What does caregiving look like when you’re living nearly 9,000 miles apart? Fortunately, our guests have the answer! In this episode of The Mighty Podcast, host Ashley is joined by Dani — who lives with symptomatic obstructive hypertrophic cardiomyopathy (HCM) — and her daughter Kassidy.

Together, the trio discusses Dani’s life from symptom onset to finding a treatment that is working for her. They also talk about the duality in Kassidy’s role as both daughter and caregiver as she supports her mom through her best and worst days with the disease (and everything in between!).

Come for their relatable story, and stay for the genuine mother-daughter bond you can feel through the microphones.

This episode is sponsored by Bristol Myers Squibb. Dani and Kassidy are paid spokespeople on behalf of BMS.

You can also listen on our Spotify for Podcasters page and on Apple Podcasts.

Episode Transcript:

Ashley  

Welcome to The Mighty Podcast, where we infuse the health space with positivity, humor, and vulnerability. The Mighty is a safe and supportive community here to help you find the people and information you need to navigate your health journey. And we’re so excited to spend some time together today. Today’s podcast is sponsored by Bristol Myers Squibb or BMS. Now let’s get into what the health we’re talking about today, and we’re going to be talking about symptomatic obstructive hypertrophic cardiomyopathy, or obstructive HCM, with someone who has lived experience with the condition with support from her daughter. Dani and Kassidy are paid spokespeople on behalf of BMS. So, without further ado, my name is Ashley, and I would love to introduce Dani and Kassidy. Welcome, Dani and Kassidy.

Dani  

Thank you. Happy to be here. 

Kassidy  

Thank you for having us. 

Ashley  

For sure. I’m excited to hear more about your stories today. So Dani, can you give a little bit of an introduction about yourself for our listeners?

Dani  

I am Dani; I’m 58 years old. I’ve been living with obstructive HCM for about seven years, six, seven years. I’m a registered nurse. I have four children; they’re all grown. My youngest one is on here with me.

Kassidy  

Hi, I’m Kassidy. I am 28 years old. I also was a registered nurse. But I am actually now here in Australia. Yeah, just kind of traveling around. I’m super far away from my mom, which is unfortunate. But I hope she comes to Australia and comes to see me land down under one day. And yeah, I play rugby out here too.

Ashley  

I love that. I mean, at least you get a little bit of this quality time in this recording, which I know is a little different than in person. But it’s something. I want to, before we dive deep into the topic at hand, start with a little icebreaker, get us warmed up for the conversation. So I’ll answer the question first, I’ll go over to Dani next, and then Kassidy.

Question that I have for you is, if you could vacation anywhere, no matter the cost, where would it be? So my answer, I was thinking very hard about this because I realized there’s a lot of places I’ve gone that I would love to visit again and be able to relive some of those memories. But then I have so many places I’ve never been, and I would love to, so I think I settled on the answer of Iceland. I’d love to see the black sand beaches; I’d love to be able to see the aurora borealis. So that is my vacation anywhere destination. What about you, Dani?

Dani  

Well, Australia, of course.

Ashley  

Very fair, very fair. 

Dani  

For obvious reasons, I don’t even have to explain that.

Kassidy  

You know, I think for me if I were to go anywhere, and not even thinking about cost, I would take a very lavish vacation to Italy and just eat all the bread, all the pasta and see the Amalfi Coast. Maybe be on a yacht for a week or something.

Dani  

I changed mine to hers.

Ashley  

There you go, just that’s in the middle, right? That’s kind of meeting in the middle. As much as I know we’d love to go to those places right now, let’s jump into our conversation. So, Dani, I’d love to start – our audience may not be super familiar with obstructive hypertrophic cardiomyopathy. So could you tell us a little bit about the condition?

Dani  

Hypertrophic cardiomyopathy has different variations. The variation that I have is the obstructive variety. Essentially, the heart it’s overworked. So it gets enlarged, and so that it doesn’t function properly. Also, the muscle fibers in people with hypertrophic cardiomyopathy are – there’s too many. And so that’s what causes the contractility to kind of go overboard.

Ashley  

Thank you so much for that background. I would really love to get into a little bit about your diagnosis and what that experience was for you. So, just starting at the beginning, what did a day in your life look like before you started having any symptoms?

Dani  

Working full-time, going to school, going out on weekends. I mean just – I could do everything I wanted to do with no problems. I didn’t realize how good life was until I got sick.

Ashley  

I think that’s a very relatable place that a lot of people in our community have talked about knowing that, what were those symptoms that you first experienced – what was that first impact?

Dani  

Shortness of breath was the biggest thing. And it just progressively got worse, until I thought I need to go see somebody and find out what’s going on.

Kassidy  

Yeah, I remember the shortness of breath for sure before she was diagnosed. We were on vacation and we wouldn’t really be walking that far. But she would have to take a break. And honestly, at the time it was like, “Come on my mom, keep up.” You know? And then I looked back now after knowing everything that we know, and it was like, those were some very bad symptoms that she was experiencing.

Ashley  

Yeah was your day-to-day impacted in other ways as well?

Dani  

The shortness of breath really was the worst because the worse it got, you would actually look at errands, you would drive into a parking lot, and instead of thinking what you had to get, you would think, am I going to be able to make it from the parking spot into the store? And then once I get in the store, will I be able to even get everything I need? Or will I run out of steam halfway through? So you even start going to smaller stores that are more expensive, just because you know, you can get in and get out without almost passing out.

Ashley  

Yeah, that makes a lot of sense. And I think you know, a lot of our community talk about the accommodations they’ve had to make for their symptoms, and the ways that it show up, and I think that really speaks to that as well. So you started experiencing these symptoms, your day-to-day was impacting, you’re like, “Alright, I gotta go talk to somebody.” So from that point, what was that journey, actually getting from that point to the diagnosis?

Dani  

The diagnosis was a long time coming, I saw several different providers, and it took probably about two years to get a solid diagnosis. And then from there – surgery. Once I got the diagnosis then the surgery was fairly quick. But there was a long process. I was told I had left ventricular hypertrophy, and just to take some medicine, and I would be OK. But something in my gut just told me there, there’s more to it than that. And I just pursued other providers and finally got the correct diagnosis.

Kassidy  

Yeah, I remember the journey being very, very long. Countless doctors, procedures, tests, in and out of the hospital and it took quite a while to get an answer. And then obviously, the number one recommendation at the time was open heart surgery, which is obviously very scary. And it was unexpected. And yeah, it did happen very quickly after diagnosis.

Ashley  

Yeah and I can imagine after all of that, waiting to for the diagnosis, and then the very quick change after that, I’m sure overall, that must have been such a stressor on you as individuals on you as a family. So I can understand how rough that part of the experience had to have been at that time for you all.

So I do know that symptomatic obstructive HCM can be passed down in families. So we have a unique experience where we have the family connection we can speak to here. So have you gotten any genetic testing done? Is this something that you know, Kassidy you’re concerned about in your future?

Kassidy  

So I have not had genetic testing done. And a big reason why I decided not to do that at this time, is because my mom had genetic testing done. And it did come back inconclusive. So I’m thinking that my if I did have any gene, it would also come back inconclusive, I definitely feel like I’m more aware and knowledgeable of what symptoms look like. And if I ever were to become symptomatic, that I’d be able to take care of myself and see a physician about it. But at this point in time, I’m not experiencing any symptoms, I did have one echo done a couple of years ago, and it did show I think, very mild blood ventricle enlargement. But other than that, everything came back normal, and I feel healthy and well, so. 

Ashley  

Anything from your perspective, to add to that, Dani?

Dani  

There’s several genes that show up when you have symptomatic obstructive HCM. And there’s many that they haven’t identified yet. So mine did come back inconclusive.

Ashley  

And I mean, we look at silver linings a little bit, knowing your experience, your family does know what to look out for. And that is something that you all know what the signs are, because you’ve, you’ve experienced them. And so, you know, you’re in the best position possible, if anything were to happen, because you have that knowledge, which is just such an important part of taking care of ourselves. So, Dani, so you got this diagnosis, what were your thoughts? What were your feelings after hearing that diagnosis? 

Dani  

At the time I wasn’t familiar with the disease. So of course you want to gather, do all kinds of research, and you go down the rabbit hole of learning about the disease. And there’s a lot of stuff out there that isn’t, you know, accurate. So I tried to not go down the rabbit hole, only read, you know, peer-reviewed articles and not go down Dr. Google. So, life-changing diagnosis, right? I mean, so I wanted to do whatever I can to make my chances of you know, recovering better.

Kassidy  

I think when my mom, when she was diagnosed, and she found out that she had to have surgery, she was doing lots of research, especially on the physician that was going to be doing the open heart surgery. Because she had options of who was going to be operating on her. And, you know, she wanted to be in the best hands. Really amazing at the advocacy that she has when working with doctors and her, her care in general, she knows when something’s wrong, and she does not leave until it is addressed. Which is honestly, it’s wonderful. I think knowing obviously, because she had the diagnosis and then had the surgery was, you know, suggested right after diagnosis. That was scary. So besides the research part of things and doing what she could that was in control of her, I think there was an immense amount of worry on her part that she wasn’t going to make it through surgery, for sure. 

Ashley  

And I just say I love hearing about you being able to take that time to do that research. I know you said it was pretty quick. But the fact that you were able to be instrumental in your own care is something that we hope that patients can do. And so I’m really, really happy to hear that that’s something you did have the opportunity to, to figure out who the doctor was, and all of that. Cause I think that, hopefully helped assuage some of those fears going into it as life life-changing diagnosis that hits a certain way. It’s tricky. So I’d love to know, we’re talking about all of this diagnosis, all that’s happening, and the medical side of things. So how was your career, your work? How were they affected by, you know, this diagnosis by the symptoms?

Dani  

I had gone on leave a couple times – before surgery and then after surgery. I had picked a return date where I was cleared to go back to work and everything, went back, couldn’t do it. And then I took a leave from nursing school as well, because I graduated nursing school after my diagnosis. I was following this development of this drug. I was reading about the clinical trials and I’m like, I have to get on this. Because after surgery, I felt OK, for a time. And I’m like, “What are my options now?” I mean, I basically thought I’m just not going to be OK, forever. And I was following this drug. And as soon as I was FDA-approved, I was trying to get on it.

Ashley  

Yeah and we’re going to talk a little bit more about treatment in a minute. And so I definitely want to come back to that conversation. I think the last thing that I want to round out with this, you know, diagnosis conversation is, who did you turn to for support when you’re going through all of this?

Dani  

My kids, Kassidy in particular.

Kassidy  

Yeah, talking about the question that you asked before this, work in school and everything before surgery was difficult. But even after surgery, I remember she had an extremely difficult time. I mean, she felt like she was basically climbing Mount Everest trying to meet these goals of completing you know, nursing school. And I remember several jobs that she had applied for, got the job, started the job, and then physically could not walk from the parking lot to inside of the building without being extremely short of breath. And I remember her calling me be like, there’s just no way that I can do this. And it’s terrible to have an obstacle such as that blocking you from things that you want to do. And I think as a support person, for her, especially being obviously 8000 miles plus away here in Australia, I think the number one thing listening and hearing her out. Everything is very real, and everything is very valid. And I think even before the diagnosis, when she would have shortness of breath, I’d be like, “Mom, no, you just have to work out, you need to go to the gym more, you need to eat better food, get more sunlight, drink more water.” And obviously I just didn’t have the knowledge at the time that we have now. And also listening to other people’s stories about this condition has helped open my mind so much about what someone can go through. And yeah, just really give her a listening ear and encourage, encourage as much as I can.

Ashley  

And you kind of answered my last question for the section. But if there’s anything else you would want to expand upon what that support and advocacy looked like for you through this whole process?

Kassidy  

Yeah, I would say because I’ve pretty much always have lived out of the state of Minnesota. Well, in the last three years I’ve lived out of state so I’ve always been far away from my mom. I would say the number one thing that I could do for support is definitely listening. And also really pushing her to not that I actually really have to do this, because she’s such a great advocate on her own. But yeah, just kind of validating all of her feelings. You know, I know something’s wrong. And it’s like, yeah, if you think something’s wrong, I 100% believe you, and you need to make sure that that is communicated to your providers, and really just yeah, supporting her backing her up a hundred percent. Lots of phone calls, lots of Face Timing, and also being able to be here with her. And I love that we always have a great time together doing things like this.

Ashley  

Love that. So I like that you talked about validating your mom’s experience, because I think that is such an important piece of it. It might not seem like direct advocacy, but it’s hard going through the experience of getting a new condition and having to navigate it. You said Dani earlier on that, you were told it was one thing, but you had that gut, that validation of your gut feeling is really powerful, because you know, your body the best. And so Kassidy confirming that just helps you get the best care in the long run. So I think that’s such a great you know, piece of that support that you provide Kassidy.

And with that I would love to swap over into our next section talk a little bit about treatment experience. So, Dani, what did that treatment journey look after you got your diagnosis? I know we started to touch on it a little bit, but could you kind of give us an outline of what that looked like?

Dani  

So initially, my treatment was open heart surgery. It’s not a cure for symptomatic obstructive HCM. However, it does reduce the symptoms for most people. It didn’t work for me it worked initially for a couple months, and then slowly but surely going right back to square one. I went back and had further testing done and my obstruction had returned. It was even worse than when I was initially diagnosed. So we were trying different medication combinations. And I was tracking CAMZYOS (Mavacamten), I was watching the trials and I was like, I gotta get my hands on this drug. The minute it comes out.

Ashley

Let’s take a short break to share a little bit more about CAMZYOS.

INDICATION
CAMZYOS® (mavacamten) is a prescription medicine used to treat adults with symptomatic obstructive hypertrophic cardiomyopathy (HCM). CAMZYOS may improve your symptoms and your ability to be active. It is not known if CAMZYOS is safe and effective in children.CAMZYOS may cause serious side effects, including heart failure, a condition where the heart cannot pump with enough force. Heart failure is a serious condition that can lead to death. You must have echocardiograms before you take your first dose and during your treatment with CAMZYOS to help your healthcare provider understand how your heart is responding to CAMZYOS. People who develop a serious infection or irregular heartbeat have a greater risk of heart failure during treatment with CAMZYOS. Tell your healthcare provider or get medical help right away if you develop new or worsening shortness of breath, chest pain, fatigue, swelling in your legs, a racing sensation in your heart (palpitations), or rapid weight gain. The risk of heart failure is also increased when CAMZYOS is taken with certain other medicines. Tell your healthcare provider about the medicines you take, both prescribed and obtained over-the-counter, before and during treatment with CAMZYOS. Because of the serious risk of heart failure, CAMZYOS is only available through a restricted program called the CAMZYOS Risk Evaluation and Mitigation Strategy (REMS) Program. Your healthcare provider must be enrolled in the CAMZYOS REMS Program in order for you to be prescribed CAMZYOS. Before you take CAMZYOS, you must enroll in the CAMZYOS REMS Program. Talk to your healthcare provider about how to enroll in the CAMZYOS REMS Program. You will be given information about the program when you enroll. Before you take CAMZYOS, your healthcare provider and pharmacist will make sure you understand how to take CAMZYOS safely, which will include returning for echocardiograms when advised by your healthcare provider. CAMZYOS can only be dispensed by a certified pharmacy that participates in the CAMZYOS REMS Program. Your healthcare provider can give you information on how to find a certified pharmacy. You will not be able to get CAMZYOS at a local pharmacy. If you have questions about the CAMZYOS REMS Program, ask your healthcare provider, go to www.CAMZYOSREMS.com, or call 1-833-628-7367. CAMZYOS® (mavacamten) REMS Program. Learn more about CAMZYOS® Risk Evaluation and Mitigation Strategy (REMS), including how to get certified and how to manage your REMS tasks online. Please see additional Important Safety Information below, and U.S. Full Prescribing Information, including Boxed WARNING, and Medication Guide linked on the episode landing page on TheMighty.com.

And I have a question here which I’m pretty sure I already know the answer to, about if you are hesitant at all to try this treatment?

Dani  

No because I knew you know there’s risk but I also knew that if I don’t take the risk that I’m going to be sedentary, everything is a struggle. And, I don’t know, I somehow knew in my heart that this drug was gonna work for me, I just knew it. And it has.  

Ashley  

Yeah so on that I would actually love to know which of your symptomatic obstructive HCM symptoms have changed since starting CAMZYOS? 

Dani  

Since taking CAMZYOS, my symptoms have been improving and things have changed for the better. I’m able to do more activities than I did before including going on longer walks. I have a lot more energy which has allowed me to go back to work as a nurse and I’ve been able to travel which is something that I hadn’t done for years. So that’s been awesome. Knowing I can travel again and visit my family again whenever I want – that’s a significant change for me. CAMZYOS is not a cure, I still have obstructive HCM, and when I started on CAMZYOS I did experience some symptoms including dizziness, however, I am glad that I’m feeling so much better.

Kassidy  

I was on the phone with my mom when she took her first dose because it was a moment of, “Oh my gosh, it’s here I finally have it. I’ve worked so hard to get it in my hands.” And yeah, it was definitely just a little moment for us. 

Ashley  

That just melted my heart to hear that’s just so, so special. I love that. So I guess the question I have for you is how do you feel now?

Dani  

I feel like I used to feel. I feel like I don’t view going to the store as how close do I have to park to the grocery store? Am I gonna get in there, and I mean I can work, I can travel. It’s really something.

Kassidy  

I would say if I were to compare how she was before starting CAMZYOS to being on CAMZYOS now for a little while. One obviously, the symptoms have lessened. She also would call me she’d be able to walk up a flight of stairs and she’d call me and she’d be like, “I just walked up a flight of stairs. And I did not get short of breath at all.” Which was phenomenal. When you’re not feeling well, and you’re tired all the time, and you can’t walk distances. It’s hard to go on outings with friends, you know, when you’re always feeling miserable, it’s hard to make relationships with people, you know. And now that she’s feeling so much better, she’s able to travel, she just went on a cruise with a friend. She was able to walk around the entire ship. And she was able to go and see different islands. And you know, she didn’t have to worry about, “Oh, my gosh, am I going to feel super sick today where I’m not going to be able to do anything? Or am I going to be able to walk?” that wasn’t even a thought in her mind. she was just, just enjoying herself. 

Ashley  

I love that. So I guess my question now is to follow that, how does symptomatic obstructive HCM play a role in your life today?

Dani  

I know it’s there. And I know that I’m not cured. I still have the disease, but it’s managed. There’s advances in science all the time. This handles the symptoms. Maybe someday there’ll be a cure. 

Ashley  

So with that, you know, with being on CAMZYOS with you know, doing everything you’re doing, how often do you see your doctor today? What’s that relationship like?

Dani  

I have to have an echo every three months at this point in treatment. So initially, it’s every thirty days. And then after a certain amount of time, it’s every three months. 

Ashley  

And I would love to know Kassidy, how on your end does support today look different than it did you know, while going through that diagnosis journey, while figuring out the treatments?  

Kassidy  

I mean, of course, I still showed up in the same ways that I do now, which is really just trying to talk to her and give that support through FaceTime. But it was definitely difficult at first. There was a lot, a lot of sadness, and a lot of feeling like there was no light at the end of the tunnel, which is very sad, because, I mean, there’s nothing I could do, besides letting her vent and me telling her that it was going to be OK. Now I think support is more so celebrating in her successes. You know, being able to go up a flight of stairs, I wasn’t shortness of breath, and being able to celebrate with her for that.

Ashley  

I love that. And I think you touched on this a little bit earlier as well. But you know, you live in Australia now. 

Kassidy  

I do. 

Ashley  

Dani, you live stateside? How does that time zone difference affect that?

Dani  

it works out OK. Early in the morning, or later in the evening, we’re still up at the same time.

Kassidy  

Yeah, so my early morning is her evening. So right now it’s almost nine in the morning, my time. And your time. I think it’s six p.m. There’s definitely still a lot of time. While we’re both still awake to talk. You know, I think we talk at least minimum once a day still. I mean, it’s been that way for, for a while.

Dani  

Video calls. So I see her every day on the phone. We have this app that I follow her on called Life 360. So it tells you where she is. It’ll even tell you so I hate it because I log in and it’ll say, “Kassidy, is 8937 miles from you.” I’m not going on this thing anymore.

Kassidy  

See, for me, I don’t feel like I’m that far away. It does not feel like I’m you know, almost 9000 miles away. It really doesn’t. I’ve made we’ve had one moment where I’m like, man, it feels like I’m the other side of the world. But for the most part, I don’t feel like I’m super far away. I think my mom would disagree. She’s like, it absolutely feels like you’re on the other side of the world. 

Dani  

Yeah, it does.

Ashley  

I had that experience as well from my mother when I moved away from home. 

Dani  

Oh yeah. 

Ashley  

It was that same, same vibe totally. And I think you know, we live in the age of the internet, which is really great for being able to still stay connected. So it does feel like you are closer than you physically are so. 

Dani  

Thank goodness I don’t know what I would do if I couldn’t see her. 

Kassidy  

Lots of letters.

Dani

Yes!

Kassidy

Lots of mail.

Ashley  

Yeah, you get lots of mail and get the Polaroid camera, and you can send a picture every time. 

Dani  

Yeah. 

Ashley  

So Dani, have you built any community with or know others who share that condition with you?

Dani  

Yes, we went to an event that was centered around people with symptomatic obstructive HCM. And I’m still talking, we have a group on Facebook. And then there’s another patient advocacy group that I’ve met several people on there. They have a group on Facebook as well. And I’ve gotten to know several people that way.

Kassidy  

And I think when people are first diagnosed, or when my mom, especially when she was first diagnosed with this disease, there was a lot of loneliness and feeling like no one else is experiencing what I’m experiencing. And so I think being given that opportunity, and having these advocacy groups available to her, has helped immensely. And knowing that she is absolutely not alone, there are other people who experienced the same thing. 

Dani  

Yeah, it’s great.

Ashley  

That’s exactly what we’re trying to do on The Mighty as well. So I love that you have that type of community support, because it is just so incredible to have and so powerful.

Dani  

It is, it really is.

Ashley  

So my last question for you is, you know, what, if anything, have you gained on this journey beyond the actual physical treatment of CAMZYOS?

Dani  

Oh, I think just a lot of wisdom about life in general. Never take anything for granted. And don’t sweat the small stuff. And just appreciate everything. I don’t know, once you’ve been pretty sick, you have a whole different lens on the world. And you’re just extra thankful for small things. Feeling good is not a small thing, but I mean, it’s a huge thing. It just puts everything in perspective, money doesn’t really matter. Because if you don’t feel good, you can have all the money in the world. And it’s not gonna matter.

Ashley  

That’s a great answer. Because I think too, something we talk a lot about in The Mighty community is we celebrate the “small wins” because somebody who is dealing with chronic fatigue may be getting out of bed that day is their win and that’s fine. 

Dani  

Yeah, exactly. 

Ashley  

Thank you so much, both of you, for sharing that personal experience. It’s something that I like to say a lot. But even if you’ve talked about your journey a million times, it is still something that you’re being vulnerable and doing and being so open and authentic, and myself and our community really just appreciate that vulnerability.

So, moving into some of our last sections here of the podcast, we like to go into Self-Care Corner, where we ask about, you know, what self-care practices? Have you been trying, or have been helping you recently? So we can do the same order that we did at the top, so I can answer the question first, go to you Dani, and then to Kassidy.

So, for me, I would say I have been trying to just keep myself accountable more, in all honesty. And it’s been really good self-care for me because it’s being accountable to my relationship and being accountable to my own health, and being accountable to my needs has been a really important thing in helping me feel really good about myself. And so I’ve just been making myself be accountable. And it’s been in such surprising ways that has been such a self-care practice for me. What about you, Dani?

Dani  

I like that. My self-care is more physical; I like to try to build my immune system.

Kassidy  

I think self-care for me, being in Australia and coming here, not knowing anybody, has been just really making sure I get out of my comfort zone and being putting myself in social situations. Playing rugby for several different rugby teams, always saying yes to new people that I meet. And that’s been wonderful. I’ve already made many friends. That part of self-care for me has been extremely fulfilling. And it’s made my almost two months here phenomenal. It’s been amazing.

Ashley  

Wow. I didn’t realize that’s how recent it was, and to have all that’s incredible. That’s, I’m very impressed.

Kassidy  

It’s been great. And the people here are lovely. And they’re from all over the world. And they just love meeting new people. And they’re just so warm and welcoming. 

Dani,  

And we’ll have to find out who they are and tell them to be mean. So she comes home.

Kassidy  

I know I did tell my mom I was like, I’m not sure when I’ll be coming home and it might be a little bit later than I originally planned. She was like, “Six months, right?” I was like, “Maybe two years? I don’t know.”

Ashley  

At least it’s a good reason right? At least it’s because you’re enjoying it so much. So I’d love to get into our next question. So here at The Mighty, we like to use it as a verb sometimes, but really talking about, you know, when we think about The Mighty, we think about feeling empowered, whether that’s about your health or your symptoms, whatever that looks like. So I’m going to ask this question, we can go in the same order again. But what made you feel mighty this week or recently?

So for me, I spoke up a lot this week for my needs. And it was really hard because I was speaking up to family. And I obviously didn’t get the full reaction that I wanted to with setting boundaries but I did make that clear. And that made me feel really good after the, you know, stress of setting a boundary. But I’m very glad I’ve done it, because it’s not been something that I’ve been able to do in the past. So that made me feel Mighty this week. What about you, Dani?

Dani  

What made me feel Mighty was all the, the steps I’m getting in that I could have never gotten in before.

Kassidy  

I’m gonna kind of answer my mom’s question a little bit too, because I feel like my mom had a Mighty moment earlier this week where she was at work. And she’s just a very big advocate. And I think she, she knows how to be an advocate for herself. So she’s a very good advocate for others. So her and I were talking about work, and I actually entered it made me think about that, that I think that that was a Mighty moment for your mom to advocate for other people that you work with.

And then a Mighty moment for me this week, I joined another rugby team, and it was my first practice with them on Wednesday. And it was so much fun. I had a great time. And it was lovely. And I’m actually super excited to go again next week. And we played touch rugby, it’s super fun, and it’s on the beach and mainly in Australia. It’s phenomenal. It’s gorgeous. And yeah, it was a great time and I felt really Mighty.

Ashley  

Dani, what advice would you give to those who in the symptomatic obstructive hypertrophic cardiomyopathy community when advocating for themselves with their doctors?

Dani  

You have to be persistent. Keep calling, and just be your own advocate, you really have to, even if you’re uncomfortable with it, you have to.

Kassidy  

I think one piece of advice that I would give to caregivers or a support system, trying to support other people with obstructive symptomatic hypertrophic cardiomyopathy, is to really listen to the symptoms that they are experiencing. Like I said earlier, at the beginning when she was having symptoms, but we didn’t have a diagnosis, it was, “Oh you need to work out, oh you need to go on a diet, oh, you need, you know, drink more water.” No, it is a 100% the symptom, and you have to believe that they are not lazy. It’s not that they aren’t interested in pursuing goals and, or anything like that. It is 100% the disease. And I think that’s the number one thing, for sure, is just listening to the symptoms.

Ashley  

Thank you both so much for that advice, specifically, but just in general, thank you for being here today. Thank you for sharing this story. Thank you for being so open.

Dani  

You’re welcome. Our pleasure. 

Kassidy  

Yeah. Thanks for having us.

Ashley  

Thank you for listening to this episode of The Mighty Podcast. Please stay tuned for some important safety information about CAMZYOS. And thank you to Bristol Myers Squibb for sponsoring this episode. Additionally, thanks to Dani and Kassidy for sharing their story. Dani and Kassidy have been compensated on behalf of BMS for their participation in this program. 

Additionally, if you want to continue this conversation, head over to TheMighty.com or download the Mighty app to become part of our community. We’d love for you to follow us and give us a rating and review on Apple Podcasts or Spotify. Or if you’re listening on The Mighty give this page a heart. Join us on our next episode and stay Mighty! 

IMPORTANT SAFETY INFORMATION

CAMZYOS (mavacamten) may cause serious side effects, including:
Heart failure, a condition where the heart cannot pump with enough force. Heart failure is a serious condition that can lead to death. You must have echocardiograms before you take your first dose and during your treatment with CAMZYOS to help your healthcare provider understand how your heart is responding to CAMZYOS. People who develop a serious infection or irregular heartbeat have a greater risk of heart failure during treatment with CAMZYOS. Tell your healthcare provider or get medical help right away if you develop new or worsening shortness of breath, chest pain, fatigue, swelling in your legs, a racing sensation in your heart (palpitations), or rapid weight gain.

The risk of heart failure is also increased when CAMZYOS is taken with certain other medications. Tell your healthcare provider about the medicines you take, both prescribed and obtained over-the-counter, before and during treatment with CAMZYOS.

Because of the serious risk of heart failure, CAMZYOS is only available through a restricted program called the CAMZYOS Risk Evaluation and Mitigation Strategy (REMS) Program.

• Your healthcare provider must be enrolled in the CAMZYOS REMS Program in order for you to be prescribed CAMZYOS.
• Before you take CAMZYOS, you must enroll in the CAMZYOS REMS Program. Talk to your healthcare provider about how to enroll in the CAMZYOS REMS Program. You will be given information about the program when you enroll.
• Before you take CAMZYOS, your healthcare provider and pharmacist will make sure you understand how to take CAMZYOS safely, which will include returning for echocardiograms when advised by your healthcare provider.
• CAMZYOS can only be dispensed by a certified pharmacy that participates in the CAMZYOS REMS Program. Your healthcare provider can give you information on how to find a certified pharmacy. You will not be able to get CAMZYOS at a local pharmacy.
• If you have questions about the CAMZYOS REMS Program, ask your healthcare provider, visit www.CAMZYOSREMS.com, or call 1-833-628-7367.

Before you take CAMZYOS, tell your healthcare provider about all of your medical conditions, including if you:

• are pregnant or plan to become pregnant. CAMZYOS may harm your unborn baby. Tell your healthcare provider right away if you become pregnant or think you may be pregnant during treatment with CAMZYOS. You may also report your pregnancy by calling Bristol Myers Squibb at 1-800-721-5072 or www.bms.com.
  If you are a female and able to become pregnant:

• • Your healthcare provider will do a pregnancy test before you start treatment with CAMZYOS.
  • You should use effective birth control (contraception) during treatment with CAMZYOS and for 4 months after your last dose of CAMZYOS.
  • CAMZYOS may reduce how well hormonal birth control works. Talk to your healthcare provider about the use of effective forms of birth control during treatment with CAMZYOS.

• are breastfeeding or plan to breastfeed. It is not known if CAMZYOS passes into your breast milk. Talk to your healthcare provider about the best way to feed your baby if you take CAMZYOS.

Before and during CAMZYOS treatment, tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Taking CAMZYOS with certain medicines or grapefruit juice may cause heart failure. Do not stop or change the dose of a medicine or start a new medicine without telling your healthcare provider.

Especially tell your healthcare provider if you:

• Take over-the-counter medications such as omeprazole (for example, Prilosec), esomeprazole (for example, Nexium), or cimetidine (for example, Tagamet).
• Take other medications to treat your obstructive HCM disease.
• Develop an infection.

How should I take CAMZYOS?

• Take CAMZYOS exactly as your healthcare provider tells you to take it.
• Do not change your dose of CAMZYOS without talking to your healthcare provider first.
• Take CAMZYOS 1 time a day.
• Swallow the capsule whole. Do not break, open, or chew the capsule.
• If you miss a dose of CAMZYOS, take it as soon as possible and take your next dose at your regularly scheduled time the next day. Do not take 2 doses on the same day to make up for a missed dose.
• Your healthcare provider may change your dose, temporarily stop, or permanently stop your treatment with CAMZYOS if you have certain side effects.
• If you take too much CAMZYOS, call your healthcare provider or go to the nearest hospital emergency room right away.

Possible side effects of CAMZYOS

CAMZYOS may cause serious side effects, including heart failure (a condition where the heart cannot pump with enough force).

The most common side effects of CAMZYOS include dizziness and fainting (syncope).

These are not all of the possible side effects of CAMZYOS. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088. You may also report side effects to Bristol Myers Squibb at 1-800-721-5072.

Please see US Full Prescribing Information, including Boxed WARNING and Medication Guide.

INDICATION

CAMZYOS® (mavacamten) is a prescription medicine used to treat adults with symptomatic obstructive hypertrophic cardiomyopathy (HCM). CAMZYOS may improve your symptoms and your ability to be active. It is not known if CAMZYOS is safe and effective in children.

Thank you for listening to this episode of The Mighty Podcast, and thank you to Bristol Myers Squibb for sponsoring this episode. Join us on our next episode, and stay Mighty!

 

© 2023 MyoKardia, Inc., a Bristol Myers Squibb company.

CAMZYOS^® is a trademark of MyoKardia, Inc.

 

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