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Exercise is good for you. This feels universally true. Turns out, it’s not. For Melissa Guarnaccia, running marathons in her 20s was a healthy outlet and stress release, until the day her heart stopped beating and she collapsed on her front steps. As it turns out, the activity she loved most was destroying her body and taking years off her life. Stephanie talks with Melissa about living with massive uncertainty, and how her condition forces life-or-death decisions for her and her family every day.

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Transcript

SPEAKERS

Stephanie Wittels Wachs, Melissa

Stephanie Wittels Wachs  00:00

I love book clubs. I love them. And so naturally I am really excited to be a part of Lemonada. Lemonada is officially working with Apple books to bring the best most Lemonada aligned audio book selections to our book club participants. As a podcast lover and post I am getting really into audiobooks myself, so this is sure to be a good time. For April, the Lemonada book clubs Book of the Month is a living remedy. A Memoir by Nicole Chung a living remedy explores the enduring strength of family bonds in the face of hardship and tragedy. Nicole first tested process the untimely death of her father a loss that was exacerbated by America’s failing health care system. And then her mother’s cancer diagnosis while COVID was ravaging the world. It examines what it takes to reconcile the distance between people and their lives. And it sheds much needed light on persistent inequalities in American society and in its health care system. Listen to Nicole’s book today on Apple books, you can find Nicole’s book and our other Lemonada book club April selections by heading to apple.co/Lemonada-book-club. This is truly just a chat about, like, you know, the inner workings of your heart and soul literally in this case.

Melissa  01:23

Yeah, literally.

Stephanie Wittels Wachs  01:26

Literally, because my guest today has a heart that doesn’t work the way most people’s hearts work. Melissa is currently living in Switzerland with her family and an extremely rare heart condition, one that was completely undiagnosable until it nearly killed her. And now this very important organ at the core of her being is pretty unstable, which as you can imagine, leads to a tremendous amount of uncertainty.

Melissa  01:56

I just don’t think like humans are built for, like long term uncertainty. I think we’re set up to like, establish, and like sit in our establishment, whatever that looks like for each person. I just couldn’t do it. I have nothing but uncertainty and shifting sand if you will, underneath my feet. And what do I do with that? Like, how do I envision a future if I don’t even know what next week looks like?

Stephanie Wittels Wachs  02:32

I gotta be honest, I fucking hate uncertainty. It is my mortal enemy. Whether I am spinning out about my kids, or my health or my kids health or where my company’s headed or how much time we have left on the planet. I mean, the what’s going to happens are inescapable. And I hate that. So I was really eager to sit down with Melissa to learn how someone who has to navigate far more uncertainty than I do. handles all of the unknowns. Spoiler alert. It is with the utmost grace, and humor and charm.

Melissa  03:12

Yeah, it’s like a really horrible joke. Like, it’s like somebody punking me. I mean, I don’t understand.

Stephanie Wittels Wachs  03:31

This is last day, a show about the moments that change us. I’m Stephanie whittles wax. And today, the story of a person who realized her greatest passion was the thing that nearly killed her. How do you keep going when the way you define yourself has to change overnight, or you could die. At the heart of Melissa’s story is a lesson for us all to see beyond the losses and look at the gains. So I got connected to Melissa through one of my fabulous colleagues, Lizzie and you know when you meet a friend of a friend, and they’ve just really hyped that person up for you. That’s how I felt going into my chat with Melissa. The two of them met in Minnesota where they both lived. But like I said earlier, Melissa has actually spent the last few years living in Switzerland with her husband and her daughter. But our story begins long before all of that back when Melissa was living in Boston where she grew up and was starting to put down roots. Let’s go back to Melissa you’re in your early 20s Long ago although you look fantastic.

Stephanie Wittels Wachs  04:54

So tell me like how would you describe yourself at that point in your life?

Melissa  04:58

Yeah, yeah. I was always a super adventurous person. You know, I was very lucky to grow up in a house and my parents were super supportive, I was always very safe. You know, we’re like, solidly middle class, but I always had everything I needed. So I think I always had this foundation of like, the sky’s the limit, you know, what the world is my oyster, I can do whatever I want to do. And so I worked really hard in college, you know, I got the grades, I got a really good job, kind of stressful job. So it took up running, because I love being outside. I love just the freedom that it gives you. And there’s a really nice stress release. And also, you know, I think like, you when you graduate from college, especially, you know, for me, as a young woman, I was in like, a very professional job with all these, like, very professional salesmen. And I just had to, like, pump myself up on a daily basis. So like, running was that it was like, give me confidence, showing myself how strong I was, was very meaningful. Like, I would identify myself, at the time is like, Hey, I’m a, I’m a marketing professional. I’m a friend. I’m a daughter, I’m a runner. Like, that was like, in the top of my, my list, because it was just so much a part of like, everything that I did. Um, like, my biggest passion point, I would say. And so I ran a lot of races, some for fun, some trying to be competitive. I was never like, I was never going to be in the Olympics. I was never good, like, really good. But it made me feel good.

Stephanie Wittels Wachs  06:46

I mean, we’ll call it a Olympics. Good, I guess. Right? Like, that’s just like a like, you could be really good and still not a Olympics.

Melissa  06:53

Yes, exactly. I was not a Olympics good. Um, but running marathons. Especially it was just like it. I don’t know, you go into it saying like, can I possibly do this? And then when you do it, it’s just this like, wow, like, look how strong I am. Like, look what I accomplished. It’s like a very just really for myself, not for anybody else is like a really big Energizer. I also got married really young. So got married right out of undergrad, it was like less than a year after I graduated. So 2003, I got married to my college sweetheart. And so we like bought a house and like did the whole thing living in the suburbs, like just kind of like, I don’t know, Hallmark story-ish.

Stephanie Wittels Wachs  07:42

This is what I’m supposed to do. And I am doing it.

Melissa  07:45

I am doing it. I’m checking the boxes, and I’m happy with

Stephanie Wittels Wachs  07:49

And you were you a runner, as a young person in high school. Or you really picked up running in your early 20s.

Melissa  07:57

I pictured running in my in my early 20s. I was I did was an athlete. So like, I played softball, I played field hockey. You know, I was always involved in something. But it was mostly team sports. Like this was really like my thing.

Stephanie Wittels Wachs  08:10

And did you, you said marathons, plural? How many? What was the best? I can’t possibly wrap my head around it. But please explain.

Melissa  08:24

I wish more to be honest. So I was training for the Boston because I’m actually from Boston. I’m from Massachusetts. So that was like my whole summit goals to run the Boston Marathon. It’s actually such a part of the fabric of Boston. People love it. I mean, as I was living there, like every single marathon Monday, which by the way, is a holiday in Massachusetts, only entire state Patriots Day, takes the day off, the city of Boston shuts down and everyone goes and watches the Boston Marathon and there’s like, hundreds of 1000s of people, would go and watch. And it’s just like in this. There’s stories, there’s like, you know, you grow up kind of hearing the stories of like the runners who won and all that it’s a big deal there. And just being a runner, it’s like the thing you want to check, check off your list like I ran the Boston Marathon. It’s a big deal.

Stephanie Wittels Wachs  09:20

Besides being incomplete all as someone who cannot run five minutes without being winded. I love that Melissa ran these marathons because she asked herself, can I do this? And the answer was yes. And she was doing it in every part of her life, not just marathons. She had this high powered sales job. She was happily married. She was in great physical shape. What more can you ask for? I mean, to have found your passion at such a young age and to be excelling both professionally and personally. It’s everyone’s dream. When you looked into the future, what were the things that you envisioned at that point in your life?

Melissa  10:04

I really, it only, it almost wasn’t like one road, you know, it was like, many possible paths, because everything was a possibility. You know, so if I want to go this direction with my career, I can do that, you know, if I want to go live here, I can, you know, go do that, you know, if I want to have kids, I can do that, like, you know, pretty much everything was on the table, I think, you know, my desire was to just have like, a really good career that would support the other things I wanted to do. I wanted to travel a lot and run where I was traveling different places, I love learning about people. And so travel was like one of those things that I could do to connect with that. So that for sure, like seeing the world was top of the list. And then, you know, eventually having children my ideal would have been to kids sometime in my early 30s was my goal. So like, have a little bit of fun, like, you know, establish myself and then get into the kid thing. So yeah, yeah, that’s pretty much it.

Stephanie Wittels Wachs  11:13

I feel like the thing I just heard you say, multiple times was I can do. And you’d proved it to yourself, because you kept pushing and achieving and pushing and achieving. That’s a great feeling to have. I can.

Melissa  11:31

Yeah. Uh, gosh, it really is, taken for granted sometimes. Yeah.

Stephanie Wittels Wachs  11:43

So you were training for the Boston marathon.

Melissa  11:46

Yep. Exactly. It was 2009. Last week of July. I was 27. And I was out on a training run. Two weeks before that. I actually came home and like, couldn’t get off the floor. I felt terrible. I thought I was gonna throw up, lightheaded, and I ended up actually going into the hospital. My husband, you know, took me and was like this, something’s wrong. And I went and they like, gave me fluids and Jack my heart rate. And they’re like, you know, it’s first hot day of the summer, you probably just overheated, you didn’t drink enough water, like make sure as you’re training in this temperature, you drink enough water. Okay, I can do that. So, two weeks later, I was out on this run, I was going for miles, and I was three miles into it. And I’ve been so careful, like drinking Gatorade, like all the electrolytes so that I can get you know, tons of water, making sure I’m hydrated. And I get this feeling again, this same feeling that I had in that run. And I was like, dammit, I am not having a bad run today. I’m just not. So I kept running. I ran the last mile I kind of ran walked because I couldn’t actually fully run. And the second I hit the front steps of my house, I just collapsed. lost consciousness. But luckily, I collapsed on the front steps and my husband was there and he called the ambulance right away. And the ambulance came and I’ve been an ambulance before as a kid and just you know, they come off and they can like help you and they talk to you and they make you feel better. And they do some things to give hospital. It’s kind of, I don’t know, it’s never relaxed to take out an ambulance ride. But, but this was clearly different. And I wasn’t that conscious. And I could even sense that there was urgency with the people that were working on me and they were saying things like are pulses thready no radio pulses, stuff like that. Look on and on. And the way to think about this. I don’t know what that means. But I can tell they’re very anxious.

Stephanie Wittels Wachs  14:02

From the bursts of conversations and all the worry in the air. It starts to become clear to Melissa that the problem is her heart. Her heart is failing her. Which you know, for a young healthy person is a sensation that feels totally foreign. What did it feel like when your heart wasn’t actually doing its job?

Melissa  14:24

It felt like extreme weakness. Like I can’t move different parts of my body. You know that you need blood to move your muscles. They work together so when there isn’t any blood you can’t move so I almost felt a bit like I was like I was sinking inside my body is the best way that I can describe it. I could just tell something wasn’t right. I had no words for it. But it was like this like sinking feeling and like trying to attract insight If my body and let all this stuff is happening to me, it was very out of control. And then another ambulance rolls up just like paramedics, they came, and they put me in the back, and they like, cut my running top off and put those like, pads on before they defibrillate you. And I remember the paramedic looking at me and she was like, I’m not really sure how you’re still conscious because your heart isn’t pumping properly. And I’m really sorry to tell you that the next thing I’m gonna do is really gonna hurt. And I’ve never had a doctor, you know, every time you know the doctor, they’re like, well, it’s a little pinch, you know, it’s gonna be fine. Bee sting. And she’s like, this is gonna really hurt. And they defibrillated me and I was awake. And it was the most painful thing I’ve ever felt in my life.

Stephanie Wittels Wachs  16:00

What happens? Can you explain?

Melissa  16:03

Yeah, yeah. So I mean, a defibrillator is essentially an electric shock, they electrocute you. And the reason they do that is because your heart is controlled by electrical pulses, like the rhythm of your heart is actually a series of electrical signals. And my electrical signals were totally out of whack. And so the only way to reset them is to send a large charge of electricity into your heart to reset it. That’s what a defibrillator does. And so I mean, but it’s so much because it’s gotta get through your skin, it’s got to get through your muscles, it’s got to get through your ribcage. So they have to use a pretty high voltage. And I mean, like, my body just shot up off the table. I mean, that’s how much electricity they send into you. So it’s really, really painful.

Stephanie Wittels Wachs  16:55

What does it feel like to be electrocuted in that way, essentially?

Melissa  17:01

I mean, I’m pretty sure I just screamed spontaneously. It’s like searing like hot pain from head to toe. Like there’s like a flash in your eyes. I mean, it’s unlike anything I’ve ever experienced before. What was interesting, though, is that I could tell that my heart was like, something was really wrong beforehand. And the second they did that, it was like, Oh, my God, that hurts so much. And then once it stopped, I was like, Oh, my heart is beating properly. Again. I could feel it, I could feel that it was actually like back into rhythm. And so they’re like, you know, lights and sirens, s2ending me off to the hospital. And, you know, it was like a, one of those things you see on TV, they like roll me in, and there’s 10 doctors, like running with my bed, you know, through the ER, like attaching things to me and talking to each other and injected me with stuff. And it was just like, terrifying. Terrifying. Honestly. I didn’t know where my family was. It was by myself just kind of hoping that everything would work out and being really confused. Like, what? Where did this come from? You know?

Stephanie Wittels Wachs  18:20

Holy shit, Melissa.

Melissa  18:22

Yeah, it was a holy shit kind of day.

Stephanie Wittels Wachs  18:28

I like rarely speechless. I actually have tears in my eyes. Hold on, I gotta recover.

Melissa  18:35

It was the scariest thing that I’ve ever had happen for sure.

Stephanie Wittels Wachs  18:41

I honestly can’t imagine. It sounds like a scene from a movie. It really does.

Melissa  18:46

It was like that. And that’s how I actually remember it. It’s almost like it didn’t happen to me. It still feels like a movie that plays in my mind.

Stephanie Wittels Wachs  19:12

We’re back. So Melissa ran home and collapsed on her front steps because her heart had literally stopped. She’d gone into cardiac arrest. After being shocked back to life. The ambulance takes her to the hospital. And the team of doctors and nurses do everything they can to stabilize her. So she’s alive. But now she has to figure out what in the world is going on. As you’re in the hospital bed and you’re this 27 year old, literal marathon runner. What in the world is going through your mind? What do you think is happening to you?

Melissa  19:56

To be honest, at first I have really had absolutely no idea. I was like, This must be a fluke kind of thing. Like, did I do something, you know, wrong? Did I like trigger something like what? I mean, nothing in my mind was you have an actual disease. That never crossed my mind at all. It was very much like, wow, that was some kind of Fluke situation. And I’m, you know, between terrified of what just happened and completely, you know, traumatized by that. And also a bit of just disbelief. Like, I can’t actually have believe that just happened. Again, still a bit out of body like, was that me?

Stephanie Wittels Wachs  20:48

Because up until this point, you’ve been healthy, right?

Melissa  20:52

I was a completely healthy marathon runner. Like, how does this happen?

Stephanie Wittels Wachs  20:59

At what point does a doctor come in and say to you, here is what is happening. When do you get some clarity? And what do they say?

Melissa  21:11

Yeah, the first time any doctor said, any hypothesis was two days later, I was in the ICU. I was in a regional hospital in Lowell, Massachusetts. And I remember being in the ICU, and they were just really trying to make sure I was stable. And I was hooked up to like, you know, 100 machines, it felt like, needles everywhere, and doctors and nurses constantly, but it was more about like, making sure I was okay, and keeping me alive rather than just diagnosing or at least they were not communicating to me anything about a diagnosis. The doctor came in and, and he said to me, you know, I have a hypothesis about what is happening with you. He’s like, but we’re not really equipped to handle it here. He said, You really need to go and be in a Boston hospital. And there’s a particular doctor in Boston that works with this illness, and I think you have, and so he’s like, I’m gonna transport you there. So they did, but he didn’t really tell me much about it. That’s what I remember is like, very vague. I have a hypothesis. I’m not sure we can take care of you here. You’re going to Boston that’s about what I took away.

Stephanie Wittels Wachs  22:30

But even that, even that, no thank you. It when a doctor when a doctor calls me at 9 at night. I’m like, no, thank you. I need a message through the portal. I don’t want to be taken to a different facility.

Melissa  22:42

I mean, thank God, you had really good bedside manner because he was like, very calm about it, which like, made me very calm about it. And I was like, okay, he’s like, but this guy knows what he’s doing. And he’s, you’re going to be in really good hands. I mean, he made me feel confident in it, but I was still churning. So they transported me there. And first of all, I arrive on this cardiac floor and I am 27 and everyone else is minimum. 55. Immediately I stand out like a sore thumb and I didn’t completely recognize that myself.

Stephanie Wittels Wachs  23:15

You look like somebody’s daughter who is on the floor.

Melissa  23:19

Yeah, you’re still a bed. Basically. That’s about it. So then you have like medical student, after medical student after medical student just coming in like asking you to tell you over and over again what happened. And while you’re 27 loose, like I felt a bit like a spectacle to be honest with. I feel like a circus sideshow.

Stephanie Wittels Wachs  23:49

The hospital where she landed is one of Harvard’s teaching hospitals, hence all the medical students coming in and out. And by this point in the story, it was really feeling like an episode of that show house where this mysterious condition of flick someone and no one can figure out what the hell happened. And everyone has their theories, but they’re all wrong until like 41 minutes into the episode when Hugh Laurie’s character gets this monologue and figures it all out. And there’s this tiny little ending and the credits roll. Only. This was reality. So what actually happened is that the new Doctor ran a series of tests to map the electrical signals in her heart. And finally, seven days after the initial cardiac arrest, Melissa starts to get some answers from her doctor.

Melissa  24:34

He said, you know, I think you have this condition. It’s called ARVC. It stands for Arrhythmogenic right ventricular cardiomyopathy, some mouthful.

Stephanie Wittels Wachs  24:47

Great work.

Melissa  24:50

Hard one to say. And he explained it is basically like your what happens to your heart is that the more you use your heart instead of in a healthy person, you know, the heart is a muscle, instead of a healthy person where like you break down muscle, it repairs itself with stronger muscle. But that happens, all the muscles in your body part included, your heart actually breaks down and replaces that tissue with fatty fibrous tissue that is non-functional. So basically what has happened over my lifetime, the more I use my heart, this fibrosis starts with inside and outside of the ventricle of my heart and blocks, the receptors of those electrical signals. And when those blockages happen, and your heart tries to connect and beat properly, sometimes it will miss a beat, your ventricle takes over and then it can’t figure out how fast to beat. So it just bleeds out of control. And that’s what causes a cardiac arrest because it beats up into like the, you know, 200 250 beats a minute range until it just like cardiac arrest. Can’t handle it. So he’s like, basically, the exercise that you do, makes your heart weaker. Which you can imagine thinking about now, what I’ve been spending my last year was doing running marathons, I have literally been tearing my heart apart. Every time I take a step. It was terrible. It felt like so unfair. To know that I could have avoided it if I had known. I mean, there’s no way I could have known but like, the thing I was so passionate about was literally killing me. It was awful. It was not a good day. That was a rough conversation.

Stephanie Wittels Wachs  27:13

Melissa has had years to understand the inner workings of her specific condition. But she could tell that I was getting a bit lost in the sauce of medical jargon. So she gave me this great analogy to help explain what exactly is going on with her heart.

Melissa  27:29

So a lot of times you hear about hearts, and you’re being told, like you know, don’t eat too many hamburgers, you know, don’t clog your arteries, be careful of high blood pressure, like all that stuff that is related to the plumbing system, if you’d like to call it. The arteries and everything. Your heart also has an electrical system. So you’ve got plumbing and electrical. Okay, my problem is not a plumbing problem. I well, I really shouldn’t eat as many hamburgers as I want. But I could I guess tactically. You want to add plumbing problems on top right? My electrical problems, but my problem is an electrical problem specifically. So that’s another way of kind of understanding how it works.

Stephanie Wittels Wachs  28:14

That is so incredibly helpful. I am in a long term process of like, renovating my house.

Melissa  28:24

Totally different systems.

Stephanie Wittels Wachs  28:27

Okay, got it. Alright, thank you for that that’s really helpful. So having an answer, and a name and a fancy abbreviation for your condition was a huge step at the time. But now she has to get back out there and figure out how to live with this new diagnosis. How do you even begin to process that news? How do you where do you put it? How do you start to unpack it and make sense of it?

Melissa  28:54

To be honest, a lot of time went by and I feel like I was just in shock when I didn’t actually, like I heard it. And I didn’t internalize it. And I’m sure that some kind of defense mechanism that my you know, my self was putting up to protect myself from like the casualty that that felt like it was. So immediately nothing I just was a bit numb, to be truthful. And then after that, I guess I started a bit of a you’d call it a grieving process. I didn’t have that language then I’ve seen lots of therapists since then, who have been delightful and very helpful in breaking all this down but just started kind of processing. What it was I couldn’t do any more. I guess I moved quickly past the regret that I had done it and more into like, I’m just sad. I can’t do it again. And I’m sad, I can’t run anymore. And it was a very empty feeling. And that’s why, you know, when I was able later to put the language around grieving to it, I think it was like so relevant because it’s like a hole that’s created. You know, it’s an empty space where there was something really meaningful there before. And you have to take the moment to recognize that and to grieve that that’s gone. So that took a while. I think over the years, I’ve moved into a place where I was able to start filling it up with other things, but I will tell you, it was years of me just feeling like it was a punch in the gut. Every time a friend said they were going to run a race, you know, or go for a run or train for a marathon. It was just like, literally, someone had punched me in the stomach. Because, you know, you want to be really happy and excited for that person inside. I was like, ah, like, I just wish I could do that still.

Stephanie Wittels Wachs  31:12

Yeah, so envious. Yeah, jealous. And ugly, ugly feelings. I know. It is grief. You’re, you are describing grief. Exactly. It’s like, I couldn’t even hear for years. People talk about their siblings or brothers or families. I couldn’t be on social media. I couldn’t see people experiencing joy. Yeah, you know, because you, you have a resentment around it. You’re like, yes. How dare you? How dare you live this life. And even the shock part, too. I mean, it’s also like, textbook.

Melissa  31:49

Yeah. And it was actually a bit of a foreign concept to me at that point, too, that you could grieve something that wasn’t a person. Oh, my No, this was like, the first time that I had experienced that. And I was like, God, is this right? Like, should we really be this upset about it sounds like someone died, but like, part of me died. And it took me a while to realize that and what it was actually a very freeing feeling. I felt almost so guilty for a while feeling as bad as I did about losing running and the realization that that was an actual grief, and an actual loss. And it was okay for me to feel that way. It was like, a really freeing feeling is the best way to describe it after I could really articulate that well.

Stephanie Wittels Wachs  32:46

And then, how did learning that you have ARVC? I’m going to say the letters not even attempt to say the word change, change the way that you thought about your future? Because that is such a big piece of it. How did you deal with the unsettled and grappling with what everyone does at 27? Through 30, which is I’m thinking about my future, and this is the life I’m going to paint.

Melissa  33:09

Yeah, I had a really rocky oblivious, maybe naive is a good word couple years right after that, where I didn’t, I kind of refuse to accept it. But not in a good way. In like, I’m just going to forget that happened. And I’m going to plug on anyway kind of way.

Stephanie Wittels Wachs  33:32

A magical thinking kind of way?

Melissa  33:34

A magical thinking. Exactly, exactly. One of the things that enabled that was actually that week, my, you know, my doctor came in and he’s like, Okay, I’m gonna implant this device in your chest. It’s a defibrillator. So, if this ever happens, again, it’s just going to shock you. And it’ll repair your heart rhythm and you should be okay. And I was like, Cool. Insurance Policy builds right into, you know, my pectoral muscle. So I think, you know, I think it just like, grabbed that and ran with it. You know, in hindsight, I think it was like the bright spot, and I just really wanted to hang on to the bright spot, you know? Yeah, of course. So I just took it and ran with it for a couple years. In that time, I ended up getting divorced. I ended up moving out of the house that we owned and I it’s actually how I ended up in Minneapolis. I decided that I was like, okay, I’m going to take control of the situation. I’m going to move to a totally different place by myself, start a new job, make new friends, and start over and like almost tried to like, leave it behind. Obviously, that was impossible but wrapping my head around.

Stephanie Wittels Wachs  35:07

I mean, I get the logic, it makes complete sense to me.

Melissa  35:10

I was like, no, I’m gonna stay in control of the situation. So I did, I did all of that I moved to Minnesota. Luckily, I landed in a place where I made really good friends really fast, which was like, one of the biggest blessings of my life, honestly, because I don’t think I would have survived if I hadn’t. I also met my current husband. So things went well for a time. But then I started to push it a little too hard. And they tried to start running again. And one day I was running on the treadmill, and I just felt like the blood just run out. It’s just an incredible feeling, actually, you just all of a sudden, you can literally feel your blood drain. And my device kicked in, and it shocked me and when, when your device shocks you, you’re getting electrocuted again. Doesn’t hurt as bad, because it’s inside. So they use less voltage. But it throws you on the ground. I mean, it, it feels like an elephant kicked you in the chest. So I go flying off this treadmill that I’m on at a gym, so I got hooked back up with a doctor, here in Minnesota, and they’re like, you really can’t do that. And let’s like kind of check into where you are, this was four years after my episode, and, you know, they’re like, let’s reground your disease gets worse when you exercise, you know, you have to stop doing that. And that’s where I actually that’s actually when I started seeing a therapist. And that was a really good turning point for me. Because she was able to really help me then like process and accept the situation, grieve it properly, and start to move forward. So that was a rough three and a half to four year period.

Stephanie Wittels Wachs  37:23

And what do we do when life gets rough, when it metaphorically, and in this case literally throws you off the treadmill at the gym? Let’s all say it together, we go to therapy. And that is what Melissa did. She found a stellar therapist. And after working with her for a bit, there was this one session in particular, that unlocked a new door for her.

Melissa  37:49

And then there was one day I went in there and she’s like, you know, Melissa, I think now is the right moment for you to start flipping the way you think about this. She’s like, yes, this illness has taken things from you. But think about the things that it’s given you. And I had never thought about that before. And I was kind of like, what do you mean things it’s given to me? Again, I don’t feel like it’s given me anything other than, you know, heart ache, literally and figuratively. But after really reflecting on that image, she was right. From the point of having such like a huge trauma happen. You know, for me, of course, like coming very close to death as close as you can come. You just gain this immeasurable bowl amount of perspective. Right, like I’ve realized that I don’t sweat the small stuff anymore. Like the little kind of like catty conversations, or the friends that don’t fill my cup, they drain my cup, those kinds of things. I realized I had naturally been kind of shedding in that period of time. And came to really appreciate my ability to focus on the things that were really important. Because that’s really all that mattered at that moment was those really important things. I also wouldn’t be here today if I hadn’t had that happen to me, I wouldn’t have the friends that I have. I wouldn’t have the job that I have that I really love. I wouldn’t have this experience even today. I when I think of things all the time. You know where I live in Switzerland. I wouldn’t. Maybe I would have done it a different way. But this pivotal moment of my life really opened that up. And so that to me, I continue to go back to that very regularly and try to say what is it giving me versus what is it taking away from me?

Stephanie Wittels Wachs  40:10

Oh, that’s a really good lesson and such a good lesson.

Melissa  40:16

Life changing for me or like a therapist. I love a good therapist.

Stephanie Wittels Wachs  40:43

We’re back. So with her newfound mantra, focusing on what her condition gave her, Melissa is able to settle into her life for a while. She’s got a great group of friends in Minneapolis, including our very own Lizzy, and she married her super supportive husband. And pretty soon they start thinking about growing their family. But her disease has another surprise in store for her.

Melissa  41:10

Nobody had ever said anything to me about the fact that I couldn’t have children. So I just assumed that I got I was a vote, they would have told me that I couldn’t. So I went to my doctor. And she said, well, you can have children. But I’m going to tell you a couple of things. And then I’m going to leave the decision up to you what you want to do. Not the best start to a conversation, you’re like, what’s coming here. She said, you know, your condition is very rare. And so fewer than 150 women in the world have ever been studied. Being pregnant with this illness. She’s like, so we really do not have good data, I can’t even make a prediction for you on if this is a good idea or not. She said, but what I will tell you is being pregnant is like being on a treadmill for nine months, just like your body takes on, I believe it was like 50% more blood volume when you’re pregnant. So your heart has to work really hard to pump that extra blood that you know, helps grow your baby and keep your baby living. And so she’s like that can be really tough on your heart. She said, so although I have no actual data, she’s like, I think you need to be prepared, that if you have children, you will shorten your lifespan by 5, probably 10 years, for every child, that you have.

Stephanie Wittels Wachs  42:56

A simple, yet horrible equation. Bring a child into the world and take years off your life. After all the work Melissa had done to get herself back to a point where she felt like she could do so much. Once again, this felt like a devastating loss.

Melissa  43:17

And of course, you know, we go home and we talk about it. And at the end of the day, we both just really wanted a child I wanted to baby so badly. And ultimately we decided and I’m like oh so lucky to have such a brave partner. But we said listen, we’re gonna go for it and it was the best decision I ever made.

Stephanie Wittels Wachs  43:47

So Melissa and her husband stayed the course. And pretty soon she’s pregnant with their daughter olive. Because of her condition, she was considered high risk from day one. So yeah, the stakes were higher right off the bat. But it also gave her a rare opportunity to watch all of grow because her doctors were closely monitoring hers and the baby’s health throughout the pregnancy, which meant more ultrasounds and more ultrasound photos to attach to the refrigerator door.

Melissa  44:17

And then you know, toward the end, they made me feel really comfortable. Like it was not able to do labor. So they’re like, we’re going to do a C section we’re going to schedule it. So that all went really smoothly. She was meant to be born in January. She came a couple of weeks early. She was born on Christmas Day. So she is my best Christmas present I’ve ever had. Yes, Christmas morning. Literally. She’s the last present I opened.

Stephanie Wittels Wachs  44:51

As we know, everything is happy and sad. And Christmas is certainly no exception. So while Melissa was over one helmed with joy that Olive was finally here. And she was healthy and perfect. The pregnancy, as her doctor’s promised, did take a significant toll on her body.

Melissa  45:13

So I noticed a difference in my health after, luckily, you know, is still, you know, able to play with her as a kid. And, you know, as a little one carrier around, like, I never had a problem with that. And that made me super happy. So I almost, I think, set aside the fact that I didn’t feel great to speak because she was like, so full of joy. One thing that this illness gave me was, I just was like, felt so lucky to have her that I almost just, like, plugged my way through it, because I was just so happy she was there. And then I could do it. And like my husband, and I could have a child, I just felt so blessed that we were at that point that I would literally do anything, I would put my body through whatever. So no, I did not feel good. And I think I just did probably what most moms do and just plug your way through.

Stephanie Wittels Wachs  46:20

Melissa was so overjoyed by having Olive in the world that at some point, she and her husband started planning for a second child. And once again, her disease had other plans.

Melissa  46:33

I have a job that, on occasion requires me to speak in front of large groups. And I was traveling to Tennessee, with some people from work and speaking to a group of 200 people that work at one of our manufacturing facilities. And I was about five minutes into a story. And you know, like, everybody gets nervous and stand up in front of 200 people, like my heart is gonna pound a little bit right. I never had an episode without having done exercise. But, a couple minutes into it, I got shocked in front of all these people. And I mean, I like fall on the ground. And really quickly after that, I was shocked again, and then again. And so I was like, I’m gonna die on the floor of this manufacturing facility. And I did not say goodbye, my husband, say goodbye to my daughter. So it was even more scary, I think than the first time because I could register exactly what was happening. And luckily, my pacemaker actually stopped the arrhythmias on like the fourth time around. So I did not end up going into cardiac arrest, which was, thank God.

Stephanie Wittels Wachs  48:09

When Melissa got back to Minnesota, her care team sprung into action, they stabilized her and started her on a new medication. Only in keeping with our happy, sad thing, the medication would help control her heart rhythm, but was actually slightly toxic, and over time, would damage her liver, thyroid and lungs. Basically, it was going to save her but at a really high cost. And with this new phase of treatment, man, another tough conversation. Having any more children was firmly off the table.

Melissa  48:46

That was like another big moment. I think we’re you know, it’s like so much joy having my daughter. But she would even ask me a lot like mom, I really want a sister or mom I really want a brother. And I was just like so sad that I couldn’t give that to her. I know, someday she’ll understand. But, you know, then you have kids and then you just like want to give them the world. And this is a thing I wondered for myself and my husband and for her. They just wasn’t able to do so that again, that was another loss. You know, loss of vision of what I thought my family would look like that I had to had to work through at that point.

Stephanie Wittels Wachs  49:37

Yeah. How do your therapist words at that moment, like taking that advice from her and saying, okay, this is what it’s given me. This is what it’s given me. Like, how are you?

Melissa  49:50

How you hold on to that? Yeah, not perfectly, that’s for sure. Because, you know, you kind of go through the whole process over again, the like disbelief that had happened, then you realize that you’re losing something. I had to grieve the loss of not having a second child. And in that situation, you know, what she helped me with was like, well, what can you celebrate? Okay, and you’re like, what? For celebrate something, right now that seems very unrealistic. Give me a break. What we ended up doing was celebrating that we were a family of three. And that’s how I turned that moment around. And it sounds like a small thing. But it actually was such a huge thing to like, really. And it wasn’t like a momentary thing. It wasn’t like, I’m going to decide now that I’m going to be happy with a family of three. Like, it was a process of thinking about, like, what’s amazing about being a family of three, all the way down to we can fit in one row on the airplane. I mean, I wrote down all of it.

Stephanie Wittels Wachs  51:16

That is honestly the truest statement I’ve ever heard, actually.

Melissa  51:22

But literally, every little thing you like, pull all those together. And there, it seems so small, but it’s so meaningful at that moment, because it’s a checkbox in the positive column totally know, like, what is this giving me column? What would that goal there? It helped me stay focused on that versus focus on again, what I lost. And believe me by no means is it like a perfect process, either. It’s like, two steps forward, one step back all the way there. There are shitty days. And there have always been those days within that process. I think the key is like, having more good days where I like found that positive check that I could put in that what I gave me column, more of those than the bad ones.

Stephanie Wittels Wachs  52:26

I was so in awe, talking to Melissa, of how incredibly strong she was, how she’d managed to continually accept the ever shifting landscape beneath her feet. But the bottom line is that her heart is getting worse, little by little every day. So what’s on the table now, a heart transplant. It turns out when I spoke to her, she was back in Minnesota doing some tests that will determine her eligibility for the procedure. Now, when it comes to organ transplants, and heart transplants, specifically, there is an extremely convoluted process to determine who gets one when, very simply put, they don’t want to give one to someone who is too healthy or too sick. Melissa has been navigating this murky line for the past few years, just waiting and waiting to find out if she’ll be considered eligible. But even if everything goes right, and she gets the transplant, it still might not be a cure all.

Melissa  53:32

When you have a heart transplant, it sounds like a cure. But actually a heart transplant is not a cure. It’s a you’re transitioning a set of issues to another set of issues. Because as amazing a metal gold technology it is to have somebody else’s organ saves your life. I mean, that is like blows my mind how incredible that is from so many angles. It’s really hard for your body to have somebody else’s organ inside of it. And so you’re it’s not like you’re better. But people do it. And doctors recommend it because it extends your life. And that’s why you do it so you can live longer. So you kind of live with the symptoms that come with being a heart transplant patient. So you don’t want to do it too early. Because you don’t want to put your body under that stress earlier than it has to and you don’t want to do it too late that you’re so sick, that now the heart doesn’t have its intended purpose anymore.

Stephanie Wittels Wachs  54:40

And it turns out, if she does get a new heart, she can reclaim one of her greatest losses.

Melissa  54:49

In fact, I’ll be able probably to be able to run again after I have a new heart. I can actually like run race. It’s some people even running marathons, I’m not gonna, like get my hopes up too much, but some people do.

Stephanie Wittels Wachs  55:04

That’s amazing. That’s amazing. That’s amazing.

Melissa  55:08

But at the very least, like, I’ll be able to do all the things I want to do with my daughter, like, that’s the happy emotion. The sad emotion is like, there’s a bit of a clock that starts ticking when you have a new organ, they don’t last forever. Technology is so much better than it used to be. So there’s some people out there who have hearts for 30 years, which is incredible, used to be quite a bit shorter than that. But it can be shorter than that. So I know that there’s something really hard ahead of me, too. So there’s this kind of a dread almost, of having to have that clock start ticking and that that process have to happen.

Stephanie Wittels Wachs  55:58

But what’s at the end of that clock, though? What’s at the end of the clock?

Melissa  56:03

I mean, right now, depending on how old I am, they wouldn’t transplant me again, I would just that would be the end of my life. My heart runs out. And it depends, you know, again, that’s based on today’s technology, that’s always changing. So maybe there’s a way that that wouldn’t be the case. But that’s kind of what we’re planning for right now. Is one hurt not? Not to. Wow. Yeah. So I want to stay around long enough so that at least see all of have kids. That’s like my goal. So if I can be one of those 30 year people gonna do everything I can to do that.

Stephanie Wittels Wachs  56:56

How do you talk to Olive about your condition? Oh, what does she know about it?

Melissa  57:03

So basically, you know, I’ve been very honest with her, like, hey, Mama’s heart does not work the same as other people’s hearts, my heart kind of doesn’t work very well. So I need a new one. And what’s amazing is that somebody else can give me their heart. And doctors have figured out how to make that happen, for one hurt to go from one person to the other. And so that will help me live a lot longer. And when I’m done, I’m going to be able to ski with you. And I’m going to be able to ride bikes with you and daddy. And we can go scootering. And even like, we used to dance all the time when she was really little to Disney songs. And I would just like pick her up and swing around, and my heart has gotten bad enough that I can’t do it anymore. That was probably the thing she was happiest about was that I could dance with her again. So I think she gets it like she really wants me to be better. And she’s always so tough. She like never say anything to me about it.

Stephanie Wittels Wachs  58:19

Olive may be taking cues from her very tough mom. But Melissa sees how all of this affects her. Around a year ago, it was looking like Melissa would be receiving a transplant sooner than later. But things changed and it ended up getting pushed back once again. And then the days that followed Melissa, notice that all it was being a little moody. So she poked around a little bit to figure out what was going on.

Melissa  58:45

I just was silent and I let her talk and she said, Mommy, I don’t like when you have to go to the hospital because when you hurt I hurt, she’s like, I don’t like seeing you know, I get covered in bruises because I take blood thinners and like every time I poked with a needle, my arm turns black basically. And she’s like when I see that it just makes me hurt and I don’t want you to hurt. And I never really understood like the depth that she was feeling it until she said that to me.

Stephanie Wittels Wachs  59:23

In the face of all of this uncertainty for herself and her family. Melissa has been continually tasked with making tough decision after tough decision, each one having its own set of consequences. But in her heart, her very strong heart. There’s one decision that has given her and will continue to give her so much.

Melissa  59:53

I always say I would rather live 10 years less than live 30 years without my daughter, she’s lived up to it.

Stephanie Wittels Wachs  1:00:07

I feel the same way about mine.

Melissa  1:00:11

You give up life you give up yours to spend just some time with them.

Stephanie Wittels Wachs  1:00:17

Oh, you’re making me cry too much today, it’s so true. It’s so true, isn’t it?

Melissa  1:00:26

They’re magic.

Stephanie Wittels Wachs  1:00:28

Absolutely. You know, when you hear or read or watch something that you needed at exactly the right moment. It’s almost like, wow, I cannot believe this thing was put out into the world to be seen exclusively by me. That’s how I felt talking to Melissa. What if we reframed all the things that don’t play out exactly how we imagined they would? What if we focused on the gains instead of the losses? Recently, a dear friend said to me, what if you told yourself the good story instead of the bad story? And that tiny little sentence unlocked a very heavy, creaky old door inside of my soul? We can’t control what happens. And as I said, up top, I continue to fucking hate that. But we can control the story we tell ourselves about what happens. I’m not saying it’s easy. It ain’t. It takes practice, but it’s good to know that, that option is always there.

CREDITS  1:01:58

There’s even more LAST DAY with Apple premium. Subscribers get exclusive access to content like Jackie from last week talking all about who supported her and what it was like to still have to get up and go to work every day during the hardest moment of her life. Sign up now on Apple podcasts. Hey, Prime members, did you know that you could be listening to this episode of LAST DAY ad free on Amazon music? With Amazon music you get access to the largest catalog of ad free top podcasts. Start listening today with the Amazon music app. LAST DAY is a production of Lemonada Media. The show is produced by Kegan Zema, Aria Bracci, and Tiffany Bui. Our engineer is Brian Castillo. Music is by Hannis Brown. Steve Nelson is our Vice President of weekly content and production and Jackie Danziger is our Vice President of narrative content and production. Executive Producers are Jessica Cordova Kramer and me Stephanie Wittels Wachs. If you’d like what you heard today, we have three other seasons that you can check out. Have a story you’d like to share, head to bit.ly/lastdaystories, or click the link in the show notes to fill out our confidential Google Form. follow and subscribe wherever you get your podcasts or listen ad free on Amazon music with your Prime membership.