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Boots Knighton: [00:00:00] Hello, welcome to another episode of The Heart Chamber. I am your host, boots Knighton. On the program today I have Lisa Mayan. Lisa is 57 years old from New England and underwent a myectomy at NYU Langone. She is an incredible heart warrior with a cautionary tale to tell. I hope you'll join me for the whole episode today, and I'd also like to thank you for tuning in.

If you are able, I'd appreciate you making a donation to keep this podcast on the air. You can go to the heart chamber podcast.com and click the donate link. Also, if you have a story you wanna share on the heart chamber, I'd love to hear from. You can either drop me an email boots at the heart chamber podcast.com, or you can [00:01:00] go to the contact link on my website.

Let's get to it.

Lisa, thank you for coming on to the heart chamber today, and you reached out to me. You feel like it's so important to share your story, and I'm so honored that you wanted to take a little bit of your time to come on to the podcast to share with listeners.

So let's just dive into your story.

So yeah, where, where shall we begin?

Lisa Mihan: well, I'm 57 years old. I would say probably 15 years ago I started having some strange symptoms. I live in a small New England town and, uh, I do a lot of outdoorsy activities, hiking, tennis, you know, just skiing. and I started to notice on and off, like being out of breath, for not doing very much, sometimes just [00:02:00] even walking to my car.

And other times I could go on a hike in the mountains and have no problems whatsoever. And this. Went on for many years and I would get heart palpitations and sometimes some chest pain, but nothing alarming enough to call an ambulance was like, Ugh, you know, just doesn't feel something doesn't feel right.

but then I would stop walking or stop skiing, kind of catch my breath and then go on and it would sort of go away. And this went on on and off, as I said, for years. And, one time I was walking, this is just like five years ago, I would say. I was walking up the base basement steps carrying laundry basket, and my husband noticed I was out of breath and he said, are you out of breath?

I was like, oh my god. Yeah, I think I am. That's so weird. You know, I'm a healthy person, I'm active. I thought, oh gosh, I gotta, you know, get this checked out. Um, and my heart was palpitating a lot, but [00:03:00] you know, it has been like that for so long it's sort of felt normal. and it was insidious and it was slow moving, so I didn't wanna deal with it.

So a lot of times I just put it out of my mind, actively, like, oh no, you know, I'm too busy, I'm too tired, I'm not, I'm not gonna think about this right now. And then it would go away for months. So I was able to forget about it and then it would come back. So, you know, went to my GP and, I ended up at a cardiologist's office.

and my, my GP wanted to know more. I have, you know, they did the E K G and my heartbeat is strange, but the GP said to me, that everybody's heartbeat is, it's like a fingerprint and everybody's is different and yours is quite different, but doesn't look alarming to me, but sent me onto a cardiologist.

and I went to a female cardiologist because I had heard so much and read so much about. You know, cardiologist dismissing women's symptoms. I thought if I had went to a female that I, that [00:04:00] would be less likely to happen. so I went to her and she did the echo in the EKG and all of that, and stress test and said, basically, there's nothing wrong with you.

I said, well, what about these palpitations? And what about, you know, getting out of breath? And she said, I think you have exercise-induced asthma. And gave me, you know, prescription for inhalers, which actually made me feel much worse when I took them and made my heart palpitate. And turns out, in retrospect, that was actually dangerous

but didn't know that at the time. And she said to me, it can't be your heart because if you have blockages, They're always there. So your symptoms wouldn't be intermittent. So since you have intermittent symptoms, it can't be your heart. Okay. So, and she said, I think you're too stressed out and I think that you really need to relax know, maybe you should think about what's going on in your life.

And I tried to explain that, [00:05:00] you know, things were good and I wasn't particularly stressed out, but she's like, no, I think that, your palpitations are from stress. So, know, left there kind of, you kind of, I kind of heard what I wanted to hear, which is that there was nothing wrong, continued to live my life, but then in the last. So I guess about two years ago, things got bad very fast all of a sudden. So over these years, I would sort of hide it from myself. Even. I would go for a walk in a town with my friends, nothing strenuous, and I would have to stop, but I would pretend to look in a window or I would look at the view, stop and look at the view or take a photograph.

And it was, I was embarrassed. I was embarrassed that I couldn't keep with them even though I'm in good shape or felt like I am in good shape. And, I actually realize in retrospect, I was hiding it from myself as well, like how poorly I was doing, and that I was really unable to physically keep up.

[00:06:00] so I hid that so well, even from my husband and friends that, that I walked with almost every day. They, they didn't. they didn't know. So, anyway, all of a sudden things started to go downhill quickly. And, my husband and I were in Savannah, Georgia, and we were walking a lot.

it's very flat there. And we were walking, you know, four or five miles, no problem. And then one day I couldn't walk really at all, and I was getting chest pains and I was walking like an 85 year old person with arthritis. I was walking so slowly because my, I was getting chest pain, but it wasn't alarming, it didn't feel like a heart attack, but I knew something was really, really wrong and I didn't wanna go to the hospital there.

And we were leaving in a couple of days. So, I stopped doing any walking and, and stayed flat and we drove, drove back home, I went to my GP who has an E K G in [00:07:00] his office I said, you know, I feel like something's wrong. He looked and he said, you know, this looks okay to me, but go, go home.

I'm gonna send it to a friend. So he sent it to a cardiologist friend. minutes later my phone rang and he said, Lisa, can you get to the emergency room? and he said, and I don't want you to go to the local hospital. I want you to go to the big hospital like 45 minutes away. And. I said, oh my God, my husband's not here, but he's coming back in 20 minutes.

And he said, well, if he's not back in 20 minutes, I want you to call 9 1 1. And he said, and I don't want you to walk up any stairs, or anything. And he said, and don't panic, ,

Boots Knighton: Yeah.

Right. .

Lisa Mihan: husband you, you panic. That was

not what I was

expecting. And, got home. We drove and this was during Covid.

so walk into the, the last thing you wanna do is walk into an emergency room during covid and, people everywhere. And it was, it was not a good time to be there. but in any case, they admitted, they because my troponin levels were raised. And they said to [00:08:00] me, you are probably having.

A small heart attack and you're gonna stay over tonight and tomorrow you're probably gonna get a stent. So I was like, oh, damn. Okay, . so stayed over, went in for the angiogram the next day, and they found nothing. They, there were no blockages. So this doctor who, the female doctor who had sort of told me it was what felt like my fault for being, nur too nervous, too uptight or whatever.

She came in and, and saw me. she said, I'm really surprised to see you here. I didn't think this was gonna happen to you. Anyway, to her credit later, once I was in the hospital, she didn't let me go. sh a lot of people like hearing stories about, um, you raised troponin levels, they can't find anything and you're gone.

They let you out the next day. But to her credit, she kept me in. And, I ended up doing every test known to man, including [00:09:00] the cardiac mri, which is where they found after three days. That was the last test, cuz they couldn't find anything up until then. which is where they found the hypertrophic cardiomyopathy, is in inherited, mostly inherited.

They said 97% chance that it's inherited. the most common form of inherited heart disease. so to her credit again, she ended up. , she said, I, I, this is sort of like beyond my scope and really have too many patients with this. So she sent me onto a heart muscle specialist who then sent me on to a specialty clinic and they had said, there're three in the us centers of Excellence and it's nyu, NYU Langone, Cleveland Clinic in Mayo Clinic.

And I had lived in New York 25 years and New York is my home. So, ended up going there in the end.

Boots Knighton: Wow. Wow. So you're, I'm just thinking about you in the hospital and you have been dealing with this for several years already, [00:10:00] three at the time, and they tell you all this, you end up, so once they do release you from the hospital say you need to go elsewhere,

Lisa Mihan: when they told

Boots Knighton: and

Lisa Mihan: interestingly, me the diagnosis, I didn't really know what it meant, but I sobbed because I was so happy to have a diagnosis and those years that I had myself. Beating myself up saying, to myself, like, you're just not as in, you're not in good shape. Like compared to your friends.

Like even though you do the same things every day as they do and you're active, you just must be in terrible shape. And, you know, all the stories that I told myself to explain why I had these problems or that, you know, I, things that I liked to, to do, which was like, eat early. Because when I ate later, it really bothered my heart.

I would sometimes have palpitations for four hours [00:11:00] if I went to bed full palpitations for four hours where you can't sleep and you try to sit up, you try to roll up, you can't, you can't, get comfortable and certainly you can't sleep. When I could actually see on my clothes, it was beating so hard.

so I used to get, I used to. Get made fun of, like lightheartedly by people in my life about wanting to eat at the, you know, blue-haired special at five o'clock in the afternoon when they wanted to go out at seven 30 or eight. And I never, I always thought that was just what I liked, but really there was a reason behind it and it felt really good to have a reason. so I was super relieved and then when I did some research on it, I knew I had a long road head trying to figure this out. as of now, it does not look genetic. and my parents don't seem to have it, knock wood. My children don't seem to have it. My brothers don't seem to have it, and I'm super grateful and I'm hoping I'm just in that 3% that there was just a fluke of birth and that's why I have it.

[00:12:00] so anyway, there's some, they call it H C m hypertrophic cardiomyopathy clinics at these, centers of Excellency three hospitals, and they have just specialists. You have to have the H C M diagnosis to see them. You can't just suspect you have it. So H C M is just, it's a thickening of the septum in your heart and it get it, your heart is working too hard, it beats too hard, and so it has trouble relaxing.

and so the, it inhibits the blood flow and the pressures in the heart are extreme and the pressures that build, because the heart's beating so hard, uh, end up sometimes distorting the shape of the heart. Distort the mitral valves. so like my having 56 years of this, my mitral valves were too stretched out to function and that's what was [00:13:00] causing all the symptoms. so the blood sort of gets stuck in the heart. And the, I just wanna go back for a second. The one really frustrating thing was when I ended up going to the Dr. Messara who, who NYU Langone, who I can't say enough about, like what an unbelievable doctor, clinician, detective person he is.

I can't say enough about him, and I'm so happy I

chose to go to N Y U Langone.

Boots Knighton: And how do you spell his last

Lisa Mihan: for the first M A S S E R A,

Boots Knighton: Okay. name

Lisa Mihan: is his first name with a e on the end.

does He's a young guy.

and this is all he is see H c M patients. But when I was sitting in his waiting room, there was a poster, you know, like in doctor's offices, they have the posters, it's a, you list of symptoms.

It was a list of all the symptoms that I was telling my cardiologist that I had. And there's a poster there. Like, if she had [00:14:00] had that poster in her office, I would've said, that's what I have. But really barely heard of it. So that was sort of surprising to me. I shouldn't say she ha didn't hear of it, because that's assuming something I don't know.

But she wasn't familiar with it. Just say, I don't wanna be unfair . but anyway, seeing that poster was like, ho. Wow. Like . I'm so surprised this took so long for anyone to figure out when it's just right there. so, anyway, went in to see him and they did. NYU has a special way that they do echoes for people who have H C M and it shows symptoms that regular echoes do not if you have them.

And so that showed up there, where it hadn't showed up on echoes that I had done elsewhere. So I had the obstructive kind of H C M, which 70% of H c m patients have. and in a way it's better to have [00:15:00] the obstructive kind because they can operate. if you have the non-obstructive kind, there's really nothing they can do.

I was sort of saying a prayer that I had the obstructive kind, even though that causes a lot of, you know, nasty symptoms and can kill you. It's all hypertrophic cardiomyopathy is also what it, when you're young in your twenties, it's that, issue that you hear about where a soccer, a 20 year old soccer player just drops dead on the field, or a football player, it's usually that.

And they, it was an undiagnosed heart condition. That's what it is.

Boots Knighton: Wow, that's intense. And I'm just thinking about, you know, every, every heart person I've spoken to, it's amazing how long it takes to get help. That, that just continues to be the theme throughout almost every single con conversation I've had.

Unless it is just so obvious and emergent

it sounds like this is can be hard to pin [00:16:00] down.

Lisa Mihan: Right,

Boots Knighton: really

Lisa Mihan: thickening was not, That extreme and, peop that people would see on an echo. doctor had said to me, there's a little thickening, but that's what happens with age, so don't worry about it. The, the first one that I had seen. And so, you know, if it's happening with age, what can you do?

It didn't really give it another thought again, but through their NYU's tests, they were able to see more. up So, I mean, they're really, just can't say enough. I can't say enough, and they don't come in the conversation. Hypertrophic cardiomyopathy that I've seen that much. It's more Mayo Clinic, Cleveland Clinic. But I am so grateful. I ended up at NYU Lango, like, I, I just, I feel like they saved my, I know they saved my life because I would've been home bound by now.

I would have. Not been able to across the driveway without getting outta breath, [00:17:00] having to stop. it was getting just everyday living was getting too difficult to do. and you know, not, I'm not elderly and I'm in shape, and it's like was a shock that this was happening to me. was just so grateful that there was something they could do about it.

They start, and nyu, they started me on drugs. that sort of like the first line of defense to see if, works and the drugs are, are aimed at reducing the intensity of

the heartbeat. And,

Boots Knighton: Do you remember what those medications

Lisa Mihan: it they, yeah. nor pace, E but then the side effects were really terrible. And so then they give you other drugs to counteract the side effects, and then those have side effects.

And it was, it was kind of awful. I did feel like it helped me a little bit. it helped the palpitations, but they were able to an echo three months later, or six, I can't remember actually if it was three months or six months [00:18:00] later. and they did testing and they could see that the drugs weren't doing enough, that they weren't really working at all.

I thought they were working a little, but they said they're not working at all. And so at that point they said the only thing to do is a myectomy, which is the open heart surgery, where they shave the septum down, they shave the muscle that's overgrown Usually have to fix valves at the same time. So did a mitral valve clip

on me and,

Boots Knighton: And what does

that mean? Mitra valve

clip.

Lisa Mihan: so they have to shorten and

properly.

Again, the fact that it was too long and floppy, it was sort of stopping the blood from leaving the heart properly. And, so I'm so grateful. My surgeon's name is Dr. Swistel. it's s w i s t E L. And I can't say enough, [00:19:00] and there was a chance, you know, small chance that I could lose my valve and end up with either a, you know, tissue valve or a mechanical valve.

We had that conversation. He said, I think. think I can save your valve. I think, you know, and he did. And I'm so eternally for that. And, he's so skilled and I just rave, rave about my care there and the doctors and, you know, people always laugh about heart surgeons sinking their gods, but I actually think he is one

So, I mean, he saved my life. And, I'm just beyond now I feel 20 younger than I did two years ago. And I can do anything. you know, they don't want you to, to become a marathon runner. They don't want you to. Physical training, that's super intense. No triathlons, but I didn't like that anyway, so it's fine.

But I can do everything I wanted to do before too and [00:20:00] I can ski and play tennis and hike, and I don't, I still don't like very long vertical hikes. I, much but just listen to my body and

okay.

Boots Knighton: That is incredible. Walk me through the timeline. So they did the echocardiogram to see if the medications were working, they weren't, can you, can you walk us through that timeline then of like to surgery, scheduling it, and then also long were in the hospital and what your rehab how then was like

Lisa Mihan: there was nothing to do, but the myectomy, you know, that's a lot to take in. He said, you gotta go home. Think about it. He al he said, look, this is not cancer surgery. He said, when you have cancer, you have to have surgery or you're gonna die. He said, you aren't gonna die from this anytime soon.

He said, but your quality of life will continue to basically go down the toilet.

He didn't say that, but that's what

Boots Knighton: which makes you [00:21:00] feel like you want to die. Right? Because if you can't breathe

you function, it's like, why bother a living? I've been there. I understand

and can't Mm-hmm.

Lisa Mihan: you can't do the things you love to do, let alone

it started to get so bad.

Like I said, it like walking to the car got difficult. So I didn't wanna hold my husband back, my friends, my kids, like I, I didn't wanna be. unable to live a normal life, even a restricted normal life, I would've accepted. But this was not, this was beyond restricted. So anyway, it sort of felt like a non-choice.

luckily I had good health insurance, so I didn't have to worry about that. and I think it took me about two days to decide. Yeah, I I, I have no choice. And you know, the funny thing is I never cried about it. I never got in bed and felt depressed or cried about it. I was just like, okay, this is, I [00:22:00] entering the medical system.

I'm just gonna be the leaf in the stream. I'm gonna let them take me. These guys are the specialists and it's gonna take me where I need to go. And, really put my trust in them. and it, it worked well for me. and I was super thrilled about that. So it took, I don't know, about two and a half months to get scheduled.

could have done it earlier, but it was around the holidays and wanted to get through the holidays and then do it. so, so it could have been sooner, but needed to wrap my head around it and kind of get ready. I don't know if you felt that same kind of

thing,

Boots Knighton: You know, I, I

can speak to that real quick. In hindsight, I'm really glad I had as much time as I did, which was about, oh gosh, hold on. I gotta do some quick calculus here. It was four months. Once my heart surgery was scheduled, I had to wait four [00:23:00] months

Lisa Mihan: No I

Boots Knighton: my crazy story. Which listeners, if

heard my story, go back

to episode one Cause Yeah,

I know you did, but our listeners, um,

it's cray cray cuz I too

had to deal during Covid. So it took a while and at the time I was not okay with waiting. But what it did like to use your words, it helped me wrap my head around things cuz I went from being an athlete to not really fast. And I think having that piece of, well it's a practice really of radical acceptance every day. Like having to be in a beginner's mind every day of all of a sudden, I am not okay.

I am not who I thought I was in my heart, like physical heart and.

I had to do a lot of work with my therapist to mentally prep for heart surgery, and I think that was why I came out of it. So, well

Lisa Mihan: ahead

Boots Knighton: [00:24:00] Well, I was just gonna say, unless it's emergent, like, I think it is prudent to wait because you're, you gotta calm your, your nervous system down because if you go in with a jacked nervous system that can throw all kinds of things outta whack and there, there really is this phrase I've been hearing from a variety of friends lately from just for various reasons, but it's

you have to go slow to go fast.

Lisa Mihan: that's It's true. I, I, I did find that weight difficult because it's always sort of hanging

over your head. I know. I'm sure you

Boots Knighton: Oh, it sucked.

Lisa Mihan: Um, sometimes you're like

having

fun with your friends and then

you go to bed that night and like, oh my God, in, in three weeks

scary thing.

but I, like I said, I, I never cried about it, which I'm surprised about because it's a big deal. [00:25:00] And, I w I would've cried had they not been able to do anything, but because, If they could do something, I just wanted it done really. I wanted to feel better. and I was willing to climb that mountain to do it.

And I'm so grateful that I was brave enough to do it, really. so I, I'm a, I hate needles, . I'm scared of pain. Like that question, you know, what, what are you most afraid of in life? you know, other than the obvious losing people you love and things like that. What, what are you most afraid of in life?

And my answer was always pain and, physical pain. And, that I had to do this as kind of ironic , but I feel like a much stronger person. And now I never thought of myself as brave before, but now I think of myself as brave.

Boots Knighton: brave. , Mm-hmm. ,very brave. So how long were you in the hospital for?

us through that part.

Lisa Mihan: of So it was [00:26:00] during

Boots Knighton: Walk

Lisa Mihan: my, best laid plans

spending the holidays with my kids and who are grown up, know, kids and family and brothers and husband and all, that was a terrible idea because I couldn't get sick. I couldn't, know, as you, you, if they told me if I lost my date, if I got Covid, that they couldn't see me till April and I just couldn't.

Wait, another things were go getting really bad, as I said, and I like emotionally would not have been able to wait, or I would've if I had to, but I really didn't want to. And so anyway, I end after Thanksgiving, I shut it all down. not knowing that was gonna happen, I didn't plan it very well, but I started to get worried about seeing people because I just didn't, I couldn't be sick.

And, you know, that was sort of like the omicron was coming out and everybody was getting sick right around right before Christmas of that year. so, I had to be [00:27:00] super careful and in retrospect, maybe going before Christmas might have been a better idea, but doesn't. It, it didn't matter in the end. so, nyu, you know, you go in that day they were, they were amazing.

Nurses were amazing. I had a hard time they wanted me to walk into the operating room. I don't know if you had that. I, I felt that was, was like somehow bothering me. What wa I, said it, people do better who walk in on their own instead of going in a wheelchair. And I don't know, it just felt really weird to walk into the, or, but I, I did it and, um they they offered me a wheelchair and then, uh, it came and I was like, oh, this is stupid.

So , I just walked in and it's so weird to climb up on that very cold table and they're like,

what, 20 people in there

Boots Knighton: and isn't the table. The table is very narrow.

I

Lisa Mihan: it is

narrow.

Boots Knighton: remember that [00:28:00] very

well. I'm there just enough space for Yeah. I'm like, what do bigger people

Lisa Mihan: I think it's

Boots Knighton: like is me on Yeah. Yeah. Like it was the size of

a postage stamp, but Okay.

Lisa Mihan: by that as and I don't know. Maybe well, how cold it was in there and how many

people were in there. And,

Boots Knighton: did you read your operating report?

Lisa Mihan: n no, my husband I had a hard time with those reports because they were coming in before I could speak to the doctors.

This is not, I was not reading anything when I was in the hospital. But afterwards, when all the test results come through that portal and every single page said, heart failure, heart failure, heart fail. And I thought like, oh my God. Like, I thought I was better. It sounds like I'm dying. that it scared me so much.

Every time I read it, I just stopped reading it. And, [00:29:00] uh, I waited to into the doctor and it's, it, that's not me. I'm not, normally like that. I like to be in control of the information, but it was just, alarming what I was reading I didn't know how to put it in context and how to interpret it.

So I stopped reading those, but I did not read my report. kind

of don't want to.

Boots Knighton: Yeah, it's not for the faint of heart. Pun pun. Totally Intended. it really is not for the faint of heart. And because I am such a curious mind, I couldn't help myself. and I will only share one thing cause I don't wanna traumatize you or the listeners just to speak to the cold room that is so intentional.

And they chilled my body down to like, I think 93 or 92 degrees and. I don't know all the reasons behind that. That's for [00:30:00] our future podcast. I plan on interviewing healthcare providers, but they, and then I went and then I underwent a rewarming, which you likely did too. And so, yeah, they keep all the room so cold.

The heart cath lab is so cold and then Yeah, the OR is so cold and it's all for very specific reasons. So,

but I very, I very much remember how cold the OR was that narrow

Lisa Mihan: Yeah.

Boots Knighton: in postage

Lisa Mihan: any of that Right

So that's, that's the good news for anyone listening

is you're

Boots Knighton: you put on a heart lung machine?

Lisa Mihan: yes. Yeah. and I know it three and a half hour operation they had to, cut the septum of the heart, so in the center of the heart.

So they go through the opening that the valve is in, and I know it's done blind. I believe it's done blind, that they sort of feel their way. which is kind of amazing. I'm, [00:31:00] I'm not exactly sure how that works or if I'm even correct in that. but I heard that at some point and it stuck in my head. the recovery, was pretty straightforward.

I was in six days. I did have, they wanted to let me out on day four, but I got AFib. And because with the myectomy they cut, when they're shaving the center of your heart, they often cut into, they can't see where your impulses, the nerves are. And some people are closer to the surface, some are deeper.

And oftentimes they will cut into that. And so the right side of the heart takes over. And sometimes people need pacemakers. Luckily I did not. but so they cut into the electrical system and the heart starts freaking out and it's usually on day three that you get post-op AFib and they give you all kinds of really scary medication to [00:32:00] stop that.

And so they had to keep me for three days cuz you can, you know how you hear your heart monitor when you're in there, right? And it starts going, it builds up, builds up, it's going beep, beep, beep, beep. And it's getting faster and faster. And more and more people are like running in to the room. And that was not fun.

And that was actually really hard for me emotionally because I had read that myectomy patients feel. Right away that the what, you know, the, the now that everything fits properly, their heart beats better and that they feel better right away. Well, I did not feel better right away. And then I started having AFib, which is really and scary.

And I thought, what the hell did I do to myself? Like, oh my God, is, this is not what I signed up for. I, apparently Dr. Masser told me about it, but I just didn't remember that that was a possibility. And I had to stay on drugs for a couple of months after the surgery to keep that at bay. [00:33:00] And luckily things have been good since then.

But it can be sort of a side effect of this that people can, might have to deal with AFib and especially post-op. So, um so six days I went home. I thought that first week was the scariest week of my life being home. I don't know if you felt that as well. You feel so exhausted. you lose a lot of blood.

apparently I would've been eligible for a transfusion, but it was during covid and they didn't, they didn't have enough blood that the threshold of getting the blood was higher and I didn't meet that next threshold. I had lost a lot of blood. And I think that contributed to the weakness and exhaustion, like just stand taking a shower, which you really wanna do.

After being in the hospital for six days. Um, my legs were shaking so badly that I could barely stand there to take the shower. I was so weak. And, your heart, you know, I'm having the AFib and the [00:34:00] incision and the. , you know, sternum and everything hurts and it, you're just afraid. I found myself to be really scared.

in that first week. I did not want to go back to the hospital. I was like, my goal was not to go back there, no more IVs, please. And you know, I did not end up going back, but that first week was scary And the second week slightly better. every week is slightly better. It feels super slow when you're going through it.

Like cuz every day's the same. I didn't have the, uh, bandwidth to read. I couldn't even read a newspaper. I was so tired. like mentally, I, my husband told friends and family, please don't text her. cuz I was feeling stressed that I wasn't answering people. I couldn't, I just, All I wanted to do was kind of sit there and the only thing I could, and I couldn't watch any TV that had a plot, I couldn't really follow it.

not enough energy to be interested. so I'd watch like the great British bakeoff and, you know, shows that were super [00:35:00] easy and you didn't have exert any energy to follow. by week three I was walking a mile. I had to break it into two parts. Um, I was, my heart hurt after the mile and I called them and I said, you know, I can do it cuz I said they wanted me to be doing this, I can walk the mo.

It was January, so it was cold outside, which wasn't ideal. and they suggested instead of doing it all at once, that I do half in the morning and then half in the afternoon. And, and that really helped me a lot. and every day I tried to do a little more, bought an Apple watch, really tracked how far I was going, tracked my heart rate, stuff like that.

I did not find the sternotomy that bad. ne had never had a broken bone in my life, so I was really worried about that. you know, it hurts, certainly hurts, but I didn't think that was that bad, surprisingly. and unlike [00:36:00] you, I have not had trouble with my sternal wires, so I'm grateful for that.

I'm a petite person too. And somehow , I escaped. I think I would know by now. It's, it's been like a

year and a quarter since.

Boots Knighton: Yeah. I think you're good by now. I

Lisa Mihan: Yeah

Boots Knighton: mend

Lisa Mihan: I that

Boots Knighton: big

Lisa Mihan: When you said that I

was so surprised you said

because you would think you could feel

like on your skin, but you really can't.

Incredible.

Boots Knighton: I I won the medical lottery,

Lisa Mihan: And that they could, that

they missed a piece.

Boots Knighton: Yeah said, I won

can Wow.

Lisa Mihan: I don't understand how they put

Boots Knighton: the lottery

Lisa Mihan: and didn't notice a piece was missing,

but you noticed a piece was

Boots Knighton: That was a hard moment.

Lisa Mihan: I cannot, I just, I can't even imagine how stunned

and, and how they missed

Boots Knighton: [00:37:00] Mm-hmm. . Mm-hmm. . Yeah. Uh, like I said, I, this has been my greatest teacher, this whole experience. yeah. But back to you, so you were, you were breaking the mile up into two. When

a

mile together and feel oh man, I'm, I'm

gonna

Lisa Mihan: a

Boots Knighton: like be

Lisa Mihan: so I I by week three, so that seems like three week three, and it's only a week later. It sounds kind of ridiculous in saying it now, but it's monumental in the time. And the difference between how you, uh, how I felt at week two and week four was I started to, as you said, think, oh my gosh, I think I'm actually might okay, and I, this might, I might be feeling better.

Um my heart really hurt, uh, and I had some pericarditis after the operation, just like swelling, heart swelling from everything that they did. [00:38:00] and that was way worse for me than the sternotomy and the rest of it. so, and that it was a scare. That was scary too, cuz I just wanted to stop thinking about my heart for a change.

I've been thinking about it for, two and a half years at that point, like every day, all the time. It's like, please leave me alone. I just want to have a day where I don't think about my heart. It's a, it's not that fun to be obsessed with your heart.

Boots Knighton: No, and I say to people when they ask like, what is this like? And I say, well, do you think about your spleen? and they just, people look at me funny and like, well no. And as most of us think about our stomachs, cuz it lets us know when it's empty. Right. And we need to eat. But most of the time that's the only organ we really consider.

Oh. That in our bladder and our intestines cuz we have to empty those. So, but the rest we just take them for granted cuz they just quietly do their jobs and we hopefully take good care of our bodies so that we're taking good care of all the organs. Right.[00:39:00] And so it is, I hear you like it is such a privilege when I have a day I to think about

heart.

don't have

Lisa Mihan: to be in the place where you don't have to think about it or it's not making you think about it. it's just such a bad place to be, to be so internal like that, I think emotionally and for everyone around you. And because you can't be present in,

know, the rest of your life when you're thinking, is this like the end? Is this the last breath? Is this, is my heart gonna actually explode? Cuz it feels like it might. so it's, it's such a gift. And even now a little more than a year later some days I'll get in bed at night and sort of almost like automatically expect my heart's gonna palpitate and I lie there and I think, oh my God, you know, I don't, it, it, that's over.

I [00:40:00] almost still

can't believe it.

Boots Knighton: So how do you.

Lisa Mihan: HCM is not cured.

It's

not, it, it, you have it forever. It's the way the cells

from birth and you can't fix that. But what's fixed is the problem, the, the obstruction that was causing all the most of the symptoms. You have to be careful not to get dehydrated.

Cause I can get palpitations again, things like that. But that's easy. Right?

Just have to remind yourself.

Boots Knighton: question about that. Uh, so, okay, so if you can't get rid of

cause another, can it cause another obstruction the

the H C M does it

Lisa Mihan: which is why if someone has a heart attack and it kills off some muscle, they have a weaker heart this that. that. So heart, they, they said if I was really, if, if I had been 17 and having

there would been, there's a small possibility that over the course of one's life, it could grow back.

but,[00:41:00] not me. , I'm too old. So I, I actually have to take blood pressure medication. I don't have high blood pressure but they don't want my heart to work too hard because they don't want the valves to stretch out again. So, I just take, and luckily I have no side effects from it, and it's easy.

One pill a day fine. Doesn't bother me at all. So, well, very happy to do that. And to go from, I don't know, I had two, like those kid sandwich bags, you know, the paper bags for sandwiches when you're a kid. Two of those filled with medications before and then at the hospital. And at about three months I went off of everything except the blood pressure pill.

it was the most cathartic experience to put those in the two brown bags and the police station. you know, you take old medication to the police station and they, I think they burn it. And, to put those into that little red box and say goodbye and close that door, I, I was like,[00:42:00] I'll never forget that day.

It just felt so freeing and so good.

Boots Knighton: I just hear a, a sense of hope. Like I,

Lisa Mihan: right

Boots Knighton: gonna live. I'm, I'm okay. We're moving forward. It's all in the rear view mirror. So what is your life like now? Like, do you

to go NYU

yearly visits?

to

Lisa Mihan: it's yearly from the time

which was last April. So I'm going shortly. you know, so when you get out of from the surgery, had to have a two week visit. a month visit, and then at three months, and then after the three month visit, they do another echo and things look good.

They'll, you know, release you to come back every year. And that's what's next for me. I'm always a little nervous going in because before every time I went to them, I got worse and worse news snooze about my situation. so I know I'm gonna [00:43:00] be nervous, although I feel I know I feel, really good. and yeah, so supposedly go that, that's the plan is to go every year forever.

And they will take your kids into their care, um, at the hcm cl at with Dr. Ma. Sarah, even if they are not, they, they haven't been diagnosed, but because it's hereditary, they wanna sort of keep an eye on them. And that's incredible because don't have to go through, God forbid they have it. But if they do, they.

Can bypass all of the being told there's nothing wrong with you gaslighting, you know, experience that most other hard patients experience. So I'm grateful for that. They know what symptoms to look out for, things like that. yeah, so my life, like I said, I literally feel 20 years younger than I did.

I can do that, I mean, I play tennis three times a week. I cross-country ski, a downhill ski. I, I go for five [00:44:00] mile walks without any issues. Um, like I said, I still don't really like hot big, like what you were doing with the big hikes. I, I, it's too much. but it always has. it. So, I was a sprinter, in high school.

I was on the track team and I was a sprinter. I could not, I used to hide in the bushes for the long distance runs and I always thought that I just hated those. But there was a reason I hated them.

I just didn't

Boots Knighton: Mm-hmm. . Wow. Such a, incredible story of tenacity and wisdom, and hope and healing. Any parting words of advice to fellow

Lisa Mihan: um

I would say if you are eligible for this surgery, I'm a proponent. even if I was, my results were half as good as they are, I would've said it was worth it. And it's [00:45:00] a really tough and it's also a, an emotional recovery, I read a little bit about when I was researching other people's experiences online, I, I read about other people's emotional struggles and thought, oh, it's not gonna happen to me.

Cuz luckily I have not had to suffer with depression in my life or anything like that. So I th and also this surgery was a choice that, it wasn't like one day I went in with chest pains and the next day I had a triple bypass that, that's jarring. This was planned and my choice. And I felt like, well, I'm gonna escape the emotional. Difficulties and it was a lot harder than I thought, I still am not entirely sure why it's so emotional and why it's so difficult. The only thing I thought of is it really, and I don't know if you [00:46:00] had this experience, that it feels like perhaps your soul lives in there, like near your heart, in your heart, and that they cutting in there and you know, poking and prodding and cutting, doing what they need to do.

And I feel like your soul, this is how I would describe it to my friends and family, is like a clam and it gets, it gets jostled and it closes up and it takes time and everybody's different. the clam to relax and open up again. for me, I would say it was about three weeks, which isn't too terrible.

but it was a hard three weeks I would say to expect if anybody's going to do this or thinking about doing this, that, that, to have as good a support network as you can. The only, I, I didn't really wanna see people. I had no energy to see people. you know, [00:47:00] my husband was amazing. Took unbelievable care of me. And you know, I knew people were right out outside, outside the me metaphorical door. and as soon as I was ready, they were gonna be there and my kids and all of that. So, was nice to know that everybody was there, even though I didn't have the energy to. See them or talk to them at the time. but I just say to expect a little, some that it to be hard and not just physically.

And I just, I still don't understand why it is like that, but I've not heard that

about other surgeries. Just this one

Boots Knighton: and every heart warrior I've spoken with reports the same. Not in your words. That's a new way of hearing it, which I so appreciate. My surgeon spoke to me the day before my surgery and said, you might get sad, and that he, it was often that he saw depression and they call it a cardiac depression. And [00:48:00] I, I wrote in my journal while I was still in the hospital that the depression had set in, but that's all I wrote.

It was on like day, I think it was day three. You, yeah, it was day three. I don't know. what was happening? I don't know why. Like I said, I didn't put any other details. and I went through an emotional rollercoaster as well, and it's enough in the rear view now that, I don't know if I could eloquently speak to it, but wanna, let's normalize it.

It's, it's a thing. And, and with the soul comment, I mean, yes. Like our, our hearts were literally handled, like human hands were on our hearts and how, and our, and our hearts went on a vacation because went on the heart and lung machine, right? So, you know, it got to go on a little vacation and, and I remember,[00:49:00] When I first got home from heart surgery, we had a, a dear friend, come stay with us.

And it was the most amazing act of love for her to come from another state and help for a week. And she's really intuitive and in tune with me. She's known me for like a million years and she said I was very disassociated. And I think that speaks to your clam analogy because I wonder if like during surgery when our hearts are.

Put on

AKA stopped because vacation sounds a lot nicer than stopped, But, I wonder if our soul just kind of disassociates from us a little bit and be like, okay, okay. What, where I was attached isn't exactly beating right now, so I'm just gonna kind of float over here

Lisa Mihan: Yeah

Boots Knighton: and, just kind of follow this body around until I can reintegrate.

Lisa Mihan: [00:50:00] Yeah. you feel like

Boots Knighton: feels true. I mean, it plausible.

Lisa Mihan: It does. Do

Boots Knighton: feels

Lisa Mihan: remember any of it?

Boots Knighton: thank God no . Like literally, thank God I didn't know .

Lisa Mihan: Yeah.

Boots Knighton: but I do remem I remember waking up

that was a real party. I, I woke up,

Lisa Mihan: up where

Boots Knighton: well, I woke up in I, no, I c u and,

Lisa Mihan: Oh, I

Boots Knighton: and intubated and that did not go well. That did go

Lisa Mihan: that

Boots Knighton: not

Lisa Mihan: they got it out before

I woke

Boots Knighton: Oh, you Lucky

Lisa Mihan: that I'm

so sorry you had to go through

Boots Knighton: Yes. I,

Lisa Mihan: that. probably still gives you

Boots Knighton: you know, I, it did for a while. It, it gave me day mares. Cause I would think about it during the day, and I would be like, what? [00:51:00] And. Luckily, we are all laughing about it pretty soon thereafter, but while I was still intubated, I immediately started having reactions to the anesthesia and I ended up getting violently ill, and I was so afraid I was gonna vomit with still intubated and then, you know, go into my lungs and they had me, they had my hands tied to the handrails of the bed.

And so I'm like this like intubated and I couldn't say anything and I knew I was gonna throw up. And so the only, and I'm laying down and I, the only thing I could think to do was give them the bird. Like I kept flipping both my middle fingers at my surgeon, my husband, the nurses, and they just thought I was really pissed because who wouldn't be in this situation?

and. But I hadn't, I just could not think of any other way to let them know I was about to like vomit. And I think I gave up, I gave them enough of trouble that they finally [00:52:00] were like, okay, we'll take it out. And the moment they took it out, it was like,

it just kept coming and I threw

up 25

Lisa Mihan: can't even

Boots Knighton: post sternotomy.

Lisa Mihan: a broken even imagine I

Oh

I, just can't

Boots Knighton: It was like, next

level.

Lisa Mihan: I can't

Boots Knighton: I can

still,

Lisa Mihan: that is next level. That's

Boots Knighton: what is imprinted on my mind still Lisa, is I can see the clock on the wall. of the I C U room and it's like three in the morning and I was just like, I just kind of knew when the next wave would hit me cuz I had been watching the clock and it was just almost on time.

I don't remember the timeframe frame now, but I that, just watching the clock and hearing that tick, just

So

Lisa Mihan: That super traumatizing

Boots Knighton: because it's how I still

cope. It, It, was bad, was [00:53:00] bad

Lisa Mihan: is

Boots Knighton: it it was bad.

Lisa Mihan: alone with.

Boots Knighton: Yeah, and I would like just kind of bend my neck enough so I could like, you know, vomit but not hurt my sternum. I, I got to, I got it down to like a where ,

where I could still vomit but not upset the sternum ,

like I science

Lisa Mihan: your stomach,

Boots Knighton: Well, right. But my body was still like, had to get it out, like all the anesthesia.

And I'm blonde and blue-eyed and very light skinned and I was told post-surgery, which would've been helpful to know pre-surgery that, blonde, blue-eyed people have a harder time with anesthesia. And I would've really appreciated that education. And there was, Think there were things they could have done for me prior to the surgery.

So those Dramamine, tabs that you can put behind your [00:54:00] ears, those stickers, they could have done that. So when I had my second and third surgery, they did that for me and it helped. and then they gave me, they could have given other medications with the anesthesia to keep the nausea at bay. So, and my second and third surgeries combined, the two of those combined only threw up once.

yeah, I was pretty disappointed at that. The anesthesiologist is, know, taking look at me would've known that anesthesia wasn't gonna go very

you one well

Lisa Mihan: couldn't sleep for a couple of days.

I just couldn't believe what you had been through.

Like

it's

Boots Knighton: to traumatize you.

Lisa Mihan: about other people's

No, no, no. It, it was, you know, it's in experiences and it, you know, everybody's as different and, yeah.

But yours is really

traumatic.

[00:55:00] specialist had spoken to

a friend of mine who's a trauma

and I felt like I could remember some of my surgery and maybe I was floating above my body. I don't know, I, it might be just some false memory.

I, I don't know how I could possibly remember some of it. my mind playing tricks on me or something. But, I called her about that and she said, look, I can't help you for two weeks that particular anesthesia is the most intense anesthesia human gets. it takes about two weeks.

Everybody's different, but it takes about can take up to two weeks to leave your body. And she said, you can't really treat somebody for any mental health stuff while they still have that stuff going on. And she said to me, , people cannot keep the two things in their mind at the same time, which is one is like a, a trauma, the thought of the trauma, whatever it [00:56:00] is, and gratitude.

And she said, think of something when you feel traumatized, of something you're grateful for, but it has to be related to the trauma. It can't be just like, I'm, you know, grateful for vanilla ice cream has to be something, related. And at the time I was in, so I was so sad, I couldn't really think of anything

And she said, well, was there a great doctor or a great nurse? And there was a, an amazing nurse named Julia who like, I'll never forget. And um, so she said, when you feel traumatized, think about Julia and think about what she did for you and how she made you feel. And you can't both of those things in your mind at the same time.

And helped me tremendously. And I still use it to this day if I ever think about something traumatizing or scary, and I, I use that, that skill and I think it's, or that mechanism, it just really a helpful

thing that she taught me.

Boots Knighton: Wow. That is a really [00:57:00] important

piece of advice for all of us, no matter where we are in our lives, even when we read the news.

I swear, it's like you gotta put on your, your thunder jacket. You know that dogs wear like a coat when you read the news, but, or when you read your medical reports, when you go to your, your medical portal, on your little thunder coat, think of something

that

even pay for healthcare.

Lisa Mihan: you're gonna read that And if you're gonna

Boots Knighton: you can

Lisa Mihan: it on a Friday afternoon.

We're gonna have to wait two days to ask those questions.

Boots Knighton: also good advice,

Lisa Mihan: Yeah, yeah.

No, Friday

Boots Knighton: Mm-hmm. .And if you're feeling anxious about it, like think about like, well how, what am I actually solving if I do choose to read this on a Friday afternoon? Like, how is that truly helping me? and maybe

helpful because maybe it's all[00:58:00]

you're like, oh, you're

Lisa Mihan: list

Boots Knighton: usually it would be

Lisa Mihan: know

Boots Knighton: good news

and

gonna

Lisa Mihan: no They all the

Boots Knighton: it's

Lisa Mihan: you read them. understand, unless we're trained medical people, the bit, the bits and pieces of it and not how it all works together. So it's very alarming. Just esp if you're having open heart surgery, you have a big problem,

Boots Knighton: it's just so easy these days to doom scroll and to quickly type in all your symptoms. And usually Mayo Clinic Clinic is gonna come up first because they are just like dominating the search engine optimization game. But it's, it's easy to yourself with all of horrible diseases that

Lisa Mihan: even

Boots Knighton: of your limbs to fall off and your eyeballs to

pop out. are

Lisa Mihan: can't use

Boots Knighton: Oh dear. Well, but it's like, there's, this fine [00:59:00] line of being curious where when you cross over it, you dysregulate yourself and all of those around you. And so I have really, for myself, I had to get, I had to build the wisdom up, the wisdom muscles to know when I could tolerate doing some research. and when I couldn't. And I think your advice of like not something on a Friday, especially in the afternoon, is so brilliant. Like you nailed that, but looking just check in with yourself on any day of the week and like, Hey, can my nervous system actually tolerate, know, me having whatever, like, it just that takes an extra level of wisdom and it, and takes a few more seconds of your day to be like, no, this isn't gonna serve me right now.

I can put off knowing I have, you know, leukemia or some heart issue for five more days. Cuz guess what? [01:00:00] You don't have to think about it until your next appointment. What a brilliant thing be in the present moment.

Lisa Mihan: cuz all of us who are either listening to this or, you know, going to be on in the future or going through this in the future, it, we have a lot to deal with. And it,

Boots Knighton: Mm-hmm

Lisa Mihan: Why add to your plate? It's, I'm not saying be ignorant about your situation, but think that the best thing to do is read it the day before the, the day you're gonna see your doctor.

Cuz then you can write your list of questions down. What does this mean? Why did it say this? And you know, I, I, I, that's how I do it because I just want to get myself

all worked up perhaps over

Boots Knighton: that's sage advice right there. Mm-hmm. .

Lisa Mihan: Thank you.

Boots Knighton: And, if you're all worked up going into your doctor's appointment, then you have a hard time listening cuz your nervous system is so overactivated. I just don't think we talk about the nervous system [01:01:00] enough in our society. and that is so key to healing well, right?

Like really thriving after a heart surgery. It's really getting in touch with yourself, getting reintegrated with your soul, opening that clam back up, as you were saying, right? And just really getting crystal clear on what your body is t trying to tell you. And you knew five years prior that your body was saying, Uhuh, something is not working right here.

And you kept pursuing. And I think that's, that's one of the biggest takeaways today is just keep when you know that

something isn't right,

you are the executive, you are the chief executive officer of your own body You are hiring a doctor.

Lisa Mihan: you

Boots Knighton: you are hiring. You are act paying for their services to help you find out what is wrong.

And if you don't feel like [01:02:00] you are with the right doctor or if you feel like they aren't listening or

need to go to a more specialized place, do it.

And that is okay.

you

Lisa Mihan: start them when they start telling you that either there's nothing wrong with you or that you're too anxious or you're crazy, or you're too stressed out, or whatever it is they're trying to tell you. In a way you wanna believe it because it means that there's nothing wrong. Everyone wants to heal, hear that, you know, whatever, you're actually fine. So you kind of wanna believe it. and then you, I think for women especially, you start to think like, gosh, maybe, maybe they're right. Maybe I am too stressed. Maybe it's, it's, I think you have to be very strict with not to let yourself get talked that narrative you do know something's wrong, right. [01:03:00] not it's, it's just, I feel like you have to be strict with yourself not beat yourself up. it's your fault and you aren't bringing this on yourself. And I feel like the recovery has been a lot about that. Not just physically, but about the forgiving yourself of these mistakes you made along the way, which was to say like, oh, okay, maybe I, maybe, maybe, uh, she's right.

Maybe, you know, and to, and to forgive the people who misdiagnose you as well. I, I feel like most of the time they're doing the best that they can and sometimes they're over their heads. And I just wish that they would say that instead of. say, I really don't know. I'm really sorry. I don't know.

I'm gonna push, you know, your, here, try this person in instead of saying, well, maybe you should calm

down.

Boots Knighton: Right. Well, why don't we leave it right there for today, Lisa, I appreciate your time. I appreciate your courage. It's a lot [01:04:00] to come onto a podcast and speak into the ether, but I know your story is gonna help a lot people and women especially.

you.

for your time today.

of

Lisa Mihan: thank you.

Boots Knighton: And that's our episode for today. Thank you so much for spending a little bit of your day with me. If you enjoyed this podcast, I sure would appreciate if you would go to my website, the heart chamber podcast.com, and make a donation. Also, if you are a fellow heart warrior, I'd love to hear from you.

Would you like to share your story on this podcast? You can either send me an email at boots the heart chamber podcast.com or you can go to my website and go to the contact link and leave me a message there. There's also a way to leave via voicemail on my website. I'm so glad you joined me for today.

Please [01:05:00] be sure to come back next Tuesday to the Heart Chamber Podcast for another inspiring episode.