Jennifer Van Syckle  0:00  
Life enters an entirely new chapter after having an issue with your heart. And we're going to rejoin our guests Kelly as she talks about life after having a spontaneous coronary artery dissection. Thank you for joining us for this episode of Talking Health in the 406, where we're one community under the Big Sky. I'm your host, Jennifer Van, Syckle longtime healthcare worker turned health educator.

Kelly Little  0:31  
This isn't a joke. This wasn't a dream that you didn't wake up from. This is your life. And I wish I you know, I wish in hindsight, I could have said that I just, you know, bounced right back, but it took a while. And when I finally did read about the discharge paperwork, that she wrote me, that Mayo Clinic had a bunch of information, and they had a Facebook group of folks that have this condition that I kind of started to join, I was immediately welcomed into the group. And I learned the most from being in that group, and subsequently reaching out to Mayo Clinic. And what they said is that about 10 years ago, SCART SCAD, as they call it, which stands for spontaneous coronary artery dissection was largely unheard of. And commonly misdiagnosed, it currently is misdiagnosed frequently. And about 90% of patients that have SCAD are women. And it mainly occurs in women between the ages of 30 to 50 years of age. And unfortunately, of those women, the higher occurrence in the postpartum phase, about 40% of women have had a baby, and they're recovering from that. And so some early research into that, you know, obviously, there's a connection, a hormonal connection there. And the sad thing for those women is the heart damage, and the effect of the tear tends to be much greater. It does occur in men, and the men that do have this happen, they find that they were recently exerting themselves very heavily, maybe they had ran a marathon or done some very heavy lifting. But so those were, those are the demographics and present day, they don't, researchers don't really know. But they're, you know, there's obviously trends and they're studying that. For myself, the most shocking part of all this was the gender disparities. When I looked into American Heart Association, the research showed that women are 50% more likely to be misdiagnosed during a heart attack. Women are underrepresented in cardiac research and clinical trials, even though Heart disease is the US leading killer of both men and women. And women are underrepresented in cardiac rehab. So for myself, that was a big part of my recovery, mentally, as well, was attending cardiac rehab. And it was just letting myself be able to trust that I could get back to doing things that I love, I could get back to taking a hike. And granted it was going to be a long road because I had to let this artery heal itself.

Jennifer Van Syckle  3:19  
So Kelly, before this, when you left the hospital had they said, you know, keep your heart rate below this or keep your blood pressure below this or what

Kelly Little  3:26  
I mean, that's a great question. It was vague. It was vague because you know, there's there's just not a lot of research. And so the cardiologists main discharge for me was it because I had had this cath, cardiac catheterization, no lifting on that arm, because that was really critical, the right arm that it went into for like a week. And then ongoing, you know, the physical activity would be definitely limited, as you see how I heal, and that was the, the really devastating part when I did the research of this. And she did tell me that in the when I was in the hospital, there is a risk of recurrence. And again, without knowing causation or having a lot of research, they don't really know when how or why that would happen. So in the early days, that was the main focus is making sure that artery heals. And there was a general understanding of anywhere from three to six months, because that's just kind of how an artery would heal, but they don't know you know, that you could have a complication and folks that were stented, which I wasn't if a stent was placed, they would have, they would have more contraindications for lifting, and they would be on more blood thinners. The cardiologist told me that I would be on a blood thinner, but she said it's kind of an area that they just don't have any data showing that the blood thinner is necessary. And so as a cardiologist, she said her guidance was to give me the blood thinner. And to put me on beta blockers, just because that's kind of a standard of care everything we can and yeah, hope something sticks. Absolutely. But it wouldn't necessarily increase the healing process. But so she did tell me they, they've given an estimated percentage of about 20% risk of recurrence. And again, that can happen anytime in your lifetime. And that would be where they say look at, you know, keeping like a lower heart rate, and limiting extreme exertion. But it's a, it's a generalization. So you kind of work with yourself on that. And for me, that's where the cardiac rehab really helped me establish those. I did get chest pains in the healing period and kind of heart palpitations and felt the tiredness. And what I've learned since then, as those are all common things that anyone who's had a heart attack experience, when your hearts healing, they said, you do get palpitations, I've been lucky, I don't have any ongoing chest pain. But a lot of folks that have had this happen to them will get have an unknown cause they don't know why. But they get chest pains. And they can take like something for the chest pain, they're assuming it's associated with SCAD, because the person never had it before the SCAD but I haven't experienced that. And because my cardiac rehab experience went so well for me, I've been able to go back to exercising, however, unfortunately for some folks, they, for one, maybe their anxiety has kicked in, but also they had potentially more serious heart damage. And they've been advised not to, or they had to repeat SCAD and then they're they've been advised to so a generalization I was given to answer your question was to try not to have my heart rate go about 130 I wear a Fitbit, and to definitely not overexert myself. So that would mean exercise. Yeah. And just getting to the point that you're like, you know, high intensity workout, the call them like HIIT workouts, or in the event that you're doing something and you have cardio, I'll just use an example in Montana, your snowmobile get stuck in a something and you're, you know, vigorously trying to get out of something. Those are things that I have to stop and you know, think that this is not the first 37 years of my life. And I can't do that, you know, if you're caught that adrenaline moment, but I have been lucky. And I say that because as this Facebook group that was really pivotal in my recovery. And I I've networked with so many folks, that isn't the case for everyone. And so I think that's a good message. Because you can look at someone and think they look completely normal, they look completely healthy. Maybe you heard they had something in their health history. But they are having a lot more struggles with this. And their recovery wasn't really linear. And they've had a lot of setbacks in their life being put on the beta blocker, I'd mentioned my blood pressure was always really low my entire life. It lowered my blood pressure. So significantly, I fainted a couple of times. And that landed me back in the ER just you know, within the three days of being home not knowing was it a repeat SCAD. And then it was just found that I'm on the lowest dose of a beta blocker, essentially, because I have really low blood pressure.

Jennifer Van Syckle  8:27  
So what does cardiac rehab? What is cardiac rehab? What does that look like?

Kelly Little  8:32  
So cardiac rehab was a fantastic program. And I was so lucky to have access to it in the town that I live. Unfortunately, there's folks in rural areas that don't have a cardiac rehab, maybe their hospital is too small. They just don't have funding for it. But essentially, you're going to be doing after a cardiac event, you're gonna start getting back into doing physical activity. But because of having damage to your heart muscle, you need to be monitored. So what that looks like is going to be individualized. And you're going to work with typically an RN who runs a cardiac rehab, and then an exercise physiologist that is trained to read EKG monitoring. So you're going to be hooked up to a Holter monitor. And you're going to do simple things like walk on a treadmill. Maybe it's a recumbent bike. Maybe if you feel up to what you can do a slow jog. You're going to try to maybe lift some light weights, you're going to try to put a little stress on your heart and gradually do it in a safe controlled environment. And it's twofold. Unfortunately, with heart damage as they the heart muscle doesn't repair itself, but we want to see what pumping action you have. And they measure that with it's called the ejection fraction. By doing exercise, you can improve that ejection fraction so So we want to see that increase. And then also there's a mental health component too, because if you've had a cardiac issue, you've had lifestyle changes, you've had health problems. So we're walking

Jennifer Van Syckle  10:11  
around knowing 20% chance of reoccurrence. Exactly.

Kelly Little  10:14  
Exactly. And even what we call like the traditional heart attack patient, and that's where, you know, I wanted to do this podcast, because that's kind of where the health disparity piece comes in. Or traditional heart attack a patient in America is an older man with that comes into an ER clenching his chest. But any cardiologist anyone who works in cardiac rehab, anyone who studies us will tell you that heart attack symptoms present differently in women. And it's not just men that have heart attacks. So part of that cardiac rehab too, is increasing the person's ability to kind of just get back to our normal life and not feeling limited, always. But mending that, too. So you know, they've had, maybe it's a second heart attack or something. And depression is a common symptom to follow that lifestyle change. So that's what the cardiac rehab is for, it's kind of looking at what you can do going forward. Some people too, might need that push. So for me, I was you know, not the not that typical patient, I wanted to get back to exercising. So they're kind of doing the opposite. They're kind of saying, you know, unfortunately, we got to slow you down, and let this let it heal. But that's what their job is. And that's what they do an excellent job of is meeting the patient where they're at. And it's that secondary level of care. So the cardiologist is going to do what they can, whether it's a bypass, whether it's a stent, whatever they do on an OR, and they're going to do something pharmacological, typically, you're going to be on a beta blocker or blood thinner, but then how you recover in your life and how you improve that injection fraction, is the third piece, and that comes with cardiac rehab. And unfortunately, folks were during COVID, a lot of our cardiac rehabs were closed. So a lot of our patients were doing it telehealth. And there was some early success with that. And we're kind of looking to that in the future with Apple watches and how we can get telemetry to do it at home, and how to reduce barriers so that if you live where you don't have a cardiac rehab, or you live in Montana, where you're in a snowstorm, and it's hard to get there, we can help get people moving safely. I'm just a huge proponent of cardiac rehab. And as someone who lives with this condition now, that's kind of an I network with people from all over the world and the Facebook group I'm at. I'm always that's kind of we're a broken record. But we're always encouraging folks to get to cardiac rehab. And it's, it's highly underutilized. And I did want to say to you that Million Hearts initiative us Million Hearts initiative, they're trying to have a goal of 70% I believe it was I could be incorrect on that of cardiac rehab participation, because the research shows that it's dose specific, that you're less likely to have another heart attack based on how frequently you attend cardiac rehab. So a general guideline, I think, is about an inch Medicare, and most insurances will pay for about 30 sessions. But for various reasons, folks might not be able to attend it. But however many sessions you can attend, has a correlated risk to reduced future heart attack. So we recognize that it's underutilized in this country, and particularly for someone like me, who had no prior health conditions. It really is accredited to the quality of life I have today. And I also wanted to thank Mayo Clinic research because it was two female cardiologists who are leading U.S. research group on SCAD. And they have a research study going on for I'm a participant of it, that is growing, and they network with some folks in the UK and Australia, I believe. But they were, the research was brought up by two women who had this condition, I believe in about 2012. And we're just kind of perplexed by the lack of research and kind of just like, you know, they were discharged from the hospital and you have this rare condition and they were kind of there's there needs to be more research and Dr. Sharon Hayes and Dr. Marisa Tweet and I'm a patinet of  Dr. Marisa Tweet at Mayo Clinic and they heard these women out and kind of branched off and havestrated their own center at Mayo Clinic on SCAD research. So most of the data that I have been given as someone who had this in 2021 and going forward because really accredited to them and the women that reached out to them

Jennifer Van Syckle  14:56  
and said you go to Mayo Clinic now for like a yearly checkup or what is what What is your Mayo Clinic?

Kelly Little  15:01  
Telehealth? Yeah, okay, yep. And that was a silver lining due to COVID. My insurance was able to cover that the telehealth piece. And the good news was I had all the care necessary where I lived. And the the main indicator that they look at to be part of the research study is the angiogram. Because again, the CT scans don't catch that arterial tear. And so that's kind of if some, somebody might be misdiagnosed with it. And to be part of the research study, they want to see that angiogram, which that would have

Jennifer Van Syckle  15:33  
happened in the cath lab, exactly, put the wire in your radial artery. And

Kelly Little  15:38  
so it was a pretty simple research agenda, I just, you know, gave him my information. And they kind of have a in perpetuity, to bidirectional referral. So if I was to have any going forward any cardiac test, or that I have done outside of Mayo Clinic, will be transferred to Mayo Clinic so they can continue to research and study those health outcomes. And then the goal would to be to get some sort of clinical trial with a medication because again, the beta blocker is kind of just that they give most folks with SCAD isn't specific to this condition. The beta blocker is just a generalized kind of heart medication. And they want to kind of research and hopefully get something more specific to having their arterial tear, and obviously, also know what causes it, potentially, they won't be able to prevent it. But again, they can look at medications that could hopefully prevent it more.

Jennifer Van Syckle  16:39  
They're like, do they think there's like a genetic component or anything? Like? That's a great question.

Kelly Little  16:43  
And they told me in the hospital, they don't think so because siblings, they don't find really have it. So which is interesting, but they look at kind of with the new age of 23 and Me and your genetic profiles. The latest research they found is there is a name, I'm using the term incorrectly, so I apologize, but a genetic profile of folks that have this. So in other words, that you can have the genetic profile and not have a SCAD. But those that have this SCAD have this. And one of the really early interesting findings they had. And again, it kind of goes back to you're so healthy, you know, like, gosh, this isn't you're not a heart attack person. They said that they found these people have almost no plaque in their arteries. And they said it was an interesting finding that it's almost like a protective factor against having plaques is folks that have these genetic conditions that could predispose you to a SCAD. So it's just kind of an interesting finding when they put the data together in these research studies, because they found that it's that no one that has this, almost no one is having any sort of plaques in their arteries. So they're kind of studying that more like what is the the genetic predispositions. There are some rare instances where siblings have had it. And I also need to mention too, there's a condition called FMD, which I was screened for, and I was found negative for it. And it's just another one of these things they don't know enough about. But they do find a correlation to it. And sometimes they call it Pearl-String arteries. It commonly occurs in women, and they think it happens as you age. So like you wouldn't necessarily be born with it. But something in the aging process changes the arteriopathy. And you're more likely to have this and what

Jennifer Van Syckle  18:41  
does FMD stand for do you know or, fibromuscular

Kelly Little  18:45  
dysplasia, and it's a unfortunate condition, my heart really goes out. Again, I haven't really definitively been ruled out for it. But it would increase your recurrence rate for having this again. And my understanding is it's not exclusive to an artery so you can get it in your carotid arteries, you can get it in your kidneys. And for those folks to that general kind of what is your day to day like look, life is much more restricted. Because you have this artery that is more likely due in blunt terms break or pop again, I don't think it can be surgically fixed because it would kind of just be in your body somewhere. So how they check that to Mayo Clinic screened me It requires additional screenings, like a high level CT to actually view the arteries. And then they have found a few other unknown I should say, like Genetic and Rare conditions that correlate to SCAD. But in general, the the term SCAD stands for spontaneous coronary artery dissection. And so that's kind of why they characterize what I have is that because it's spontaneous and it's an unknown cause, and as I said they they did know that there is a cause correlation to pregnancy. And they're very much studying a hormonal relation, which of course doesn't answer how it happens in men. But so their their common thought that the they've told me is it would be multifactorial. So something happened, which caused the inner lining of the artery to kind of spasm and tear. And that tearing of it caused blood to pull up and occlude the artery to block it up the cracks, okay, yes. And so in the postpartum phase, there's a mechanism that causes that more likely to happen to the postpartum women. And men, they think, you know, something exertion, you lifted really heavy, you pulled something heavy. And that mechanism caused the artery to tear. But again, I don't fit any of those categories. Mine happened in my sleep. And there are folks that have that too. And another research correlation was with migraine headaches, and I do have migraine, I have had migraine headaches, a history of that. And they said about 40% of folks have a history of migraine headaches. So again, that kind of correlates to something in an arteriopathy.

Jennifer Van Syckle  21:10  
While it's lucky you were you know that you live in a large Montana town where you could have access to an emergency department that could monitor you all night, check your phone and levels, have cardiac rehab, you know, which, luckily, a lot of our facilities in Montana can transfer people recognize when it's getting a little bit more than they can handle. Yep. And then for cardiac rehab, I mean, I imagine, you know, there's huge cost savings, there's like four, almost 5000 to 9000 per year per person. And so, you know, I feel like even if you don't have insurance, it's a worthwhile thing to try and get insurance and then to try and get that service, I should say.

Kelly Little  21:48  
And then Kellyanne, did you?

Jennifer Van Syckle  21:49  
Were you published? Did you publish your experience on this? Or have you tried to publish? I didn't.

Kelly Little  21:54  
So during this timeframe, I researched a lot of cardiac rehab, because again, that was a sticking point for me, is the under representation of women, and kind of that health disparity. And you hear that when you as a patient, I heard it, right. And it was an irony for me, because in my background, I studied public health, and I've, I'm aware of health disparities, and I researched them. But I mean, this was my experience as a patient, when I would talk to the RNs, and they said, it's very common women present differently, and they get my misdiagnosed more frequently. When I was initially in the ER, you know, that's a common one. Are you just having an anxiety attack? You know, I know, we don't know how to respond to that, well, maybe I don't know, I have chest pain. I said, I've never had an anxiety attack. But But why do you go to that, right? Because eat, and women have more challenges completing cardiac rehab, it just seems like because their caretakers, right. And I only had a couple other gals when I was in the cardiac rehab program, but statistically, it followed in the state in Montana, and then nationwide to that there's fewer women that participate. And whether they're, you know, we don't really know whether they were under referred, or whether they just didn't get the message that it's highly important. And then there is the insurance factor too. So um, most folks who have heart attacks, though, are at an older age and would be covered by Medicare, and Medicare definitely covers it. Medicaid does. But there are definitely private insurances that don't. And of course, as you alluded to folks that don't have insurance, and that is a deterrent to it. Just with all the research that you know, is behind this, I would definitely encourage someone to reach out to a hospital foundation to talk with someone if they can't afford it just some way. You know, most hospitals do have something and any, anyone who answers the phone in a cardiac rehab, will try to do something that works with you. Yeah, very worthwhile.

Jennifer Van Syckle  23:59  
And so how are you doing carrying around this statistic and everything? How do you think of that all the time in your day to day life?

Kelly Little  24:09  
You know, you would want to think that you don't and that's kind of where it was kind of two things. Am I going to put this in my rear view? And kind of just have it be this glip. And, you know, people have weird things that happen and move on. And virtually, I would say can't because of that risk of reoccurrence. And because of my own research and knowing that there's so much more that we need to do. I need to continue to advocate for it and be part of these research studies. Because again, if if my own people, if you'd call it that have this condition, didn't advocate and reach out, particularly to Mayo Clinic, I wouldn't potentially be where I'm at today. So I kind of feel there's no I wouldn't call it a sisterhood because we have wonderful men in that too. But there's an alliance of folks that we need to advocate for It's, but I would say to them lucky. And I want to make that clear. And I did have excellent medical care. And I was very lucky to have the family that I have. And so there again, there's folks that have, you know, other conditions that make their day to day life more restrictive. And folks that don't have insurance, as you said that live in even, we have many health disparities in Montana and don't have access to a cardiac rehab, or there still is much more that needs to be done in the first responder and medical community. It was a big success. Again, these two doctors, they alluded to Sharon Hayes and Marissa Tweed. They said in their board exams for cardiology, it just like a couple years ago became a question on how to something about SCAD. So it still is, you know, it's a well meaning doctor, of course, but it still is commonly misdiagnosed, I've heard horrible stories of people being accused of abusing illicit drugs. And you know, you can't point a finger because there's a ton of rare conditions in the world and someone can't know everything. But there is the health disparity that follows this, because it's well documented, that, you know, a woman can even experience just kind of like a light pain. And I've told people that too, I it wasn't the worst pain in my life, I've had worse pain. So it could have easily been, you know, I could have easily been discharged that night and just been told to continue to take and acids. And same as you know, in a man that is very healthy and doing these marathons, you don't think oh, they had a lifestyle conditioned cardiac arrest. And so we just need to educate first responders and our medical community to because we have the diagnostics, we have the troponin ns. And again, I had the indicators to show that but and I think we are getting there, because, as I said, the advocacy and our research study, our research study database has been exponential. They said in about 2020, it was like less than 500. Folks, you weigh less than that, actually, because it was just two. And now I think in 2020, we're in like 5000 7000 range, which is still low to get statistically significant results. But as we continue to promote it, and again, we get more of an accurate diagnosis will increase that. And that's the other really unfortunate thing, you know, is for folks to kind of think in their own medical history, that grandma that, you know, centuries ago, or when we we say to you know, look at your health history with cardiac and they died suddenly, and no one knows why. Or, you know, some sort of postpartum event. Historically, now, we think, yes, these were likely a scat event was completely, you know, unheard of. And we didn't, we wouldn't have known until we had the diagnostic of an angiogram, which is relatively new to, I guess, there's reason to be hopeful as my bottom line on that, and I'm thankful for the quality of life I have. But it doesn't, it isn't something that I can kind of just forget about, again, because I don't like taking the beta blockers they gave me as a for example, but it's just kind of one of those things that no cardiologist and, and no doctor wants to just say, just don't take them. Because they do. They make you more tired. So just little things like that. But I don't I also want to say that I've been very lucky in my, my own personal recovery. And for the record, my own ejection fraction, is basically back to what it was probably before I never had one before a heart attack, but so my heart function is very well. So I just want to say, you know that that isn't the story for everyone. And I always, you know, that's kind of why I advocate and why I'm doing these podcasts is because some folks can never, you can't want your ejection fraction gets that low, if they had a major SCAD you really can't repair your heart to get back up to that. That's why we all do what we do. And I'm more than happy to be a part of the research study, you know, whatever they want and to can you continue to advocate for it and let people know the symptoms of postpartum especially that comes up. And when I'm in more urban areas, you'll you'll meet like a nurse or a doctor that has had a patient like that, but in our rural areas where it doesn't happen much. It's still pretty unheard of,

Jennifer Van Syckle  29:31  
I believe that and I could see postpartum where they're saying, you know, bleeding, they're worried more about, you know, belly button down, essentially is probably one of the warning signs moms are getting chest pain, or anything like that.

Kelly Little  29:45  
And it's such a bizarre anomalous thing because you're thinking while you you're of child bearing age, so you're healthy in that sense, and you just had a baby may so it's like your we've had you on monitoring and all that so you're just kind of but the Good news with that too, as a message is spreading. But we do need to, you know, know that they need to be transferred to a high level of care, because again to the cardiac arrest and you know, potentially a serious medical emergency to like a level one, trauma is potential in those situations. So I do have just some kind of handouts for first responders because I do work with EMS now, and potentially kind of, I don't think they do. troponin is in the field, but they do do 12 leads, and just kind of add awareness to that you still can miss miss a heart attack or not. So cardiac arrest, but a heart damage with a 12 lead easily.

Jennifer Van Syckle  30:39  
And we can definitely have that on our website talking health and 406 dot m t.gov. Where everyone can download that. Absolutely.

Kelly Little  30:47  
And one thing I did want to mention kind of in how you said, like, how am I today and sharing my story, you know, you don't like to walk around, that's part of having a medical condition. And just how are you today, you know, and it's always kind of hard sharing stuff like that. But since I do work with EMTs, now, I shared this with a gal who works in a volunteer em T agency in Montana. And she told me, you know, that's really interesting, because I've had a call a while back, and the woman was in her 30s, and was completely healthy. Her 12 lead was normal, but her troponin was elevated. And they said, We should take her into the ER, and she said, that was really weird to me, because we've never, we wouldn't normally transfer someone without, you know, an abnormal 12 lead. So I think that, you know, just little stories like that and broaden our scope on time sensitive illness and injury. We've made a ton of progress on that, and Montana's had a lot of success with that. So absolutely.

Jennifer Van Syckle  31:45  
I love it, keep spreading the seeds, and something will grow from it, you know, get more and more education. And it's, it's amazing. I mean, I get goosebumps thinking how the labs were saying something's wrong, and you were saying something's wrong, and your body just knew you knew. And, yeah, we have to pay attention to the patients for sure. Well, thank you, Kelly. We appreciate your time and we appreciate your story. It's amazing. So hopefully, a very bright long SCAD no reoccurrence future. Thank you so much to Kelly for sharing her story and her journey through spontaneous coronary artery dissection or SCAD. With us in this podcast. If you would like more information on SCAD, or cardiac rehab or anything else you heard in this podcast, visit our website, Talkinghealthinthe406.mt.gov. And thank you for joining us for this episode of talking health in the 406 where we're one community under the big sky. Until next time, take care

Transcribed by https://otter.ai