Computer generated transcript

Warning!
The following transcript was generated automatically from the content and has not been checked or corrected manually.

I am really honored to be joined by Julie Stevens, and Julie is a patient who's experienced familial hypercholesterolemia, and she's gonna share a little bit of her story with us today. Julie, thank you so much for joining us. Well, thanks for having me here. I'm excited to be here. So, yeah, my journey to my diagnosis, uh, was kind of a long journey. Um, I have a family history of high cholesterol in my family, and Early heart attacks. My grandfather passed away from a heart attack when he was 46 years old. And, um, despite that, I never got my cholesterol, um, checked until I was 21 years old. I did it at a health fair with a little finger prick test and the like And he was like, wow, your cholesterol is super high. You need to go get that checked out. So I did. I went to the doctor. The blood tests also came back high. But I kind of felt like all throughout my twenties that the doctors weren't really that concerned about my cholesterol. They kept on saying that I'm young. I'm healthy, I'm a healthy way. I exercise, and that, you know, that while I will probably need to be on medication someday, that they weren't in that big of a hurry. I was thinking about starting a family and they were OK with me waiting. So I remember asking them, I was like, do I need to worry about plaque in my arteries? And a doctor had told me, no, you have to have years of high cholesterol before that's an issue. And little did I know that was actually the scenario that I was in. I have 3 kids. I started on a statin, and then, um, a couple of years ago, my sister was having health problems, and she got tested for familial hypercholesterolemia, and it came back positive, and she knew that I was having issues with cholesterol, and so she told me to get tested. And I tested positive as well. So, I went to a cardiologist for the first time, and we did additional testing. I found out that I also have high LPA and atherosclerosis, which is pretty consistent with untreated FH and high LPA. So, yeah, that's, that was my journey to getting diagnosed and I definitely wish that my red flags would have You know, clue, clue clued me in sooner, but that, that's my story. This program highlights that we often focus on short term LDL numbers rather than the cumulative or lifelong burden of high LDL. Was there a specific aha moment for you when you realized that this was a long term cumulative issue and not just a single bad blood test? Yeah, so I actually specifically remember two aha moments. The first was being diagnosed with atherosclerosis and realizing that I do in fact have plaque in my arteries, that's when I realized, you know, this is going to be, um, a long term thing. This is, I'm gonna really have to get on my treatments and just cause I am, I was only 30 as I was a mom to young children. So that was a big deal to me. And the second one, so out of my 3 kids, 2 of my children have familial hypercholesterolemia. When we first got Cholesterol results back. And I saw, I mean, if you looked at them, you would never know that they had high cholesterol. They are healthy. They, they're super active. Um, you just never know. So when we got it back and I saw, you know, my 5 year old and my 9-year-old's cholesterol is super high, it hit me right there that that was me when I was their age, except for we didn't know. And it's something that I dealt with essentially since birth and something that I'm going to have to struggle with, probably for the rest of my life. So that was another aha moment for me. From your perspective as a patient, what does a truly successful conversation about your lipid management look like? What specific things does a healthcare professional do or say that make you feel heard and like an active partner in your own care? Yeah, I think, I think to, to feel like it's a successful conversation, like you said, is, is really to be treated like a partner in As a part of the care team, I really appreciate it when my healthcare provider explains things to me and like really teaches me about my condition and tells me why treatment matters, why we're doing the course of treatment and the medication that we're doing. Um, it gives me confidence in our treatment plan. And also when my healthcare provider really takes the time to ask me about my concerns, ask me how I'm doing, and treat me like a person, and that he actually cares about my well-being, I think That leads to successful talk about lipids and stuff like that. From a patient's side, what are the biggest real world barriers to starting or staying on a therapy? What, whether it's concerns about side effects, cost, or just understanding why it's so important. Yeah, so some barriers for me that I've dealt with personally is I, I sometimes feel overwhelmed by how much medication I have to take. I do an injection every 2 weeks. I take 2. Cholesterol-lowering pills, uh, low-dose aspirin every night. And it just gets to be a lot having to, to remember to take them, and then to get them refilled and take them, and it's just long-term. It just feels like a lot. Also, with cost. Insurance was a big deal too. Insurance denied my injections a couple of times, so it took months of appeals to get through to that. Luckily for me, I haven't had much issues with side effects. I do know that is a big barrier for Some people, my sister, specifically, my son's had a couple issues. And then also, I know out there, there are some misconceptions about cholesterol and how to treat it and statins in general. And I think that can be a barrier for some people too. What is the most effective way a clinician has helped you navigate those barriers? What kind of conversation helps you stay motivated and adherent to your treatment plan for the long haul? My biggest My motivation is just seeing my blood test results before and after medication and seeing that they actually work and they're lowering my cholesterol. That's really motivating to see. Also, just being able to address concerns and possible side effects that might be popping up with my provider and not feeling silly for asking. So with my son, we had an issue. We addressed it with his provider and he helped us. Able to tell, is this really the medication or is this something else? And having that open communication helped us not just abandon the medication altogether. Also, regular check-ins, I was going every 6 months, knowing that I would be getting my blood drawn and being held accountable for if I was following my treatment plan or not. I've actually just graduated to every year now instead of every 6 months, so that's exciting. Um, but yeah, just having an open communication is key. In our Education today, we have been talking about how we as healthcare professionals can better engage high risk patients. What is your single most important piece of advice for a busy healthcare professional on how to build trust and communicate the urgency of treatment to a patient who may look and feel. Perfectly healthy. Yeah, I think it's really important to explain kind of the treatments and the course of action in a way that the patient would understand, but also explaining clearly the risks that are associated with the condition. Um, for me, when I was 21, I really wish that a doctor would have been like, hey, you have high cholesterol. If you don't treat it, these are the things that could happen. If that had happened, I think my course of action would have been different, and um, I just think, yeah, just explaining clearly but compassionately, but there's also a balance of doing it in a way where it leaves the patient with hope that this is something that they can treat. So that, and also it, it helps to when my healthcare provider tells me research and shows me studies, and like, this is science, this is not just something that I'm saying, like, these are the studies, and I thought that was helpful too. And finally, if you could leave this audience of cardiologists, primary care physicians, and other healthcare. Professionals with one key thought about managing lipids in partnership with their patients, what would it be? Uh, yeah, first, I would like to say thank you for having me here and then listening to a patient's perspective. I think that's amazing, first of all, but also really just reiterate, treating the patient as a partnership in their care. It's really important that the patient feels heard and understood, and like they have a say in their care. It's their body, it's their, they're the ones that are going to have to live with the treatment plan. So my cardiologist actually has a saying that I really love, and he says, no decision about me without me. And I thought that was really, really cool that it's important to include the patient and to think of them as a person. Also, don't dismiss the red flag. Flags. Even if a patient doesn't look like your normal cardiac patient, if they have the red flags, the family history or the test results, treat them as if they are at that level of risk and not dismiss it because they're not your typical heart patient. So, yeah, those are just my, my things that I think are important. Julie, thank you so much for sharing your perspective today. It's really important and brings us back to what this is all about, which is a patient at the end of the day. Thank you so much. Yeah, thank you.