss. I received a call a couple of days later requesting that I go back in for labs because the results appeared to be wrong. A few days after the second draw, I dropped by the nephrologist's office to see how everything was looking. Her eyes widened when she saw me. I looked healthier, more vibrant and leaner than I had at any point before this. When I told my doctor I was living a vegan lifestyle, she leapt out of her chair and hugged me in excitement. Turns out, the labs were correct and this change in lifestyle had a profound effect on my kidneys, returning them to nearly normal function for the first time in almost a decade. It seemed that this may be an answer to prolonging my life and improving my overall health.

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As the months progressed, I got into a groove and learned how to eat properly while still juicing every day. My diet has been extremely clean, but at times I have fallen a bit short. The one thing that has stayed consistent is the lack of animal proteins. The last four years have had moments of strong dedication and absolute uncertainty. Ultimately, though, this change has motivated me to continue to research and listen to what my body needs, on the path to becoming the healthiest version of myself, as my health has improved and brought me amazing results. My desire to help people has become a passion. I enjoy sharing my story to motivate and encourage others. I am now happily married and have resumed living the normal life I had throughout my childhood, travis Martin continued to work on educating others on using nutrition to live a healthier life.

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He also worked with a local not-for-profit with transplant families, helping to educate them on making the most of their second chance at life. Travis and his wife Pamela had a baby girl, ellie, in July 2021. Travis experienced a severe transplant rejection episode of his heart in August 2021. The pandemic had taken a toll on the monitoring of his health. The rejection was being managed and he was improving, although facing a future re-transplant. Unfortunately, he did not get the opportunity for that second transplant as he contracted chickenpox in January 2022. Chickenpox is dangerous in the immunocompromised and in just one short week it took his life. Editor's note, special thanks to Don Martin for helping to edit Travis's contribution after he passed away. Our condolences to the family and all who love Travis.

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Clear by Lauren Elizabeth. I never know when it will come, how long it will stay or even if it will ever go away. It always takes me by surprise. There's no rhyme or reason to its ways. I try not to panic, to stay calm, but soon I find fear approaches on. I take slow, deep breaths, but my breath feels so weak and my heart leaps in me. As the palpitations make me dizzy, I feel it beat in my throat, my chest tightens and my heart feels squeezed by a rope. Feeling faint thoughts run wild through my head as I reflect on death.

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Fear leaves as I pray and I am reminded that I am not in control of today, not today, not tomorrow, for the Lord is in sovereign control and even me he holds. The sirens are loud, doctors are all around, unfamiliar with my condition. When fear creeps in again, I am reminded of their position. They are just instruments in his hand and he is the ultimate I am. The pain is real, I can't think straight, but he keeps me sane. Small, silent prayers of truth draw me near and are all I can manage to cling to.

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The night seems long as hours pass on, but what precious time I pray. I do not waste. I want my actions and words to reflect his name, even amid lasting pain. Finally, the time comes and the Lord gives me peace. As the doctors put me to sleep, fading away fast, a few tears run down my cheek. As I have conflicting feelings about the evening, the question arrives in my mind will I awaken this time? To live is Christ, to die is gain? Is what I hold to? As I fade away Clear, I first hear the noises. As I slowly open my eyes and look around, I utter a prayer, thanking the Lord for awakening me to another day. My heart feels normal. The pain is gone, yet exhaustion draws on.

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At a young age, doctors restructured my heart that was missing the left part, my heart that was missing the left part. My heart surgery caused rhythm issues due to scar tissue. Supraventricular tachycardia is the name for your heart beating like it's insane. But what beauty there is being physically reminded that every heartbeat is in his hand and that which seems unplanned is in fact actually under his command. I ask myself where are my priorities? Am I serving the one in all authority? I don't want to waste my life, for this time is fleeting and every day he gives me a blessing To the cross, I must cling in the spirit, I must abide in Jesus, I must hide every day until eternity. For on that day when you finally don't awaken and you get to meet your maker, what a waste it would be to say I lived for the finite things.

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Lauren Elizabeth was born in Texas on January 27, 1992, with hyperplastic left heart syndrome. With hyperplastic left heart syndrome, hlhs and transposition of the great arteries, tga. At 18 months old she underwent the Fontan surgery and was given a pacemaker that she no longer relies on. In high school she developed arrhythmia problems due to scar tissue on her heart, which began the start of her battle with arrhythmia. Over the years, lauren has experienced a few different types of arrhythmias and has gone through good seasons and hard seasons, but one thing always remains the same her faith in Jesus being with her every step of the way. In her free time, lauren enjoys playing guitar, writing and serving her local church. Lauren is currently working on a memoir that she plans to release in 2024.

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Dear Heart by Leslie Castro-Dupman. This poem is one depiction of how a dying person sees her heart before transplantation. The poem also provides an insight of how poorly one's cognitive skills slowly decline in the writing process before transplantation. Misfeld words, omission of words, scrambled words, thinking I made a masterpiece, but in actuality it's all a blob on paper. All because of the decline in heart and the lack of oxygenated blood flow running through the body. Dear heart, we've fought so many battles together from birth until now. You've seen me at the worst and you've seen me at my best. Too bad, you couldn't stick around, but it's truly your time to go.

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Today is the day like any others. It's ups and downs, it's highs and lows, but of all days, your last days, your last hours, your last seconds. So I just want to say thank you. Thank you for keeping my heart beating, thank you for the first few beats of life. Thank you for pulling through our first surgery, blalock-tausick Shunt, who knew that we would pull through it? Thank you for all the cardiac caths, most of which a small-statured man managed to do. Thank you for the second surgery they say it was called the Fontan procedure. Thank you for not failing me, even though you tried to on one too many attempts. Thank you for the third surgery. Even though I had my doubts and fears, you always managed to pull through time and time again.

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Now I must say to you goodbye. Goodbye for everything. You were my friend. You were my foe. You were the happiness in me. You were the sad in me. You are as strong as a rock. You are as weak as a mouse. You were the hatred, anger, frustration, hopelessness and fear. You were the part me that I love. You were the parts of me I hated. You were my one and only first true love my heart. May you rest in peace. Thank you for everything, april 18, 1973 to August 8, 2019.

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Rip Leslie Castro-Dupman. When you're facing the brink of death, the realization of having a surgery remove an organ from your body and replacing your organ with someone else's organ is mind-boggling and difficult to process. At least, the process was arduous for me. So I wrote this poem literally hours before my heart transplant in 2019. A special thanks to the cardiac surgeon, dr Christopher Scoriotino, the hepatitis C coordinator, tracy Snyder-Magaha, and the cardiac transplant team at Presbyterian Hospital in Pittsburgh and my family, and a special thank you to my 29-year-old female intravenous drug addict organ donor who helped prolong my life so that I may live to tell my story.

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Leslie Castro is a congenital heart disease survivor who was diagnosed in 1973 at four months old with tricuspid atresia, pulmonary stenosis and multiple other congenital heart defects. In 1985, leslie successfully had the Fontan procedure at 12. When Leslie was 31 years old, she had the Fontan procedure, cox-mase 3 procedure and pacemaker implantation. In 2019, leslie willingly accepted a hepatitis C heart donor organ from a 29-year-old female intravenous drug user. Even though Leslie grew up with congenital heart disease, it didn't stop her from becoming an elementary school teacher or receiving a master's degree in education. She has traveled extensively throughout the United States, canada, mexico, caribbean, central America, europe and Africa. She's bilingual in English and in Spanish and she loves traveling, hiking, reading, photography and exercising. Leslie has been an advocate for CHD since 2006, advocating with the Adult Congenital Heart Disease Association and Conquering CHD.

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A Heartbeat Away from Destiny, by Michael Montgomery, lying in the operating room with IVs in my hand and an oxygen mask over my face. I could hear the nurses running around in preparation and the monitors beeping. My heartbeat was racing and I was starting to sweat. The lights were extremely bright and I was shaking uncontrollably. Maybe it was that it was strikingly cold in the operating room, or possibly me being so anxious. I was more nervous than I had ever been in my life up to that date, and quite possibly even since I was only a junior in college, but my heart was failing me. I worked so hard to achieve my dreams, only to fall short and land myself in hospital and, a few hours later, to a disease I apparently had my whole life and didn't know. 24 hours earlier, on my first practice with Texas A&M, I felt my knees out of breath, with heart pain and passed out. They rushed me to the hospital where tests were done and concluded that I had a heart defect known as Wolf-Parkinson-White WPW disease. I needed emergency surgery and ablation. Everything I had worked for my whole life was contingent on how this operation succeeded. So many thoughts were racing through my mind while I took those deep breaths before surrendering to the anesthesia, I wondered are the doctors skilled enough to fix this? Would this condition create long-term problems? Would I have another heart attack and, most importantly to me, would I ever be able to play football again? I rebuked the fear and doubt and assured myself God hadn't brought me this far to fail me. I said a quiet prayer and fell asleep.

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Michael Montgomery II is single and was born on August 18, 1983, to Pastor Michael Montgomery Sr and Rosie Walker. In high school, michael earned All-State in football and basketball. He earned a full athletic scholarship to play football at Texas A&M. The Green Bay Packers drafted Michael number 96, and he played for five years in the NFL and a year with UFL and CFL. They inducted him into the 2022 Navarro College Hall of Fame. When not with his dog Optimus, you might see him on the big screen in films such as the Reason or Billy Lynn's Long Halftime Walk. He also made guest appearances on network TV shows. As a near-death survivor, michael works with charities and has founded the Heart of Michael non-profit organization to promote awareness and to support aspiring youth athletes by facilitating access to heart screenings for communities across the country.

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Conclusion If you found Volume 2 Endurance to be a captivating experience, get ready to immerse yourself in the rich narratives of Volume 1 Survival, and Volume 3 Transformation, completing our compelling trilogy. In Volume 1, you'll witness the remarkable stories of our heart warriors as they navigate the challenging path of survival. Their congenital heart defects become an intrinsic part of their being, shaping their lives and illuminating their true desires. In Volume 3, Transformation, you'll have the privilege of encountering the creative expressions of our heart warriors. From the mesmerizing strokes of a painting to the intricate beauty of pointillism and the heartfelt verses of poems. Their talents are showcased with profound sincerity. Moreover, the authors among them generously share captivating excerpts from their own books, granting us a glimpse into their personal journeys. And that's not all.

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The final part of this book is a treasure trove of invaluable advice from veteran harp warriors. Drawing from their own experiences, they offer guidance, support and wisdom that they wish they had received earlier in their lives. It's a heartfelt testament to the resilience and strength that emerges from the challenges they have faced. Together, these three volumes present a comprehensive tapestry of the lives, endurance and transformation of our heart warriors. Whether you seek inspiration, artistic expression or the guidance of those who have walked this path before. This trilogy promises to leave an indelible mark on your heart. So embark on this transformative journey, from survival to endurance to transformation, and discover the extraordinary stories that await within these pages.

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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 Jaw Jaworski, can be heard at any time, wherever you get your podcasts. A new episode is released every Tuesday from noon Eastern time.

Interview with Heart Mom, Kelsi Rogers
Kelsi shares Jett's extreme surgeries
(Cont.) Kelsi shares Jett's extreme surgeries
Beginning of Audiobook Reading
New Diet, New Life by Travis Martin
Clear by Lauren Elizabeth
Dear Heart by Leslie Castro-Duitman
A Heartbeat Away from Destiny by Michael Montgomery
Conclusion of Volume 2: Endurance

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