Episode 26

No Shame in Scars: Open Heart Surgery for a Double Chambered Right Ventricle -26

In episode 26 of The Heart Chamber Podcast, host Boots Knighton invites guest Jacque Avalon, a nurse, to share her inspiring story of thriving post open heart surgery. Jacque's journey began when she went to the emergency room with chest pain, which turned out to be a rare condition called double chambered right ventricle. It took some advocacy and prompting from Jacque's primary care physician for a full work to be completed. This led to the discovery of her Double Chambered Right Ventricle, and other structural challenges with her heart. Jacque underwent open heart surgery and was surprised by a few things along the way. She took these struggles in stride. You'll be thrilled to learn the impressive feat she accomplished a year after open heart surgery. It was something she dared not attempt pre-surgery, and was able to do once her heart was repaired. Its a testament to the fact that it's possible to aim even higher when congenital heart constraints have been resolved..

Jacque's story emphasizes the importance of perseverance and resilience after undergoing major heart surgery. There were intense moments on her path, when things were incredibly challenging, but there was also another side. Listen to the full episode of The Heart Chamber to hear her incredible journey.

If you are looking for something specific - here's where you'll find it:

[06:20] Stressors were taking a toll. And the chest pain wasn't going away.

[11:25] Results from the TEE (transesophageal echocardiogram): Rare adult condition: DCRV, VSD, PFO.

[15:44] Preparing for Open Heart Surgery- who will make your health decisions if you can't?

[22:43] Anesthesia slows blood circulation. Your options to prevent blood clots.

[26:44] Unbearable pain, unforgettable feeling.

[35:35] Value of attending Women Heart and the reflections it brought to the surface.

[36:17] Coming to terms with the changes - a physical scar in a day and at an age with such an emphasis on appearances.

[41:29] Advice to others facing open heart surgery.

Links mentioned in this episode

Women Heart - www.womenheart.org

Smidt Heart Institute at Cedars-Sinai in LA - www.cedars-sinai.org/programs/heart.html

A Little More About Today's Guest

Jacque Avalon is a 31-year-old registered nurse based in Los Angeles CA. She was born with a congenital heart disease that was left untreated until September 2020. She had open heart surgery at the age of 28 after finding out that she had a rare congenital heart defect among adults called DCRV (double-chambered right ventricle).

How to connect with Jacque

Instagram: @apple.jacqs

How to connect with Boots

The Heart Chamber - A podcast for heart patients (theheartchamberpodcast.com)

Email: Boots@theheartchamberpodcast.com

Instagram: @theheartchamberpodcast or @boots.knighton

LinkedIn: linkedin.com/in/boots-knighton

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Transcript

We feel it is important to make our podcast transcripts available for accessibility. We use quality artificial intelligence tools to make it possible for us to provide this resource to our audience. We do have human eyes reviewing this, but they will rarely be 100% accurate. We appreciate your patience with the occasional errors you will find in our transcriptions. If you find an error in our transcription, or if you would like to use a quote, or verify what was said, please feel free to reach out to us at connect@37by27.com.

Boots Knighton [:

Hello, and welcome to another episode of The Heart Chamber Podcast. I am your host, Boots Knighton.

Jacque Avalon [:

I think the stress over COVID really took a huge toll on me especially on my health. I was just sitting in the break room around, I would say, September. So, literally, what, 3 years ago. I was sitting in the break room just talking with some of my coworkers and I just felt this, you know, pressure on my heart, and I’m like, whoa, this is it. Like, this is the chest pain I’ve always talked about with my patients. Like, I’ve never felt this chest pain before in my whole life.

Boots Knighton [:

Welcome to The Heart Chamber. Hope, inspiration, and healing. Conversation on open heart surgery. I am your host, Boots Knighton. If you are a heart patient, a caregiver, a health care provider, a healer, or are just looking for open hearted living, this podcast is for you. To make sure you are in rhythm with The Heart Chamber, be sure to subscribe or follow wherever you are listening to this episode. While you're listening today, think of someone who may appreciate this information. The number one, way people learn about a podcast is through a friend. Don't you want to be the reason someone you know gained this heartfelt information? And if you haven't already, follow me on Instagram. 2 different places, at Boots.Knighton or at The Heart Chamber Podcast. You can also find me on LinkedIn as well as Facebook. But enough with the directions. Without further delay, let's get to this week's episode.

Boots Knighton [:

Hello, Jacque, and welcome to The Heart Chamber podcast. I am so thankful that you have agreed to come on and share your story of hope and healing after open heart surgery.

Jacque Avalon [:

Hi, Boots. Good morning. Thank you for inviting me to your podcast. I really appreciate it.

Boots Knighton [:

Yes. Well and I know it takes a lot of courage to come on to a podcast. You never know who's going to listen. And my podcast has been downloaded in 24 countries and every state, which is so amazing. And so, your story will be heard far and wide, and it's an important one for two reasons. For my listeners, Jacque is a nurse. And she was in her nursing career already in the pandemic and has some really intense stories to tell from that. And as the pandemic was unfolding, Jacque started to struggle with her heart. And so, it was this simultaneous issue for her, and it kind of mirrors my story in some ways. And so, Jacque and I have just connected over that. And then Jacque and I also connected, thanks to a national organization called Women Heart. I'll have ways to connect with that organization in the show notes, but I was able to find Jacque and ask her to tell her story through Women Heart. So, let's just dive in and set the scene. You live in Los Angeles.

Jacque Avalon [:

Yes. Yes. I do.

Boots Knighton [:

And how old are you now?

Jacque Avalon [:

ng to say still young. So, in:

Jacque Avalon [:

Because during that time, we just don't know what COVID did to us. We all knew that, you know, it was just kind of taking people out one at a time, and it was just a huge, huge stress on us. Through my point of view, as a nurse, it was just heartbreaking left and right. It was just deaths. I'm going to say lots of deaths, at least 3 times a shift. And it's 3 times a shift. That's a lot. That's way more than what we're all used to as nurses. And it was just, you know, heartbreaking, because the families of the ones who passed, their last moments with their loved one is through FaceTime. And even setting up that FaceTime is it's a struggle. It's a struggle. It was a really hard time, actually, just kind of recalling it.

Boots Knighton [:

Mm-hmm. When you recall that now, like, what do you experience in your body?

Jacque Avalon [:

n what I used to feel back in:

Boots Knighton [:

So, you've compartmentalized.

Jacque Avalon [:

Yes.

Boots Knighton [:

You’ve compartmentalized:

Jacque Avalon [:

Yeah. I felt like it's such a huge moment, but I just choose to kind of keep it in the back of my mind. Like, this happened. We lost 2 years. And for me, I had to move on, especially in my line of work. Every now and then, we have families come over, and then they talk about it. Like, I have, you know, I have no problems talking about it, but on my end, I just kind of have to treated as, you know, water off a duck's back. Like, I can't dwell too much on it. I don't want it to take anything from me at the moment. I just have to move on.

Jacque Avalon [:

ld say, this month, September:

Boots Knighton [:

What did this chest pain feel like?

Jacque Avalon [:

Definitely, I would say, a miniature horse pressing on my chest. It wasn't as bad as I thought it would be, but I just felt that slight pressure that would not go away. And I just knew. I'm like, I can't take this for granted. I'm not going to wait until it gets stronger, but even though I did. But, you know, it just felt like a very, very, like, tiny pony on my chest. I'm like, okay. It's somewhat manageable. I'm ill breathing. I'm not sweating as much. I checked my blood pressure. It was pretty okay. Like, not to a point where it's, you know, dangerously high. So, I told myself, okay. Make it out till, like, 7 o'clock. At least during that time, I had the resources to really check myself. I'm like, okay. I think I can make it till the time.

Jacque Avalon [:

So, as soon as I went to the emergency room, they checked out my blood work. They did echos and stuff. Of course, they told me my, you know, my health history. They're like, oh, did you know that you have ventricular septal defect? And I told them, yes. I've had it since birth, and it's nothing new to me. And they checked my troponin levels, which is like a cardiac marker to check if I have any, like, indications of a heart attack. It's negative. Everything came out clear. I was like, oh, so where did this chest pain come from? And then the ER physician told me, it's probably the stress. And I was like, I think maybe the stress could have aggravated it, but I know there's some kind of underlying problem to it.

Boots Knighton [:

That was just your intuition saying that to you.

Jacque Avalon [:

Yeah. Exactly. So, the ER physician said, it's okay. I will let you go home and just, you know, take a rest. You'll come back to work next week. And I was like, there's something in me did not want to say yes to that, so I just kind of, like, left them thinking, like, I'll probably think about it. So, the ER physician called my primary care physician, and my primary got so upset. He was very, very mad. He's like, don't you know, that this is her first-time having chest pain? She's never had chest pain in her whole life. In the 28 years that she's been alive, she's never had it. So, why are you letting my patient go?

Boots Knighton [:

And you, had you already left the hospital?

Jacque Avalon [:

No. I stayed. I waited. And then I was looking at my boyfriend. I was like, no. I'm going to wait this out. Let's see what they say. So, the ER physician told me that, oh, you know, I called your primary, and your primary said that he wants you to stay in for a cardiac workup. And I'm like, okay. Let's go. She gave me the choice whether to go home or to stay to have a cardiac workup, and I'm like, okay. Let's just stay for a cardiac workup. Why not? I don't have anything else to lose. So, we did the whole cardiac workup, which took about 2 days, a 2-day hospital stay. They did the full blown, like, 2D echo, chest X-ray, TTE.

Boots Knighton [:

And what is that for our listeners who may not know?

Jacque Avalon [:

TEE, which is the transesophageal echocardiogram, is when they sedate you, they actually sedate you and put a, I would say, a probe down to your throat so that they can directly visualize your heart structurally. It gives them a better visual than a 2D echo, basically. So, they can see how it functions. They can see how all the valves are and all that stuff. So, from their readings after the, TEE, they saw that I have a rare condition among adults called, double chambered right ventricle or DCRV, which is normally seen in children or babies, but extremely rare in adults. And they also saw that not only did I have a VSD. I also have a patent foramen ovale, which is another hole on the septal wall that separates my 2 atriums. So, I'm like, wow. I was kind of, like, shocked because, you know, all this time, I only thought that I only had one heart problem. I just had a bunch going on, basically.

Boots Knighton [:

What was that like learning all of that? That's a lot to learn about your heart.

Jacque Avalon [:

Overwhelming. Very overwhelming. I think it took me to a point where, like, I thought it was only one measly problem, but it just turns out into one huge problem. Like, with DCRV, I would say I had, like, 5 chambers at one point, because the right ventricle split into 2. So, it's giving up 2 different pressures. So, my heart is just, like, overwhelmed. It's mixing all this unoxygenated blood and oxygenated blood. My, like, my body is not getting, you know, the full oxygen throughout this whole lifetime at that point. So, to kind of like be told that, hey, you have so many problems, and you have a rare heart condition. And I'm like, oh, in some ways, I'm glad that they found it. Like, wow. In another way, I'm like, why me?

Boots Knighton [:

Yeah. You go through, like, this bargaining phase. Right? Either, like, disbelief, and then there's the victim phase. And it is the stages of grief when you learn that the main organ that keeps you alive is compromised.

Jacque Avalon [:

And just knowing that during that time, I was still being active. I hike. I work out. You know, I told myself I do get a little bit short of breath, and I can't keep up with others. I knew that, but in some ways, I'm like, you know what? At least we know the problem, and let's see what they have in store for us when it comes to the solution. So, my congenital heart specialist, I'm going to call her name, Dr. Rose Tompkins. She was an angel. I loved her so much.

Jacque Avalon [:

She said, you know, we have to do open heart surgery on you. And then she told me, you know that. Right? And I'm like, yeah. But to hear it, you know, to actually hear it from a doctor in a setting where, you know, there's a pandemic going on, and I'm 28. I'm supposed to, you know, live a life where I'm actively traveling, working, all that fun stuff. Like, to kind of hear that going through my mind, and it's something that I needed to process. I was crying. I was crying. I asked her, is catheterization not a possible intervention that we can do. She's like, no.

Boots Knighton [:

That's a reasonable ask, though, because there's a lot of heart things that can be fixed through catheterization. So, that's a reasonable ask.

Jacque Avalon [:

Yeah. And then she said, no. Your heart has been so compromised that it's very complex. It's a complex case. This is something that we need to do through open heart surgery. We can do more with open heart surgery than what we can do with a catheterization. So, basically, I would be wasting my time if I opted for a Cath procedure.

Jacque Avalon [:

So, I'm like, you know what? Let's go. Let's do the open-heart surgery. And then during that time, I tried going back to work. I did one shift, and I told my manager. I'm like, I can't. I think, the stress and the anxiety of knowing that I have an upcoming surgery with the potential of it being canceled due to COVID, like, it's too much. Like, I need to take some time off. So, she allowed me. Graciously, she allowed me for, like, a whole month before my procedure. Like, I could be off and then right towards when I'm better, then I can come back to work. So, throughout that whole entire month, I was, you know, just sitting in my thoughts. Just what's going to happen after surgery? I hope I am better after surgery. And through that whole process, I was like, oh, what if something goes wrong? You know, it's that little tiny person in the back of your head. Like, what if something goes wrong? How can I prepare my loved ones for that? And during this time, like, you know, I didn't really think much about advanced directives because I was just so caught up in the moment. I just wanted to do it kind of informally through my boyfriend, actually. I trusted his judgment more than my own mother, because I know my mother. She has her bias. She wants me to stick around. I feel that, you know, if I'm not a 100% what I am right now, and if my life requires a ventilator, if it requires a feeding tube, I don't want that. I've seen it. I've seen it so many times in my career. I've seen so many families just, you know, having these weird dynamics because of that. I do not want that at all.

Boots Knighton [:

Yeah. You've had a front row seat to a lot in the medical whirl.

Jacque Avalon [:

Yeah. I can't really say much about it, but it's horrible. The family dynamic that revolves around a loved one who is on life support. There are some that are very gracious, but there are just some that I really can't say much about. It's just monstrous, and I do not want that. I wish I can explain that, but I'm in this career. I need to keep this job, so as long as I'm in this career, I really can't say much, but if I'm out of it, then I can, you know, just say what I want, but I do not want that for my family. So, that's why I decided to tell my boyfriend. He is part of the medical field too, and he also knows what happens.

Boots Knighton [:

Is he also a nurse?

Jacque Avalon [:

He's actually a physical therapist. So, I mean, he doesn't really see what I see, but he understands. He's seen the families that I've seen who decide certain things, and it's just, this feels wrong. You know? But I feel that he does not have a bias for me, and he would just follow what I wanted because, you know, he gets it. And I told them no ventilator, no feeding tube. If I'm not a 100% what I am right now, I just want to go peacefully. No trouble. And he said, okay. And this was informal. I did not go through any notary to have, like, advanced directives or anything like that. So, you know, it was just a lot of a paperwork to be done, and I just feel like, maybe I'll just take this chance to just do it informally. And then surgery day came. I was excited. I was to a point where I put myself in ventricular tachycardia. At one point, like, I saw my heart jump up to, like, 160s for a little bit, and they're like, oh my god. I was like, I'm fine. I'm just very excited. I'm so sorry. Ma'am, I'm sorry. We're all good. I am breathing. I'm just a little too excited. And, you know, I talked to some of these nurses because they know like, all the nurses talk, they're like, oh, she's in this unit. Like, this is a nurse in this, I know it's HIPAA, but amongst nurses, like, you know, I was okay with it.

Jacque Avalon [:

They're like, oh, you're a nurse, too. I was like, yeah. I'm a nurse. And I'm like, thank you for taking care of me, of course. Like, I don't want to give you guys a hard time with the exception of the VTech. I'm sorry for that. So, they cracked me up for surgery. They said, like, wow. You're going to have a huge surgery, and you're so young. And I'm like, yeah. But better now than never, honestly. Right? Like, I want to, you know, keep this thing going. I want to keep my life going, and, you know, they were pleasant ladies to talk to. Before the big date came, my surgeon talked to me over FaceTime. He was explaining to me what is to be done during surgery. So, he told me that I'm going to try to make a small cut on your, you know, on your chest.

Jacque Avalon [:

And I'm like, doc, you don't have to make a small cut. Just make it enough for you to work. I don't care how big it has to be. Like, make it optimal to your, you know, comfort level. Like, I don't care if he had to go down even further. Just let me live. So, what he did is he said that he will shave off a couple of muscles because of my heart was pumping so much and so strongly that it grows extra muscle, like how normally a body does. Like, when you're a bodybuilder, your muscle grows, same thing with your heart. So, all these little muscles that are not supposed to be there, he shaves off just a tiny bit of it.

Boots Knighton [:

Which part of the heart? Which chamber? Was that in the ventricle?

Jacque Avalon [:

It was the right ventricle. He did the most, I believe. Yeah. He shaved off some of that, but not all of it because he was too afraid that some of it might develop a blood vessel over time, and he did not want to risk me bleeding out from that point. And then he also patched up the 2 holes with a prosthetic. I believe it's a prosthetic patch. I'm not entirely sure what material it was, but he patched up the patent foramen ovale, and also my ventricle septal defect. So, those are patched too. And I think during surgery, he did see some regurgitation on my mitral valve, so he had to go back in and kind of fix it a little bit.

Boots Knighton [:

Do you know how he fixed it? Like, did he put in a clip?

Jacque Avalon [:

No. No. I don't think he put in a clip. No. He didn't put any prosthetic too. I think he just shaved off some of the muscles that was around that portion as well.

Boots Knighton [:

So, was your heart stopped?

Jacque Avalon [:

Yes.

Boots Knighton [:

For how long?

Jacque Avalon [:

They told me that the surgery lasted until about 1 PM, so, 5 hours.

Boots Knighton [:

Wow.

Jacque Avalon [:

And then when I woke up, I was in the ICU. First thing I asked the nurse, I'm like, what fluids am I on? Because, you know, the nursing brain never turns off. I mean, it can turn off a little bit, but, you know, there's always a curiosity as to what you're on because you know what to ask. So, I woke up. Oh my god. I had the central line on my neck. I had the chest tube on my body, then I had the Foley catheter on too. And I had, like, 2 extra IVs for some reason. And then I'm just like, wow. I feel great. During that time, I didn't feel any, you know, pain on my chest. I was like, oh, this, you know, this feels good. I saw that on my scar here, they put skin glue instead of staples.

Boots Knighton [:

Oh, interesting.

Jacque Avalon [:

Yeah. They opted for skin glue instead. So, I got up. They had me getting up on the first day after the surgery, which is, you know, you have to push yourself to just walk at least, on your first day of surgery because you don't want to get those blood clots. Those things are, like, nasty. They take months or even, like, a year to be, you know, to be completely, like, dissolved.

Boots Knighton [:

And, hey. Educate us real quick on that. Tell us a little bit more about how truly nasty blood clots are. Yeah. Quick time out and do that. This is also part education for all of us listeners.

Jacque Avalon [:

Sure. Sure. So, usually, post-surgery, with any kind of surgery, whether it's ortho, whether you had open heart surgery, or, you know, you just had your gallbladder removed. That anesthesia knocks you out for a little bit, and your limbs are not like, you know, there's no not really blood circulating. It's very, very slow, especially when you lie down for a long period of time. Let alone, you know, 5 hours into the surgery, you're not moving whatsoever. So, in order for you to prevent blood clots from traveling anywhere, whether it's your brain or your heart or any other limb, you got to mobilize, you have to walk. Or if you can, you have these sequential compression devices, which are those little, like, the massagers on your calves that hospitals use, or sometimes, like, the doctors would prescribe some heparin shots as a prophylaxis to prevent blood clots from forming. Those are, like, some of the things that they would usually order for patients who just got out of surgery.

Jacque Avalon [:

So, my surgeon, he said, you have a choice whether you walk now or you get heparin throughout your whole stay here, and I'm like, yeah. Let's walk. I don't want any shots on my belly. I'm good. No more punctures, please. No more cuts. So, I was walking. I felt fine. It was a small ICU unit. I just did, like, 3 laps. You know? I was sitting up on the chair when I wanted to, and then I would lay back down. You know? I just really wanted to kind of take that moment to just exercise my limbs and make sure that my function is good. And then, I guess, during, my transition from ICU going to a step-down unit, they saw that my blood pressure was low. I would say about, it hit, like, 87 over 54 or somewhere there. They kind of freaked out a little bit. But to me, I was like, maybe my heart is trying to, function itself at a slower and steadier rate. You know? It was used to pumping a lot and strongly, but then now it has to kind of reconfigure itself to pumping more slowly and more, like, efficiently.

Boots Knighton [:

It had just been remodeled.

Jacque Avalon [:

Yeah, exactly. Just give it some time to kind of, like, rehab itself into a normal heart. They actually bolus me with 1 liter of fluids, and then after that, I got pulmonary congestion. So, I was fluid overloaded. I was swollen. And the worst part was I felt like I was drowning. It was so bad. I'm like, I had this heart surgery. I have a cough, and I feel like I'm drowning. Like, that's a lot of pressure that goes into the heart. Yeah. And that's a lot of pressure that goes into the sternotomy that was done. I was crying my eyes out because I've just felt like pain almost 24/7. And from that, like, during that time, I did not have my Foley catheter, so I wasn't really peeing out as much fluids as they gave me. It was just kind of like little by little, and I'm just like, wow. I just feel so, like, I'm drowning, I'm crying, and I'm like, okay, guys do something for me.

Boots Knighton [:

Yeah. Did they give you Lasix?

Jacque Avalon [:

They gave me Lasix. Yeah. I was on 80 milligrams of Lasix twice a day.

Boots Knighton [:

That's a lot. Right?

Jacque Avalon [:

Yeah. For the first day, 80 milligrams of Lasix. I was going to the bathroom, and I was just, like, crying my eyes out for the pain. And the pain medications that they gave me was not working. Like, IV Dilaudid, IV morphine, not working at all. I just ended up vomiting, which made things a lot more worse. And I was dry heaving, and I was just crying my eyes while holding my pillow against my chest, trying to stop my chest from popping out from coughing too much.

Jacque Avalon [:

I felt so miserable. I was just like, oh my god. This is the worst pain ever. Like, the best way that I can describe this pain is imagine a huge dagger that's burning. Let's say a smith was smelting this huge dagger, and he's pressing it against your chest, and it's burning, and he just keeps pushing on it. He's not letting go.

Boots Knighton [:

I don't want to imagine that. No. It's terrible. This is terrible.

Jacque Avalon [:

That's the best way that I can describe that kind of pain. And I have a pretty high pain tolerance, but that pain was just, it was just another level. I was crying my eyes out, and I just feel like this sharp burning ax just pressing against my chest. And I'm like, you know what? One of these days, I'm going to never forget this kind of feeling, because this is the feeling that people should, I wouldn't say expect, but kind of, like, keep that in mind because that's how it feels. That's the best way that I can get people to kind of understand, like, wow. That's a huge deal. So, what worked out for me is they put a pain consult for me. My pain was so out of control that they've had to put me on Tylenol around the clock. They put me on tramadol as well, 50 milligrams. I believe they also did oxycodone. Oh, no. Percocet. Percocet. They put me on Percocet around the clock as well. I could not take NAIV. Like, Dilaudid, no IV, morphine, whatsoever. I had to stick with that whole routine, and they also put me on Colchicine.

Jacque Avalon [:

Colchicine, is an anti-inflammatory medication that's usually prescribed for people with gout. But when you think about it, it makes sense because your heart's kind of inflamed as well. And the surgery side is also inflamed as well, so that kind of helps bring down the inflammation. So, I was kind of skeptical as to why they gave me some colchicine, which is actually for people with gout, but, you know, they explained it to me that way. And I'm like, okay. That makes sense. That way, it does make sense.

Boots Knighton [:

And did they know you were a nurse?

Jacque Avalon [:

Oh, yeah.

Boots Knighton [:

I bet it was a totally different experience for all of you guys working together to get through this heart chapter.

Jacque Avalon [:

Yeah. And I was thinking, like, if I was just a regular patient, maybe I would have some differences in care because my manager, like, visited me when I was in the hospital and gave me, like, a little basket. And in Cedars-Sinai, I don't think they would treat anyone different. They just knew that I was a nurse, and they just wanted to make sure that I'm good. But with any other patient who goes through this kind of thing, you would have to expect the same amount of care, because, you know, that's how pretty good they are. They would actually talk about my case a little bit, because it's such a rare case. And I'm not even sure if it's on a study at the moment, but I don't know. Maybe in the future, it will be.

Jacque Avalon [:

But it was a pediatric surgeon that worked on me. I think I was the oldest patient that he ever worked on, because he does his surgeries as well with Children's Hospital of Los Angeles. He just started working at Cedars-Sinai as well, and I believe I was his first case ever. So, I feel like, you know, the stars kind of aligned at that moment. You know? Having open heart surgery, I was bound to get it, but it was kind of like, when? When is it going to happen? And I was lucky. I was very fortunate enough to have it done at a really good hospital, have it done by a very, very extremely good surgeon, and the rest was pretty much a blur.

Boots Knighton [:

How long were you in that really painful state with fluid overload. How long did that last for?

Jacque Avalon [:

That lasted me about 2 weeks.

Boots Knighton [:

So, how long were you in the hospital?

Jacque Avalon [:

Oh, I was in the hospital for about 6 days, actually, but the pain just kept going, like, until the inflammation kind of, like, subsided. But the fluid overload subsided about 2 days after I left the hospital. The pain subsided about 2, 3 weeks, after the discharge. I just had to be on that pain medication regimen, and that kind of zagged me out, honestly. I was being told, like, Jacque, you had to walk. You had to walk. You had to walk. During my hospital stay, and they required me to walk 4 times a day during that time.

Jacque Avalon [:

And I was fluid overloaded, and I was in pain, and I was just like, even walking was like a pain because I was short of breath as well. And I was complaining. I was like, wait. You're telling me to walk, and I'm in pain. And I'm, like, literally drowning in my own lungs. I'm only going to do 1 lap, and then I just need a rest. I really need a rest. The recovery was, I would say, difficult. I mean, not only physically, but mentally as well. A lot of people don't really realize that, you know, it's not only the body that you need to recover, but it's also this.

Boots Knighton [:

For those who can't see what you just pointed to, you mean your mind, your emotional mental state.

Jacque Avalon [:

Yeah. So, the physical recovery took me about a year. A year to fully kind of run. Running was my gauge of “success for my goals”. The first time I walked or jogged around a block without getting tired, I was with my boyfriend. He was crying behind me because he never saw me, like, you know, just pushing myself and just having no problems with running or jogging around. And then from that, I just kept building myself over and over again. I gave myself little goals.

Jacque Avalon [:

I'm like, okay. I'm going to walk. I'm going to jog around the block once. Let's jog around the block twice. Let's try hiking a little bit. Oh, let's try, you know, the rock climbing came a little bit later, but we focus more on, like, cardio. And then I told myself, let's try lifting. When I was cleared to, you know, lift weights and stuff, I was getting stronger. I was getting back to my baseline, actually but, actually, better than my baseline. A year after surgery, I was able to complete the LA marathon.

Boots Knighton [:

Oh, wow. That is amazing. Congratulations.

Jacque Avalon [:

Yeah. Thank you. It's always been a bucket list of mine. I knew, like, before the surgery happened, I could never complete that marathon. I told myself, like, one day, one day when everything's all good, one day when I have my surgery, I'm going to complete that. And I did. I completed it after, I would say, 8 or 9 hours with my boyfriend.

Jacque Avalon [:

I still have that video of me crossing that finish line. I was crying my eyes out. I was really crying my eyes out. That was the ultimate goal of mine, and I finished it. And then after that, after I finished the marathon, I hit this wall. I just didn't know what wall I hit. At first, I was like, why do I feel sad all of a sudden? Why am I crying? Every now and then, I was crying about something, but I just don't know what it is. There are times where I'm like, I just don't feel like working out. I just had bouts of depression after my marathon, and I just didn't know why.

Jacque Avalon [:

For, like, the longest time, I did not know why I was feeling that way up until I believe it was the time where I went to Minnesota to meet up with everyone at Women Heart. I actually found out about Woman Heart through a patient of mine during my travel assignments. She was a congestive heart failure patient, and she told me about Women Heart, the organization for women with heart disease, and I had an interest of it. I was like, I got to know this. I need to see what this is all about. And during that time, it was the last 2 days to apply as one of the ambassadors for it.

Boots Knighton [:

The champions.

Jacque Avalon [:

Yes. And I'm like, I'm just going to put my name in. Why not? I'll put in my story. I'll put my name in. Let's see. We'll figure it out. Next thing I know, I'm in Minnesota. I'm like, wow.

Jacque Avalon [:

Just to see, like, how many women who have heart disease all in one room. Like, I would have never known. I think I was the youngest one who was in that room, or maybe the youngest one ever who has never joined Women Heart. They were wondering about me. Like, what happened to me? You're so young. Like, why are you here? And I told them my story, and it's the same reaction. Like, wow. You're just amazing.

Jacque Avalon [:

You're a warrior and everything. But, you know, deep inside, I just felt like, you know, there is something that was kind of, there was something that was making me sad, but I just didn't know. And during one of the sessions in Women Heart, when we are meditating, one of these ladies said, I just didn't have time to grieve for myself. That hit me. That was like, a light bulb moment. I didn't have time to grieve for myself. And then I flashed back into the time where I was recovering, when I was jogging, when I was running, when I was working towards this goal, when I was running and jogging and walking in the LA marathon, that just hit me. I was like, oh my god.

Jacque Avalon [:

I was just so focused on getting better physically. I just did not realize that there's a huge cut on my chest, and life will not be the same. People won't look at me eyes first. They're just going to look at my scar first. And that's how it's been until now. Like, you know, people don't look at my eyes first. They look at the scar. They will always recognize me as the girl with the scar on her chest, the young girl with the scar on her chest.

Jacque Avalon [:

And that kind of clicked because, like, now it's a new identity that I have to kind of get used to, and it took me a while, you know, just to realize, like, wow. This scar has changed me physically, but also out towards people. There are times where I am happy with the scar, and there are times where I'm not, especially a person my age. No one my age during that time at 28, at 30, at 31, they don't go through open heart surgery like this. I mean, some of them, they had it younger as a baby. But to be in an age where, you know, social media, where appearance is everything, where in this age, you're kind of expected to be, you know, healthy and just be “perfect”, but we're way outfield on that, at least for me, but it took a while to kind of embrace this kind of scar because this is now who I am. This is what gave me a 2nd chance in life. This 2nd life is beautiful, honestly.

Jacque Avalon [:

I always consider, like, October being my 2nd birthday, because without it, I would have got into congestive heart failure if I never had a fixed. Severe case of congestive heart failure. So, this little scar is everything to me. And no one can ever, like, take that away from me ever. And I do have it on my arm, actually. To commemorate my own little scar, I actually have this little woman here which is supposed to be me. And she has a little scar on the middle. Looks exactly the same as my own. And, you know, I take pride in that.

Boots Knighton [:

I have to interject something. I'm 45 now. I was 42 when I had my surgery. And it's interesting my relationship with my scar, and it's just proof that everyone's heart journey is very individualized. And I don't find people looking at my scar, but also, I live in eastern Idaho where it snows 7 months out of the year. So, I'm not wearing a lot of clothes that show a lot of my chest, but it's just interesting to hear your experience because it's just been completely different from mine, and we're kind of the same amount of distance out from our surgeries. And it just got me thinking, like, do I even think about my scar anymore, and I don't. I thought I would always obsess about it and stare at it and notice it, and I don't even think my husband notices. It's just I think we've moved on in a lot of ways. You know, for listeners, like, everybody's journey is going to be different with their bodies. And I think that if I had been your age when I went through my surgery, I think I would have had the same journey that you did. I think it's decade dependent.

Jacque Avalon [:

Yeah. Correct. I really think that way, too. Even dress shopping was interesting. I actually got married last Friday.

Boots Knighton [:

Last Friday?

Jacque Avalon [:

Yeah.

Boots Knighton [:

Oh, my gosh.

Jacque Avalon [:

Yeah.

Boots Knighton [:

Wow.

Jacque Avalon [:

I got married to my boyfriend, fiancé.

Boots Knighton [:

Your caregiver during the time?

Jacque Avalon [:

Yeah. He's so wonderful. And I've heard from my mother-in-law if I should wear a dress that covers this. And I'm like, no. Mm-mm. It's going to show. And I saw, like, sneak peeks of my wedding photos, and I'm like, it shows, and it's still incredible. And I'm so glad that I married my caregiver, my boyfriend, my fiancé. Like, he's such a wonderful person. He did not have to do these things for me. He did not have to take care of me. He wasn't obligated to do it, but he chose to do it. And I'm, you know, very fortunate to have that kind of person. You know? Because sometimes it's rare. Sometimes it's rare to find someone who can devote their time to take care of you, and he really took good care of me. I mean, he's a physical therapist.

Jacque Avalon [:

Like, sure. He helped me get up from bed. He helped me walk, and he just made sure that I'm functionally good. I think being a caregiver does take a lot out of a person, honestly. I'm just very lucky that he did not have to be so hands on with me for an extended amount of time, but it's good to have a good support that walks with you on this kind of journey. Even though they may not know what went on, what goes on with you, like, it's nice to have someone who is there for you.

Boots Knighton [:

Oh, absolutely. Well, as we wrap up, what is one piece of advice you have for those facing open heart surgery.

Jacque Avalon [:

One piece of advice would be, stick to your regimen, and also develop good habits that will lead you to a better recovery. If you haven’t exercised before your heart surgery, you should do it after, because it can go 1 or 2 ways. Let's say, after heart surgery, you realize that it is a second chance in life. You take that path and then you just thrive from it. But it can also go another way. Some people see that open heart surgery is like, you know, I just had surgery. I just feel sick. I'm in this sick body now.

Jacque Avalon [:

Like, it can lead any another way. You choose the path that you take. You choose the way that you want to see this surgery and how it would either benefit you. Either it will benefit you more or you just see it as a way of it being a signal that you're sick. You know, it's all mental, honestly. It's mental, physical, emotional. Just take whatever you can, and I hope you see the good in it. You see the benefit of it, and I hope that you can thrive from that kind of surgery. That's the best advice I can give.

Boots Knighton [:

That's great advice. And I ask every person I interview that same question. So, Jacque Avalon, thank you so much for sharing your incredible story from Los Angeles. And in the show notes, I'll have all of the conditions that she faced in her heart surgery and a link to Cedars-Sinai and also a link to Women Heart because it's an incredible organization for women by women. Thank you so much.

Boots Knighton [:

Thank you for sharing a few heartbeats of your day with me today. Please be sure to follow or subscribe to this podcast wherever you are listening. Share with a friend who will value what we discussed. Go to either Apple Podcasts and write us a review, or mark those stars on Spotify. I read these, and your feedback is so encouraging, and it also helps others find this podcast. Also, please feel free to drop me a note at Boots@TheHeartChamberPodcast.com. I truly want to know how you're doing and if this podcast has been a source of hope, inspiration, and healing for you. Again, I am your host, Boots Knighton, and thanks for listening. Be sure to tune in next Tuesday for another episode of The Heart Chamber.

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The Heart Chamber
Hope, Inspiration, and Healing. Conversations on Open Heart Surgery.

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