Latest / Amplify: A Podcast Powered by Patient Voice Partners / Listening to the Heart: Lived Experience as a Catalyst for Better Cardiac Care

Transcript

Listening to the Heart: Lived Experience as a Catalyst for Better Cardiac Care · Amplify: A Podcast Powered by Patient Voice Partners

• 0:01
  SPEAKER_01: Welcome to Amplify, Elevating Patient Voices, a podcast powered by patient voice partners, where real stories spark bold conversations.
• 0:11
  SPEAKER_01: I'm Ursula Mann.
• 0:12
  SPEAKER_00: And I'm Brent Cordy.
• 0:14
  SPEAKER_00: Together, we're talking with patients, caregivers, and the healthcare change makers who are listening and taking action.
• 0:21
  SPEAKER_01: From personal journeys to policy shifts, these are the voices shaping a healthcare system that listens.
• 0:32
  SPEAKER_02: I'm here today with my co-host Anne Marie, and we're talking about heart, lived experience, and better cardiac care.
• 0:40
  SPEAKER_02: Anne-Marie, what do you think about when you think about women and cardiology?
• 0:44
  SPEAKER_03: I'm really looking forward to this episode.
• 0:46
  SPEAKER_03: I think, like many, I've heard over the years about some of the differences women experience when faced with heart disease.
• 0:53
  SPEAKER_03: But some of the staggering things that have made me a little curious that I've heard or read recently about rising numbers of young women experiencing heart disease and the misdiagnosis.
• 1:05
  SPEAKER_03: And I'm really curious to hear from our guest today about some of these things.
• 1:09
  SPEAKER_02: I really appreciate you flagging that.
• 1:11
  SPEAKER_02: It was many years ago I worked in cardiology, and there were a number of conversations about clinical trials and women not being represented and how women present.
• 1:20
  SPEAKER_02: So the misdiagnosis that you alluded to, same symptoms, but yet if it's a woman, here's the diagnosis.
• 1:27
  SPEAKER_02: And if it's a man, and that's challenging when obviously that changes treatment.
• 1:31
  SPEAKER_02: So I'm really excited to have Jackie join the show today.
• 1:34
  SPEAKER_02: Jackie Ratz is living with heart failure since 2017 and is also a cancer survivor.
• 1:40
  SPEAKER_02: And we're going to hear today about her journey and what were some of the symptoms that she faced.
• 1:45
  SPEAKER_02: But Jackie has also done a lot of interesting things for other patients and caregivers within this space.
• 1:52
  SPEAKER_02: And have to give a very special shout out to her.
• 1:54
  SPEAKER_02: Jackie won an award from the Canadian Women's Heart Health Alliance.
• 1:59
  SPEAKER_02: Jackie, welcome to today's show.
• 2:01
  SPEAKER_02: I was hoping you could start by telling us what are some of these other groups that you work with and tell us a little bit about that.
• 2:09
  SPEAKER_04: Good morning.
• 2:09
  SPEAKER_04: And it's lovely to be here.
• 2:11
  SPEAKER_04: Thank you so much.
• 2:12
  SPEAKER_04: For myself, some of the other groups that I work with, I work with the Heart Life Foundation.
• 2:17
  SPEAKER_04: And you could probably take a quick look at the website.
• 2:20
  SPEAKER_04: We have an e-magazine there that we feature women with heart disease and heart failure, and it's got a learning component to it as well.
• 2:27
  SPEAKER_04: Nutrition, fitness.
• 2:28
  SPEAKER_04: There's a lot of great stuff there.
• 2:30
  SPEAKER_04: It's absolutely fantastic.
• 2:32
  SPEAKER_04: I started working with Heart Life Foundation back in 2017 when I myself was looking for supports.
• 2:38
  SPEAKER_04: And the Heart Life Foundation had a patient scholarship to go to the Canadian Cardiology Conference, the CCC.
• 2:45
  SPEAKER_04: I was granted that award and I met Mark and Jillian, and we had a synergy that just worked.
• 2:51
  SPEAKER_04: And so that was one organization that I started to get involved with.
• 2:54
  SPEAKER_04: And then then I also got involved with the Canadian Women's Heart Health Alliance, through which I won the award.
• 3:00
  SPEAKER_04: And that is an organization that is bringing together clinicians, researchers, trainees, patient partners, all in a forum to be able to move the needle forward on women's heart health.
• 3:11
  SPEAKER_04: As we know, women's heart health has not been researched as well as men.
• 3:16
  SPEAKER_04: And often we get put into a position where we're being treated as small men.
• 3:20
  SPEAKER_04: And that is just not really workable for us.
• 3:23
  SPEAKER_04: We know we have a very different cardiovascular system.
• 3:26
  SPEAKER_04: It's actually the second largest different system in our bodies next to our reproductive.
• 3:32
  SPEAKER_04: That was a really important one.
• 3:33
  SPEAKER_04: And they really focused on awareness.
• 3:35
  SPEAKER_04: And I think that's a really important piece too.
• 3:38
  SPEAKER_04: Those two organizations are probably my key focus because of the amount of work that they're looking to do in the women's space.
• 3:44
  SPEAKER_04: I also do some work with Heart and Stroke, too.
• 3:47
  SPEAKER_04: And I also work on a global scale with Global Heart Hub.
• 3:50
  SPEAKER_04: And Global Heart Hub is working to bring patient organizations across the globe together so that we can share best practices.
• 3:58
  SPEAKER_04: And so that is a really important organization.
• 4:00
  SPEAKER_04: And they just finished launching a women's guidebook on what can be done and what should be done to try to equalize the care and the access to resources.
• 4:10
  SPEAKER_04: So yeah, I wear many hats, unfortunately.
• 4:12
  SPEAKER_02: I could take up probably the whole show.
• 4:14
  SPEAKER_02: Jackie, thank you for telling us about all that work.
• 4:17
  SPEAKER_02: And we're gonna chat a little bit later about what motivated you to work in those areas.
• 4:21
  SPEAKER_02: But take us back a little bit in time as to what was happening with you personally.
• 4:26
  SPEAKER_02: You were doing what in your life, and then all of a sudden you had some symptoms on the health front.
• 4:31
  SPEAKER_02: What was going on?
• 4:32
  SPEAKER_04: So my heart story actually starts back when I was 24.
• 4:36
  SPEAKER_04: It didn't start with heart, it actually started with cancer.
• 4:40
  SPEAKER_04: I had a diagnosis of non-Hodgkins lymphoma.
• 4:43
  SPEAKER_04: I had a tumor in my chest that was putting pressure on 25% of my heart as well as on my lung.
• 4:49
  SPEAKER_04: They only gave me a 40% chance of surviving.
• 4:52
  SPEAKER_04: So I went through full rounds of chemo and through radiation and such.
• 4:56
  SPEAKER_04: And it was a very challenging time, especially being 24.
• 4:59
  SPEAKER_04: You got your whole life in front of you.
• 5:01
  SPEAKER_04: But one of the things that came through with that is that I became incredibly passionate about living my life.
• 5:08
  SPEAKER_04: I had a new appreciation for the daily mini little things, right?
• 5:12
  SPEAKER_04: Enjoying my family, enjoying friends.
• 5:14
  SPEAKER_04: And that has stayed with me.
• 5:15
  SPEAKER_04: Now, after I had my diagnosis of cancer and I recovered, I got married.
• 5:20
  SPEAKER_04: I became a fashion buyer.
• 5:22
  SPEAKER_04: I got a degree in political science and religion.
• 5:25
  SPEAKER_04: And so my life really built up really beautifully.
• 5:29
  SPEAKER_04: 20 years later, though, after my initial diagnosis, I developed heart disease.
• 5:35
  SPEAKER_04: And this came about one morning I woke up and I felt like I had the flu, completely sideswiped.
• 5:42
  SPEAKER_04: And I'm a little a-type personality.
• 5:44
  SPEAKER_04: When I get a cold or something, it doesn't really nail me, but this really nailed me and the level of fatigue I had never experienced.
• 5:51
  SPEAKER_04: I was sweating and not having pain is actually more common than we realize.
• 5:56
  SPEAKER_04: I had some chest discomfort, but nothing really to worry about.
• 6:01
  SPEAKER_04: And I ended up being in bed for three days, but I did not think it was my heart.
• 6:06
  SPEAKER_02: Well, Jackie, you must have been, were you fearful?
• 6:08
  SPEAKER_02: This is cancer returning.
• 6:09
  SPEAKER_02: Is that the first thing that crossed your mind?
• 6:12
  SPEAKER_02: Yes.
• 6:13
  SPEAKER_04: Absolutely.
• 6:14
  SPEAKER_04: You can't help but let your mind go there.
• 6:16
  SPEAKER_04: After going through such a traumatic event and being cancer free for so long and having finally been told that I was cured, you just don't think that it's going to come back.
• 6:25
  SPEAKER_04: You don't want it to come back, right?
• 6:26
  SPEAKER_04: And yeah, the first thought is immediately that.
• 6:29
  SPEAKER_04: Plus, nobody had told me that I could have a legacy left over from the cancer treatments.
• 6:35
  SPEAKER_04: And what do you mean by legacy?
• 6:37
  SPEAKER_04: Can you tell us a bit more about that?
• 6:39
  SPEAKER_04: So one of the things that came about after I got to see a cardiologist, and when I walked in, he said you're right on time.
• 6:46
  SPEAKER_04: He was very quick to tell me about the fact that cancer treatments can leave a legacy in a person's body, affecting their kidneys, heart, as well as their liver for up to 20, 25 years, they now know.
• 6:58
  SPEAKER_04: Wow.
• 6:59
  SPEAKER_04: They didn't know that before.
• 7:01
  SPEAKER_04: And so when I had the diagnosis, I got my clear bill of health.
• 7:05
  SPEAKER_04: They just said, Yeah, you're good.
• 7:06
  SPEAKER_04: Off you go.
• 7:07
  SPEAKER_04: And so that was one of the reasons why I had no idea that when I was dealing with these flu-like symptoms, I was actually dealing with a heart event.
• 7:14
  SPEAKER_04: And it was only by going in to see my family doctor for an annual physical where I pushed hard.
• 7:20
  SPEAKER_04: I had to push hard because I was only 44, and she really did not think it could be my heart for an EKG.
• 7:27
  SPEAKER_04: So I pushed really hard for an EKG, got the EKG done, and she said, No, no, you're gonna be good.
• 7:32
  SPEAKER_04: You're gonna be good.
• 7:33
  SPEAKER_04: Two days later, she phoned me to tell me that I had an abnormal EKG.
• 7:37
  SPEAKER_04: Yeah.
• 7:38
  SPEAKER_03: That's really interesting.
• 7:39
  SPEAKER_03: What triggered you to ask for the EKG?
• 7:43
  SPEAKER_03: My mom.
• 7:44
  SPEAKER_03: Wow.
• 7:45
  SPEAKER_03: Okay.
• 7:46
  SPEAKER_04: Mom.
• 7:47
  SPEAKER_04: I know mom's right.
• 7:48
  SPEAKER_04: They I know, I know.
• 7:51
  SPEAKER_04: Good job, mom.
• 7:52
  SPEAKER_04: My mom had watched the doctors just prior, and there was something on there that they talked about this fact that they now know that the research is coming out about legacy of chemotherapy.
• 8:01
  SPEAKER_04: And my mom said to me, She says, You do not leave that doctor's office without getting at least an EKG.
• 8:06
  SPEAKER_04: And I'm like, Okay, mom.
• 8:08
  SPEAKER_04: And she said, No, you promised me that you're gonna so I use that with my family doctor actually to advocate for myself to be able to say, Look, I need to be able to tell my mom I got this EKG.
• 8:20
  SPEAKER_02: Your mom was not letting you off the phone until you agreed.
• 8:22
  SPEAKER_02: And then she was making you promise you're not leaving the doctor's office until the doctor agreed.
• 8:27
  SPEAKER_03: Do you know what's really interesting about that too is that doctor will never forget that moment and it will impact their care ongoing.
• 8:36
  SPEAKER_03: You taught your doctor something.
• 8:38
  SPEAKER_04: Anne-Marie, I hope you're right.
• 8:40
  SPEAKER_04: I feel that in her case, I think she was a bit surprised.
• 8:43
  SPEAKER_04: And we had a conversation afterwards about the fact that heart issues can affect women of any age, right?
• 8:49
  SPEAKER_04: And often there's a misconception out there that heart disease affects only older women, and that is so not true.
• 8:56
  SPEAKER_04: Heart disease can come in many forms and it can come at any point.
• 8:59
  SPEAKER_04: Women who have autoimmune diseases or they have pregnancy complications and such, they're all more susceptible to being able to develop heart disease sooner.
• 9:08
  SPEAKER_04: I really do feel that there was an educational moment for her.
• 9:11
  SPEAKER_04: And I'm grateful that in the end she relented and she gave me that EKG so that I could get onto a protocol of being able to get assessed and get the medications that I needed.
• 9:21
  SPEAKER_04: So, yeah, it's been a journey for sure.
• 9:23
  SPEAKER_04: I've been now living with heart failure for close to 10 years.
• 9:26
  SPEAKER_04: I am on the full GDMT protocol, so guideline directed medical therapies.
• 9:31
  SPEAKER_04: And I'm very fortunate because not every woman is given that opportunity.
• 9:36
  SPEAKER_04: It's estimated up to 50% of women do not get offered guideline medicated therapies.
• 9:41
  SPEAKER_04: And isn't that crazy?
• 9:43
  SPEAKER_04: Some of the other statistics that are quite alarming around women's heart health is 78% of women get misdiagnosed when they enter an emergency room with a heart attack.
• 9:52
  SPEAKER_04: Still today.
• 9:53
  SPEAKER_04: Still today, yes.
• 9:55
  SPEAKER_04: So we have a lot more work to do yet in terms of the education when it comes to our clinicians to understand that women present with heart attack symptoms that can be similar or identical to what men can present with, but we have our own set that are more common in us.
• 10:11
  SPEAKER_04: And that can include fatigue, jaw pain, shoulder pain, fatigue, unrelenting fatigue, nausea.
• 10:19
  SPEAKER_04: Those are some of the symptoms that we need to be able to get out into the community so that women themselves are also aware.
• 10:25
  SPEAKER_04: So when they go into an emergency room, they're not immediately dismissed with heartburn, hurt, or anxiety.
• 10:31
  SPEAKER_02: I appreciate you sharing all this information.
• 10:34
  SPEAKER_02: So you went through this journey of cancer area and then dealing with heart situation.
• 10:40
  SPEAKER_02: As you were entering that area, was there a balance of relief that it wasn't cancer, but was it fear that you felt when you heard the word heart?
• 10:50
  SPEAKER_02: When you got those results back, when you got that call from the doctor to say, was it an in-person appointment?
• 10:55
  SPEAKER_02: When you got that information, how do you feel that was relayed to you?
• 10:59
  SPEAKER_02: And what were your thoughts in that time period?
• 11:02
  SPEAKER_04: It was such a mixed feeling, Ursula.
• 11:04
  SPEAKER_04: There was immediate relief, but that was mixed with an immediate shock of the fact that it was actually heart.
• 11:12
  SPEAKER_04: And those two emotions hit me at the same time.
• 11:15
  SPEAKER_04: So, you know how they say that both things can be true at the same time?
• 11:18
  SPEAKER_04: That's exactly how I felt.
• 11:20
  SPEAKER_04: And I will say that the relief faded quicker than the fear.
• 11:25
  SPEAKER_04: The fear became much more predominant because, of course, this was an area now I had no knowledge in.
• 11:31
  SPEAKER_04: Heart disease was not something that I had any kind of baseline for.
• 11:34
  SPEAKER_04: I was not in the medical profession at all.
• 11:37
  SPEAKER_04: So my knowledge of the heart and its function was very minimal.
• 11:41
  SPEAKER_04: One of the things I needed right away was support to find where do I get information.
• 11:46
  SPEAKER_04: The call that I had from the doctor was important, but it didn't offer me any information and it didn't really give me any knowledge that I needed to understand what I was going to be navigating.
• 11:57
  SPEAKER_04: And in all fairness to my family doctor at the time, she wasn't aware yet what the diagnosis was going to be either.
• 12:03
  SPEAKER_04: It wasn't until I got in to see a cardiologist, which was much later because with our medical system the way it is, it can take some time.
• 12:10
  SPEAKER_04: And so it took three months for me to get in to see a cardiologist and to get the diagnosis of chemo-induced cardiomyopathy.
• 12:17
  SPEAKER_04: Cardiomyopathy is just a big fancy word from heart muscle damage.
• 12:22
  SPEAKER_04: And from there, the testing that needed to happen and everything else.
• 12:25
  SPEAKER_04: So everything had its own course to get done.
• 12:28
  SPEAKER_04: So I was in this gray zone for a very long time.
• 12:31
  SPEAKER_04: And during that gray zone, I started to think about okay, I need to find other people that are going through this.
• 12:36
  SPEAKER_04: I need other women that could support me and such.
• 12:39
  SPEAKER_04: And I started looking and I was not able to find any supports.
• 12:43
  SPEAKER_04: And it was really kind of sad that I wasn't offered supports either.
• 12:47
  SPEAKER_04: So there was no mental health supports for me available.
• 12:51
  SPEAKER_04: And that made it very lonely.
• 12:52
  SPEAKER_04: It made it a very difficult process.
• 12:54
  SPEAKER_02: Well, Jackie, in this three months, it sounds like you were sort of left to your own devices.
• 13:00
  SPEAKER_02: You were given the information, you knew there was an appointment coming up, but you went looking on your own in that time period for resources and support.
• 13:10
  SPEAKER_02: There wasn't anything to say in the meantime, go look at this.
• 13:14
  SPEAKER_04: So when I started looking at different resources to try to improve my own knowledge about what chemo-induced cardiomyopathy was and where it was going to lead and what the repercussions were going to be, I had to make sure that I was looking at reputable sites.
• 13:27
  SPEAKER_04: And it was very questionable where those sites should be, because nobody educates you on this, right?
• 13:32
  SPEAKER_04: So you just Dr.
• 13:34
  SPEAKER_04: Google and we all go looking on there and we have to be careful.
• 13:37
  SPEAKER_04: It was after I actually got to know Heart Life that I came to realize just how important reputable sites were, but not just reputable sites, but sites that actually are patient-led.
• 13:49
  SPEAKER_04: Like information coming from the Mayo Clinic or Cleveland or some of the other reputable sites is fantastic, but they're clinical.
• 13:55
  SPEAKER_04: They're very clinical.
• 13:56
  SPEAKER_04: They're not aimed at us learning about our illnesses for us.
• 14:01
  SPEAKER_04: And so Heart Life is one of those organizations that really puts an emphasis on patient-led resources.
• 14:07
  SPEAKER_04: They're science-backed, they're all assessed and they're reviewed, but they're all patient forward.
• 14:13
  SPEAKER_04: So the language is relevant to us and the way that the information is presented is digestible for patients.
• 14:20
  SPEAKER_03: Jackie, can I just pick up on that for a second?
• 14:22
  SPEAKER_03: Because I think it's really important in all the years that I've been working across various therapeutic areas, finding reputable sites and information is a common thread, right?
• 14:33
  SPEAKER_03: It's a challenge for everybody.
• 14:35
  SPEAKER_03: We often talk on the clinical side, as you mentioned, we talk about a hierarchy of evidence and how we value different sets of data and whatnot.
• 14:43
  SPEAKER_03: But as a patient, as a consumer, how do you go about thinking about what defines reputable?
• 14:50
  SPEAKER_03: How do you know when you're looking at something that it is reputable?
• 14:52
  SPEAKER_03: Where what do you look for?
• 14:54
  SPEAKER_04: Well, I think that there's different ways that you can go about it.
• 14:57
  SPEAKER_04: And I think looking at the history of the organization is a good starting point, making sure that the organization itself has a board that is looking at the information.
• 15:08
  SPEAKER_04: And it also makes a difference on whether they have patient partners as part of their organizational structure.
• 15:15
  SPEAKER_04: HeartLife is one of the only organizations out there that was started and is led by patient partners.
• 15:21
  SPEAKER_04: And it's a nonprofit, it's the only one in Canada that we have for Heart.
• 15:25
  SPEAKER_04: All the other organizations are led by either clinicians or researchers.
• 15:29
  SPEAKER_04: And that's great.
• 15:30
  SPEAKER_04: There's nothing wrong with that.
• 15:31
  SPEAKER_04: But the information that is presented to us is different than the information that we seek for ourselves.
• 15:38
  SPEAKER_04: And then there's a support element there that you just don't get when it's an organization that is driven by clinicians and researchers, because we're looking at it from a community level versus looking at it from a clinical trial or a research eye.
• 15:52
  SPEAKER_04: They're just different.
• 15:53
  SPEAKER_04: They're both important, but they're just different.
• 15:55
  SPEAKER_04: And in terms of making sure that organizations or sites are valid and reputable, if something sounds too good to be true, second guess it.
• 16:04
  SPEAKER_04: If someone's giving you a cure, don't necessarily fall into that trap, right?
• 16:08
  SPEAKER_04: It's really important.
• 16:10
  SPEAKER_02: So it sounds like at the same time that you're looking for information, you came across these groups, validated to yourself the information was very helpful.
• 16:21
  SPEAKER_02: And it was a combination of engaging with groups generally, but also a big passion for women's health within this space.
• 16:31
  SPEAKER_02: So you had mentioned that there are some differences for women in terms of cardiac care.
• 16:37
  SPEAKER_02: What would you like women out there to know about heart health and what you're currently thinking of within the advocacy realm around conversations earlier in cardiac care?
• 16:48
  SPEAKER_04: One of the first things that I would like women to do is to actually look at ourselves in the mirror and say, you are worth it.
• 16:56
  SPEAKER_04: I'm gonna put myself first.
• 16:58
  SPEAKER_04: As women, we often put ourselves last.
• 17:01
  SPEAKER_04: It is our families, of course, our children, our husbands, our aging parents, potentially, our friends, our for kids.
• 17:10
  SPEAKER_04: Everything often comes before our own self-care.
• 17:14
  SPEAKER_04: It's not very difficult for us to stop and consider the fact that all we need to do is open up the conversation with our family doctor the next time we go in.
• 17:22
  SPEAKER_04: Go do a checklist on where your heart risks are at, right?
• 17:26
  SPEAKER_04: Go into your doctor with your checklist and say, How is my heart?
• 17:29
  SPEAKER_04: Start the conversation.
• 17:31
  SPEAKER_04: It's a very simple thing to do, and you can do it at any age.
• 17:34
  SPEAKER_04: And I encourage women to do it sooner rather than later.
• 17:37
  SPEAKER_04: Get that baseline established.
• 17:39
  SPEAKER_04: Women between the ages of 35 and 55 is the growing segment for heart disease.
• 17:44
  SPEAKER_04: And the reasons are very obvious.
• 17:46
  SPEAKER_04: We are under a lot of stress.
• 17:48
  SPEAKER_04: We have the pressures of family, career, aging parents, all of those things.
• 17:52
  SPEAKER_04: And often we don't have the tools to be able to navigate how to reduce that stress for ourselves and to care for our own hearts.
• 18:00
  SPEAKER_04: Some of the things that are more recently coming to light now as well is that we need to be looking at our full histories of when we started our periods.
• 18:08
  SPEAKER_04: If you started your period before the age of 10, that puts you at a higher risk for developing heart disease later.
• 18:15
  SPEAKER_04: If you have fibroids, endometeurosis, PCOS, and a couple of other types of autoimmune illnesses, they all also add to your risk factor for developing heart disease earlier in life.
• 18:28
  SPEAKER_04: We know pregnancy now is the number one test of our bodies.
• 18:31
  SPEAKER_04: So any pregnancy complications that you may have had, or whether it be gestational, diabetes, preeclampsia, miscarriage, even a complicated birth, all can add to a risk factor for developing heart disease earlier and then going into menopause early.
• 18:48
  SPEAKER_04: So if you have started menopause, going into perimenopause before the age of 45, that also is going to add to your risk factor.
• 18:55
  SPEAKER_04: And the thing that about risk factors is that risk factors also build up.
• 18:59
  SPEAKER_04: So if you have one risk factor, your risk for developing heart disease is only two times the normal risk if you have zero risk factors.
• 19:06
  SPEAKER_04: But if you have up to four risk factors, then you're up to 10 times more likely.
• 19:11
  SPEAKER_04: So depending on how many risk factors you have, can actually indicate how quickly you're going to develop heart disease.
• 19:18
  SPEAKER_02: Jackie, as we talk about the word advocacy, those are incredible stats.
• 19:21
  SPEAKER_02: I feel like we all need to write fast and furious and share it with everyone in our network to make sure.
• 19:26
  SPEAKER_02: Are you aware?
• 19:28
  SPEAKER_02: And you may not present typically, but here are things to consider.
• 19:31
  SPEAKER_02: You're working with some incredible groups and you have taken your personal experience, which has been significant, and become a champion in the ecosystem to help others know what to do.
• 19:42
  SPEAKER_02: That word advocacy gets thrown a lot.
• 19:44
  SPEAKER_02: And I'm really interested in what does that mean to you?
• 19:48
  SPEAKER_02: It's beyond storytelling, it's changes in the system, but what does that mean to you and what do you want others to know?
• 19:54
  SPEAKER_04: So advocacy to me really means about supporting other women and raising awareness.
• 19:59
  SPEAKER_04: That's my passion spot.
• 20:01
  SPEAKER_04: Advocacy also means, though, that we need to make sure that we're educating wherever we can.
• 20:05
  SPEAKER_04: So in the doctor's office with your friends and family.
• 20:09
  SPEAKER_04: It means being willing to put the information out there with the media.
• 20:13
  SPEAKER_04: So there can be obviously talking to your MLAs as well as having an opportunity to speak with parliamentary.
• 20:19
  SPEAKER_04: For me, the advocacy part is really about making sure that the awareness piece is there.
• 20:24
  SPEAKER_04: The awareness of heart disease being the number one killer of Canadian women is going down.
• 20:29
  SPEAKER_04: Over the last decade, it's been going further, lower and lower.
• 20:32
  SPEAKER_04: People are not aware of it.
• 20:34
  SPEAKER_04: The wrong trend.
• 20:35
  SPEAKER_04: The wrong trend, absolutely.
• 20:37
  SPEAKER_04: And for me, it's all about creating opportunities to share information, doing a podcast like this, creating events in my local community or nationally as well, raising the awareness piece so women can actually get into their doctor's office and ask about their hearts and make sure that they're educating themselves about what they can do.
• 20:55
  SPEAKER_04: And it doesn't just start with the women, it's also about making sure that the kids get educated as well.
• 21:00
  SPEAKER_04: Because of course, women love to listen to their children, husbands as well.
• 21:04
  SPEAKER_04: We do need to make sure that our men are aware of the fact that women have to take care of their hearts and we need time and space to be able to do that.
• 21:11
  SPEAKER_04: Advocacy for me really is about that awareness piece, supporting women.
• 21:15
  SPEAKER_04: I have over 1,800 women in my Facebook group now, and we do a wonderful job of supporting each other, making sure we do not feel alone.
• 21:23
  SPEAKER_04: That piece warms my heart so much to know that women are getting the support they need.
• 21:29
  SPEAKER_03: It's interesting at your comment, if I heard you correctly, you mentioned that awareness is going down in some areas.
• 21:36
  SPEAKER_03: And it's interesting because this International Women's Day, I remember gathering with some women.
• 21:41
  SPEAKER_03: And I actually, for the first time, heard some women questioning whether we should be having discussions about women as a separate topic interest group.
• 21:53
  SPEAKER_03: And when I dug into it was driven by criticisms over why we're a special interest group.
• 22:00
  SPEAKER_03: We're not a special interest group.
• 22:01
  SPEAKER_03: We're half the population.
• 22:03
  SPEAKER_03: We're actually 51% of the population in Canada.
• 22:07
  SPEAKER_03: There you go.
• 22:07
  SPEAKER_03: I'm just curious about what you think is happening in this moment in time that is taking the great work that's happening and maybe pushing up against it a little bit.
• 22:17
  SPEAKER_04: There is absolutely nothing wrong with the system, the care that has been put in the system in terms of general care.
• 22:23
  SPEAKER_04: But one of the things that it totally missed out on is the fact that two-thirds of the research that has been done in the cardiac care area has been done on men.
• 22:32
  SPEAKER_04: And so where does that leave women?
• 22:35
  SPEAKER_04: I recently was speaking with uh Dr.
• 22:37
  SPEAKER_04: Dr.
• 22:37
  SPEAKER_04: Colleen Norris, and she said the research now is becoming more and more clear about the fact that our ovaries are the architects of our bodies.
• 22:47
  SPEAKER_04: Oh, interesting.
• 22:48
  SPEAKER_04: So let's pause on that just for a second.
• 22:50
  SPEAKER_04: So if the ovaries are the architects of our bodies, and two-thirds of the research has been done on men, where does that leave women?
• 22:58
  SPEAKER_04: That truly does leave us at a disadvantage.
• 23:01
  SPEAKER_04: And so it's not about the care that's been put out there, the information that is out there, but it's the fact that the information is not accurate for us.
• 23:10
  SPEAKER_04: Not complete.
• 23:11
  SPEAKER_04: Yeah.
• 23:12
  SPEAKER_04: It's not complete.
• 23:13
  SPEAKER_04: Exactly.
• 23:14
  SPEAKER_04: And so it's really important that we do the work now to be able to equalize the care levels that are out there.
• 23:21
  SPEAKER_04: It has nothing to do to take away from our men.
• 23:23
  SPEAKER_04: I love men.
• 23:25
  SPEAKER_04: It's all about balancing it out so that we are being looked at as complete whole beings.
• 23:31
  SPEAKER_04: One of the other areas that is starting to surface too is medications.
• 23:35
  SPEAKER_04: Medications are being given to us based on us being small men.
• 23:40
  SPEAKER_04: But again, it doesn't take into account our hormonal fluctuations and such.
• 23:44
  SPEAKER_04: So we actually metabolize medications differently.
• 23:48
  SPEAKER_04: And so that is not being taken into account.
• 23:50
  SPEAKER_04: So these powerful heart medications and such that we're being exposed to, we need to take that into account as well.
• 23:56
  SPEAKER_04: So more research needs to be done in that area too.
• 23:59
  SPEAKER_04: So it's just about equalizing the playing field so that women can get the same level of care that men have been enjoying for decades.
• 24:08
  SPEAKER_02: I really love the word equalize because we've done a project and a woman had shared, it doesn't matter what I say on the health front, everything is my uterus' fault.
• 24:17
  SPEAKER_02: And that's dangerous.
• 24:19
  SPEAKER_02: That is not equalizing care.
• 24:22
  SPEAKER_02: Yes, there needs to be understanding and recognition, can things be different, but let's remove the blame and the guilt factor and actually look at the root of the problem and what's happening medically.
• 24:32
  SPEAKER_02: So I'm going to be thinking about that word, equalization.
• 24:35
  SPEAKER_04: Bikini medicine has been a disadvantage to women where that's where the focus has been continuously.
• 24:41
  SPEAKER_04: But as complete beings, we need to make sure that we're getting beyond that bikini medicine for sure.
• 24:47
  SPEAKER_04: So even our arteries and such, we have way more tiny arteries than men do.
• 24:51
  SPEAKER_04: So microvascular disease is way more common in women.
• 24:55
  SPEAKER_04: SCAD is another one.
• 24:56
  SPEAKER_04: Spontaneous coronary artery dissection is a heart disease that is predominantly seen in women.
• 25:03
  SPEAKER_04: Takotsubo, which is broken heart syndrome, also predominantly affects women.
• 25:08
  SPEAKER_04: So this looking at bikini medicine fails to recognize that as complete beings, we do not have the knowledge.
• 25:15
  SPEAKER_04: And can you elaborate on bikini medicine, Jackie?
• 25:17
  SPEAKER_02: What do you mean by that?
• 25:18
  SPEAKER_04: So bikini medicine is very much focusing on the uterus as well as on the breasts.
• 25:23
  SPEAKER_04: And so everything that goes on with our bodies is focused around those two areas.
• 25:28
  SPEAKER_04: And it's looked at outside.
• 25:30
  SPEAKER_04: So gynecology has really been kept as a silo outside of some of the other fields of study.
• 25:36
  SPEAKER_04: So cardiology and gynecology should really be linked because there is so much hormonal impacts.
• 25:44
  SPEAKER_04: Estrogen impacts cardiology very much, our heart health.
• 25:48
  SPEAKER_04: And so those two areas need to come together.
• 25:50
  SPEAKER_04: It's cardiooncology, which is the area that specialized in what has gone on with me, has just recently started to come together so that there's cardiologists now that are studying the impacts of oncology.
• 26:01
  SPEAKER_04: The same thing now needs to happen with gynecology and cardiology.
• 26:05
  SPEAKER_04: Those two areas need to come together so that we can be looked at as a whole being and not two separate silos, which only come together once there becomes an issue.
• 26:14
  SPEAKER_02: I love that.
• 26:15
  SPEAKER_02: And as we think about patient future, the patient-centered future in heart health, I can see that as a real opportunity and one of the big ones.
• 26:23
  SPEAKER_02: Is there anything else that you think about in the future as to one more thing you'd like to see?
• 26:28
  SPEAKER_04: I think that any woman who has a diagnosis that they're at high risk for heart disease really needs to be automatically given supports and mental health supports in order to be able to find their tribe to be able to help support what they're going to be going through or what they could potentially go through.
• 26:44
  SPEAKER_04: So I encourage every woman who is looking at a potential diagnosis of heart disease or has been diagnosed with heart disease or heart failure.
• 26:52
  SPEAKER_04: Has it in the family, Jackie?
• 26:53
  SPEAKER_04: Keep an eye on it.
• 26:54
  SPEAKER_04: Family history.
• 26:55
  SPEAKER_04: Absolutely.
• 26:56
  SPEAKER_04: Find some supports of other women who are going on that journey as well.
• 27:00
  SPEAKER_04: Everybody's journey is different, but we are there to support each other and to be able to answer any questions.
• 27:05
  SPEAKER_04: It takes that stigma away because often families and such, it's an invisible illness.
• 27:10
  SPEAKER_04: And so families and friends, they often don't understand what it is to live with a chronic illness.
• 27:15
  SPEAKER_03: Jackie, I had a chance to look at the publication from the global heart hub that you mentioned earlier.
• 27:23
  SPEAKER_03: It was a fascinating publication and really interesting to see so many international organizations joining together to call a number of changes in the system.
• 27:34
  SPEAKER_03: I'm curious, how would you like to see this utilized within Canada?
• 27:39
  SPEAKER_03: What do you think is most important for Canada to pick up from this recent publication?
• 27:44
  SPEAKER_04: It was a pleasure to be able to be part of that group that actually put that report together.
• 27:48
  SPEAKER_04: And one of the things that was most fascinating to me was to understand where Canada is positioned in terms of women's heart health.
• 27:56
  SPEAKER_04: And Canada is doing already a couple of things that are exceptional compared to other places in the world.
• 28:01
  SPEAKER_04: One is the Canadian Women's Heart Health Alliance and the work that it has done with, they have created an atlas that actually gives a landscape of what the Canadian women's heart health situation is like current day.
• 28:12
  SPEAKER_04: They've also created a course that any clinician and trainee can take that's accredited in specifically learning about women's heart health.
• 28:19
  SPEAKER_04: And then we also have the Women at Heart program through the Ottawa Heart Institute, which is a support program for which is led by peer.
• 28:26
  SPEAKER_04: It's a peer-to-peer support group, which is a program that is scientifically based to help women to navigate learning about the heart health.
• 28:34
  SPEAKER_04: And that's also something that is now being rolled out through Global Heart Hub globally, which is amazing.
• 28:39
  SPEAKER_04: So Canada's already doing a few things.
• 28:41
  SPEAKER_04: One of the other most exciting things is that we actually have a bill in front of the Senate right now, which is the women's health bill.
• 28:47
  SPEAKER_04: And it's actually to create a national framework.
• 28:50
  SPEAKER_04: I had the pleasure of being at a conference just this past week where the senator that presented it, and my apologies, I don't have the name of the senator, she actually presented the bill and it's going into the second reading now.
• 29:02
  SPEAKER_04: So Canada's already doing well.
• 29:04
  SPEAKER_04: But in terms of the report that came through the Global Heart Hub, I think there's a lot of really great takeaways in there in order for us to be able to keep pushing forward to be able to continue to build that equalization within the Canadian structure.
• 29:17
  SPEAKER_04: We know our healthcare system is under a lot of pressure, and we know our healthcare professionals are under a lot of pressure.
• 29:23
  SPEAKER_04: And so we need to find ways to be able to support them to be able to support us.
• 29:27
  SPEAKER_04: And so that document actually helps to bridge some of those things by calling out the areas that can be looked at.
• 29:34
  SPEAKER_04: Some areas we're probably doing better in, some areas we need some help in.
• 29:37
  SPEAKER_04: Right.
• 29:38
  SPEAKER_04: But yeah.
• 29:38
  SPEAKER_02: Jackie, you have given us so much to think about.
• 29:41
  SPEAKER_02: And I want to say thank you for the highlights and considerations and thoughts shared on heart health and women and their hearts and the courage for women to take care of themselves and alleviate some of that guilt and know that if a woman is not taking care of herself, what does that mean for her life and those around her?
• 30:01
  SPEAKER_02: And to end on a thoughtful note, really interested in what advice you have and something you'd like to share to unwind and take some special time for yourself to relax and recharge a little bit.
• 30:14
  SPEAKER_04: For me, one of the places that I get my recharge from is actually from my Facebook group.
• 30:18
  SPEAKER_04: Anytime that I need inspiration or need a moment to be able to reflect, my ladies in my group, we call ourselves a heart warrior queens.
• 30:26
  SPEAKER_04: And we very much believe that you have to have heart.
• 30:30
  SPEAKER_04: So you have to love boldly, and you have to be a warrior, so you have to live bravely.
• 30:36
  SPEAKER_04: And then you are a queen because you have to lead in your own heart journey.
• 30:40
  SPEAKER_04: So you have to live bravely, you have to love boldly, and you have to be a queen in order to be able to take on a journey of living with chronic illness of heart disease or heart failure.
• 30:52
  SPEAKER_04: So that for me is my motto.
• 30:54
  SPEAKER_04: That is my mantra, and everything I do is guided by that to make sure that women can have the best possible journey on this journey of life with heart disease and heart failure.
• 31:04
  SPEAKER_02: Jackie, that's beautiful.
• 31:05
  SPEAKER_02: And thank you for sharing that with us today.
• 31:08
  SPEAKER_02: I really appreciate you joining us on Amplify.
• 31:10
  SPEAKER_02: Thank you for having me, and I'd love to come back anytime.
• 31:17
  SPEAKER_02: Thanks for tuning in to Amplify, a podcast powered by Patient Voice Partners.
• 31:22
  SPEAKER_02: If today's story moved you, share it, leave a review, and help us amplify more voices.
• 31:29
  SPEAKER_00: If you're a patient or caregiver, you can join Patient Voice Connect to share your experience and help shape research and care.
• 31:36
  SPEAKER_00: Visit Patient VoicePartners.com to sign up or learn more.
• 31:40
  SPEAKER_02: If you're a clinician, advocate, innovator, or system leader, and you'd like to be a guest on the show or share a story, reach out directly through the contact form on that same page.
• 31:51
  SPEAKER_02: You're also welcome to join anonymously if preferred.
• 31:54
  SPEAKER_00: Follow us on LinkedIn at Patient VoicePartners for updates, behind the scenes content, and to meet our upcoming guests.
• 32:01
  SPEAKER_02: Until next time, stay connected.