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Hope for the Holidays: Still feeling 20 years younger after HCM diagnosis and myectomy
Episode 7612th November 2024 • Open Heart Surgery with Boots • Boots Knighton
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Hey Heart Buddies! I am back for part two of Hope for the Holidays with Lisa Mihan who returns to share her incredible progress post-myectomy. Lisa was diagnosed with hypertrophic cardiomyopathy but never gave up. She has transformed from struggling with daily symptoms to thriving on the tennis court and embracing a more vibrant life. This episode isn't just about physical recovery—it's about overcoming mental and emotional hurdles too. Tune in to hear relatable stories of finding hope, building community, and the surprising gifts that come from life's toughest challenges.

You can listen to Lisa's original interview here.

Join the Patreon Community! The Joyful Beat zoom group is where you'll find connection and hope that you aren't alone in your journey.

If you just want to support the show as a one-time gift (thank you), go here.

**I am not a doctor and this is not medical advice. Be sure to check in with your care team about all the next right steps for you and your heart.**

How to connect with Boots

Email: Boots@theheartchamberpodcast.com

Instagram: @openheartsurgerywithboots or @boots.knighton

LinkedIn: linkedin.com/in/boots-knighton

Boots Knighton

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Open Heart Surgery with Boots

Transcripts

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It's not something I think about every day anymore. And that is so

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freeing. I mean, I used to. And as many heart patients do, you

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focus on your heart all the time. It's like you were thinking about what it's

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doing all the time and the sensations you're having and is it a

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good day and a bad day or bad minute? And it's

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just so freeing to be not

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so focused inward. So

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I just happy to be able

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to focus on other people instead of on my

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stuff. Welcome back to another episode,

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Open Heart Surgery with Boots. I am your host, Boots

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Knighton, and I am bringing back

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guests that are thriving since open heart

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surgery. And I'm welcoming back today Lisa

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Mayan, who is from a small town

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in New England. Lisa, thank you so, so much for coming back on

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the podcast. You were one of my first guests

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and your story has resonated with so

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many people. And I am so excited for you to

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provide an update today on how well you're doing.

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Thanks so much for having me back. And give

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us the 50,000 foot view

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again of your diagnosis. Okay,

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so at 56 years old, I was

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diagnosed with hypertrophic cardiomyopathy.

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It took me three, four years to get

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a proper diagnosis because it wasn't an obvious case.

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As a female patient seeking

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help from cardiologists, I was dismissed,

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told that I needed to calm down

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and take tums, which is maybe why

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my heart was bothering me. After I

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ate and then exercised all of this. So it was, it was

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quite a journey to get there. I ended up having a

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myctomy at New York University, NYU

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Langone. And it has absolutely

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changed my life for better. I do feel

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20 years younger still. And I really

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feel that I continue to improve two and a half

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years after the surgery, which is a surprise to me because I

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think I'm doing so great. And then all of a sudden, I realize I'm doing

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even better than I was six months ago or a year ago. That's

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incredible. And I am so happy for you. I

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mean, everyone has their own journey. And I

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just want to emphasize that to listeners, like, if you

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aren't feeling 20 years younger, if your journey has been more

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difficult. I'm sorry, I hear you. I see you.

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And we have to let go of expectations of how

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we wish things would go for ourselves. But I'm

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so happy to you, Lisa, that you've been willing to share your story

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because it does give all of us hope. And for me, like, my

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journey has been, I think, a little more difficult than yours. And what

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your story has emphasized to

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me is just don't stop fighting

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for my health. Keep, you know, keep the

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hope up, keep striving, keep the faith that

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the body can heal, it will heal, and that

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we all deserve to feel well and thrive.

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Absolutely. So now here we are, you know, many

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months after our first recording. How have things changed for you?

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You said you continue to physically improve, so what does

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that look like? And then I want to get into the spiritual mental

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health part too. So I

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notice I'm back to playing tennis four times a week.

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And I hike. And I do have some limitations

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from my doctors. They don't want me to hike mountains

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and have my heart rate raised for, you know, three, four hours at a time.

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They don't want me train for any marathons. It's all fine because I don't like

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that stuff anyway. But I do go for four or five

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mile walks without a problem with my friends in the hills.

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I don't do the straight up mountains, but the improvement

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looks like that. Now, I notice sometimes my friends will say

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to me, can you slow down? Whereas I was always saying to them, can you

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slow down for me? And I don't even realize that I'm walking

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so fast. I. And I'm not trying to do it. I just

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have the energy for it. And that always

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surprises me when that happens. Yesterday I played tennis with someone who

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had been injured and played with her in a year. And she said, I

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can't believe you what you're getting to. And she said, I remember seeing

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you like really out of breath, just like running four steps for a ball.

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And now she's like, you just keep going. And I guess it's other

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people commenting like that as well. Makes me realize,

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yeah, you know, I think I am even better than I was

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a year ago. So this is two and a half years post surgery for me

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now. And certainly it was. I'm. I'm not being a polyethylene. And it

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wasn't like the easiest road and it wasn't

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just a miracle. After day one out of the sur. Out of

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surgery, my story with you talked more in depth

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about how hard that was. But since the recovery,

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which really probably was three months,

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I. It was steady improvement. And I, I'm

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so grateful that to my surgeons and my team and

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that I had such a good outcome and feels super

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fortunate. You know, I'm not a very emotional person

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and this one's getting me. Oh, thank you.

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It's really incredible. It really is. It

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does feel like a miracle. It really does. Yeah. I'm just

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picturing you playing tennis and your friends are

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in awe. And that just highlights the benefit of community,

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that our friends can be our witnesses and remind us that

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we are strong and that we can overcome,

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like, the hardest of challenges. Absolutely. And I do

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remember how dismissed you felt. And yeah, this is

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just like the ultimate redemption. Yes.

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Like, yeah, look at me. I'm now playing tennis four days a week, huh?

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Yeah, exactly.

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Yeah. So where are you now on like the

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mental, emotional, spiritual path of this

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post? My. So

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I feel like I'm doing extremely well. It's. There are

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days. There are a couple of times that I got out of

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breath, like walking down the street, New York City. Once that New York is

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obviously flat. And I got out of breath and for no

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reason, which was one of the symptoms that had had before the

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surgery. And I pretty much had a panic attack.

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I called my doctor. I'm like, oh, my God, it's back.

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Like, what is this? Why is this happening?

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And I think it was just a fluke because it didn't happen again

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and you know, it. They. They just told me to keep an

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eye on and if it keeps happening to see me. But it

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didn't. But I. I realized, like, kind of I'm always close to

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the edge of being scared again. I don't think I'm

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over. Apparently really doesn't come back from the

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surgery, but you could have some symptoms

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still. And anyhow, I. I guess

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I realize it's. It's not gone. Like, even though I'm

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feeling so great and I'm so grateful and thankful every

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day, you know, it doesn't take much to put me back in the.

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Holy crap, this. You know, what. What's happening to me.

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Yeah, I. I have found that too. If I get. I'm not as

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reactive now, but still when there's a palpitation

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or. Yeah, I'm just not quite like, fully rested and my heart's

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still kind of like a question mark for the day. I too

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kind of go, oh, gosh. Oh, gosh, what's happening, Mom?

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And like. Yep. And just. I think it was just

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yesterday I thought to myself, oh, wow,

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I haven't been to the ER in almost a year.

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Fancy. Yeah.

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Like, that's kind of. Like, that's amazing. And that's also kind of

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sad.

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Exactly. How about the, like, the emotional

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spiritual parts? I. I really

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feel that I'm living in a space of

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gratitude now, you know, for the friends and

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my family, my husband, my children who got me through it

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and it's not something I think about every day anymore. And that

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is so freeing. I mean, I used to. And as many heart patients

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do. You focus on your heart all the time. It's like you were thinking

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about what it's doing all the time and the sensations you're

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having and is it a good day and a bad day or bad minute or.

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And it's just so freeing to

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be not so focused inward.

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So I just happy to

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be able to focus on other people instead

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of on my stuff. Gosh, I resonate with that.

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And you're right. It. It just becomes like, you know, your head

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is down and, like, for so many different reasons. Right. You're just trying

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to get through it. You've been given this diagnosis. Now you

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gotta do something to basically save your life. And

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you're just looking inward, mind, body, spirit,

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trying to get through this thing and navigate the medical system.

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Yeah. And everything else just kind of falls away. It's true.

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And you can't. It's. It's not even possible to talk

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yourself out of that space and tell yourself, oh, it's going to be

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okay. When you know your heart is palpitating all the time or

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racing or whatever, or the chest pains or whatever your symptoms

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are. It's just. It's life or death. And it's really hard

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to. It's, I think, probably impossible, at least it was for me to

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come to get myself out of that until I'm Got through

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this, that really tough time and was relieved of the symptoms.

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Reality. Right. And I just want to normalize that.

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For those that are coming after you and myself, it's. It's

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okay that it takes over your life. It needs to. It's your

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heart. Yeah. And do what you have to do

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to get to the other side. Become the CEO of your

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healthcare. Ask for help. Come to Lisa. And

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I listen to other episodes. Be part

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of the Patreon community here. There's support groups on Facebook,

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like, don't be shy about taking up space in the

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world, in the heart world, and ask for what you need

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and trust that your family and

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your community will be there when it's time for you

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to lift your head up again. I have one more question for you.

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Speaking of community, did your community

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shift? Like, did you notice that, like, some friends

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fell away, some came in 100%?

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That happened to you as well? Yeah. Oh, yeah. It's.

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It's. I'm. I'm still taking

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note. It's been like this slow process, you

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know, It's. It's Just really interesting. And that's

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been an emotional, spiritual journey for sure. Yes.

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Trusting that like, people are in your life at all the right times

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and like letting go of needing to like white knuckle

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our relationships and being grateful for those who can

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be present in that moment of hardship and then

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lovingly letting them go if they need to, like move on because it's too

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much. For them or weren't able

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to understand what. Not, not that they weren't

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able to understand what we're going through because kind of nobody can, but to not

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attempt. I had a friend that I lost

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and I couldn't really

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get past. And I think she was

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disappointed that I was disappointed and think about that

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friendship sometimes. And that makes me sad, but also okay

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because you're also grateful for the friends

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and community that were there for you. And some people

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were a surprise. Some people were like, wow, you know, I didn't know

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how much you cared. And it's, it's like a lovely little

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gift you get. It sounds weird, but you don't get to

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hear how much people love you in your

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life all at once. And when you're going into open heart surgery, I

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guess you're afraid and people are afraid for you and so they

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express it. And it almost felt like most people have to

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die to get this kind of thing where, you know, everyone

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gets up and speaks about or tells stories about how much they

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love you, care for you. And that was like a

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very surprising and unbelievable gift that my

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friends and obviously family who love you, but that they, that I was

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able to experience that and hear from them, how they felt about me

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and could say how much I, that meant to me and how

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much I love them as well. And I don't know,

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that was, that was quite a surprising little nugget of

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goodness that came out of this. That's a beautiful place to end it

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on. Love and gratitude and appreciating those

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in our life. Yeah, absolutely. It's impossible to go through this

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alone. Nobody should try. And you need, you need

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people to love and support you and is the

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world and just encourage everybody to

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welcome whatever people are willing to give them. I love

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that being willing to welcome it in. Well, be

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sure to go back and listen to Lisa's story. I will put it

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in the show notes. It's an incredible story and

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as you've heard today, Lisa is absolutely

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thriving, kicking butt on the tennis court and

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walking and still feeling 20 years younger plus

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some and getting better with every passing day. Lisa, thanks

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again for your generosity and coming back on the program

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to give all of us more to have hope in and find

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faith in. You are a beautiful soul and New

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England is lucky to have you. Oh, thank you so much. Thank you. And thanks

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for all you're doing for everyone in this community space. Yes.

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And please come back next week for another

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Hope for the Holidays story. And if you

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haven't yet, you know I have a big favor to ask you listeners.

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Please leave a review. Please follow this show.

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It is amazing how much reviews make a difference

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with the heart patients finding me on Apple and Spotify.

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And if you can think of someone in your life today that needs to

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hear this story, share it with them. I would really appreciate

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this. We are a Spirit Small podcast and don't have a huge

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budget so I need all the help I can get from fellow heart buddies

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to help this show continue to grow around the globe. So

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thanks again. Be sure to come back next week and remember, I love

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you, you matter and your heart is your best friend.

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