Heart to Heart with Anna

Learning about Anesthesia During Ablations & Volume Two!

March 05, 2024 Frank Jaworski, CRNA Season 19 Episode 439
Learning about Anesthesia During Ablations & Volume Two!
Heart to Heart with Anna
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Heart to Heart with Anna
Learning about Anesthesia During Ablations & Volume Two!
Mar 05, 2024 Season 19 Episode 439
Frank Jaworski, CRNA

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In this episode of Heart to Heart with Anna we welcome Frank Jaworski back to the program. Frank shares information about anesthesia when patients go to the electrophysiology lab (EP lab), especially when they need to undergo an ablation.

Frank is a certified, registered nurse anesthetist (CRNA) and he has been delivering anesthesia for over 23 years. One of his favorite departments to work with is the EP lab. In this episode, Frank shares some tips to help those in the congenital heart defect community reduce their concerns when visiting the EP lab, he offers some helpful questions patients can ask their anesthesia providers, and even shares some tips for how to reduce anxiety during their EP visits.

The 2nd and 3rd Segments involve Anna reading from The Heart of a Heart Warrior Volume Two: Endurance.  This is one of the newest books from Baby Hearts Press. This is the second in a 3-book series of essays and works of art by adults with congenital heart defects.

In this podcast episode, Anna will read from the front matter of the book, including the Foreword, Preface, and Introduction.

Baby Hearts Press is hosting a Book Study for those interested in meeting some of the contributors to ask questions, as well as an opportunity to share their own experiences related to the topics discussed in the book. The Book Study for Volume Two begins on Thursday, March 24th from 5-6 PM Central Daylight Savings Time and runs for 4 consecutive Thursdays. To get a ticket to attend for only $10 per session, visit https://www.babyheartspress.com.

& so much more
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In this episode of Heart to Heart with Anna we welcome Frank Jaworski back to the program. Frank shares information about anesthesia when patients go to the electrophysiology lab (EP lab), especially when they need to undergo an ablation.

Frank is a certified, registered nurse anesthetist (CRNA) and he has been delivering anesthesia for over 23 years. One of his favorite departments to work with is the EP lab. In this episode, Frank shares some tips to help those in the congenital heart defect community reduce their concerns when visiting the EP lab, he offers some helpful questions patients can ask their anesthesia providers, and even shares some tips for how to reduce anxiety during their EP visits.

The 2nd and 3rd Segments involve Anna reading from The Heart of a Heart Warrior Volume Two: Endurance.  This is one of the newest books from Baby Hearts Press. This is the second in a 3-book series of essays and works of art by adults with congenital heart defects.

In this podcast episode, Anna will read from the front matter of the book, including the Foreword, Preface, and Introduction.

Baby Hearts Press is hosting a Book Study for those interested in meeting some of the contributors to ask questions, as well as an opportunity to share their own experiences related to the topics discussed in the book. The Book Study for Volume Two begins on Thursday, March 24th from 5-6 PM Central Daylight Savings Time and runs for 4 consecutive Thursdays. To get a ticket to attend for only $10 per session, visit https://www.babyheartspress.com.

& 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:

The methods of anesthesia that I've described here. This may not be what you receive for a similar procedure at your own facility. That's okay. One of the things that we have learned in our training is that there's 100 different ways to do an anesthetic for any given case ["The Heart With Anna"].

Speaker 2:

Welcome to Heart with Anna. I am Anna Jorski and your host, muscle heart, mom to an adult who was born with a single vitriculture and who is 29 years old. That's the reason I am the host of your program. With me today is Frank Jorski. Frank Jorski is my husband and dad to our daughter Hope, who was born with a single ventricle heart, and to our heart-tubby son Joey. Frank is the Certified Registered Nurse and Aesthetist, or CRNA for short. Today, frank and I will talk about special considerations for members of the CHD community when it comes to visiting the Electrophysiology Lab, or EP Lab. This can be a very scary place for heart warriors to visit. People visit the EP Lab when their heart's electrical system is not behaving.

Speaker 2:

The heart may be having extra beads, maybe beating too, fast or too slow or have intervals between beads that aren't quite right. Patients often feel their hearts beating out of their chest or they faint or have other symptoms. Some patients don't even realize their hearts are misbehaving until they have an electrocardiogram, also known as an ECG or EKG. Frank is gonna answer some questions about arrhythmias from the perspective of a nurse, anesthetist the medical professional who helps with pain management and anesthesia. After our interview, I will read the front matter of the heart of a heart warrior, volume two, endurance.

Speaker 2:

You can sign up to take part in a book study of volume two on our website, babyheartspresscom. We will be discussing the book on Thursdays from five to 6 pm, usa Central Time. We'll discuss the book for the first three weeks and the fourth week will be a jeopardy game where people can win prizes. All questions will be based on volume two and what we discussed in the book study sessions. It's only $10 per session and people are welcome to join any session, but I'm limiting participation to 12 people so we all have time to share in the discussion. Welcome back to Heart to Heart with Anna Frank.

Speaker 1:

Well, thank you, anna, I'm glad to be back here with you again.

Speaker 2:

Well, you know, I always love having you on the program and I love it when you can teach us something new.

Speaker 1:

Well, I am an easy get for you, because how can I refuse?

Speaker 2:

Well, Frank, when I talk to members of the CHD community who need to visit the EP Lab, they're usually really nervous and they're afraid. Can you start by telling me the best thing a patient can do to prepare for a visit to the EP Lab?

Speaker 1:

At some point you will have a pre-procedure visit, a pre-op visit, with your anesthesia provider or with member of their staff, and they will ask you a bunch of questions to find out more about your medical history, your allergies, any problems you may have that would affect your anesthesia. They'll also give you preoperative instructions. It's very important to listen carefully to their instructions, listen to what they say, clarify any questions you have, specifically ask them questions about when you should stop eating before the procedure, and also specifically that you should ask them about your medications. Many of the medications that you take on a regular basis they'll want you to stop at a certain point before your procedure. Some of the medications you take on a regular basis they'll want you to take the morning of the procedure. So clarify exactly which medicines to take, which one's not to take. That's very important.

Speaker 2:

That's so important because so many of our heart warriors are on multiple medications.

Speaker 1:

Yes, and the medications can affect both the performance of your heart terms of the electrophysiology, in terms of the current. They can also affect things like bleeding or propensity to bleed if you're on a blood thinner of some kind.

Speaker 2:

Right, okay, so that's all really good advice. So make sure when you're in that pre-op visit you have a list of all of your medications and you double check with whoever the screener is. Make sure to ask them specifically for each and every drug that they take.

Speaker 1:

Yes.

Speaker 2:

Okay, well, that is good to know. So why is anesthesia necessary for ablation of ventricular dysrhythmia such as ventricular tachycardia or V-tech, and premature ventricular contractions or PVCs?

Speaker 1:

When a person goes to the cath lab for correction of blockages of their vessels, frequently they give a very light sedation and they use a local anesthetic and put the catheters into the groin and it causes some pain and discomfort but it is bearable with only a light sedation. One of the reasons why a stronger anesthetic, a deeper sedation, is necessary for ablation is that they are actually going to place a wire inside of your heart and they are going to burn tissue. They are going to place that wire up against a part of the heart wall through which the electricity is conducted and they are going to pass radio frequency energy. It is called radio frequency ablation or RFA, and it hurts. It literally hurts. It feels like somebody is stabbing you in the heart with a very tiny needle.

Speaker 2:

Sounds painful.

Speaker 1:

Yes, and people do have an ache. Afterwards they say, oh, my heart hurts. Well, that is not surprising. They have actually burned a little bit of the tissue inside of there. So the two reasons why a deeper sedation is necessary is one because it hurts, and the other reason is because we need you to hold very still.

Speaker 2:

So if a person is Right because you don't want to burn the wrong spot.

Speaker 1:

Absolutely correct. We go to great lengths to make sure the heart is as still and as motionless as possible. Obviously we can't stop the heart for these, but sometimes we'll actually encourage the heart to beat slower. So there's more time between beats to place the wire correctly. And if we're controlling the patient's ventilation because for some procedures we do actually take control of the ventilation we will decrease the volume of their ventilation so that the diaphragm moves less and the heart moves less.

Speaker 2:

I did not know that. So does that mean that people who have these ablations will be intubated?

Speaker 1:

Sometimes, but not specifically for the ventricular dysrhythmias, and the reason for that is that going for a deeper anesthetic, a general anesthetic, can be contraindicated if you're doing a ventricular ablation, and the reason for that is because it will actually suppress the dysrhythmias. And I've done cases before more than once in which we'll have a patient under a fairly heavy sedation not a general anesthetic but a deep sedation using a propofol and the cardiologist will ask me to actually lighten up the sedation, to back off on it, because the medication is masking the dysrhythmias. If the person is not actively in the dysrhythmia when you're trying to ablate it, you literally can't find it. You have to see the dysrhythmia with the sensors you place inside the heart. So if they don't produce the dysrhythmia, you can't treat the dysrhythmia. So we'll back off on the sedation so that the dysrhythmia will show itself.

Speaker 2:

Do you also give them medication so they don't remember it? Because this to me sounds like it would be a scary thing to remember.

Speaker 1:

We can. There are medications that fall into the category of benzodiazepines. The most commonly known one of those is Valium. We can give IV Valium. More commonly, we use a medication called Medazolam, which is also called Versed, and Medazolam is a great medication because it does two things very well it decreases anxiety and it tends to suppress memory of the events that happen while you have that medication in your body. I personally have had Versed before a procedure not an EP procedure, but another kind of surgery and I don't remember anything from the time that they gave the medication till after I woke up, even though I was awake for some time before I actually fell asleep for the anesthetic. So that's a good thing. Also, the medication that we give, the Propofol, commonly used for sedation, all by itself, frequently with a deep enough sedation will produce amnesia too.

Speaker 2:

Okay. And that's okay, so what kind of anesthesia is used when you have ablations?

Speaker 1:

It depends what kind of ablation you're having. You were talking specifically about ventricular dysrhythmias. For ventricular dysrhythmias you don't want to use too strong of an anesthetic because it will suppress the rhythm. But there are some kinds of procedures, specifically atrial fibrillation treatment. Atrial fibrillation is a common dysrhythmia after heart surgery, for congenital heart defects and for adults with acquired heart disease. Atrial fibrillation we can use a general anesthetic and we also almost always intubate the patients. We'll do a general anesthetic with an endotracheal tube for a couple of reasons it's easier to manage the airway if you're going for a deep anesthetic and it's safer to manage the airway also because you guard the airway from aspiration and because sometimes we'll do transasophageal cardiogram, a TEE, during these procedures. So you guard the airway with a tube in the trachea and they can pass the TEE probe down the esophagus.

Speaker 2:

Okay, I know a lot of patients who have had those TEEs. Hopefully their anesthesia provider also explained this to them. But I'm hoping that this will help people who have yet to have an ablation or who are a little bit nervous about having an ablation, Because I think for a lot of people the anesthesia is one of the scariest parts.

Speaker 1:

Yes, I agree, and I'd like to clarify. You were saying anesthesia for TEEs. I was talking specifically about a TE done during an ablation, like for atrial fibrillation. But if a person has a TE just for a sake of a TE. It's very commonly done under sedation. They won't have a general anesthetic with endracheal too.

Speaker 2:

Okay.

Speaker 1:

And we'll generally use propofol for that. Although there are medications we can use, like verset, like fentanyl, like ketamine, which we can use. Sometimes, again, it varies from person to person in terms of the patient's needs, in terms of the standard of practice the institution you work at, in terms of the pattern of practice the individual anesthesia provider, be it an anesthesiologist or nurse anesthetist, commonly uses.

Speaker 2:

Okay. Well, it's nice to know that the medical team is going to look at each person individually and they will determine what concoction of medications is going to work best for each person, Because I don't think with anesthesia or with anything, there's a one size fits all solution.

Speaker 1:

That's absolutely true. The methods of anesthesia that I've described here. This may not be what you receive for a similar procedure at your own facility. That's okay. One of the things that we have learned in our training is that there's 100 different ways to do an anesthetic. For any given case. You can use different techniques, different equipment, different modalities, and that's okay as long as you effectively keep the patient calm, under control. Hopefully, you have no memory of the event itself.

Speaker 2:

My last question for you, Frank, is what question should a patient ask their anesthesia provider?

Speaker 1:

When it comes to the preoperative phase, it's important to know what they expect of you. When it comes to the day of the procedure, feel free to ask any questions you want. Ask them specifically what's going to happen when they get into the room for the procedure itself. It helps a lot for anybody's anxiety to be prepared for those kinds of things. So ask them what they plan to do. Ask them to explain things. Sometimes you don't want to know all the precise details Some people don't want to but if you do want to, feel free to ask. We'd be happy to tell you what we're going to do. All the anesthesia providers that I work with working in the electrophysiology lab have lots of experience and they will be happy to tell you what they're going to do and why. So ask them any questions you have. Explain to them any concerns you have specifically.

Speaker 2:

What kind of questions do people generally ask you? Are most people nervous? Are they afraid when they're in the EP lab with you?

Speaker 1:

Most people are nervous for any kind of procedure, for any kind of anesthesia. People can be more afraid of the anesthesia than they can of the procedure itself. That's not uncommon. Most people also will try to hide their nervousness in various ways. They'll talk very loudly, They'll make a lot of jokes or they'll go the opposite direction. They'll be extremely quiet and guarded.

Speaker 2:

So if you could give them the top three questions that every person should ask their anesthesia provider, what would those three questions be?

Speaker 1:

Again, do you mean on the day of the procedure?

Speaker 2:

When they're sitting in front of their anesthesiologist or their nurse anesthetist and they're about to go under. What questions should they ask?

Speaker 1:

Well, what would I do if I were the patient? I would ask them please tell me when you're going to start, don't surprise me. I would ask them is there anything specific you need me to do? Do you need me to be in a certain position? Do you need me to breathe in a certain manner? Do you need me to open or close my eyes? Whatever it is?

Speaker 2:

Do they ask if it's going to hurt and if you can help them with that.

Speaker 1:

They absolutely do ask if it's going to hurt Because that's what I would want to know.

Speaker 2:

Is this going to hurt? Am I going to feel it? Am I going to remember it?

Speaker 1:

One of the medications we use primarily is called Propofol and it's an excellent drug. It tends to help you go to sleep very fast and wake up very fast afterwards. However, it does cause some chemical irritation of the vein when it goes in. Now we can give a local anesthetic Right before we give that or with that medication to help blunt that pain. Sometimes it works, sometimes it doesn't. I've had the medication myself before surgery. Yes, it did hurt going in. No, it doesn't cause any damage to the vessel and I have had it on more than one occasion and I didn't have any problems going back, knowing that it might hurt again the next time. I can't tell you right now what it felt like because I have no recollection, but I know that it hurt when they gave it to me.

Speaker 2:

Is Emla Cream something that can be used?

Speaker 1:

Emla Cream is really a topical anesthetic. Emla Cream is used to help manage the pain for starting an IV, for actually making a placement of an IV catheter. Now what I'm talking about is you actually get pain inside the vessel. When the medication flows inside, it irritates the inside of the blood vessel and causes a burning pain or an aching pain. There are medications you can give. You can give one of the components of Emla Cream. You can give lidocaine IV through the IV before you give the Propofol, and that will help to suppress the pain. But frequently we tell people is take a deep breath and breathe through it and it'll pass. It's not the worst pain you'll ever feel. It doesn't last very long. It doesn't cause any damage.

Speaker 2:

So if you're a big chicken like me and I said I know it's going to hurt Can you give me some lidocaine? Do you have that on your cart? Would you be able to give me some?

Speaker 1:

I would give you lidocaine and, depending on your degree of anxiety, I might give you some verset also, because at least in that case you'd be less likely to remember it later on.

Speaker 2:

That's good to know.

Speaker 1:

Absolutely, Absolutely, and also the verset. If I gave it to you, the medazolim, it would decrease your anxiety that you have in anticipation of it possibly hurting. There are things we can do to help prevent it from hurting. Minimize the hurt, minimize the recollection of the hurt.

Speaker 2:

So one of the scariest things seems to be your endosarithmia. You don't know what's causing it. You don't know if the ablation is going to be successful. You don't know how much is going to hurt Some of the patients that I've talked to. They're afraid that they may be admitted to the hospital, especially if they can't get the ablation under control. So there's a lot of conditions that can be anxiety producing and it's nice to know that you can talk to the CRNA or the anesthetist and say I'm really nervous about this because there's so much uncertainty. Is there something you can give me to help me with that? Because I imagine if the patient is more relaxed the procedure would go more smoothly.

Speaker 1:

Not necessarily the procedure itself, but at least the induction of anesthesia. Once the patient is anesthetized, their state of mind, it does not affect the progress of the procedure but it can raise their blood pressure.

Speaker 1:

It can raise their heart rate if they're agitated or concerned. That's completely understandable. One of the worst things about any kind of anesthesia is the feeling of loss of control. If you lose control of your situation, that's scary. So if you can reassure them, or even if you can't reassure them, if you can distract them. I commonly talk to people about mundane things as we're putting monitors on getting settled in before we actually induce the anesthesia. Because I want them to think about things that are calm and normal, I'll ask them where they would be that day if they weren't in the hospital, if they'd be at work, if they'd be at home with their family. Ask them where they came from, how far they had to drive to come in, because I find that it puts them into more of a controlled frame of mind. They feel like they're normal selves in a very unfamiliar environment.

Speaker 2:

Yeah, it's important to feel like you have some control. It's important to feel like this is temporary Within. After this, I'm going to lunch at Cracker Barrel. Wherever you're going to lunch, it gives you something to look forward to.

Speaker 1:

That's one of the things I talk about. Is I talk about where you're going to go for lunch afterwards?

Speaker 2:

Yeah, You've got to have that little carrot to help you get through it. Yes, this is bad, but it's only temporary and then I'm going to do something hopefully enjoyable. So well, thank you for explaining about anesthesia during a really difficult and scary time for our community. I think that the information you gave will be helpful to them. Frank.

Speaker 1:

Glad to help in any way that I can and for anybody that I take care of as a patient. Ask your questions. There's no mysteries. There's no secrets. We'll be happy to tell you everything we're going to do Terrific.

Speaker 2:

That does conclude the interview portion of the podcast. We'll take a short break but when we come back you'll have a chance to hear me read from our new book, the Heart of a Heart Warrior, volume 2, endurance. Today you'll hear me read the front matter of the book, including a forward by Heart Mom and former Heart to Heart with Anagest Dana Henning. 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 Heart should unite the globe, but of the hosts and guests, and are intended to spark discussion about issues pertaining to congenital heart disease or bereavement. Just like in February, I'm going to be reading from our new book, the Heart of a Heart Warrior, in March we will be reading from Volume 2, endurance. I'm very excited about this. I'm going to skip over the warning disclaimer and the table of contents and the dedication, because all of that is the same as in the first book and I'm just going to start with the forward. The forward to book 2 is different than the forward to book 1. So here we go Forward. My name is Dana Henning and I have been married to my best friend, brian, for 23 years. My passion is supporting families of children with congenital heart defects CHDs. I am the coordinator of Mended Little Hearts of Austin and I serve on the Parent-Faculty Advisory Council at Dell Children's Medical Center.

Speaker 2:

Our heart journey began when my son, evan, was born in August 2011. We knew he had two CHDs previously found when I was pregnant. They diagnosed him with hypoplasic left heart syndrome, hlhs, and a common atrium. Once he was born and they completed his first catheterization, we learned he had four other heart defects. So the three stage surgeries they had told us he would need transformed into his only hope was a heart transplant. We were terrified but hopeful. Until we learned about Evan's heart defects, we had only heard about children being born with holes in their hearts. We had no idea children could be born with extremely severe heart defects. Nobody and either of our families had heart complications. As babies, we felt very alone. Even with all the family support we received, nobody really knew what to say, except that they would keep all of us in their prayers. Honestly, I lived each day to the fullest, not knowing how my child's life was going to play out. Evan had his first open heart surgery at just ten days old, where they performed a hybrid Norwood procedure and placed a large stent in his ductus arteriosus. Evan's doctors listed him for a heart transplant at two and a half weeks old and he received his donor's heart at six and a half months old. The doctors discharged Evan from the hospital after seven and a half months, but only as far as Aron and McDonald House. Evan had to stay within a two hour radius from the hospital until he was three months out from transplant. We longed to go home, as we had seen so many families come and go throughout the time we were there. Eventually, after nine months spent in Dallas, we felt relieved to take our son home to Cedar Creek.

Speaker 2:

I learned about Mended Little Hearts while Evan was impatient. They started the Dallas chapter in October 2011 and they held their meetings at the hospital. I attended as many meetings as possible and I finally found a core of heart moms that I could relate to. However, once I returned home, I felt very alone all over again. All my heart mom friends lived in various cities all over Texas and Oklahoma. I eventually heard about the Children's Heart Foundation and met a bunch of local heart families. I met Anna Jaworski and her husband Frank when I co-chaired the 2016 Central Texas congenital heart walk. I also met David Franco, whose story is in this book, as he was always available to help with whatever was needed.

Speaker 2:

Eventually, some of our heart families started Mended Little Hearts of Austin and I became involved in our local chapter. I've been the coordinator of our Austin chapter for several years, as I never want anyone to feel alone. Each of our heart warriors has their own journey, but the loneliness and the need for support and community live in each of us. I wish I would have come across a book like this when my son's heart journey started. Talking about the journeys of so many others brings hope to my heart. I've also had the privilege of being on several Heart to Heart with Anna podcast episodes. I truly appreciate all that Anna brings to the heart community and I appreciate her passion for our heart families.

Speaker 2:

This book covers multiple generations of heart warriors, their struggles and how they fight to live their best lives with CHDs. That's written by Dana Henning, austin Mended Little Hearts coordinator. Parent faculty advisory council member. Adult Children's Medical Center Profess. Welcome to the book we wish somebody would have given us many years ago. Our dream with this book is to provide a resource to let others in the congenital heart effect CHD community know they are not alone. Who are we? The editors are a parent of an adult with a CHD, anna, and a heart warrior, megan. We came to know each other thanks to Facebook. We have known each other since January 2015, but it feels as though we have always been part of each other's lives, although 8261 miles separate us, with me being in Temple, texas, and Megan being in Brisbane, australia.

Speaker 2:

Living with CHDs in the 21st century is better than it was when most of the contributors to this book were born. When they were born, there was no internet. More babies were born every year than there were adults alive with CHDs, and medicine was more of a trust me on the doctor type of practice rather than one based on family-centered care. My heart warrior was still a child and I didn't even know Megan when the idea for this book was conceived. While a handful of adults with CHDs wrote for my two other anthologies, the heart of a mother and the heart of a father, the idea of having a book entirely written by heart warriors was still a dream, especially since my wish was for my own child to be a contributor. It has taken us years to gather essays, work with the contributors and we find our vision for the book, but it has finally happened.

Speaker 2:

As scary as it is to be the parent of a child with a CHD or an adult with a CHD, these are miraculous times we live in. The diagnostic tests available, drugs and supportive devices such as implantable cardiac defibrillators, icds, left ventricular assist devices, lvads and even implantable loop recorders make the management of CHDs something that is less scary and more successful. They have refined the surgical procedures to help those born with CHDs over years, which now sometimes include the use of robotics, 3d printing and even stem cells to help our heart warriors live their best lives. These types of technologies are game changers. It truly is an exciting time for us to be alive, to witness history in the making. That is what makes this book so valuable and so unique.

Speaker 2:

Many of the people who have written for this book were some of the early pioneers. These children had parents who refused to give up on them and who decided that a potential future was better than no future at all. This gave permission to surgeons, cardiologists and other medical professionals to do what had to be done in order to save their children's lives. They put their trust in the medical system and to feel the pediatric cardiology blossomed Today. There are often multiple procedures available to help medical teams treat their patients and there are enough results from previous cases to give them an idea of the potential outcome. Sadly, there was a downside to being a pioneer Bullying, confusion, misinformation and uncertainty were part of everyday life for many of our heartwarriors and their families.

Speaker 2:

Many heartwarriors were told they were fixed after their first surgery and for some they would lead happy, healthy lives until an unexpected event would land them in the emergency room. Depression, anxiety and post-traumatic stress are all conditions that many heartwarriors and their family members experience because of the circumstances involved with such uncertain futures. Muriat hospitalizations and procedures, and even conflicting solutions from professionals, depending on when and where care was administered, contributed to challenges with mental health. This book is needed because of the shared experiences so many heartwarriors understand. People need to know they are not crazy, they are not misinformed and they are not alone. This book is for all the people in the CHD community who believe that their lives were the lives of their children, siblings, grandchildren or friends matter.

Speaker 2:

They had lives worth saving, despite the trials and tribulations. There is a book for anyone who has dealt with a broken heart, but who chose to look at the whole person instead of just a damaged organ. This book is for the believers, the dreamers and the fighters. This book is for all heartwarriors and their families. Thank you for the sacrifices you have made. May the stories in this book make your hearts a little lighter and may you realize if you didn't know this already you belong to a very special substance of the world. Anna Marie Jorski.

Speaker 3:

Heart to Heart with Anna is a presentation of Hearts Unite the Globe and is part of the Hugg Podcast Network. Hearts Unite the Globe is a non-profit 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 2:

Acknowledgements. This publication took over four years to go from concept to actual book. First, we need to acknowledge and thank every person who contributed to this book. We wrote, edited and revised essays repeatedly. We have grown closer to these amazing people and their stories inspire us. Since you can easily see the names of each of the contributors in the Table of Contents and throughout the book, we won't list each of them here too. However, I would like to acknowledge a few family members who helped us with contributions, especially after a heart warrior passed away. Special thanks to Chris Atherton, roseanne Franco, roseanne Bishop, mary Kay Klein, arlen Kerr and Dawn Martin. We really appreciate you helping us to make sure the contributions were the legacy your loved ones deserved.

Speaker 2:

Dana Henning and I have been friends for years. When I thought about who would be the perfect person to write a forward about endurance, I could think of no one more qualified than Dana to write the forward. Her son has been through so much, but Dana has always been by his side and also present for parents who needed to know they weren't alone. I extend my heartfelt gratitude to Dana for dedicating her time to craft a personal forward that enhances the intrinsic worth of this book for every reader who encounters it. I would like to thank members of Facebook who responded to polls. We would like to thank our beta readers, especially Joe Flowers, lowry Smith, beth Greenaway, julie Valaderes, helen Simpson, kimmy Salvage, sasha Elizabeth O'Donald and her daughter Odette, daphne Davis-Patrick, dina Barber, sherry Turner and Cora and Valerie Garan. Feedback from the congenital heart-to-fake community is so important. Thank you especially to Jane Hunt, debbie Gilmore, rita Skoggins, amy M Lee and Jenny Muscatel. All of you are always there with helpful advice and an encouraging word. There are always people behind the scenes who are instrumental. Brenda Vignoroli was our webmaster extraordinaire. She did so much to help me in the early stages and until Lauren Elizabeth took the reins from her. Lauren did a wonderful job of revamping a website just in time for the launch of Baby Hearts Press as a hybrid publisher. Janet Scherer and her daughter Stephanie have also provided encouragement and support. Thanks to Monica Mossy, the spreadsheet queen. We had a list of people who wanted to be part of the book and their contact information. Many of you know this book as the second in the heart of a series. Thanks to suggestions from Jenny Muscatel and Amy M Lee, I decided I needed to get an artist to make new book covers for all three books to show they are in a series. Thank you to Lauren Elizabeth for coming up with the clean, uncluttered design we needed for this book series.

Speaker 2:

Our goal with this book was to have one place where adult heart-warriors could share important aspects of their lives with the world, to stand as a testament to the resilience of the human body and mind. The pages that follow are not the stories in their rawest form. Instead, megan tones an hour to each author to help them craft their stories. Amy M Lee even added a helping hand in the developmental editing phase and gave several contributors her helpful insight. I know that other family members, friends and writing buddies also helped in this process. I'm sorry not to have the names of all those people to give credit where credit is due, but if you're reading this and you are one of those helpers, thank you.

Speaker 2:

Megan tones met with me regularly to edit work on formatting the book, help with communicating with our contributors and so much more. Having a co-editor who actually was a heart-warrior was something I felt was necessary in order to give this book the tone it needed. I knew Megan understood each and every essay with every fiber of her being. As a heart mom. I could appreciate the stories, but Megan lived many of those stories, thoughts and experiences. Also helping with the editing, formatting and design work with the book was heart-warrior and contributor Lauren Elizabeth. Thank you for helping us finally get the advanced reader copies of the book ready for distribution and getting the book ready for publication.

Speaker 2:

Our husbands were instrumental because they sacrificed many hours that we could have spent with them in order to let us work on this book. Franchi Worski and Matthew Tones have never wavered in their support and love for us during this book project. Franchi also always fed me and kept me hydrated. Thank you to both our significant others for keeping us sane during the tenure of this project. Although it may seem unconventional, I think we also need to give a thank you to our furry children, who were literally by our sides during so much of the process.

Speaker 2:

My miniature schnauzer, missy, often insisted on sitting in my lap or on my feet when I first started this book After she passed away, buck and Chloe were almost always on the pillow by my desk or my feet or somewhere in my office while I worked. It was because of them I would get up to take breaks and I never felt lonely while working on the book, meaghan writes. Belle often slept on the top of the lounge chair behind me, snoring loudly for a toy fox terrier, while her younger sister, pandora, curled up in the sun. Together. They were my office ladies, although they were often joined by their brothers, kratos and Brutus. Sadly, brutus and Belle are no longer with me. However, they're passing enabled us to welcome Coco and Bella. Alas. Kratos now has three younger sisters and often looks a bit frazzled as he curls up on my lap. That's written by Meaghan Tones. Finally, I believe there were many angels on our shoulders while we worked on this book, and I would like to acknowledge that. Sadly, we have lost too many friends in the CHD community far sooner than we would have liked. I need to acknowledge my mother, who also passed away in 2018. In her last days, she dealt with AFib and I learned even more about treatments that many of our hard warriors must endure, but it's thanks to my mother's Texas sized heart that I learned how to love others from a young age. If I had to sum up this book in a word, that's the word I'd choose Love. The introduction is written by Meaghan Tones.

Speaker 2:

In the year 2000, I was 17 and on the cusp of adulthood, as my classmates bought cars, when on dates and planned their gap years or daydreamed about sharing houses and university. I just looked forward to the next day when I could lie on the lounge and watch music videos. Even though I dropped every class I could without affecting my capacity to graduate, I still knotted off in class and had trouble focusing. I just managed to pass, even though I had top marks in primary school and junior high. Aware that I had a heart condition, the teachers gave me a pass. My English teacher even told me I could go to sleep while the rest of the class watched Macbeth. Unbeknownst to me and everyone else, I was living with untreated heart failure. I didn't know anybody else with a congenital heart defect, chd and my only involvement in the CHD world was when I went to my pediatric cardiologist every two years, who always told my parents and me I was fine.

Speaker 2:

At my graduation, the high school gave out several awards. The class of 2000 sat in a gymnasium with their families as they announced various achievements top marks for core subjects like English, maths and Sciences, and several sports and community awards. Then came Achiever of the Year. My name was called. I walked up to the bright stage with the Dexes and Athletes, where a local member of Parliament smiled and handed me a certificate with both hands. She whispered I understand it takes over an hour for you to get to school. Perplexed, I nodded as the speeches went on.

Speaker 2:

I wondered why I had received the award. It had been a rough year for my family, with several personal problems which affected my studies to where I received special consideration. My family had moved two years ago and I wanted to stay at my old school, even if it meant commuting across town by train. Still, I knew of several other students facing personal difficulties and a long commute. Why was I singled out? I felt self-conscious standing up there holding an award that I received simply for staying in school.

Speaker 2:

My cardiology team finally discovered my heart failure in my mid-20s and I found out that not only was I not cured, but that I needed another surgery. This crisis prompted me to Google CHD and I found what I had sorely been missing in life Education about CHD and a supportive community. Words can't express how validating and empowering it was to discover that world. I met many wonderful people from across the globe who had had similar experiences to me. All of them helped me so much just by listening and sharing. I have stayed in contact with the community since then and I feel like it would take an entire lifetime to pay it forward, but I do what I can.

Speaker 2:

When Anna approached me about this book in 2018, I had already known her for a few years. In 2015, I was a guest on her podcast and before long I started working as a scriptwriter for Heart to Heart. With Anna, we would get together with our dogs on Skype or a Facebook call and brainstorm together to write captivating bios and questions for her many guests. Over the years I knew she had edited two books written by heart mothers and heart fathers, so I was very excited. When she raised the idea of editing a book written by adults with CHD, I saw a wonderful opportunity to create a resource I thought back to when I was an exhausted teenager, wondering how on earth I would be an adult and what a difference a book like this might have made.

Speaker 2:

As a person with CHD myself, words like hope and inspiration make me cringe a little as I think back to the award I received at my graduation and how it made me feel. It was like people telling me I was brave and strong for going through this or that procedure when I didn't feel like I was doing anything other than what I had to do. However, I truly believe that this book conveys a sense of hope and inspiration to people living with CHD and their families, not because the authors have CHD and get up and live their lives like everyone else, but because of the creativity and tenacity they display to be heard, prove others wrong and do the best they can, even if sometimes they had to go about life a slightly different way than they planned. I hope you will read these diverse essays and find yourself and your loved ones represented, and maybe even imagine a future you didn't think would be possible. Anna and I organized the book into ten different chapters, each representing a different theme. You may start from the beginning or read whichever chapters you like the sound of. There's also an index in the back to help you find topics of interest to you. When I write, the text will be in italics to differentiate my writing from Anna's. You'll notice that my spelling may be a bit different from Anna's, since she's from Texas and I'm from a little place called Brisbane, australia. We felt it was important that we and all the contributors shared their words and spelling as they would in their homeland, meek and tones.

Speaker 2:

That concludes this episode of Heart to Heart with Anna. Thanks for listening today. I hope you found this program helpful. Please see our review of the podcast on Apple Podcasts Reviews. Help others searching for podcasts about CHD's find us, and I appreciate Frank coming on the program today and sharing his information and advice with us. I'm thankful for him and for all of you loyal listeners, especially the listeners who join our Patreon program or the giving programs on Spreaker or Buzzsprout For the cost of a cup of coffee. You can help me continue to provide free programming to the CHD community. That's all for today and remember, my friends, you are not alone.

Speaker 3:

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.

H2HwAnna March 5, 2024 Episode
(Cont.) H2HwAnna March 5, 2024 Episode
Foreword
Preface
Acknowledgements
Introduction
Conclusion

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