Heart to Heart with Anna
Revitalize your spirit and connect with the vibrant congenital heart defect (CHD) community through 'Heart to Heart with Anna,' the pioneering podcast that has been inspiring and informing listeners since 11-12-13. Join us as we dive deep into the personal journeys, triumphs, and challenges of Survivors, their loved ones, esteemed medical professionals, and other remarkable individuals within the CHD community.
With unwavering dedication, our heartfelt conversations bring to light the stories that need to be heard. Gain invaluable insights, expert advice, and a sense of empowerment as we explore the multifaceted world of CHD. Our mission is to uplift, educate, and enrich the lives of every member of this incredible community.
Embark on a transformative listening experience where compassion and understanding thrive. Discover the resilience and unwavering spirit that resides within each person touched by CHD. Together, let's build a community where support and knowledge flourish, bringing hope to the forefront.
Tune in to 'Heart to Heart with Anna' and embark on a remarkable journey that will leave you inspired, enlightened, and connected to the beating heart of the CHD community.
Heart to Heart with Anna
From Heart Block to Myotonic Dystrophy: A Survivor's Tale
What if your heart's rhythm was out of sync from birth, yet you persevered to defy medical odds? Join us as Gwenyth Murphy, a resilient second-generation congenital heart defect survivor, shares her compelling journey of managing complete heart block and other heart conditions. From coping with an abnormally low heart rate as a child to receiving her first pacemaker just before college, Gwenyth provides an inspiring look at the evolution of her treatments and the groundbreaking procedure she anticipates.
Gwenyth's story takes a fascinating turn as she recounts the unexpected diagnosis of myotonic dystrophy, a condition initially masked by her heart defect symptoms. Discover how this genetic muscular dystrophy was finally identified through persistent symptoms and a critical health crisis after childbirth. Gwenyth sheds light on the often delayed and misdiagnosed nature of the condition, emphasizing the importance of comprehensive medical evaluations and genetic testing in uncovering interconnected health issues.
Self-advocacy emerges as a crucial theme throughout this episode. Gwenyth's experience underscores the necessity of seeking second opinions and consulting specialists to unravel the complexities of managing multiple health conditions. We delve into her daily strategies for coping with myotonic dystrophy, including medications, physical therapy, and mobility aids, and explore the emotional and mental resilience required to navigate such a challenging medical landscape. This episode is a powerful testament to perseverance, the importance of support, and the relentless pursuit of well-being.
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my cardiologist at the time. He was very insistent. He was like there is something going on here. There's something tying it all together. There's too many one-off features, there's got to be something. But he really pushed for me to get seen by genetics.
Speaker 2:Welcome to Heart to Heart with Anna. I am Anna Jaworski and the mother of an adult with a single ventricle heart. That's the reason I'm the host of your program. Today's guest is Gwyneth Murphy, and she is a second generation congenital heart defect survivor. She was born in 1977 in Neenah, Wisconsin, with third degree AV block. She was also diagnosed with a bicuspid aortic valve and cardiomyopathy.
Speaker 2:As an adult, Gwyneth is married to Joe, has a son named Tyler and two cats, Oreo and Taz. She enjoys photography, various fiber arts and other creative outlets. She is currently working on finishing her mother Sharon's last project, a cookbook of family recipes. Gwyneth is also a contributor to my latest book series, A Heart of a Heart Warrior, where she talked about growing up with a mother who had a heart defect and how she and her mother lived their lives with CHD. Today we're going to talk to Gwyneth about a different condition she also has, which may be the cause of her congenital heart defect. Welcome to Heart to Heart with Anna, Gwyneth. Thanks for having me. Well, I'm so happy to have you on the program and I want to start by briefly talking about your heart condition and the treatments that you've had so far.
Speaker 1:The heart condition I have is a rare one. It's called complete heart block, which means the upper chamber and the lower chamber don't communicate to each other. So that meant that as a kid my heart rate was in the low 40s and 30s until I got a pacemaker, which I got that about 10 days before I went off to college when I was 18. And I'm actually awaiting my fourth device now. That will be on August 27th. So I've had three devices. Each one has been a little bit different. The first two were dual chamber, which means there's leads in the upper and lower chambers of the heart. My last one, the upgrade to a CRT device, which means that there's a lead in the right ventricle, the left ventricle and the right atrium.
Speaker 2:Oh, wow. So there's three leads instead of just two.
Speaker 1:Yep, and this next device. They're hoping to abandon one lead and add a fourth one. That's going to be what they call conduction system pacing. It's a new style of pacing which is supposed to use a more natural heart rhythm. A lot of times with pace vectors they're not really synced up because of the wires. So this new style of pacing is supposed to solve that issue. So we'll see. Hopefully it does.
Speaker 2:Interesting. So you said abandon one but add a fourth. But really that would still be three, right? You still have three active leads.
Speaker 1:I believe so yeah.
Speaker 2:So you're seeing the history of electrophysiology. I mean, you're one of the pioneers, you're making it happen, you're going along with it while it's happening.
Speaker 1:Yep, pretty much the last time I was in the office I actually looked at the chart in my EP's office, that's like all the different devices, and I thought they'd just kind of been waiting as long as they could. But then I was looking at this chart and they really didn't have a device that would fit me until like 1989. So that makes sense why they waited so long. Oh, wow.
Speaker 1:With all the people that were much too big for my body type, so it would have been a huge mess. Luckily I have what they call an escape rhythm, so I was able to wait as long as humanly possible to get that device done.
Speaker 2:Right, I had David Franco on my show years ago and he was a little boy when he got his first pacemaker. And as a little boy there's no way he could put a pacemaker where an adult normally would, so it ended up in his stomach, in his abdomen area.
Speaker 1:Yeah, that's what they do. For some of the younger patients I know they have complete heart block. They have it first in their stomach and then they move it, when they get older, under the collarbone.
Speaker 2:Right, that's what David had happened to. Is that how it went for you, or, since you were an adult, were they able to put it under the clavicle to begin with? They were able to put it under the clavicle to begin with.
Speaker 1:They were able to put it under the clavicle to begin with, which is lucky. Yeah, I've never been so lucky. As I said, I had that underlying rhythm which wasn't synchronous, but it's like that backed-up pace around your ventricles. It kind of kicked in and that's what allowed me to stay so long without getting the bite.
Speaker 2:It wasn't greatest, because my heart rate was in the 30s and 40s, which isn't all that good, but nothing, though it's amazing to me that you were able to survive with your heart rate being that low. But I remember from your story that you wrote for the Heart of a Heart Warrior that you talked about pretty much just surviving while you were in high school. You would go to school and you would come home and sleep and sleep, and sleep until you had to go back to school again. No wonder if your heart rate was that low. That that's all you could really do.
Speaker 1:Yep, pretty much as a kid, I think I slept average of 14 to 16 hours a night. It really was just a matter of keep going until they had the technology that would do better for me. So, nowadays I don't think they would do that. I think they would just do it right away. But back then it was more of a wait as long as possible, and then we'll do it, that's what they did.
Speaker 2:I think that all doctors and hospitals are a little bit different and it's a cost benefits analysis.
Speaker 2:And what is the risk versus the benefit, and when you're dealing with somebody who's so small, it's a really scary risk that you take. So I understand if you had this escape rhythm, them thinking oh, let's just hold on a little bit longer. And look at what's happening now. With medical technology and the advancements that we have, it seems like overnight they're coming up with new technology to help people. So if you had been born today, things would be so different.
Speaker 1:That's definitely true. I mean when I think they started really considering it as when I was about 12, and then every year they kind of look at it again. But as when I was about 12, and then every year they kind of look at it again. But as old I was listening, they weren't in any hurry, but then obviously I would not have been able to function in college if I didn't have a device. There'd have been no way.
Speaker 2:No, no, it doesn't sound like you would have been able to have any quality of life much longer right, exactly, and a very nice, just practitioner.
Speaker 1:I think finally was like you do understand, it's not a matter of if, it's a matter of when. She was like the sooner you do it, the better it probably would be. And she kind of had that little bit of a heart-to-heart talk with me and I was like, okay, and my mom she'd had those surgeries and she was like this is your body, so you need to decide when you're ready for it, which I really appreciate her letting me take control of that, because a lot of kids don't get that control.
Speaker 2:No, they don't, and I think your mom had a more in-depth understanding, since she herself had a heart defect. Yes, and she wanted to be as considerate of you as she could be. That's a tough decision for a teenager to make who wants to feel that they need a device in their body I mean, I don't think anybody does. But I think it's even harder when you're a teenager and you want to be just like everybody else, even if you know you're not just like everybody else.
Speaker 1:Right, yeah, but I mean I think I did it at the right time for me. I think younger wouldn't have worked out as well for me. I think I chose the right time to do it and I think everything came full circle at the right time because I was able to take advantage of the newest technology development done. So, I was able to take advantage of that technological jump by waiting that little bit of extra time too, which, in the long run, has made things, I think, easier or better for me.
Speaker 2:It's good. It's interesting sometimes how things just have a way of working out the way they're supposed to. Yep.
Speaker 3:Heart to Heart with Anna is a presentation of Hearts Unite the Globe and is part of the Hug Podcast Network. Hearts Unite the Globe is a non-profit organization devoted to providing resources to the congenital heart defect community to uplift, empower and enrich the lives of our community members. If you would like access to free resources pertaining to the CHD community, please visit our website at wwwcongenitalheartdefectscom for information about CHD.
Speaker 4:The hospitals that treat children with CHD, summer camps for CHD survivors and much, much more. Embark on a heartwarming odyssey with Baby Hearts. Press your gateway to uplifting stories for the CHD community. Introducing the Heart of a Heart Warrior book series inspiring those born with heart defects and their loved ones. Discover the heart of a mother, the heart of a father and my brother needs an operation. Books celebrating strength, love and familial support. Visit babyheartspresscom and be part of our loving community. Uplifting hearts, one story at a time.
Speaker 3:You are listening to Heart to Heart with Anna. If you have a question or comment that you would like addressed on our show, please send an email to Anna Jaworski at Anna at hearttoheartwithannacom. That's Anna at hearttoheartwithannacom. Now back to Heart to Heart with Anna.
Speaker 2:Gwyneth, I mentioned at the top of the show that you had written for my book, the Heart of a Heart Warrior, and in the book you went into a lot of detail about your mother's heart condition. But for my listeners who haven't read the book yet, can you tell us a little bit about your mom's condition and how it was treated? She?
Speaker 1:congenitally corrected transplants of the great vessels For her. They knew when she was at your feet that she had something wrong, but they couldn't figure out what it was because the technology wasn't quite there yet and she'd had a cardiac cath and she'd always saw a cardiologist every year. But it wasn't until she was in her mid-20s that they finally figured out what exactly the heart defect she had was, which was a CCTGA. She had all the what you call the bells and whistles with it. So she had the ASD, the BSD. Some of the valves were a little bit weird. They were not fully functioning valves.
Speaker 1:So she had her open heart surgery in 1976. During that surgery they closed her ASD but they left the BSD alone because it was working for her Sure, which is kind of weird how that works, but it was working for her. So they let it alone and they were supposed to close the two holes and then they were supposed to do something with the valves and they ended up just closing the ASD because whatever was with the valves was working for her. She kind of kept going and going and then I think probably around the time I was in high school, she had a cardiologist tell her I don't know what else to do for you, so you just keep doing whatever it is that you're doing. That's what she did, and then, as I got older and started having more issues, I found that there was a whole new specialty, just for us adults.
Speaker 1:And I was able to convince her to go back and see a cardiologist.
Speaker 2:And when you did that, you discovered that you had another condition you didn't know about, didn't you?
Speaker 1:Yes, it took a few tries and then the doctor finally said oh, my aortic valve is a bicustate valve. But it's kind of a weird bicustate valve. There's technically three leaflets, but the one is undersized and attached to the other one, so it functions as a bicustate valve even though it has two normal leaflets and one underdeveloped leaflet. And because it's connected to the other one, it functions as a bicustate valve so that's kind of interesting learning that, like I thought all I had was this electrical thing. But you know I also have the structural.
Speaker 2:So you, poor thing. You have a little bit of everything, don't you? But then, yeah, we learned at the top of the program as well that you have a different condition and that possibly this condition is what accounts for your heart conditions. Can you tell us what myotonic dystrophy is and how you received that diagnosis and the first signs of that?
Speaker 1:Yes, so myotonic dystrophy is a class of muscular dystrophy. It's a little bit more uncommon one. There's three types that they know of. There's a fourth that they're researching, I think. So there's a congelative form, a type one and a type two. So it is a form of muscular dystrophy, but it doesn't always appear until you're older. But in doing mine, they realized I have a congelative form of it, just a more mild version. So I didn't really start having issues with it until I got to be an adult, at least noticeable issues. But when you go back and look at childhood, it was pretty clear that there were issues then too. It's just everything. Was what's kind of under the heart defect issue?
Speaker 2:Sure, yeah, everything was kind of under the heart defect.
Speaker 1:Yeah yeah, like the low muscle tone and delayed speech and all that kind of stuff. They just figured it was part of the heart condition, but that may not have been the case.
Speaker 2:So you said you had low muscle tone and what else.
Speaker 1:A low muscle tone, late to speak, because almost two before I started speaking and almost two before I started walking. And then, as I got into college, I started having a lot of trouble with TMJ really, really, really bad TMJ. When I went to the oral surgeon for that, they told us well, this has been an issue for a long time. We must have just gotten used to it. Because at that point they realized the muscles in the jaw weren't working, and neither was the cartilage. This in the jaw was completely worn away as well.
Speaker 2:Oh my goodness, it was completely worn away.
Speaker 1:This has been going on for years and years. You must have just gotten used to it until it became a critical point. At that point I couldn't eat food or anything like that. I was basically drinking broth because I couldn't eat any food because my mouth was so bad. So later on we figured out that it was this kind of muscular dystrophy thing going on. It was like oh well, that's why that's the reason for the TMJ, that's the reason for having a little muscle tone and not really having any strength and that kind of stuff.
Speaker 2:I can see why that might have been overlooked previously. Because you were really on survival mode and you were spending so much time sleeping, you wouldn't have had a whole lot of opportunities to see some of these issues.
Speaker 1:Right, exactly, and some of them didn't really pop up until later on. As far as being diagnosed with it, after I had my son I got really really sick. I ended up septic, septic-flexed and nearly died, but after that I was very unwell and it was kind of a why am I not getting better? But I think that kind of triggers some of the more latent issues that come along with the muscular dystrophy portion of it and all of a sudden I really was having pain with muscles every time I was using them and things like that. Probably if I hadn't had my son, if I hadn't gotten so sick, they probably never would have realized that this is what it is until either further down the line or when I was really sick from it, because it brought all those underlying things that I'd been used to up front if that makes sense.
Speaker 2:So the medical community knows that myotonic dystrophy is genetic. So do you know if anyone else in your family has been diagnosed with that condition? Or maybe you suspect? Oh, I bet that person had this too.
Speaker 1:I did a lot of the genetic testing after both my mom and my dad had passed away, so I'm not really sure, but it's entirely possible. It would make sense. Yeah, a few other people also had this muscular issue. Looking back through history, it would kind of explain some of the things that have been chalked up as autoimmune issues, because they can kind of masquerade as autoimmune sort of a thing.
Speaker 4:Okay, because they can kind of masquerade as autoimmune sort of a thing. Oh okay.
Speaker 1:So a lot of people are personally full and having trouble with this, and it's not uncommon for it to be misdiagnosed. First. There's like a myasthenia, like a myasthenia gravis, that's often a first misdiagnosis because it presents a lot of the same sort of things Pee and muscle pain and brain fogs, that kind of stuff.
Speaker 2:Wow, and it sounds like what some of my friends who have fibromyalgia complain of as well.
Speaker 1:Yeah, that could be. I went through like five different things, five different things, before they finally figured out that this is what it is. I tried to solve a genetic specialist. You have to match every single clinical feature of this, so send the genetics off and see what that says.
Speaker 2:And so did that doctor say to you that, okay, now we know, because of the issues that you've been having all your life, now we know that it's this myotonic dystrophy. Is that the doctor who said, oh my goodness, this could be what caused your heart condition?
Speaker 1:My cardiologist. At the time he was very insistent. He was like there is something going on here. There's something tying it all together. There's too many one-off features. There's got to be something. But he really pushed for me to get seen by genetics. But he really pushed for me to get seen by genetics. One of the first things for some people that shows up as they get older is all of a sudden they develop a heart block. That's one of the things that is how you know you might have dysmyelotonic thing is the heart block. It's not uncommon at all for it to develop in your 30s or 40s and then all of a sudden you're wondering, well, why do I have this? And then, if you have a doctor that keeps pushing and trying to figure out, why did this patient all of a sudden have this? It's one of the most common symptoms of the myotonic is developing heart block later in life.
Speaker 2:This content is not intended to be a substitute for professional medical advice, diagnosis or treatment. The opinions expressed in the podcast are not those of Hearts Unite the Globe, but of the hosts and guests, and are intended to spark discussion about issues pertaining to congenital heart disease or bereavement. Gwyneth, you've dealt with so much, my dear, so much Living with a mother who has a heart defect, having a heart defect yourself, then discovering, oh my goodness, it's not just a heart defect, but it's also this other condition which is a form of muscular dystrophy. You've been such a good advocate for yourself. Can you give me some advice that you would give to other CHDers who think that they are also experiencing other symptoms that are maybe not heart-related?
Speaker 1:Don't be afraid to get a second opinion. Or if you think I'm having all these muscular issues, don't be afraid to make an appointment with a neurologist yourself, because a lot of times people get hung up on well, there's this issue, we know there's this issue, and then they don't want to look further. So it's really important to be like okay, I know myself that there's some other reason that all this is happening. If you think you have a muscular issue, go see a neurologist. They can pinpoint it. It took a lot of years. It probably took me about 10 years to figure out what exactly it was that was causing it. About 10 years to figure out what exactly it was that was causing it it was.
Speaker 2:It's got to be persistent and I wouldn't say go around to all different doctors, because then you get a reputation or what occurred that sometimes they'll see that and then they kind of brush you off Because they may be afraid that you're a hypochondriac, but you had distinct issues that you were dealing with and it sounds to me like your cardiologist really took to heart the problems and the complaints that you had and that he's the one who actually pushed for you.
Speaker 1:Yes, he did push a lot for me, which I'm very grateful for. I mean, he pushed for me for this. He pushed for me for the issue that I have, that nobody else was believing me that I have some sort of bleeding issue, because this is not supposed to be happening After every minor procedures, or I'm not supposed to be getting these random bruises. This is not normal. So I guess, yeah, find a doctor that will listen to you. If your doctor doesn't listen to you, don't be afraid to get a second opinion, because sometimes they get stuck in their ways. I think that happens to everybody sometimes. Or for some of the pediatric patients that are now adults, that doctor has seen them for 20 years already. A new set of eyes might be needed. My primary care physician was a really great doctor, but wasn't really willing to look past all the things that were already known, whereas my cardiologist is like there's something going on here. He's a really good guy.
Speaker 1:If your doctor's not listening to you, find a new one, don't be, afraid to go get a new one, don't be afraid to go get a second opinion, don't be afraid to be like no, that kind of annoying patient, you know.
Speaker 2:I know there's something going on here. Well, it's a squeaky wheel that gets oiled. So, yes, you have to be that squeaky wheel sometimes. That's one of the things I loved about the heart of a heart warrior was we had a number of people who, just like you, they knew they had other issues. People weren't listening to them. Jessica Carmel did a wonderful job about talking about the issues she had with her gallbladder and good heavens, it took her two years before finally somebody believed her and said, well, look, all of your tests come back normal, but you're still having all these issues. Let's just take the gallbladder out. And when they did, sure enough, there was an issue there. So I think you're right. Sometimes you have to really push. You have to be willing to change doctors and not think that it's all in your head. I don't quite know what the issue is.
Speaker 1:But I know there's something. So she happily referred me over to another specialist and now they're looking at all the reasons why I might be feeling yucky right now. You got to find that team that does not dismiss you or think that they know everything just because they're the doctors. Sometimes the patient knows best or it's really not all in their heads. You really really don't feel good. Sometimes there's big hospitals that are known for their care, but sometimes you got to go to the slightly littler guy and they're going to be more willing to look maybe for Libros instead of horses.
Speaker 2:Well, I think the interesting thing there is that sometimes when you go to a smaller hospital, they don't have quite as many patients they have to see every single day and they will actually take time with you, whereas some of the bigger hospitals and I'm just saying some of the bigger hospitals folks, I'm not discounting all big hospitals, but I have seen with some of the bigger hospitals that they have so many patients that they have to see and you end up getting put on wait lists because there are so many patients that are needed to be seen that they pretty much want to get you in and out quickly and they don't have the time to spend to really address issues that you may have. So if it's not something that's life-threatening, you may feel intimidated to even bring it up with the doctor.
Speaker 1:Right, I go to Children's Wisconsin, which is a very good hospital, and I also go to the Nestor Adult Hospital, which is also a very good hospital. They're not huge, not tiny. It's not huge, but it's kind of in that sweet spot where it's big enough that they have all the stuff they need. But it's not super small either. And I think, especially for cardiac reasons, I can't say enough for children with Cotswold because they really do a good job in their clinic. That's so good to hear and I know they're not on a lot of lists because we are a little bit smaller of hospitals. But I think people discount them sometimes and they really shouldn't, because they're very good with what they do, especially on the cardiac side of things for adults and for kids.
Speaker 2:That's good to hear. So what role do you think genetic testing should play in the life of a person with a serious heart condition?
Speaker 1:I think some people don't like genetics because they don't trust the genetics. But I think be willing to be that for lack of a better word lab rat and have your genetics tested. It can only help future generations, because the melatonin dystrophy wasn't even identified on a gene until like the mid-90s. There's things now. They're probably still trying to figure out what gene is causing it. So for me it's not a bad thing to see if they can get a gene test done, a full panel done, because at the very worst you're just going to help out somebody else in the future because they're going to be able to see oh, now all these people have this genetic marker that we thought was a variant of unknown significance.
Speaker 1:Now, all of a sudden, all these people have this variant. Now we know that it's connected to this particular illness.
Speaker 2:Yeah, I agree with you there 100%. So were they able to provide you with some kind of treatment after they diagnosed the myotonic dystrophy?
Speaker 1:Yes and no. It's kind of one of those ones that's also kind of rare, so everybody's still trying to figure out what works for it. I am able to get stuff for the muscle pains or the muscle aches, or when my muscles are stiff. There's a medication I can take. Now that they gave me Eastport version yes, Now I have a plan, so now I know if I go in for half-full business or something like that that they need to be aware of the myotid dystrophy which can Sometimes if you have a cardiac surgery or another surgery.
Speaker 1:It can affect how they do anesthesia and things like that. I mean, if they're slightly alive, it always needs a bit more of the anesthesia than they think I do. I'm not sure, though that's why, if that's just some other thing, but it helps overall because it gives them something to rule out. If I am not feeling well, they can say, well, this is, it is, and now they can also try the different medications. See what will help me if I get the muscle pain and the muscle cramps and the stiffness and all that kind of stuff.
Speaker 2:So is there physical therapy they can do to help you with that.
Speaker 1:Yeah, I have done physical therapy. As long as you try and keep the muscles loose and it prevents stiffening. So I did do physical therapy for about 10 weeks and I have a whole list of exercises to do at home. Their goal is to make sure that you can do it at home, so they gave me all the equipment I needed, like the bands, you know, resistance bands and stuff like that. So, yeah, as long as I do 10, 15 minutes of those a day, that helps keep everything loosened up and I don't get as stiff.
Speaker 1:If I'm going out to a festival or something, though, either I have to recognize that I'm going to have a really stiff back and really stiff muscles and have trouble getting in the car on the way home, or I have to kind of suck it up and have someone bring some sort of mobility device, like a wheelchair or something, so that I don't get as stiff Wow, and it's more so, which that takes a lot to kind of get over.
Speaker 2:It does, I think, mentally. It's so hard mentally and emotionally. I mean, you're a young woman and your mom instilled this can-do attitude in you from the very beginning.
Speaker 2:So to all, of a sudden think, well, I can do the festival, but I no get out of that chair. You could do it Because she had that can-do attitude. But I'm sure if she would have known oh my goodness, my daughter has this form of muscular dystrophy, she would have been understanding and she would have just been happy for you to be out in the fresh air, exactly, exactly, and enjoying the festivals, because that was such an important part of your life with her.
Speaker 1:Yes, exactly. So again I'm telling myself it'll all be fine. It's just everybody gets overwhelmed and you just kind of work through it.
Speaker 2:But you're doing the right things. You have doctors right now who are trying to get to the root cause instead of just treating your symptoms. They're trying to get to the root cause. Instead of just treating your symptoms. They're trying to get to the root cause of it and treat that, which I think is amazing. Now you know that this is an inherited disease. Is this something that you worry about for Tyler or any of your other family members?
Speaker 1:I don't worry about it for Tyler, because they screen him when they screen me and he doesn't have the genetic disposition for it. Oh good.
Speaker 1:That part is good, so it's like the first one is 50-50 one with like Huntington's disease, which is like a 50-50 chance. So we lost out on that one. At this point I'm the only child. All of my uncles are in their late 50s and 60s, so if it was going to pop up for them it probably wouldn't have by now. It could have just been a spontaneous thing. I don't know. I can't really say for sure.
Speaker 2:Or maybe something recessive. Your family had it a long time ago, but it wasn't expressed, but it was carried along.
Speaker 1:It's technically supposed to be a dominant gene, but I don't know.
Speaker 3:Yeah, it's supposed to be dominant.
Speaker 1:My mom had the exact same body build as I do, so it's possible that she also has some form of it. I don't know. I really can't say for sure. Did she ever?
Speaker 2:complain of some of the symptoms that you had. Did she ever complain about being sore?
Speaker 1:No, I mean we have in our family something we call the Murphy bask, which everybody's baths go out and they can't move for like days. I mean that could be Wow, that could go along with it. I don't know, but it's kind of a running joke in our family that you get the Murphy bask and then all of a sudden you can't move again for days because your bath is just completely locked up. So that could be what the Murphy Baskin is. I don't know.
Speaker 2:I remember reading in your story in the Heart of a Heart Warrior that your mom was so good at we're going to do this and then we're going to take a rest and she was really good at pacing herself. And who knows, maybe part of that was that she was starting to feel stiff Her joints or her muscles would start to feel stiff and she knew she had to relax or else she couldn't move on.
Speaker 1:I don't know. There's always been something that, even for very little it's, we'll do a little bit, we'll stop, take a break, do a little bit, take a break up, take a break a little bit, take a break. It's just learning how to pace from a very early age so that even as an adult trying to get stuff done, I don't really have a problem pacing myself and I'm really good with it. I can't do it, I can't do it, and oh well, it's just going to have to wait. So I mean, that's just how it goes sometimes.
Speaker 2:Exactly, that is so true and that's definitely something that you learn as you get older. I think people when they're younger can be very impatient and no, I have to have it done yesterday, but you've learned a very important life lesson as a young woman.
Speaker 1:Yeah, I think so. It's so important to face yourself, because it's not worth feeling too much and then you can't enjoy yourself for several days. I've definitely been on that end of things too, where I've just pushed and, pushed and pushed and then I'm out of commission for three, four days and it doesn't help anybody. So it's better just to pace yourself.
Speaker 3:Right and do what you're doing.
Speaker 1:If people can't appreciate that, then that's a dumb problem, not a you problem. I love that that's so true, yes. My mom taught me too. If people can't handle that, that's on them, that's nothing to do with you.
Speaker 2:Absolutely Well, gwyneth, I can't believe our time is up already. This went by so fast. I have never heard of myotonic dystrophy until you told me about it. So I'm really glad we had a chance to bring this to light because, who knows, there could be other people out there in the CHC community who have been experiencing these same symptoms and just didn't know that this may be partially what has caused their heart condition. So thank you so much for coming on the program and explaining it to us today. No problem, thank you for having me. Well, friends, that does conclude this episode of Heart to Heart with Anna. Thanks for listening today. Please consider becoming a patron of our program by visiting wwwpatreoncom. Slash heart to heart and remember my friends, you are not alone.
Speaker 3:Thank you again for joining us this week. We hope you have become inspired and empowered to become an advocate for the congenital heart community. Heart to Heart with Anna, with your host, anna Jaworski, can be heard at any time, wherever you get your podcasts. A new episode is released every Tuesday from noon Eastern time.
