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Tune into our bi-monthly podcast where we interview experts in the field to broaden the awareness of new HCM studies & advancements!
SPEAKER_2: Welcome to In the Thick of It from the HCM Society, a show that dives deeply into hypertrophic cardiomyopathy with leading experts in the field.
SPEAKER_2: We explore groundbreaking research, new approaches, and other exciting topics.
SPEAKER_2: Please enjoy today's discussion supported by an unrestricted educational grant from Bristol-Myers Squibb.
SPEAKER_3: Welcome everyone to another episode of In the Thick of It.
SPEAKER_3: My name's John Fritzlen.
SPEAKER_3: I'm a general cardiologist at the University of Kansas Health System of Kansas City.
SPEAKER_3: It's my privilege today to be a part of what will be a great discussion on all things defibrillators.
SPEAKER_3: I'm joined today by Hannah and Bethany from Heart Charged, as well as a return guest, our friendly expert electrophysiologist, Dr.
SPEAKER_3: Mark Link.
SPEAKER_3: Hannah and Bethany, do you want to start by introducing yourselves a little bit and tell us more about Heart Charged?
SPEAKER_4: Yeah, so I'm Hannah.
SPEAKER_4: That is Bethany.
SPEAKER_4: We both have hypertrophic cardiomyopathy, or HCM.
SPEAKER_4: We both have ICDs, or like we like to call ourselves.
SPEAKER_4: We're both Bionic Babes.
SPEAKER_4: Mine saved my life when I went into cardiac arrest at the age of 17.
SPEAKER_5: And then Heart Charged is our organization.
SPEAKER_5: We started to realize, wow, there's so many, especially young people living with undiagnosed heart conditions, but we couldn't find anybody to really connect with.
SPEAKER_5: And Hannah and I felt so lucky to have each other.
SPEAKER_5: So we decided to use the power of social media.
SPEAKER_5: And start Heart Charged, which has now grown into a real organization.
SPEAKER_5: And there we have over 15,000 community members and patients, all living with different types of heart conditions.
SPEAKER_3: That's fantastic.
SPEAKER_3: It's amazing what you all have been able to do and advocate for.
SPEAKER_3: Dr.
SPEAKER_3: Link?
SPEAKER_1: Yeah.
SPEAKER_1: Hi, I'm Mark Link.
SPEAKER_1: I'm a professor of medicine here at UT Southwestern Medical Center.
SPEAKER_1: I was recruited here about eight years ago to co-direct the HCM Center of Excellence here.
SPEAKER_1: And it's been going well.
SPEAKER_1: I came from Tufts where I directed the HCM Center of Excellence for 24 years.
SPEAKER_1: And it really is one of the highlights of my career to get to know patients with HCM and treat them.
SPEAKER_1: And the reason it's great is because you have all ages from 12 years old to 90.
SPEAKER_3: That's wonderful.
SPEAKER_3: And as I'm starting off my career, that's great to hear and hope to enjoy a long career in HCM like yourself.
SPEAKER_3: So let's lay some groundwork for today's conversation.
SPEAKER_3: And Mark, have there been any significant changes to ICD indications or recommendations over the years?
SPEAKER_3: Any kind of areas of controversy?
SPEAKER_1: Yeah, if you look at the 2020 HCM guidelines and the 2024 HCM guidelines, they're identical, no changes, but that's only for five years.
SPEAKER_1: If you go back to the previous iteration of the guidelines, many of the same indications for ICDs were there.
SPEAKER_1: But in 2020, the MRI findings were added.
SPEAKER_1: So that's been probably the biggest change in the American guidelines as we now look at MRI.
SPEAKER_1: Well, the European guidelines date from 2008, and they use a calculator that uses many of the same things that we use.
SPEAKER_1: And I view them as complementary, not competing.
SPEAKER_3: Wonderful.
SPEAKER_3: And I think others take a similar approach.
SPEAKER_3: I certainly kind of maybe start and lean on the ACC HA guidelines, but also complement the ESC and certainly some intermediate or kind of at-risk patients I'm concerned about.
SPEAKER_3: As a HCM general cardiologist, maybe my conversation is a little bit different than your conversation when you're visiting with an HCM patient regarding possible defibrillator.
SPEAKER_3: Tell us about that initial conversation with patients.
SPEAKER_3: I'm sure some come to you not knowing if they want a defibrillator.
SPEAKER_3: Others may have a model already picked out.
SPEAKER_3: Tell me how that conversation goes.
SPEAKER_1: Yeah, the first part of that conversation, just getting to know each other, when they've been diagnosed, the symptoms they've had, family history, their experience with living with HCM.
SPEAKER_1: For some people, they've lived with HCM for a long time, five, 10 years.
SPEAKER_1: For other people, they've just been diagnosed.
SPEAKER_1: And that's a whole different conversation if you've just been diagnosed compared to someone that's been diagnosed five years ago and knows a lot about HCM.
SPEAKER_1: So you get to know each other.
SPEAKER_1: Then, specifically, I'm an electrophysiologist, I'm an electrician as I tell my patients.
SPEAKER_1: So my two aspects with HCM are Afib and sudden cardiac death.
SPEAKER_1: If you don't have Afib, you don't have Afib.
SPEAKER_1: You are at higher risk through the lifetime, but you certainly don't need treatment for it until you get it.
SPEAKER_1: Sudden cardiac death is different.
SPEAKER_1: You can present with a cardiac arrest and die.
SPEAKER_1: And actually that's a fairly common presentation in HCM.
SPEAKER_1: Thankfully, it's less common now because resuscitation has improved dramatically.
SPEAKER_1: And so there are more resuscitated cardiac arrest victims now than there ever were before.
SPEAKER_1: Then you go over the risk factors.
SPEAKER_1: Clearly someone that's had a resuscitated cardiac arrest is at very high risk.
SPEAKER_1: And that's a class one indication or should be done for an ICD.
SPEAKER_1: The other indications are class 2A.
SPEAKER_1: That means we don't have as much data on it as we would like, but still the evidence points to these people with these risk factors should have an ICD.
SPEAKER_1: And that's massive hypertrophy defined as 3.0 cm, scarring of greater than 15 to 20%, family history of sudden cardiac death, a personal sudden cardiac death due to hypertrophic cardiomyopathy, a personal history of syncope that sounds arrhythmic or sounds concerning.
SPEAKER_1: All of those will get you a 2-way indication for an ICD.
SPEAKER_1: And then we go to non-sustained BT.
SPEAKER_1: Non-sustained BT is very prognostic in individuals under age 35.
SPEAKER_1: So if you see non-sustained BT in a 17-year-old, you're going to be very much more concerned about it compared to someone that's 60.
SPEAKER_1: And the other aspects of non-sustained BT is how long it lasts and how fast it is.
SPEAKER_1: So in the pediatric population, non-sustained BT will get you a 2A indication for an ICD, whereas in the adult population over the age of 35, it's a 2B or probably shouldn't be done.
SPEAKER_3: Thank you for that overview.
SPEAKER_3: And Hannah and Bethany, tell us a little bit about your first conversations with either HCM physician or the electrophysiologist and what was going through your mind when you maybe first learned that you needed a defibrillator.
SPEAKER_4: Yeah.
SPEAKER_4: So we were only diagnosed because of family history, because our aunt found out she had hypertrophic cardiomyopathy and so that got us going.
SPEAKER_4: I was the first out of our immediate family to be diagnosed with it.
SPEAKER_4: Do not realize how thick, how severe or that I was living with a heart condition as I was an active person playing sports, dancing in school, out of school.
SPEAKER_4: And then we, the ICD wasn't brought up for me until about like a year after I was diagnosed.
SPEAKER_4: They had seen that I was having, you know, type heart episodes and actually wasn't until I got an MRI because they had saw that my thickness had, you know, grown from the first year to the second year.
SPEAKER_4: And so they wanted to get better measuring of my thickness.
SPEAKER_4: So it was the MRI that told them, oh, you hit the qualifications to need an ICD implanted.
SPEAKER_4: And for me, you know, I was more grateful than like nervous about like, I thought, okay, scars are cool.
SPEAKER_4: Like I'm not too worried about that.
SPEAKER_4: You know, I'm not fully processing.
SPEAKER_4: They're telling me it's maybe this size.
SPEAKER_4: It was definitely bigger than what they said it was going to be.
SPEAKER_4: But then it was the fact that like for me, I felt when they told me I couldn't like, don't even watch scary movies, don't even do all this.
SPEAKER_4: I felt like I was living on eggshells.
SPEAKER_4: And so being presented that idea of an ICD where I'm like, okay, if I need to run or do something, I have protection and I don't have to rely on somebody knowing CPR or knowing where an AED is that I could kind of live my life because I was 16, you know, I kind of want to, you know, have energy and do things.
SPEAKER_4: So that was more of like, yay, okay, I feel like I can do something.
SPEAKER_4: And then the fact that it saved my life just six months after getting it, then it was like, oh, wow, yes, I really needed it.
SPEAKER_4: I do not realize obviously how high, you know, my risk factor, the fact that that would have occurred so soon into, you know, this journey of being diagnosed with it.
SPEAKER_4: And then of course, me, you know, having an ICD already being, you know, having a sudden cardiac, you know, arrest in history, how that then played for Bethany to then get her ICD.
SPEAKER_5: Yeah, so for me and my diagnosis, I got diagnosed just a couple of days after Hannah when we realized that HCM is genetic and we have six older brothers and a younger sister.
SPEAKER_5: So we were like, okay, we all need to get tested.
SPEAKER_5: And then Hannah's HCM was presenting more severe at time of diagnosis.
SPEAKER_5: And then I actually got to continue dancing, even though that wasn't pretty clear.
SPEAKER_5: They were always like, dance, like at 60%.
SPEAKER_5: I don't know what that means.
SPEAKER_5: But I went on to dance in college and then I had some pretty scary fainting episodes.
SPEAKER_5: So at the time, my HCM specialist decided that we needed to consider an implanted defibrillator and also knowing the family history of Hannah having one and it saving her life.
SPEAKER_5: And then I'll be honest, when I got shown my implanted defibrillator, it was an SICD and Hannah had an ICD.
SPEAKER_5: And it was very different from what Hannah had.
SPEAKER_5: And now Hannah's is very much hidden.
SPEAKER_5: And they're like, oh, yours goes on the side.
SPEAKER_5: The lead doesn't go in the heart.
SPEAKER_5: And when he showed me the device, he was like, oh, it's this, but like it's gone, it's gotten smaller.
SPEAKER_5: And then just for reference, I'm like five one and weigh under a hundred pounds.
SPEAKER_5: And the SICD is really not that small.
SPEAKER_5: So when I came out of surgery with the defibrillator and finally like faced it, I was like, wow, that's a lot bigger than I thought.
SPEAKER_5: And it really did stick out, but I did embrace it.
SPEAKER_5: I do love it.
SPEAKER_5: And it was like, wow, I needed this.
SPEAKER_5: And I was grateful for it because knowing that it saved my sister's life and that I could continue, you know, to live my life as normal as possible.
SPEAKER_5: And then to this day, I actually cannot dance anymore.
SPEAKER_5: And I had to give that up due to my HCM getting more severe.
SPEAKER_3: I really appreciate the insight and patient perspective.
SPEAKER_3: And this might be a good time for you, Mark, to kind of outline some of the types.
SPEAKER_3: We have the transvenous, the subcutaneous, and now the extravascular ICD and kind of talk through your approach to evaluating what device may be best for an individual.
SPEAKER_1: Yes.
SPEAKER_1: So I always say to the individual, you know, the first decision is, are we going to, do you want an ICD?
SPEAKER_1: So that should be independent of the type of ICD.
SPEAKER_1: So what are the indications and do you qualify and should you get one?
SPEAKER_1: Then once that decision is made, we now have three options.
SPEAKER_1: The oldest option is the transvenous ICD.
SPEAKER_1: That's been out for 25 years.
SPEAKER_1: That's a device that goes in the shoulder area, typically the left shoulder.
SPEAKER_1: The lead goes inside the vein and inside the heart.
SPEAKER_1: The advantages of the transvenous system is that it's smaller than the Boston Scientific sub-Q system, and it can pace people out of ventricular tachycardia if that's needed rather than just shocking them, and the battery life is 12 to 14 years.
SPEAKER_1: The sub-Q ICD, the first one out was by Boston Scientific.
SPEAKER_1: That's a device that goes on the side, the kind that Bethany has.
SPEAKER_1: That's about twice as large as the transvenous system, the boxes, the can is.
SPEAKER_1: It is big, it is big, and it hasn't gotten smaller.
SPEAKER_1: So it does, especially in tiny people, or people that don't have a lot of fat, it does stick out.
SPEAKER_1: Now you won't see it under the shirt, but it sticks out.
SPEAKER_1: And then the lead goes outside the rib cage over the heart.
SPEAKER_1: So the advantage to the sub-Q system is really the lead.
SPEAKER_1: It's not in the vasculature, so it doesn't get infected as often, and if it gets infected, it's easy to take out without any risk.
SPEAKER_1: The lead, we think, is going to last a long time.
SPEAKER_1: I've actually never seen a sub-Q-ICD lead fail, and they've been out for 12 years now.
SPEAKER_1: So that's a big advantage.
SPEAKER_1: And, you know, the disadvantage is the size of the can and that it's large.
SPEAKER_1: Now, the transfenous system that we talked about, the disadvantage of that system is the lead, because, as you can imagine, every time you move your shoulder, the ICD rubs over the lead, and over time, you know, you can wear out the insulation.
SPEAKER_1: And so, we think those leads are going to last, you know, 10 to 15 years, but we all know the younger the patient, the more active the patient, the shorter the leads last.
SPEAKER_1: And the newest kid on the block is the Medtronic EVICD.
SPEAKER_1: It stands for extravascular.
SPEAKER_1: This one got approved probably a year and a half ago now.
SPEAKER_1: And this one, the similarity to the Boston Scientific sub-Q is it's in the same spot where the Boston Scientific is.
SPEAKER_1: So it's mid axillary line on the left side.
SPEAKER_1: And then the lead gets tunneled up to the sternum, to the rib cage, and then gets inserted underneath the rib cage so it's closer to the heart.
SPEAKER_1: Because it's closer to the heart, it doesn't need as much energy to defibrillate a patient.
SPEAKER_1: And therefore you can get by with a smaller device.
SPEAKER_1: And in fact, the size of the device that is used for that, it's actually the same device that's used in the shoulder.
SPEAKER_1: So it is half the size of a Boston Scientific sub-QICD.
SPEAKER_1: The advantage of this one also is the lead.
SPEAKER_1: We think this lead is going to be very durable, again, because it's not having all that wear and tear of the device itself rubbing over the lead.
SPEAKER_1: The potential disadvantage, one, it's been out there only one or two years, so we don't have long-term experience with it.
SPEAKER_1: But I think our short-term experience has been pretty good.
SPEAKER_1: One of the other downfalls is that it's sensitive to P wave over sensing or over sensing the upper chamber of the heart, and therefore thinking you're in a faster rhythm than you are.
SPEAKER_1: Now Medtronic's done things to help with that, and it has really helped.
SPEAKER_1: So I'm a big fan of, actually, I like all three, but for my younger patients and younger, you know, changes as time goes on, but younger being less than 50 or 60, I really like the sub-QICD or the EVICD because of the longevity of the lead.
SPEAKER_1: So in my HCM patients, most of them are getting one of the subcutaneous systems.
SPEAKER_3: Great.
SPEAKER_3: Now, you mentioned earlier that you deal a lot with, or think about atrial fibrillation and sudden cardiac death.
SPEAKER_3: If they have a history of atrial fibrillation, does that change your strategy?
SPEAKER_1: Maybe just a touch, but not a lot.
SPEAKER_1: If the advantage of the transvenous system is you can put an atrial lead in and that can sense when they're in a fib.
SPEAKER_1: I'm not a fan of atrial leads though, especially in younger patients, because that gives you two leads to wear out.
SPEAKER_1: The Boston Scientific Sub-QICD and the EVICD have algorithms to detect a fib, and they do that by regularity, and they're not bad.
SPEAKER_1: So they can detect a fib also, as does the Transvenous Medtronic Single Chamber Device.
SPEAKER_1: So the biggest problem with, well, a fib is a whole other story, but the problem with a fib and people with ICDs is you can have very rapid a fib, and then the device thinks you're in a ventricular arrhythmia or a life threatening arrhythmia, and will shock you for it.
SPEAKER_1: And that's why it's pretty important for patients with HCM that have a history of a fib and have an ICD, that they're on beta blockers or chelsea channel blockers to prevent the heart from going that fast when and if they go into a fib.
SPEAKER_3: All right.
SPEAKER_3: And what about those who are more athletic, like Bethany and are in competitive sports, does the type of activity maybe make a difference on what sort of ICD that you might choose if they're in something, maybe potentially a contact sport?
SPEAKER_1: Yeah, the type of ICD makes a big difference.
SPEAKER_1: As we mentioned before, shoulder movement will wear out a transvenous ICD lead sooner than doing things without shoulder movement.
SPEAKER_1: For example, I have a 16-year-old golfer with HCM whose brother had three cardiac arrest who is getting an ICD.
SPEAKER_1: For a golfer, a transvenous ICD would not be a good idea.
SPEAKER_1: And so we're giving her the EVICD.
SPEAKER_1: For swimming sports also, the transvenous would be anything that's going to use your left arm, it's not so great for.
SPEAKER_1: So that's, you know, dealing with the lead.
SPEAKER_1: In terms of contact sports, the device is really tougher than the body.
SPEAKER_1: So it's extremely unusual that you're going to see damage to the device from contact sports.
SPEAKER_1: That being said, we're a little wary of it.
SPEAKER_1: We're not wild about people playing football with ICDs.
SPEAKER_1: People do it with padding.
SPEAKER_1: We're not wild about ice hockey.
SPEAKER_1: We're not so wild even about NBA basketball, but there are people in the NBA that have defibrillators and play professional sports.
SPEAKER_3: Right.
SPEAKER_3: Those are kind of unique situations and challenging and a lot more kind of their decision kind of making that go into that.
SPEAKER_1: Can I add something to that?
SPEAKER_3: Yeah.
SPEAKER_1: Which I think is really very important.
SPEAKER_1: For years and years, we've said that sports increases the risk of sudden cardiac death in HCM.
SPEAKER_1: And therefore, once a patient was diagnosed with HCM, we prohibited them from bigger sports or competitive sports.
SPEAKER_1: And that was in the guidelines starting 30 years ago.
SPEAKER_1: And what we know now is that exercise is actually good for patients with HCM.
SPEAKER_1: It increases their exercise capacity.
SPEAKER_1: It doesn't increase the risk of shocks.
SPEAKER_1: And it lowers the risk of all the other things we're worried about, like diabetes and hypertension.
SPEAKER_1: So if you look in the 2020 and the 2024 guidelines, exercise is actually recommended for patients with HCM.
SPEAKER_1: And as to the type of exercise, I tell patients, do what you like, because it's important to exercise.
SPEAKER_1: So do what you like, find something you like.
SPEAKER_1: And a good level of activity is that you should be able to talk while you're exercising.
SPEAKER_1: If you're ever gasping for air, so much that you can't speak, that's probably a little bit more vigorous than I would like.
SPEAKER_1: Although I will say, we've had a couple of studies of vigorous exercise and it does not appear even vigorous exercise to increase the risk of sudden cardiac death.
SPEAKER_1: So we really now have completely changed our tone and said that patients with HCM should exercise.
SPEAKER_1: There's still this feeling, though, it's hard to overcome 30 years of advice.
SPEAKER_1: And so there's still this feeling among many patients with HCM that they shouldn't exercise.
SPEAKER_1: And that's wrong.
SPEAKER_3: Absolutely.
SPEAKER_3: Completely agree.
SPEAKER_3: And Hannah and Bethany, how is life and activity and how things been after having your ICD?
SPEAKER_5: Yeah.
SPEAKER_5: So I'm actually now on my second ICD.
SPEAKER_5: I used to have the SACD.
SPEAKER_5: I was still dancing.
SPEAKER_5: I went to college for it.
SPEAKER_5: Like I said earlier.
SPEAKER_5: And then when I was told, unfortunately, I couldn't dance because of the wrist level.
SPEAKER_5: And then there was a recall on my SACD.
SPEAKER_5: So I now have an ICD.
SPEAKER_5: And then the whole purpose of getting that was because of the pacing aspect of it because of going into like, AFib or VT or SVT.
SPEAKER_5: But then I live a very active lifestyle.
SPEAKER_5: I try to do like cardio for 90 minutes.
SPEAKER_5: But as Dr.
SPEAKER_5: Link was saying, I just know my limits and so I can't run.
SPEAKER_5: If I run, I'm like immediately out of breath.
SPEAKER_5: I just can't keep up.
SPEAKER_5: So I very much have found like, what can I do?
SPEAKER_5: Oh, a little bit of StairMaster for like 10 minutes, 10 minutes, or, you know, doing the treadmill at a nice, like incline slow walk or doing like a bar, Pilates or yoga class.
SPEAKER_5: Because unfortunately, you have to know your limits and pushing it.
SPEAKER_5: And with HCM, I feel like just because it presents itself so differently, it's just being able to find that balance.
SPEAKER_4: I know, them are like sisters, and it's very different because I feel like I was scared out of exercising.
SPEAKER_4: So then the lazy person in me was like, okay, I'm content if this is my life now, right?
SPEAKER_4: Like, I'm not doing anything.
SPEAKER_4: And then I think it is an interesting, like, you know, and that's a whole other topic for a podcast of just how much has changed with research of looking at like, oh, we've been living with our condition for over 12 years now.
SPEAKER_4: So it has looked different from, you know, oh, wow, now this is more guidelines.
SPEAKER_4: Now insurance covers ICD is better now.
SPEAKER_4: Like, there has been so much in the journey of it.
SPEAKER_4: For me, it is finding it's hard to find a balance.
SPEAKER_4: Also, like, I was shocked when I was sleeping.
SPEAKER_4: So yeah, like you said, like, my risk for cardiac death wasn't because I was out playing sports and then I was shocked again while I was conscious on stage doing a lip sync battle, you know, and have video of that.
SPEAKER_4: If anybody wants to see somebody getting shocked by an ICD, you know, like, so it's it's ranged for me of like, hey, I wasn't really doing the most active things when, you know, my heart is going crazy.
SPEAKER_4: So it's been for me a little bit harder to to find the balance.
SPEAKER_4: And I think also a lot of patients, just the mental aspect of when you have been shocked, you are a little bit more scared to be like, oh, I'm putting myself a little bit more doing this.
SPEAKER_4: Do I do I want to feel out of breath or, you know, it does take time, you know, you know, you have to be a patient, patient to just like, okay, I can't do that today or okay, maybe let me walk around.
SPEAKER_4: But I think what Dr.
SPEAKER_4: Link said was such great advice of like, okay, if you can talk while you're doing it, do stuff you enjoy, because nobody obviously wants to exercise if you don't enjoy it, right?
SPEAKER_4: Like nothing's going to want to get you out of bed and, you know, do things that are fun.
SPEAKER_4: And I think for me and Bethany, like the questions that, you know, we have before we let you go, Dr.
SPEAKER_4: Link, is I think like placement has been something for us in our journey, like, my scar goes right alongside my left breast, and I thought that was standard.
SPEAKER_4: And then meeting other people, they're like, oh, wait, what do you mean?
SPEAKER_4: Like, your thing is behind your left breast.
SPEAKER_4: Like, oh, it's more up here on your chest.
SPEAKER_4: And it was like, oh, I'm grateful.
SPEAKER_4: My, you know, surgeon thought of a 16-year-old girl with braces was like, if I can hide it, you know, good for you.
SPEAKER_4: So I wonder like, how does age and gender, how much does that go in with like, the placement of these devices when you're considering that for the patient?
SPEAKER_1: Yeah, that's a good consideration.
SPEAKER_1: So one is the incision.
SPEAKER_1: I tend to make my incision in the fold of the shoulder so it fits in the crease line.
SPEAKER_1: But I'll also, occasionally, you can make it vertical, right where the bra strap would be or the swimsuit strap would be so it'd be covered.
SPEAKER_1: So some people would prefer that.
SPEAKER_1: Some women would prefer that.
SPEAKER_1: In terms of placement of the device, I like to get it under the breast because it's just so much better hidden there.
SPEAKER_1: The other reason I like that is it's further away from the shoulder.
SPEAKER_1: So it doesn't tend to have as much wear and tear on the lead.
SPEAKER_1: So that's my preferred location.
SPEAKER_1: You can also put it underneath the pectoralis muscle.
SPEAKER_1: The advantage to that is it's really very well hidden.
SPEAKER_1: The disadvantage to that is it's going to increase wear and tear on the lead because every time that muscle moves, it's going to move the device.
SPEAKER_1: So I'm not such a big fan of sub muscle placement of the ICD.
SPEAKER_1: In terms of the placement of the other two, they're both in the same side.
SPEAKER_1: That's going to be a mid axillary line incision, which the incision itself will rarely be seen.
SPEAKER_1: It will only be seen if you're wearing a swimsuit.
SPEAKER_1: And the other incision, there's an incision under the xiphoid.
SPEAKER_1: That's a smaller one.
SPEAKER_1: That's probably three quarters of an inch long.
SPEAKER_1: And again, that one's not exposed when you're wearing normal clothes.
SPEAKER_1: So for the sub cue and the EVICD, it's pretty standard placement of the decision.
SPEAKER_1: You really don't have much options in terms of where you're going to make those two incisions.
SPEAKER_4: No, thank you.
SPEAKER_4: That's really helpful.
SPEAKER_4: So as a patient, this has been great to hear your things.
SPEAKER_4: And of course, I think that's hard is like, yes, everybody has a different doctor.
SPEAKER_4: Everybody has their own, obviously, like preferences and things like that.
SPEAKER_4: And I think that's what me and my sister like to do is like, fight that, hey, this is shared decision making.
SPEAKER_4: And I love that first question you ask is, do you want an ICD, right?
SPEAKER_4: And consider the patient and what they currently are and what are they doing.
SPEAKER_4: And we have a lot of young women come to our page, sometimes not wanting an ICD because they are scared of what it's going to look like.
SPEAKER_4: And I think that's where having patients or brochures that show the variety of what ICD patients said, like you said with HCM, there's such a wide range of age.
SPEAKER_4: And we don't always want to see the older patients over 50 or 60 on the brochure.
SPEAKER_4: That definitely makes you feel older.
SPEAKER_4: But to know that, oh wait, young people do have this.
SPEAKER_4: And how can I still live my life when I am more concerned, perhaps, about the scars or the placement of the incisions for my life?
SPEAKER_1: Let me follow up that with another thing.
SPEAKER_1: So when it's time for the device to be changed, the entire device could change.
SPEAKER_1: We call it a battery change, but it's entire device could change, the lead does not.
SPEAKER_1: That is a time, if you don't like the placement of the defibrillator, is to talk to the EP doctor and tell him or her where you want it.
SPEAKER_1: I mean, you can't move it five inches, but you can certainly move it a couple inches.
SPEAKER_1: And so that's the time to have a discussion with who's going to do it.
SPEAKER_1: And the other discussion is device replacements are at higher risk of infections than initial devices.
SPEAKER_1: And so anytime you get a device replacement, ask for the antibiotic pouch to be put around the device because that lowers the risk of infection.
SPEAKER_1: And I'm a firm believer in any device replacement, they should have this antibiotic pouch placed.
SPEAKER_1: I don't care how old you are.
SPEAKER_1: You know, a device infection is horrible.
SPEAKER_1: So use the antibiotic and make sure that the surgeon or the EP doctor is going to use that.
SPEAKER_4: Well, I'm making a note now.
SPEAKER_4: Yeah, I get mine replaced in January.
SPEAKER_4: So, yeah, yeah, that's the time.
SPEAKER_1: If you want to, if you don't like where it is, that's the time to move it.
SPEAKER_3: Oh, great.
SPEAKER_3: I think we've kind of come to the end of our lot of time.
SPEAKER_3: So I want to thank you all for joining today.
SPEAKER_3: It's been an excellent discussion on all things defibrillators.
SPEAKER_3: Hannah and Bethany, thank you so much for joining us and providing that patient experience and perspective.
SPEAKER_3: It's so very important, you know, why we do what we do.
SPEAKER_3: So thank you and good luck with everything with Heart Charged.
SPEAKER_3: You guys are doing amazing things.
SPEAKER_3: Dr.
SPEAKER_3: Link, thank you again for your expertise and knowledge.
SPEAKER_3: It's always welcomed.
SPEAKER_3: So come back again.
SPEAKER_1: Happy to listen to and Hannah, Bethany and John.
SPEAKER_1: Great to see you.
SPEAKER_1: Great to meet you.
SPEAKER_1: And your stories are inspiring.
SPEAKER_5: Oh, thank you.
SPEAKER_5: So nice to meet you.
SPEAKER_5: Thank you both for all that you do and for caring for us HCM patients.
SPEAKER_2: Thanks for joining us on In the Thick of It, presented by the HCM Society.
SPEAKER_2: Make sure to subscribe to our show for more expert insights into the field of hypertrophic cardiomyopathy.
SPEAKER_2: For more information, check out the links in our show notes.
SPEAKER_2: We hope you will join us again for our next episode.