Episode 32

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Published on:

9th Jan 2024

Overcoming Misdiagnosis: Robyn Peacock's Path to Advocacy and Post-Surgery Empowerment -32

In this episode of The Heart Chamber Podcast, host Boots Knighton interviews guest Robyn Peacock about her journey with a bicuspid aortic valve, misdiagnoses, and ultimate recovery from open heart surgery. Robyn emphasizes the importance of self-advocacy, proactive healthcare, and trusting one's instincts when it comes to medical concerns. The discussion sheds light on the emotional and mental aspects of heart surgery recovery, with a focus on managing emotions and seeking support. Robyn's story highlights the significance of listening to one's body and pursuing a second opinion when needed. The episode concludes with Boots encouraging audience feedback and interaction with the podcast.

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

06:31 Mild fatigue and memory issues in mid-forties.

12:47 Misdiagnoses, missed diagnoses caused much stress.

16:32 Recurrent ER visits for undiagnosed subacute strep infection.

20:14 Urgent hospital visit due to low hemoglobin.

21:04 Admitted, tested, discharged, no internal bleeding found.

25:30 Excited for new chapter in life journey.

30:28 Rebirth after open heart surgery, depression shock.

31:16 Grateful for surgery experience, advice on processing.

36:39 Balance emotions, trauma, and self-regulation awareness.

39:22 Navigating medical system with grace and self-advocacy.

A Little More About Today's Guest

Always a Southern California girl, Robyn loves all things water and tennis! She lives in Palos Verdes with her husband and two very cute mini-poodles, Hallie and Hazel. Her two boys, Albert & Chancellor, are recent college graduates and out exploring the world. During weekends you can find her in the Naples Canals in Long Beach paddle boarding, or riding bikes around the South Bay. She is beyond grateful for her second "heart start"!

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

If you enjoyed this episode, take a minute and share it with someone you know who will find value in it as well. You can share directly from this platform or send them to:

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

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 episode 32 of The Heart Chamber Podcast. I am your host, Boots Knighton. Thank you so much for supporting this podcast and coming back week after week to hear stories of hope, inspiration, and healing. If you're just now finding me, welcome. Go to my website, theheartchamberpodcast.com, and be sure to sign up for my newsletter. I will be starting a newsletter early this year. Now, I did break my leg back on December 9th, which has put me a little behind on goals and aspirations, but I am healing well, and I am ready to dive back in and bring all things heart, mind, body, and soul to you for the year 2024. Today's episode is with a heart sister friend of mine, Robyn Peacock.

Boots Knighton [:

Robyn had a bicuspid aortic valve. And the journey to discovering that she had one, that she needed surgery is quite the journey that I think a lot of us heart patients find ourselves on. It seems that most heart people I speak to just don't have an easy straightforward path to healing, which is one of the reasons why I started this podcast. And Robyn brings such wisdom, and she offers so many important tidbits on how to advocate for yourself. I think you're going to find this episode so important, and I do hope that you will share it with people. That is how I can get this podcast to more people is your willingness to tell others about The Heart Chamber Podcast. So, without further ado, I am so honored and excited to bring you my conversation in with Robyn Peacock.

Boots Knighton [:

Welcome to The Heart Chamber. Hope, inspiration, and healing. Conversations 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 [:

Robyn, you and I found each other through Women Heart, which is a national organization for women with heart disease. I did not know about Women Heart when I was facing my heart journey, and I wish I had known about it. And so, I'm so glad you agreed to come on to the podcast because the more we can talk about Women Heart, the more we can get the word out about this amazing organization.

Robyn Peacock [:

I agree. I agree. I did not know about them either. And I do wish I had known because I think some of the support prior to the open-heart surgery and just during the 15 years I knew about my condition before the surgery, I think having had some more support would have been great. So, but now let's get the word out.

Boots Knighton [:

Yes. Exactly. Okay. So, give us the broad strokes of your heart journey.

Robyn Peacock [:

I'm adopted. And so, unknown birth family history. And fast forward to when I was 42, I felt like I needed to just get a checkup. I had put on a lot of weight. All I knew about heart disease was coronary artery disease. So, I went ahead and had a coronary calcium scan done, which my score was 0. But at the bottom of the report, it talked about a dilated aorta, in which I didn't know anything about. So, I went ahead and googled it, and it came back as an aneurysm, which frightened me because not knowing my family history, I don't know if I have any history of heart disease or heart issues.

Robyn Peacock [:

So, through friends, I found a doctor up at Cedars Sinai and was diagnosed with a bicuspid aortic valve and an ascending aortic aneurysm. I felt like I was a walking time bomb because we didn't know if it was a new aneurysm or if it had just been there. But over the course of the next 15 years, I was followed. It was stable. It was stable. And I knew that at some point, I'd have to have open heart surgery. And it was either going to be because the aneurysm was bursting or tearing or my valve was going to fail. And what happened for me is that my valve started to fail.

Robyn Peacock [:

I developed severe aortic stenosis, and I had open heart surgery in June of 2022 at Cedars Sinai. And I recovered and great, and I feel it is amazing to know how poorly you felt prior to the surgery because it became your normal. It was just your normal. And once you get on the other side of the surgery and all of a sudden, your body has oxygen, and your brain has oxygen, and your heart isn't struggling. It's amazing, the whole new lease on life that you get not only because you have a new valve and you're moving forward, but your body feels better. It was amazing. It was the most amazing experience.

Boots Knighton [:

Incredible. What were the symptoms leading up to the surgery?

Robyn Peacock [:

Over the 15 years, fatigue was kind of the common piece, but not extreme fatigue. If I would play tennis, there were times I would come home and take a nap. If we would go on hikes, I would come home and take a rest. But just unusual for someone in her 40s, yes. But knowing I had this heart condition; I was always very sensitive to listening to my body. If it needed rest, I rested. But about a year out, so middle of 2021, I started to notice some brain fog, meaning I couldn't remember 6 digits. When you get a text and, you know, fill in this six-digit code to get to this website, I couldn't remember with the phone next to me the 6 digits to get into the website.

Robyn Peacock [:

I had to go back twice to enter 6 digits. That was unusual for me because I'm a numbers person. Numbers make sense. I remember numbers. I remember phone numbers. That was interesting. And then the fatigue just got worse and worse. And by January, I was pretty much afraid to tell my husband because, you know, he's been living with this, and there are limitations when you have an aneurysm over the course of the past 15 years, and I was afraid to let him know that I really felt like I was 30 years older.

Robyn Peacock [:

And I thought, is this how I'm going to live the next 30 years of my life? It was frightening. It was very frightening because I didn't want to tell anyone, but I felt like I was 88. I really felt like I was at the end of my life with the fatigue and the brain and the exhaustion. It was so weird, but I had no idea that that was related to aortic stenosis. I didn't understand the connection. I didn't understand. I just knew I was tired and I knew I had this heart disease or this heart condition and I knew I had to protect my heart from the aneurysm. That was my focus. The focus was the aneurysm. Frankly, I didn't even think about the valve even though it was bicuspid. I really was more focused on the heart rate. Don't get your heart rate up because you don't want your aneurysm to tear. And on the other side of surgery, I have since learned that when the aorta is narrowing because it is stenotic, because it is calcified, the heart is working so hard to get oxygen rich blood to your body, to your brain, to everything. And it just was it was such an eye opener when I learned that. And I went to my doctor on May 6th. I was going every 6 months for an echocardiogram, and he did the echo and said it's time for your surgery.

Robyn Peacock [:

And I thought he was going to tell me that my aneurysm was had grown considerably, and that was the problem. And I mentioned, you know, I'm so tired. My brain just feels like I'm pulling to remember things. I'm pulling each day just to even exist. And he said, well, he said your valve is so severe that we need to replace it in the next, you know, 30 to 40 days. So, it had nothing to do with the aneurysm. My aneurysm was still stable at 4.9, and it was such an eye opener. It was just, it was truly an eye opener on that.

Boots Knighton [:

When you originally learned about all this, did they give you an education on what all this meant for the body, the symptoms to expect? Did they give you, like, a timeline plan, like, come back in this amount of time? Any of that happen for you?

Robyn Peacock [:

Generally, on a very light level, I would say. For the 1st year and a half, I was followed probably every 30 days and then every 60 days because we didn't know if the aneurysm was growing. So, they had to track it carefully because if it was growing, obviously, it would have been more critical. But after, you know, a period of time, it's like, okay. Come back in 6 months. Okay. Come back. So, it ended up I went in every year for many, many years.

Robyn Peacock [:

And then probably the last few years, I started going in every 6 months. The limitations, I had to give up skiing. I had to give up roller coasters. Anything that could potentially, you know, impact my heart and the heart rate. I couldn't lift over 10 to 15 pounds, but I wasn't going to give up my tennis. I just said, if I die on the tennis court, Dr Siegel, I die on the tennis court, but I have to have something left, and that is my thing. So, we just worked on it, and we just followed it. And I felt great for all those years. Always aware of it, but other than little fatigue here and there, but not a huge plan in in the big picture. It was more just follow every year and how are you feeling.

Boots Knighton [:

What medicines?

Robyn Peacock [:

Lot of medicine. I mean, I definitely had a lot of medicine because you have metoprolol, Lisinopril, and a statin to protect the heart rate and to protect the blood pressure and just to keep the pressure off of that, you know, the aorta.

Boots Knighton [:

How old were you when you had your surgery?

Robyn Peacock [:

58, and I was discharged on my 59th birthday.

Boots Knighton [:

Beautiful. Discharged, you mean, like, from just care?

Robyn Peacock [:

From the hospital.

Boots Knighton [:

Oh, so you were right up against your birthday. Gotcha. Gotcha.

Robyn Peacock [:

Yep. So, it was great. It was the best birthday present ever, truly. A whole new birth. I mean, it really is. I mean, they stop your heart. And all of a sudden, you get this whole new, I'm calling it the 2nd start. And to be discharged on my birthday, I mean, how much better could it be?

Boots Knighton [:

That is perfect. Tell me, you had some misdiagnoses prior to this.

Robyn Peacock [:

I did.

Boots Knighton [:

That is important because I don't know many heart patients who, unless it is just so profoundly straightforward, like a full-on blockage that's going to kill you any second, I don't know many heart patients that seem to have a straightforward path.

Robyn Peacock [:

I've had missed diagnoses and misdiagnoses. I was pregnant in 1998 with my 1st child, and my OB had heard a click in my heart. So, he sent me off for full cardiac workup, and it came back as mitral valve prolapse, and it wasn't. And all of the materials, all of the tests missed the bicuspid valve, and that was 98. And then early in 2000, I also went for another heart workup, and, again, it was missed. You know, they just kept saying you have mitral valve prolapse, but didn't tell me what to do about it other than you have this. And I ended up having 2 C-sections with my children, which is very fortuitous because with an aneurysm, you know, you're high risk to give birth naturally. And I ended up with a retinal hemorrhage, which is why my doctor had me have C-sections. And the retinal hemorrhage could possibly be related to the connective tissue disorder which is part of this aneurysm and bicuspid aortic valve in the bigger picture. The elasticity in your arteries and your vessels, you don't have as much elasticity as normal. And so, possibly the retinal hemorrhage was a result of that. And so, I was very lucky because so many people don't know that they have this bicuspid aortic valve until, unfortunately, they pass and an autopsy is done. So, I was very lucky at that point because I didn't know about it yet, but I didn't have to have, natural birth.

Boots Knighton [:

And what connective tissue disorder do you have?

Robyn Peacock [:

It's not diagnosed. I'm just saying that it's part of this family of the Marfan's. And with the bicuspid valve and the aneurysm, you know, the reason why the aneurysm grows is because you don't have the elasticity in the aorta to come back. So, I have those misdiagnoses, which, you know, looking back, unfortunate, but very fortunate that I was proactive with other areas of my life to keep, you know, my body going. The biggest issue that I've had is the endocarditis. I don't know if we want to get into that. So, endocarditis, it can be straightforward if you present with a fever. Now, endocarditis is an infection in the valve of the heart. It's a blood infection that settles on the valve and it creates vegetation. And a lot of people who get this end up with open heart surgery because the vegetation eats away at the valve. I was fortunate enough that I didn't have that outcome in that moment in time. So, this was 2017. So, I've known about my bicuspid valve for 10 years and in spring of 2017, I woke up with severe pain in my neck. So, I went to the orthopedic, I went to the neurologist, and they put me on patches and they gave me a neck brace and said, you know, we're not sure what's happening, but let's rest your neck. So, okay, I did that. And then all of a sudden, the pain traveled to my legs and it was my inner thighs. It was as though I had done 2,000 plies in a day, and I just shredded every muscle in my legs. I could not walk. It was so severe. I could not walk and very frightening. This was probably about May of 2017. So, again, I went to all sorts of specialists. I didn't have a doctor that was very interested in this problem.

Robyn Peacock [:

And so, when I went to the ER, I went to the ER 3 or 4 times and it was constantly misdiagnosed. The issue in the big picture is that I had a subacute infection. I had a subacute strep infection from my mouth. Everybody has strep, and I must have brushed my teeth, flossed wrong, and the strep just happened to get into the blood system and landed and attached to this diseased valve that I had, which was the bicuspid, but I never had a fever. Well, I didn't have a high enough fever. When you go back into my medical records, you see that I had a fever of 101 in July. And so, why that's important is because if I presented to the ER with a fever and with my heart history, they should have done a blood culture versus just regular lab work. A blood culture takes your blood and it grows it on petri dishes to find the infection, to find what's wrong with the blood. And because no one was doing a blood culture, even though my blood work, my numbers were dropping and skyrocketing, like, my inflammatory markers were skyrocketing. My hemoglobin was dropping. All these other things were happening, but nobody ever connected it to a valve that was being attacked by this infection. So, through a couple of different ER visits, 1 ER doctor who actually lives in my neighborhood told me that I was constipated. I was constipated and it was pushing on my pelvic nerve or something along those lines and gave me Ativan because he thought I was anxious. So, the next morning, I called my OB. I went straight to him, and I said, I need an internal ultrasound. I need to see what's going on. You know, I need to roll this out. So, I went there, ruled it out. I was fine. But I'm still in a wheelchair at this point because I'm not walking. And I go to all sorts of specialties all over Los Angeles. And once the doctors there ruled out their specialty, there was no further interest. You know, sorry it's not orthopedic. Sorry it's not neurology. Sorry it's not rheumatology. Sorry it's not oncology. It was very frustrating, but I was still proactive. I mean, that's my message is you've got to listen to your body, and you cannot take no for an answer. If you do not feel right about what the doctor is telling you, it's okay to tell him that or her that. It's okay to hurt their feelings. We're also afraid about not hurting people's feelings and not disagreeing with the experts.

Robyn Peacock [:

Well, I'm the expert of me. Nobody else is, and everybody is doing the best job they can. You have to believe that the doctors are doing the best they can do, but they are not the expert on you. You are, and your gut is. And the other thing that came about that summer was just realizing how important it was to be my own advocate. And thankfully, I have the most wonderful husband, and he is super supportive and never complained about having to literally start taking care of me because I couldn't do anything. So, that is a huge part of my story of the misdiagnosis was the endocarditis. So, you just fast forward, and, ultimately, it was discovered what it was. And to this day, that doctor, I still see him. He's an infectious disease, and he saved my life. My body was shutting down.

Boots Knighton [:

How long was it when those specific symptoms presented themselves until you met this doctor that saved your life? What was that time frame?

Robyn Peacock [:

6 months.

Boots Knighton [:

Oh my gosh.

Robyn Peacock [:

6 months. So, how it actually came about is, they called me one day after some blood work, again, not blood culture but blood work and said your hemoglobin is at 7.4, you must be internally bleeding, go to the emergency room right now they're waiting for you. So, 8 o'clock on a Wednesday night, we race over and we go in and they check me in. And they come to me this is funny. They come to me with these bottles, and they look like airline alcohol bottles. And I thought, why are they bringing me alcohol in the hospital? It's like, what are they going to do to me that I need this? Those are the blood culture bottles. It is so weird. Those little bottles look like airline alcohol bottles, but that's where they put your blood in for the blood culture.

Robyn Peacock [:

So, I was admitted, and I had, you know, you always get IVs when you're admitted to the hospital, and I was there for a couple of nights. Discharged on Friday after all the testing. No. You're not internally bleeding. They went past my heart to go look inside, I think it's the TEE, the transesophageal, where they go all the way down to look in your stomach and your abdomen to find the internal bleeding because my hemoglobin is dropping. They go right past the heart. So, here's this vegetation sitting on my heart, but it's just sitting there. But they go past. I have no internal bleeding, and I get discharged. 2 days later, all of a sudden, I think I'm going to crawl out of my skin. I am so hot. I have a fever of a 130.5. I call the doctor and I say, oh my gosh. I have this fever. She said, go to the hospital. So, I go to the hospital and I present with his fever.

Robyn Peacock [:

That is ultimately the hospitalization where this infectious disease doctor came in and said, I know what you have. And he said, you have endocarditis. It's an infection in your valve and we can save you. We can fix this. Great. So, what saved my life was the staph infection that I got from the IV from the hospitalization for the hemoglobin because I had the subacute strep and I had the acute staph. And it was the acute staph infection from my skin, again, we all have staph on our skins, that gave me the fever.

Boots Knighton [:

That tipped you over the edge. That made it. Your body was finally yelling loud enough for the doctors to hear.

Robyn Peacock [:

Never did I know that the heart has the electrician, the plumber, and the infectious disease doctors. Again, I've always thought that cardiology was cardiology, and it was everybody did the heart. So fascinating.

Boots Knighton [:

So, say that again. The heart has the electrician.

Robyn Peacock [:

The plumber and the infectious disease. I had no idea. I had no idea.

Boots Knighton [:

Okay. I've got 2 questions on that one. I could come up with many. I mean, you have to laugh because it is just so bananas. Right? But,

Robyn Peacock [:

it is.

Boots Knighton [:

You keep mentioning vegetation on your bicuspid valve, and I keep literally picturing, like, grass, flowers. What do you mean by vegetation?

Robyn Peacock [:

Well, they call it vegetation from what I understand. It grows. This “whatever” this is, it starts growing on the valve, and it can eat away at the valve.

Boots Knighton [:

Wow. So, it's like what you would grow in a petri dish.

Robyn Peacock [:

I guess I mean, I don't know if it grows like a carpet. You know? Again, I don't know. I know that mine, I had a tiny pinhole. So, it did grow through one of the leaflets, and it gave me a little pinhole, but it didn't attack the whole thing, I guess.

Boots Knighton [:

That's amazing. It sounds like you're really lucky.

Robyn Peacock [:

I'm very lucky. I just feel like I am meant to tell this story because I've had so many pieces to this puzzle that different people can relate to for different reasons.

Boots Knighton [:

Yeah. For sure. So, okay. How long were you in the hospital for that? In that stay?

Robyn Peacock [:

A week.

Boots Knighton [:

I'm guessing you're on IVs the whole time, like a PICC line, antibiotics.

Robyn Peacock [:

Yes.

Boots Knighton [:

Yeah. Okay.

Robyn Peacock [:

PICC lines. PICC line all day long. And, again, once you start getting all of that amazing antibiotic and you feel great, you feel like $100. You feel like $1,000,000. You feel like, wow. I was feeling so poorly. And I just remember not feeling sick enough to be in the hospital because I felt so great, but yet I had to be in the hospital because I needed that constant for the first 7 days, I needed that constant IV, and then I was on 6 weeks daily PICC line antibiotics. I'd go in every day for 6 weeks. I guess it's an infusion.

Boots Knighton [:

So, then you healed from that, but then you eventually needed the open-heart surgery, and now you are living your best life.

Robyn Peacock [:

Living my best life. So thrilled as you and I are both part of this women heart. I'm so looking forward to helping others and seeing where this next chapter of my journey takes me, my kids are grown. You know, they're doing great. They're both out of college, and we have 2 great poodles. We paddleboard. I'm playing tennis again, and we're starting to do a little bit of traveling because my husband's, you know, going to retire in the next probably 4 or 5 years, and I'm just so deeply grateful. I wake up most days I mean, we're all human. I wake up most days just super grateful, just super grateful to be here. And I just want to help others. I just want others to know that they're not alone, that there's so many resources out there for us. We just have to get them to people. You know?

Boots Knighton [:

A question I like to ask all my heart patients is, what burning piece of advice do you wish to give to everyone who comes after you?

Robyn Peacock [:

Be proactive. Listen to yourself. Listen to your gut. You are right. You are right. And my husband has always called me the hypochondriac who was always right. And it turns out, I am right. I know myself, and I am the expert on me.

Robyn Peacock [:

Be proactive. I cannot sing that from the stars loud enough. Because I was proactive, I figured out and got answers on my endocarditis. Because I was proactive, because I had put on a lot of weight, I had a coronary calcium scan. It was a flyer in the mail. Coronary calcium scan, Harbor UCLA, $299. Let's see how clogged your arteries are. I was convinced my arteries were clogged because I'd put on all that weight.

Robyn Peacock [:

And just be proactive, and do not take no and don't feel bad if you disagree with the doctor. Just don't. Don't feel bad for asking for the second opinion. And there were times over the 15 years of my journey waiting for open heart surgery, there were times I wanted to go get a second opinion just because I felt unsure. I mean, as time just keeps going, it's like, well, I'm tired of not roller coastering. I'm tired of not skiing. Isn't there something else we could do? Maybe I should get another opinion. But I felt guilty. I felt like I was going to cheat on my cardiologist because he's so wonderful and amazing. Especially women, we feel guilty when we want to disagree with someone or if we want that second opinion. Do not. My biggest thing is do not. It's your life, not theirs.

Boots Knighton [:

Yeah. What has helped you heal?

Robyn Peacock [:

This is the faith part. What has helped me heal? All faith, no fear. When I had endocarditis and I was flat on my back and I couldn't get out of bed except to go to appointments, I really had to sit with myself, and I had to just relax. And whatever higher power people believe in, feel it and own it and listen to it. For me, it's God, and he was with me that summer of endocarditis, and he's been with me every step of the way ever since, and it's been the greatest gift to have Him with me during some of these very frightening times. Post open heart surgery, sometimes you can have a serious depression, and it's not something your doctors tell you about, at least not mine. And it hit me very, very hard. It hit me pretty hard about four and a half months out. And the only reason why I knew that it might happen is because I'm part of a Facebook support group for bicuspid aortic valve, and people had mentioned this depression. And so, I was aware that it could happen via that avenue. And so, it did. And it was frightening because I then had to dive deep into what happened to my body. There's trauma to your body when you have open heart surgery. When you have any type of surgery, there's trauma to your body. So, there's trauma mentally and there's trauma physically.

Robyn Peacock [:

And in order to heal, I had to relive the surgery. I had to know exactly what happened to me. I now had to know who was in the room. I had to read up on the perfusionist, to the person who runs the machine that's holding your heart, that's holding your blood and, you know, helping your brain understand you're still with us, but your heart isn't. Right? So, for my healing, I had to understand each step of the way. I finally got the courage to ask for my surgery notes and I read through my surgery notes. I wanted to see what the nurses were writing. I wanted to see what happened during those 5 hours. I wanted to know how long I was on the heart lung machine. And once I was able to sit with those details and those facts and with God just giving me the strength to sit with that because it's frightening and it's scary. I was able to move on. And by about mid-January, I just felt like I kind of was going through another rebirth, and I was super excited, like, where is my life taking me now? You know, I finally felt like I could put the open-heart surgery in the past, and I was shocked. I was shocked when that depression hit me. I knew it potentially could come because of other people on this website, but I had been so positive in all faith. No fear.

Robyn Peacock [:

I lived on this plane. Like, I'm rolling right through this surgery, and I'm going to be amazing. And it's going to be amazing to be on the other side, and I am so grateful for the doctors and for my valve and for all the people as a part of it. But obviously, I needed to process the trauma to the body, and I did. So, I think that my advice is with any type of procedure or anything that happens in your life that you feel this overwhelming sense I didn't understand it at first. This overwhelming sense of something's just bothering me, but I don't know what it is, take a moment. Take a lot of moments and just sit quietly and kind of walk through your life and your brain and look for the areas that might be troubling you and then sit with it and journal about it, write about it, walk with it, and try to understand and process it because when you get to the other side, it's amazing.

Robyn Peacock [:

It's such a gift to try to get to that other side, and I didn't recognize the depression at first. And that's why I'm saying. You just have to feel that something's not right. And then all of a sudden it dawns on you, I'm depressed. And get help if you need, you know, get counseling if that is what you need. For other reasons in my life, I've had a lot of counseling, so I kind of recognized and I knew how to walk through it. But there's nothing to be ashamed of for counseling. Not at all.

Boots Knighton [:

And I talk about that a lot through all my episodes, and I've had specific episodes on getting help with the mental aspects, specifically episode number 5 back in the winter of 2023 with Cassie Fuller, my physical therapist. She and I spoke intensely about that. And it is absolutely real, the cardiac depression. My surgeon actually talked to me about it ahead of time and said, get something in place because this is, he said it just always seems to happen. So, I, like you, also read my surgeon notes, and it took a little bit of time before I had the bandwidth to even access the portal and get it all. And I even have a printout that I keep meaning to just post on social media because I want people to understand what we go through of all the chemicals that got put in my body.

Robyn Peacock [:

Interesting. I didn't even think of that.

Boots Knighton [:

Yeah. I will post that. I'll send you a screenshot of it over email, but then I'll also post it for listeners. It is bananas what is put in our bodies during open heart surgery. So, your body is going through this detox. The episode I'm airing, I actually interview this amazing gut health expert. His name is Josh Deck, delightful gentleman. And he and I have this in-depth conversation about detoxing the body before surgery and how that sets you up for a successful surgery and then a really successful recovery period.

Boots Knighton [:

And I would like to propose with you, Robyn, and all the listeners that we also need to detox our emotions. And so, as you were just sharing about all this and how you needed to read the surgical notes and understand what happened to your body, that was like an emotional mental detox of this incredible, incredible trauma your body went through. And I don't think I know, actually, the medical community. They're not even coming close to nailing this yet of, like, the spiritual, emotional, mental component of having your heart stopped, and what that does. Now my surgeon said, oh, it's just going to take a nap. And I was like, bless your heart for, like, trying to make that sound way less traumatic than it is. You know, I adore my surgeon and I wish I could spend time with him every day. Like, I just adore the man. But, like, dude, you just need to call this for what it is.

Robyn Peacock [:

Well, yes. That is hilarious. That is hilarious. And we're just going to take a little nap.

Boots Knighton [:

Yeah. He's like, it's just going to be a little nap. And I was like,

Robyn Peacock [:

no.

Boots Knighton [:

Oh, okay. He does this every day. So, to him, it's probably like no big deal, like taking a nap.

Robyn Peacock [:

Well, I think part of that rises to how much information do we want ahead of the surgery versus after the surgery. We all research and use the internet to know things. I did not Google before my surgery. I did not want to know because once I was told on May 6th that my surgery was going to happen in the next 30 days, I went into this higher plane of all faith, no fear, and I didn't want to know. I just knew it was all going to be great. I had no other option. I couldn't think any other option than all faith, no fear. Everything's going to be great. But after the fact, I think we do want to know, like you say this, I love this emotional detox. I mean, I just think those are, it's so descriptive. I love that.

Boots Knighton [:

Well and the more descriptive we can be, I just know the importance of naming the emotions, naming the trauma, like, but we have to be careful not to dysregulate ourselves or those around us at the same time. Like, for instance, I didn't want you to go through the blow by blow today because, like, well, it can be dysregulating for listeners, for yourself, for me. Right? Like, there comes a point where I know just the longer I live and the more life experience I have, the more I can stay regulated. Like, I no longer, like, Google my heart stuff unless I'm, like, feeling so solid in my mental health that day. I'm in, like, another chapter of my own heart journey right now, and so I'm choosing not to watch the news because I can't watch the news and advocate for my heart. Right? Like, there's such this delicate balance of keeping your nervous system regulated, not constantly retraumatizing yourself with your story, but yet keeping it in the forefront enough that you can still advocate for yourself. It's such a balance. And I do my best listening to my body. And, you know, how you were saying you're an ex, we are experts in our own bodies. I can be my own best expert when I am regulated and grounded. If I am panicking and thinking I'm going to die tomorrow, I can't really listen to what my body is telling me.

Robyn Peacock [:

I hear you. I hear you. I call that being at capacity. What's my capacity at the moment?

Boots Knighton [:

Bandwidth.

Robyn Peacock [:

Bandwidth. What can I handle in the moment? Where am I at today? And I read something recently. This chapter of my life, I'm calling it invite only. It is invitation only, and I have to assess where I'm at in the moment before I commit. So, I thought those words were so when I read that I don't know where I read that, but it was this, my life is invite only right now and because I've recognized like you. So, I'm going to look more into this regulation.

Boots Knighton [:

Well, there's dysregulation and regulation of the nervous system.

Robyn Peacock [:

I'm going to look more into that because I've just identified it as, where's my capacity today in this moment?

Boots Knighton [:

I think those are synonyms, and bandwidth would be another. And then with thinking about the invite only, I absolutely love that. Brene Brown talks about,

Robyn Peacock [:

oh, she's great.

Boots Knighton [:

Yeah. So soft front, I'm going to mince her words a little. Soft front, hardback. So, like, having the boundaries, but having the grace for ourselves and others that, like, everyone’s like, I just love how you were saying earlier in our conversation that the medical community is doing the best they can, and I can't agree more. And we still need to advocate for ourselves, and we need to understand that the medical community is so maxed out. I personally think we're starting to witness a serious, like, necessary crumble of the medical community, and that's a whole another podcast for another day. But, like, the silos I mean, it's why I started this podcast because I wasn't told how to thrive after open heart surgery. And so, you know, this is like my podcast is like, okay. We've survived putting our hearts down for a nap. And how can we thrive now that our hearts have taken a nap? So, before we have to end our episode for today, any parting words of wisdom for our listeners? I mean, you've had so many amazing nuggets.

Robyn Peacock [:

My tagline's all faith, no fear, be proactive, and you are the expert on yourself. You are your own best expert. Believe it. You know, really believe it, and reach out for help. Absolutely. There is no shame in asking for help.

Boots Knighton [:

Mm-hmm. And Women Heart is one of those places. And in the show notes, I will have Women Heart URL for that. So,

Robyn Peacock [:

that's great.

Boots Knighton [:

Yes. So, Robyn Peacock, thank you so much for your time today.

Robyn Peacock [:

You are so welcome, and I look forward to chatting with you again. And good luck with everything. Reach out if you need help.

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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About the Podcast

The Heart Chamber
Conversations on open-heart surgery from the patients' perspective
**The name of this podcast is changing on June 4, 2024. Be sure to subscribe so you don't miss the announcement!** Join Boots Knighton every Tuesday for conversations on open-heart surgery from the patient perspective. Boots explores the physical, emotional, mental, and spiritual experiences of surgery with fellow heart patients and health care providers. This podcast aims to help patients feel less overwhelmed so you can get on with living your best life after surgery. You not only deserve to survive open-heart surgery, you deserve to THRIVE!
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