Latest / Amplify: A Podcast Powered by Patient Voice Partners / When Pregnancy Suddenly Becomes Life-Threatening: Bonnie’s Story of HELLP Syndrome

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When Pregnancy Suddenly Becomes Life-Threatening: Bonnie’s Story of HELLP Syndrome · Amplify: A Podcast Powered by Patient Voice Partners

• 0:01
  SPEAKER_02: Welcome to Amplify, Elevating Patient Voices, a podcast powered by patient voice partners, where real stories spark bold conversations.
• 0:11
  SPEAKER_02: 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_02: From personal journeys to policy shifts, these are the voices shaping a healthcare system that listens.
• 0:33
  SPEAKER_03: I'm here today with my co-host Anne-Marie, and we're going to be talking about a situation that comes up during pregnancy.
• 0:40
  SPEAKER_03: Anne-Marie, you and I have both been pregnant.
• 0:42
  SPEAKER_03: Do you have any favorite memories of pregnancy?
• 0:45
  SPEAKER_03: I know I felt uncomfortable.
• 0:47
  SPEAKER_03: That's the word that comes to mind, sleep and everything.
• 0:50
  SPEAKER_03: But how was pregnancy for you?
• 0:51
  SPEAKER_03: And what were some things that were exciting?
• 0:53
  SPEAKER_03: What were some things that were challenging?
• 0:55
  SPEAKER_01: I think I was one of the first in my friend group to be pregnant.
• 1:00
  SPEAKER_01: And it was terrifying.
• 1:02
  SPEAKER_01: And that one person got a lot of phone calls from me with a lot of questions.
• 1:08
  SPEAKER_01: Yeah.
• 1:09
  SPEAKER_03: But it was a wonderful experience for me.
• 1:11
  SPEAKER_03: I certainly felt very blessed.
• 1:13
  SPEAKER_03: I remember.
• 1:14
  SPEAKER_03: I think my husband referred to me as an incubator.
• 1:16
  SPEAKER_03: I was quite offended.
• 1:17
  SPEAKER_03: I told him he had to stop saying that.
• 1:20
  SPEAKER_03: I did not like that at all.
• 1:21
  SPEAKER_03: So he quickly ceased.
• 1:22
  SPEAKER_03: But I do remember always feeling hopeful but out of control, right?
• 1:27
  SPEAKER_03: I know stuff was happening, but I was like, oh dear, I'm not going to counting kicks.
• 1:31
  SPEAKER_03: This is a lot happening.
• 1:33
  SPEAKER_03: But for today's show, we're going to be talking about something that happens.
• 1:37
  SPEAKER_03: It's a rare life-threatening pregnancy complication that can happen called HELP syndrome.
• 1:44
  SPEAKER_03: And it can happen when you're pregnant.
• 1:46
  SPEAKER_03: So I'm going to level set and just to share a little bit of background on this because I don't really think it's that well known.
• 1:52
  SPEAKER_03: So HELP is an acronym.
• 1:55
  SPEAKER_03: It stands for hemolysis, which is destruction of red blood cells.
• 2:00
  SPEAKER_03: E is elevated liver enzymes, which also some liver damage, and low platelet count.
• 2:06
  SPEAKER_03: So it can be related to preeclampsia, which I think many of us have heard of.
• 2:10
  SPEAKER_03: This, of course, is around blood pressure situations and can happen at different stages of pregnancy, perhaps before 35 weeks, but it can also happen at different times.
• 2:22
  SPEAKER_03: And basically, what has to happen is you need to deliver the baby to help.
• 2:27
  SPEAKER_03: But what we're going to be talking about today is not just help and what can happen during this time period, but what happens after.
• 2:34
  SPEAKER_03: So symptoms can include headaches, vision problems, pain, fatigue, nausea, vomiting, seizures.
• 2:41
  SPEAKER_03: And it's dangerous.
• 2:42
  SPEAKER_03: This is a seek medical situation.
• 2:44
  SPEAKER_03: We need to help mom.
• 2:46
  SPEAKER_03: We need to help baby, which at pregnancy, whether anybody considered themselves an incubator or not, is a scary time to really make sure we're treating mom and baby accordingly.
• 2:56
  SPEAKER_03: So we're going to be talking about what this was like to experience and also what happens after.
• 3:01
  SPEAKER_03: What are your thoughts, Annory, on this not pre-eclampsia situation?
• 3:05
  SPEAKER_03: And then there's pre-eclampsia as well, but this help.
• 3:08
  SPEAKER_03: Had you heard of this before?
• 3:09
  SPEAKER_03: No.
• 3:10
  SPEAKER_01: And that really what struck me as I was preparing for the show today.
• 3:14
  SPEAKER_01: I spent 40 years in healthcare as a healthcare professional.
• 3:17
  SPEAKER_01: And I've been a woman my entire life.
• 3:20
  SPEAKER_01: And yet I've never heard of this.
• 3:22
  SPEAKER_01: And I think there's a lot of focus right now on understanding women's health has become really important to understand because we are not smaller men.
• 3:32
  SPEAKER_01: We have different biology.
• 3:34
  SPEAKER_01: We have different health concerns.
• 3:35
  SPEAKER_01: And I think we've realized how little we know about women's health.
• 3:38
  SPEAKER_01: So that's what really struck me.
• 3:40
  SPEAKER_01: And I'm looking forward to today's episode to finding out more and hoping that the next generation of women have a lot more information to support them through pregnancy and everything that follows.
• 3:54
  SPEAKER_03: I feel exactly the same way.
• 3:56
  SPEAKER_03: I also had never heard about it and immediately was thinking about women's health in general and what can we do to share information better and make sure we're getting the right care at the right time in the right way and keeping people as healthy as possible.
• 4:11
  SPEAKER_03: So thank you for sharing.
• 4:12
  SPEAKER_03: And with that, I'd like to welcome Bonnie to today's show.
• 4:16
  SPEAKER_03: Hi, thank you so much for having me.
• 4:18
  SPEAKER_03: So, Bonnie, tell us a little bit about what pregnancy was like.
• 4:22
  SPEAKER_03: And I understand that there was a period of time pregnant with baby, things were going fine.
• 4:28
  SPEAKER_03: What happened when all of a sudden you had some symptoms?
• 4:32
  SPEAKER_03: What was, what were you feeling?
• 4:33
  SPEAKER_03: Where you're like, I think something is off.
• 4:35
  SPEAKER_03: What was that like?
• 4:37
  SPEAKER_04: I'm a very strong advocate for making sure you go to all of your checkups when you're pregnant.
• 4:41
  SPEAKER_04: So on that regular schedule.
• 4:43
  SPEAKER_04: And I gotten to the point where I was going weekly to my doctor and of course getting bigger and getting heavier and getting tired and just feeling off in general.
• 4:52
  SPEAKER_04: But I remember leading up to my 36-week checkup, I felt exceptionally off, tired, heavy, just worse all around.
• 5:02
  SPEAKER_04: But I didn't really have an explanation for it.
• 5:05
  SPEAKER_04: Is it just another kind of uncomfortable being pregnant?
• 5:08
  SPEAKER_04: And so when I went to my checkup, I was quite surprised when she said that my blood pressure was up and I needed to go on to bed rest.
• 5:14
  SPEAKER_04: So I did that for a couple of days and it got worse.
• 5:18
  SPEAKER_04: I was told to report back if I got worse.
• 5:21
  SPEAKER_04: And so when I developed a raging headache, I went back to the hospital and was admitted.
• 5:26
  SPEAKER_04: And they were monitoring me at first.
• 5:28
  SPEAKER_04: And then when I started to vomit, then a lot of activity began.
• 5:32
  SPEAKER_04: And yeah, they decided that they needed to induce me.
• 5:35
  SPEAKER_04: They needed to deliver the baby.
• 5:36
  SPEAKER_04: Luckily for me, I was at 36 in three days at that point.
• 5:40
  SPEAKER_04: And so the baby was healthy and strong.
• 5:43
  SPEAKER_04: The delivery itself was still touch and go, and she needed some attention when she was born.
• 5:48
  SPEAKER_04: There were some issues with her heart rate, but I was able to deliver.
• 5:51
  SPEAKER_04: And during the course of my labor, they were taking blood work every felt, I think if it was every 30 minutes.
• 5:58
  SPEAKER_04: They were monitoring my platelets, they were monitoring everything.
• 6:01
  SPEAKER_04: And about that feeling out of control, there was so little I could do.
• 6:07
  SPEAKER_04: And that wasn't the type of person that I am.
• 6:09
  SPEAKER_04: So I was very much at the mercy of the people around me.
• 6:12
  SPEAKER_04: And I was lucky to have a very good team.
• 6:14
  SPEAKER_04: So yeah, I was able to deliver.
• 6:16
  SPEAKER_04: And the prevailing wisdom at the time was okay, situations over, problem is solved.
• 6:23
  SPEAKER_04: The help syndrome is behind you.
• 6:25
  SPEAKER_03: Baby was born and you had baby to take care of.
• 6:28
  SPEAKER_03: Do you remember what you were feeling at the time?
• 6:31
  SPEAKER_03: All these people are a blur around you in the hospital.
• 6:34
  SPEAKER_03: You're delivering earlier than were expected.
• 6:37
  SPEAKER_03: So you mentioned that there was a lot of people around.
• 6:41
  SPEAKER_03: Was that overwhelming?
• 6:42
  SPEAKER_03: Were you fearful?
• 6:43
  SPEAKER_03: Were you just caught up in the moment?
• 6:45
  SPEAKER_03: Take us back there.
• 6:46
  SPEAKER_03: What did that look like?
• 6:47
  SPEAKER_04: I think there's a healthy element of the hormones that are surging that keep the situation of it surreal.
• 6:52
  SPEAKER_04: And just a bunch of different things.
• 6:54
  SPEAKER_04: We hadn't started our prenatal classes yet.
• 6:57
  SPEAKER_04: They were scheduled for the coming week.
• 6:59
  SPEAKER_04: My husband had just started on the nursery.
• 7:01
  SPEAKER_04: So there were complications with that, feeling bad that I didn't have a pregnancy bag with me.
• 7:05
  SPEAKER_04: I didn't have any diapers or anything because I thought I was coming in for a checkup not to deliver.
• 7:10
  SPEAKER_04: So there was a lot of logistical things going through my mind.
• 7:13
  SPEAKER_04: And at the same time, really actually a lack of really understanding the severity of the situation.
• 7:19
  SPEAKER_04: I knew it was severe, but my doctor was expert level at keeping the stress of the situation away from me, which is good because me panicking wouldn't have helped at all in shock as this was all happening.
• 7:31
  SPEAKER_03: I appreciate you sharing that, Bonnie.
• 7:34
  SPEAKER_03: And it sounds like this is the first time this happens.
• 7:36
  SPEAKER_03: This was first pregnancy or 36 weeks along.
• 7:39
  SPEAKER_03: Everything is going fine until it's not.
• 7:42
  SPEAKER_03: There's nothing to do, to think about.
• 7:44
  SPEAKER_03: There's nothing that you should have done earlier.
• 7:46
  SPEAKER_03: You were doing what you needed to do, right?
• 7:49
  SPEAKER_03: Taking care of yourself, having baby do well.
• 7:51
  SPEAKER_03: And then all of a sudden, as these symptoms came the first time, that's when you had to take action and seek more care.
• 7:58
  SPEAKER_03: So your first baby was born.
• 8:01
  SPEAKER_03: You went on to have two more pregnancies.
• 8:04
  SPEAKER_03: What happened with the healthcare professionals in between?
• 8:08
  SPEAKER_03: After the first time, were you warned at all to say, here's what you need to look for next time, or we need to monitor you in a different way?
• 8:16
  SPEAKER_03: How did planning go?
• 8:18
  SPEAKER_04: Yes, I was warned.
• 8:19
  SPEAKER_04: Even in the six weeks after she was delivered, my doctor did advise me that subsequent pregnancies had a higher risk of this happening again, but again in a non-alarmist way.
• 8:29
  SPEAKER_04: So I was made aware of the situation, but I was not left with the impression that was something I should fear.
• 8:36
  SPEAKER_04: I was left with the understanding that I would be monitored closely.
• 8:40
  SPEAKER_04: And when I did end up getting pregnant the second time, I was monitored closely.
• 8:45
  SPEAKER_04: Blood work every week, really watching my platelet levels, watching my blood pressure.
• 8:49
  SPEAKER_04: And yeah, so there were some complications with that one too, just but nothing too severe.
• 8:54
  SPEAKER_04: And then I did carry that baby to term and she was delivered.
• 8:58
  SPEAKER_03: And you did not have any help situation.
• 9:01
  SPEAKER_03: You did not have blood pressure problems in your second pregnancy.
• 9:04
  SPEAKER_03: Is that right?
• 9:05
  SPEAKER_04: No, my platelets were dropping, but I did not have blood pressure issues with her.
• 9:10
  SPEAKER_04: However, I did hemorrhage after she was born.
• 9:14
  SPEAKER_04: And I have learned since then that can also be associated with the complications that come from help syndrome.
• 9:21
  SPEAKER_04: It can cause different changes in your cardiovascular system.
• 9:24
  SPEAKER_04: And so at the time it seemed completely unrelated.
• 9:28
  SPEAKER_04: But now, knowing what we know, we can see there is a correlation between the second pregnancy hemorrhage and the help syndrome of the first one.
• 9:36
  SPEAKER_03: And then what happened in your third pregnancy?
• 9:38
  SPEAKER_03: You're pregnant again, and this was a situation where things were going well for a little while.
• 9:43
  SPEAKER_03: And then what happened?
• 9:44
  SPEAKER_04: Yeah.
• 9:45
  SPEAKER_04: So again, closely monitored lots of blood work.
• 9:48
  SPEAKER_04: I was anemic with him, and my platelets again, they'd kind of rise and they'd fall and they'd rise and they'd fall.
• 9:54
  SPEAKER_04: And they were really watching that because, of course, that affects your ability to clot blood.
• 9:58
  SPEAKER_04: He was also just about to term.
• 10:00
  SPEAKER_04: He was 39 and a half weeks.
• 10:02
  SPEAKER_04: And I went into spontaneous labor with him.
• 10:05
  SPEAKER_04: And it was actually later on in 2020 that I learned that I was developing help syndrome with him as well, but I delivered naturally on my own in time.
• 10:16
  SPEAKER_04: So wow.
• 10:17
  SPEAKER_04: That was a surprise.
• 10:19
  SPEAKER_04: But yeah, so he was healthy and strong.
• 10:21
  SPEAKER_04: And again, even at that time, eight years later, it was still understood that once the baby is delivered, it is behind you.
• 10:29
  SPEAKER_04: The liver heals itself and you move on.
• 10:32
  SPEAKER_03: Congratulations on three wonderful children.
• 10:35
  SPEAKER_03: And I'm glad to hear you got the care at the time that you needed it, with what you described as a flurry of people and things move forward.
• 10:44
  SPEAKER_03: You mentioned that at the time, people thought that was the end of the story.
• 10:48
  SPEAKER_03: You have the baby and everything is good and you can move forward.
• 10:53
  SPEAKER_03: Tell us a little bit about what you've since learned about women that have health syndrome at the time and what it means for health and considerations after.
• 11:04
  SPEAKER_04: So what I've learned since is, and I won't get into the technical science of it, but something happens during that experience that causes damage to your blood vessels.
• 11:14
  SPEAKER_04: And the damage to the blood vessels leaves them stiff.
• 11:18
  SPEAKER_04: Right, even when I walked out of the hospital, I had all of my arteries were stiffened, including the big ones, like the aortic artery.
• 11:24
  SPEAKER_04: And it's something that doesn't show up on tests.
• 11:26
  SPEAKER_04: It's something that is easily explained.
• 11:29
  SPEAKER_04: There's some exercise intolerance.
• 11:31
  SPEAKER_04: There's obviously that also in increases the risk of high blood pressure because you don't have any give enough given those artery walls.
• 11:40
  SPEAKER_04: But at the same time, I was young enough and healthy enough that it didn't show up as symptoms that were anything to really be of note.
• 11:49
  SPEAKER_04: You're tired, you've got three kids, you're not always eating the best.
• 11:52
  SPEAKER_04: And I wasn't running any marathons.
• 11:54
  SPEAKER_04: I didn't try.
• 11:56
  SPEAKER_04: So there was nothing overt that indicated there was this lingering issue.
• 12:02
  SPEAKER_03: Yeah.
• 12:02
  SPEAKER_03: I'm pretty sure they've measured how many steps a young mom takes because I remember having these conversations.
• 12:07
  SPEAKER_03: And it's a lot.
• 12:08
  SPEAKER_03: People, moms chasing their children, take enough good steps in a day.
• 12:12
  SPEAKER_03: That's a workout.
• 12:13
  SPEAKER_03: So I don't know that a marathon on top of a marathon is always needed.
• 12:17
  SPEAKER_03: But that's really interesting to hear that things have evolved and changed, and we need to think a little bit more about if something happened, what that means to continue to be healthy.
• 12:29
  SPEAKER_04: There's a focus on getting immediate care for the moms.
• 12:32
  SPEAKER_04: Even during delivery, there's a link to postpartum mortality beyond even just direct result of the help syndrome.
• 12:40
  SPEAKER_04: And so there's a focus on that as well.
• 12:42
  SPEAKER_04: And in the after period, how do you balance out helping these moms with their physical health when they're going through everything else?
• 12:49
  SPEAKER_04: And yeah, so it's looking better for young moms, but we're still a long ways away from enough people understanding, both in the professional setting and also just among parents who are having kids.
• 13:01
  SPEAKER_04: So the more they know, I feel the better off they are in order to protect themselves or at least be aware of what could be coming down the pipeline.
• 13:08
  SPEAKER_01: I'm curious, are there protocols now for how we should be monitoring women after they've experienced this in pregnancy?
• 13:17
  SPEAKER_01: Because as you said, sometimes there's no symptoms, you don't know.
• 13:21
  SPEAKER_01: So what's conventional wisdom now?
• 13:23
  SPEAKER_04: So actually, I've been able to work alongside my doctor.
• 13:26
  SPEAKER_04: She's with the Living Cardiovascular Institute.
• 13:28
  SPEAKER_04: She's actually an internal medicine specialist, and this is her area of research focus.
• 13:32
  SPEAKER_04: It's through her that I've survived and I would say even thrived a little bit.
• 13:36
  SPEAKER_04: So a lot of her work is not only gathering the data, gathering the research, but also presenting.
• 13:41
  SPEAKER_04: So she does journal articles, she presents to groups, and then she has been able to bring me along board as the patient voice to express what it's like from my position and bring the humanity to all these numbers and statistics.
• 13:56
  SPEAKER_04: And some of my favorite work with her is in educating and advising other medical professionals.
• 14:02
  SPEAKER_04: You got to think emergency physicians, family doctors, obstetricians, cardiologists.
• 14:08
  SPEAKER_04: It is striking to me the lack of awareness.
• 14:11
  SPEAKER_04: And so her main thrust is if you have a woman that's a little bit older, maybe her kids are tweens or around that age, and she is presenting with what looks like cardiovascular issues, ask for a pregnancy history.
• 14:27
  SPEAKER_04: And if there is a history of any hypertensive disorder of pregnancy, not just help syndrome, have it in your mind that there could be some very real cardiovascular consequences playing out at this time.
• 14:39
  SPEAKER_04: And so that's been enlightening for me because you expect when you go to the emergency department that they're going to know the questions to ask.
• 14:46
  SPEAKER_04: The other flip side of that is then there were many times when I was able to email her or text her from the emergency department, just expressing my frustration because I'm there, because I've got symptoms.
• 14:58
  SPEAKER_04: They're severe enough that I'm presenting and I'm not being asked these questions.
• 15:04
  SPEAKER_04: And I'm trying to almost do like an education session to advocate for myself in that situation, but in a way that's respectful.
• 15:13
  SPEAKER_04: Yeah, in a way that's respectful and doesn't break down the rapport between myself and the doctor, because there's nothing faster than saying, oh, I know that this is this and this, and they're looking at you blank.
• 15:24
  SPEAKER_04: So I was able to interact with her in the moment.
• 15:28
  SPEAKER_04: And from there, we started doing some work on conversation guides.
• 15:31
  SPEAKER_04: And that was also in collaboration with some really good worker or researchers out of the University of Toronto.
• 15:37
  SPEAKER_04: And just helping women, it's if you're aware, don't expect this person or this person in your healthcare team to understand or know about this yet because it's new.
• 15:47
  SPEAKER_04: And here are some words that you can say, some sentences that you can present to introduce this in a way that's non-threatening, that helps open up the conversation because your life literally could depend on it.
• 15:59
  SPEAKER_04: And we're living in a world where there's so much complexity to the human situation.
• 16:04
  SPEAKER_04: Not every doctor is going to be up on all of this.
• 16:07
  SPEAKER_04: So you really have to advocate for yourself to make sure that you get the care you need.
• 16:11
  SPEAKER_03: That is so important.
• 16:13
  SPEAKER_03: And I appreciate a lot that you have such consideration and were thinking about the types of questions you want to be asked, but subsequently the information that you want to share.
• 16:26
  SPEAKER_03: And picking up on something you said earlier about helping engage with the physicians, you actually attended cardiology rounds as well and helped engage with some of the information on that.
• 16:38
  SPEAKER_03: Tell us a little bit about what that experience looked like.
• 16:41
  SPEAKER_04: First of all, it was during COVID, so it was a virtual attendance, but it was still pretty amazing.
• 16:46
  SPEAKER_04: Yeah, there were 60 cardiovascular physicians in attendance.
• 16:50
  SPEAKER_04: And the chair was actually a fellow who had done surgery on my heart.
• 16:54
  SPEAKER_04: And so it was interesting to hear him asking the questions because he did his part not understanding what was the root cause of what was going on with me.
• 17:01
  SPEAKER_04: But yeah, doctor was able to present my case and she presented it so well because it was more like a curiosity.
• 17:08
  SPEAKER_04: Here's this mom.
• 17:09
  SPEAKER_04: She's young, she's healthy, no history of this and this.
• 17:13
  SPEAKER_04: And yet, look at her blood pressure.
• 17:15
  SPEAKER_04: So normally it sits right around here.
• 17:17
  SPEAKER_04: It's pretty good.
• 17:19
  SPEAKER_04: But if something happens, whether it's a medical emergency or exercise or any sort of exertion, it spikes into the hypertensive crisis range.
• 17:27
  SPEAKER_04: So do I medicate her?
• 17:29
  SPEAKER_04: How do I treat this woman?
• 17:31
  SPEAKER_04: And it was interesting because the cardiologists were thinking about this.
• 17:34
  SPEAKER_04: It's like, okay, well, that's really odd.
• 17:36
  SPEAKER_04: And so she presented it in that way.
• 17:38
  SPEAKER_04: And then she was able to go on to say, what we have learned is that there's this problem with these blood vessels.
• 17:44
  SPEAKER_04: And if you have a young woman who comes in and she's got these problems and you don't think to ask about her cardiac history, you might think it's something else or think it's nothing or be reassuring.
• 17:57
  SPEAKER_04: So, for example, one of the frustrating times early on for me was seeing my doctor use her tools and the tools weren't doing their job.
• 18:07
  SPEAKER_04: So she had an assessment and she said, Okay, let's do a cardiac risk assessment.
• 18:11
  SPEAKER_04: And so she went through the entire list and I scored with flying colors.
• 18:15
  SPEAKER_04: And she's like, according to this assessment, you're just not at risk.
• 18:19
  SPEAKER_04: And I'm like, but and yet, I had recently been in emergency.
• 18:24
  SPEAKER_04: I'd had a major cardiac intervention, but the assessment didn't pick up on any of that.
• 18:29
  SPEAKER_04: So it's a matter of let's add to that assessment a pregnancy history and give it a score.
• 18:34
  SPEAKER_04: Because as soon as you've had that pregnancy history, you're at risk, period.
• 18:39
  SPEAKER_04: It's been very rewarding.
• 18:41
  SPEAKER_04: And at the same time, what a massive hill to climb.
• 18:44
  SPEAKER_04: There's so much work to do.
• 18:46
  SPEAKER_03: Bonnie, you helped make changes that help other women.
• 18:50
  SPEAKER_03: The fact that we were missing a score and you added this in is huge because how scary is it that something was wrong, but based on the numbers on the sheet, somebody could be looking at it going, well, I don't know.
• 19:05
  SPEAKER_03: Everything is fine.
• 19:06
  SPEAKER_03: I've looked at everything I'm supposed to look at.
• 19:09
  SPEAKER_03: So I want to say thank you for moving that forward and being a change maker and making that change for people to say there's something else here we have to look at.
• 19:17
  SPEAKER_03: I know you had shared with me that now pregnancy is not the end of the story when it comes to help syndrome.
• 19:23
  SPEAKER_03: And there's considerations that we know about long-term heart, long-term brain.
• 19:28
  SPEAKER_03: Can you tell us a little bit about what the current thinking is as to what people should think about for themselves long-term or for loved ones that perhaps have experienced help syndrome and aren't aware of this?
• 19:41
  SPEAKER_04: I think it can be said that everybody would benefit from taking care of themselves early on.
• 19:46
  SPEAKER_04: Everyone benefits from eating well, from getting some exercise, getting regular checkups.
• 19:52
  SPEAKER_04: However, in the case of somebody who's had a hypertensive disorder pregnancy like Help Syndrome, it's probably your best hope for being better prepared for if and when something bad happens.
• 20:04
  SPEAKER_04: And the understanding is statistically, there's a multi-times chance that you are going to develop cardiovascular disease, whether it's stroke, heart attack, heart failure, all of the nasties and at an early age.
• 20:20
  SPEAKER_04: So the average age is late 30s.
• 20:23
  SPEAKER_04: And so if you have a shot, at least preparing your body as best you can to be in better shape when that happens, that's a first opportunity.
• 20:32
  SPEAKER_04: But the other one is just to really recognize that something's happening and don't slough it off.
• 20:39
  SPEAKER_04: So as moms, we are pretty amazing at putting our own issues to the side and making sure that our kids have their vaccinations and dental work done.
• 20:50
  SPEAKER_04: But it's a matter of being watchful.
• 20:53
  SPEAKER_04: And it's not to be morbid, it's not to be depressing, but it's just to be thoughtful.
• 20:59
  SPEAKER_03: I'd like to share it with our learners.
• 21:00
  SPEAKER_03: You're stable but alert.
• 21:02
  SPEAKER_03: So tell us what that means to you.
• 21:05
  SPEAKER_03: What does stable but alert mean?
• 21:07
  SPEAKER_03: Yeah.
• 21:08
  SPEAKER_04: So for me, stable but alert has happened in the years since.
• 21:11
  SPEAKER_04: So I had my major cardiac event.
• 21:14
  SPEAKER_04: I pursued all avenues of figuring out what had happened, eventually, discovering the link to the help syndrome and getting as much help as I can.
• 21:22
  SPEAKER_04: There's not a lot available at this point.
• 21:25
  SPEAKER_04: And that has brought me to a place where I am physically stable.
• 21:28
  SPEAKER_04: I knock on what haven't been to the emergency department hardly at all in the last two, three years.
• 21:35
  SPEAKER_04: So yes, I am stable, but I'm not just resting on my laurels.
• 21:39
  SPEAKER_04: I know that I still need to go and see my physician every three to six months.
• 21:42
  SPEAKER_04: I know I need to monitor my blood pressure.
• 21:44
  SPEAKER_04: I know that things can change.
• 21:47
  SPEAKER_04: And so I'm alert to changes.
• 21:50
  SPEAKER_04: I'm alert to my need for rigid, stringent adherence to my medications, but I'm also alert to other areas that could be affected.
• 21:59
  SPEAKER_04: So for example, Yes, I had a major cardiovascular event, but I'm also at high risk for diabetes and other metabolic disorders.
• 22:08
  SPEAKER_04: So I make sure that my liver is assessed with my blood work and occasional ultrasounds and also my blood sugar.
• 22:16
  SPEAKER_04: I have to really watch my blood sugar and make sure I've been just to the very top of that pre-diabetic range and I've been able to bring it back.
• 22:24
  SPEAKER_04: But it takes a lot of work, a lot of collaboration with my medical team.
• 22:27
  SPEAKER_04: And so stable, not diabetic, but very alert.
• 22:33
  SPEAKER_04: It's not really something that you take a vacation from.
• 22:37
  SPEAKER_04: And so now when I look at young moms and I look at myself earlier on, if I could go back, it'd be the same.
• 22:44
  SPEAKER_04: So I left the hospital.
• 22:46
  SPEAKER_04: I had these little babies.
• 22:47
  SPEAKER_04: I was stable, but I was not alert.
• 22:50
  SPEAKER_04: And I didn't know what was coming.
• 22:52
  SPEAKER_04: And I like to think I would have taken more priority in my own health had I known, but who knows?
• 22:57
  SPEAKER_04: Life is hard when you've got littles.
• 23:00
  SPEAKER_04: But at the same time, when the bad event happened, I didn't recognize it at all.
• 23:06
  SPEAKER_04: And full disclosure, I was trained as an EMT in my early years.
• 23:12
  SPEAKER_04: I should know better.
• 23:13
  SPEAKER_04: And yet I was my own worst patient.
• 23:16
  SPEAKER_04: And had I understood that this could happen someday, I feel like maybe I would have acted quicker under the circumstances.
• 23:24
  SPEAKER_04: I was okay.
• 23:25
  SPEAKER_04: I acted quickly enough, anyways.
• 23:27
  SPEAKER_04: But I was at risk of having a stroke.
• 23:30
  SPEAKER_04: And now I heard shortly after that of a 39-year-old athletic woman who had a massive stroke.
• 23:36
  SPEAKER_04: And I'm like, oh, how did that happen?
• 23:39
  SPEAKER_04: And so when I think about hearing about these young women who've had these far more catastrophic outcomes, and now I wonder, did you have a hypertensive disorder of pregnancy?
• 23:51
  SPEAKER_04: Could you have recognized sooner?
• 23:53
  SPEAKER_04: Could you have been treated prophylactically?
• 23:56
  SPEAKER_04: So these are all things that we're still finding out.
• 23:58
  SPEAKER_04: We're still figuring out guidelines.
• 24:00
  SPEAKER_04: When do you medicate for someone who's almost guaranteed to end up with hypertension?
• 24:04
  SPEAKER_04: How long do you just monitor?
• 24:05
  SPEAKER_04: But one of the biggest things is, and this is um public service announcement, don't be afraid of statins.
• 24:12
  SPEAKER_04: I went to the very top of the food chain in terms of the local cardiology crew.
• 24:17
  SPEAKER_04: And that was his advice to me.
• 24:19
  SPEAKER_04: He's like, just stay on the statin.
• 24:21
  SPEAKER_04: Don't be afraid of it.
• 24:22
  SPEAKER_04: Don't Google it.
• 24:23
  SPEAKER_04: And it has been probably the most transformative because, for reasons not yet understood in science, it has that impact of making the lining of the blood vessels healthier.
• 24:36
  SPEAKER_04: And that's the part that's causing the stiffness.
• 24:38
  SPEAKER_03: We're talking about a class of medications that's used commonly in heart disease and important to take medications that can make a difference.
• 24:46
  SPEAKER_01: Yeah.
• 24:47
  SPEAKER_01: I'm curious, Bonnie, is there any evidence that there's a genetic component, familial trait?
• 24:54
  SPEAKER_01: Is this something that you need to teach your daughters about?
• 24:58
  SPEAKER_04: I haven't asked lately, but the prevailing wisdom the last time I did is we still don't know what causes eclampsia, pre-eclampsia help syndrome.
• 25:06
  SPEAKER_04: There's some speculation.
• 25:08
  SPEAKER_04: They're trying to see correlations between race, between socioeconomic status, different things.
• 25:13
  SPEAKER_04: But the last I understood, we haven't figured out what leads up to it.
• 25:16
  SPEAKER_04: So I think under the circumstances, just educate everyone.
• 25:21
  SPEAKER_04: The other question that I have too that I'm pushing any researcher I talk to is are we studying the babies?
• 25:27
  SPEAKER_04: So the babies of the help syndrome pregnancies, are they okay?
• 25:31
  SPEAKER_04: Because my oldest one is not okay.
• 25:34
  SPEAKER_04: And she developed POTS syndrome.
• 25:36
  SPEAKER_04: And I don't know if there's a correlation or not.
• 25:38
  SPEAKER_04: So hopefully we'll have some more wisdom about that in the future.
• 25:41
  SPEAKER_04: And I think to keep it uncomplicated as possible for an overwhelmed pregnant mom, just keep your appointments.
• 25:49
  SPEAKER_04: Don't delay when it's time to go every week.
• 25:51
  SPEAKER_04: Go every week, get your blood pressure checked, your blood work.
• 25:55
  SPEAKER_04: Just do your part as much as possible so that it can be captured if it happens.
• 26:00
  SPEAKER_03: That's so important.
• 26:02
  SPEAKER_03: And you had mentioned as a busy mom and then having kids as you're managing your own health.
• 26:10
  SPEAKER_03: It's hard to set aside the time to take care of yourself.
• 26:14
  SPEAKER_03: And yet we all have to do that to make sure we can continue taking care of others.
• 26:18
  SPEAKER_03: What advice do you have for other moms out there in terms of how to prioritize and what to continue doing to make sure that we're as healthy as possible?
• 26:28
  SPEAKER_04: Actually, this is almost more of something I want to say to their loved ones.
• 26:33
  SPEAKER_04: Make sure your wife, make sure your mom, makes sure your partner takes care of herself too.
• 26:40
  SPEAKER_04: And that could be I've got the kids at bath time, go for a walk.
• 26:45
  SPEAKER_04: It could be as simple as that.
• 26:46
  SPEAKER_04: And insisting because it's really hard to take care of yourself when you don't have permission, unfortunately.
• 26:55
  SPEAKER_04: A lot of women just don't give it to themselves.
• 26:57
  SPEAKER_04: And the second part of that is give yourself permission.
• 27:01
  SPEAKER_04: Give yourself permission to take that deep breath, to manage your stress, to ask for help, to not try and strong arm your way through on your own and just really value yourself.
• 27:13
  SPEAKER_03: Good advice.
• 27:14
  SPEAKER_03: I really appreciate that.
• 27:16
  SPEAKER_03: It is good advice, one that we all have to take.
• 27:19
  SPEAKER_03: There is a lot of movement, and you've highlighted a lot of interesting things today.
• 27:23
  SPEAKER_03: There's movement in women's health and cardiology and what we need to look for.
• 27:28
  SPEAKER_03: And is the presentation different depending on period of time?
• 27:33
  SPEAKER_03: And I've heard Anne-Marie say before, we're not small men.
• 27:36
  SPEAKER_03: What does this look like?
• 27:37
  SPEAKER_03: I think that's all really important to think about as healthcare providers within health systems, as human beings in it together is to what this looks like and setting aside the permission to have loved ones take care of the women around them and also the women to take care and think about what's important for them as well.
• 27:55
  SPEAKER_03: Appreciate you sharing that.
• 27:57
  SPEAKER_04: It also extends into the advocacy space because my approach going to the emergency department is usually I'm so sorry to be a bother.
• 28:05
  SPEAKER_04: I don't want to be here either, but I'm in over my skis.
• 28:08
  SPEAKER_04: I need you to tell me that everything's okay, which is fine.
• 28:13
  SPEAKER_04: At the same time, there's a few things that I have learned.
• 28:16
  SPEAKER_04: One of them is language matters, especially as a woman.
• 28:20
  SPEAKER_04: For a while there, we weren't quite sure how to label what was going on with me.
• 28:27
  SPEAKER_04: And to get actual attention, I'd be like, I'm part of a Liban Cardiovascular study.
• 28:32
  SPEAKER_04: Oh, okay.
• 28:34
  SPEAKER_04: I had cardiac ablasion.
• 28:36
  SPEAKER_04: Oh, okay.
• 28:37
  SPEAKER_04: Because otherwise it's easy to fall into the whole are you anxious track.
• 28:43
  SPEAKER_04: And I find that one particularly frustrating because number one, if I could make these symptoms go away by calming down, there are other places I would rather be right now.
• 28:53
  SPEAKER_01: This isn't where I come to calm down.
• 28:56
  SPEAKER_04: Yeah, of course I'm anxious.
• 28:58
  SPEAKER_04: I have three kids at home, and their world is really my responsibility.
• 29:03
  SPEAKER_04: And if something goes sideways because you miss something, the consequences are devastating.
• 29:08
  SPEAKER_04: So yeah, I am anxious, but I don't think calming down is going to make my symptoms go away.
• 29:13
  SPEAKER_04: So it's a matter of really trying to understand how to present yourself, how to present your situation.
• 29:18
  SPEAKER_04: One of the things that one doctor taught me is write things down.
• 29:23
  SPEAKER_04: And so if you're going to the emergency department, write down why you're there and then put a little bit of the history, hand it to them.
• 29:30
  SPEAKER_04: They're used to reading things, and then they can ask some questions.
• 29:34
  SPEAKER_04: I found that is really helpful to the point where I've given my family members little cards that they can carry that's got all the pertinent information.
• 29:42
  SPEAKER_04: Just hand them this.
• 29:43
  SPEAKER_01: That's actually great advice.
• 29:45
  SPEAKER_01: One of the things we deal with a lot at patient voice partners is bridging the healthcare professional patient gap sometimes, right?
• 29:53
  SPEAKER_01: And virtually every disease area therapeutic area, we experience this.
• 29:58
  SPEAKER_01: And that's a really good practical tip.
• 30:00
  SPEAKER_01: It's how we communicate with one another is so important to making that a positive, productive conversation.
• 30:07
  SPEAKER_04: I actually geeked out and made little cards.
• 30:10
  SPEAKER_03: So I got them printed.
• 30:12
  SPEAKER_03: It's perfect because how disappointing is it when you only have a limited time with a specialist and you walk out and you're like, I forgot to mention a few things.
• 30:20
  SPEAKER_03: And now how long am I waiting to see them again?
• 30:23
  SPEAKER_03: It's a punch in the gut.
• 30:24
  SPEAKER_03: So I appreciate you sharing that.
• 30:27
  SPEAKER_03: And the cards are a great idea to capture everything.
• 30:30
  SPEAKER_03: It's taking care of yourself to advocate, and it's also time well spent because you're helping, you're part of the team when you're the patient.
• 30:36
  SPEAKER_03: And so giving all the information on the table so that we can work together to figure stuff out is really helpful.
• 30:43
  SPEAKER_03: Thank you for sharing that.
• 30:45
  SPEAKER_01: I have a colleague who invents words all the time, which I love.
• 30:50
  SPEAKER_01: He makes verbs out of new verbs out of words, and he actually uses the term patienting.
• 30:55
  SPEAKER_01: And I think what you've just described is really good patienting.
• 31:00
  SPEAKER_01: And I'm gonna borrow that idea.
• 31:03
  SPEAKER_04: Absolutely.
• 31:04
  SPEAKER_04: Especially in the system as it is today, it's hard to get care.
• 31:07
  SPEAKER_03: It's hard to get care at the right time and at times in the right way.
• 31:11
  SPEAKER_03: And I want to say thank you for your courage to share this journey with us and everything you faced with the pregnancies and that you've continued to think about in a stable but alert situation.
• 31:23
  SPEAKER_03: And also the considerations as to how to make care better and adding on that pregnancy questionnaire.
• 31:30
  SPEAKER_03: What happened in pregnancy and even considerations you had shared earlier about let's make sure we're doing some research on the babies and seeing what's happening.
• 31:38
  SPEAKER_03: So thank you for such thoughtfulness around women's health and heart and brain and everything that has been moving forward.
• 31:47
  SPEAKER_03: So after your pregnancies, something happened with your heart that required you to seek medical attention urgently.
• 31:54
  SPEAKER_03: Can you tell us a little bit about what happened?
• 31:56
  SPEAKER_04: Yeah, for sure.
• 31:58
  SPEAKER_04: It came out of the blue because I was not made aware to watch for any signs and symptoms.
• 32:03
  SPEAKER_04: I thought everything was handled.
• 32:04
  SPEAKER_04: Literally, one morning I wake up with this bizarre sensation in my chest.
• 32:08
  SPEAKER_04: It was like it had been expanded and there was a bird flopping around in there.
• 32:13
  SPEAKER_04: I remember that's how I described it.
• 32:15
  SPEAKER_04: But I ignored it because I'm a young mom and I was busy and it was just before Christmas and had to get the kids to school and check the lost and found and all those things.
• 32:22
  SPEAKER_04: Unfortunately or fortunately, I couldn't ignore it for long.
• 32:26
  SPEAKER_04: And by two o'clock in the afternoon, and I recognized I'd better go get checked out.
• 32:30
  SPEAKER_04: I'm recognizing that the chest pain is going up into my left shoulder and jaw.
• 32:34
  SPEAKER_04: These are pretty stereotypical problems.
• 32:37
  SPEAKER_04: And even still, it was two o'clock.
• 32:40
  SPEAKER_04: I had to wait until I had my kids situated after school.
• 32:42
  SPEAKER_04: So I went up to the emergency department and again, apologetic.
• 32:46
  SPEAKER_04: I'm sorry you guys are busy.
• 32:48
  SPEAKER_04: I'm probably wasting my time.
• 32:49
  SPEAKER_04: I only bought two hours of parking.
• 32:51
  SPEAKER_04: But then the triage nurse checked my blood pressure and my pulse and looked at me and said, You're having a major cardiac event.
• 32:58
  SPEAKER_04: You need to be cardioverted.
• 33:00
  SPEAKER_04: And shock.
• 33:03
  SPEAKER_04: It was just shock.
• 33:04
  SPEAKER_04: So I went from thinking it was nothing and I was gonna walk away with my tail between my legs, feeling stupid for showing up, to being rushed to the back, being prioritized for care.
• 33:14
  SPEAKER_04: They discovered that my heart was in an arrhythmia called atrial flutter, which I've looked it up.
• 33:20
  SPEAKER_04: It sounds like something that old men get.
• 33:22
  SPEAKER_04: But here I was.
• 33:24
  SPEAKER_04: My son was only five at the time.
• 33:26
  SPEAKER_04: He was just a little guy.
• 33:28
  SPEAKER_04: And I would I was perplexed.
• 33:30
  SPEAKER_04: I was utterly perplexed.
• 33:32
  SPEAKER_04: I was young, I wasn't in bad shape, I didn't eat poorly.
• 33:36
  SPEAKER_04: Why was this happening?
• 33:37
  SPEAKER_04: And so they took care of me that night and they got my heart rate or heart rhythm back into a normal sinus rhythm.
• 33:44
  SPEAKER_04: And then they sent me on my way with instructions to return if it happened again.
• 33:49
  SPEAKER_04: And that's a lot to process.
• 33:51
  SPEAKER_04: I remember the next morning looking in the mirror and seeing these rectangular burn marks on my chest and my back.
• 33:58
  SPEAKER_04: And I'm actually thankful for those because they were my anchors.
• 34:02
  SPEAKER_04: They kept it real in subsequent months and years when I tried to find out why this had happened.
• 34:09
  SPEAKER_04: Because again, we are not little men.
• 34:12
  SPEAKER_04: The risk assessment, even after that time, put me at low risk for any cardiac problems.
• 34:18
  SPEAKER_04: I went through all of the traditional cardiac testing.
• 34:21
  SPEAKER_04: I had to push for it, but eventually I got to, I did the treadmill test.
• 34:25
  SPEAKER_04: I did all the different tests.
• 34:27
  SPEAKER_04: And when you are looked at, like all of these tests are coming back fine.
• 34:32
  SPEAKER_04: You are fine.
• 34:33
  SPEAKER_04: I wish I had a heart system as healthy as yours, but yet you've got that anchor image in your mind of those rectangular burn marks.
• 34:42
  SPEAKER_04: You're like, but yet I'm not.
• 34:44
  SPEAKER_04: And it kind of forces you to think, okay, maybe they don't have all the right tests yet.
• 34:50
  SPEAKER_04: And so I kept pushing because I knew something was wrong.
• 34:53
  SPEAKER_04: I was not well.
• 34:54
  SPEAKER_04: I was terrified.
• 34:56
  SPEAKER_04: All of a sudden, I didn't know when my body was going to let me down again.
• 35:00
  SPEAKER_04: And to know that I had come so close to possibly having a stroke, had I not gotten the right care, was really sobering.
• 35:09
  SPEAKER_04: But it was a serendipitous event that I attended where Doctor was speaking and everything she said resonated.
• 35:16
  SPEAKER_04: And I was able to ask her to be a part of her study.
• 35:19
  SPEAKER_04: And then even then, she didn't have a lot of answers.
• 35:23
  SPEAKER_04: She just had more evidence and data to show that there was something.
• 35:26
  SPEAKER_03: Bonnie, you mentioned, I wonder if they don't have all the right information about me.
• 35:30
  SPEAKER_03: Did this situation start to prompt you to think about, gosh, do we have all the right information for women?
• 35:37
  SPEAKER_03: And by the way, is this related to help?
• 35:40
  SPEAKER_03: Is that how you started thinking about long-term information?
• 35:44
  SPEAKER_03: No.
• 35:45
  SPEAKER_04: Before I met my doctor, I was mystified.
• 35:48
  SPEAKER_04: I just knew something happened, something was wrong, but it wasn't showing up anywhere on the echoes or anything like that.
• 35:54
  SPEAKER_04: But then when she said, these moms who have these experiences, average eight to 13 years later, are experiencing these cardiac problems, including arrhythmia.
• 36:05
  SPEAKER_04: That's when it clicked.
• 36:07
  SPEAKER_04: And I thought, okay, this is new information.
• 36:09
  SPEAKER_04: This is not something that's been understood before.
• 36:12
  SPEAKER_04: And so even just having somebody in the profession validate the reason why I had those rectangular burn marks on my chest and back was such a relief.
• 36:23
  SPEAKER_04: The rest felt like gaslighting and it makes you feel like you're crazy.
• 36:27
  SPEAKER_04: And that is not a good place to be when you're trying to get help.
• 36:30
  SPEAKER_04: And so after that point, that's when I realized we really don't have the tests yet.
• 36:35
  SPEAKER_04: We really don't have even a spread of the understanding.
• 36:39
  SPEAKER_04: There's still just a pocket of medical professionals who even see that this is a thing.
• 36:43
  SPEAKER_04: And so, on one hand, there's a so much work to do.
• 36:47
  SPEAKER_04: On the other hand, I am the luckiest, unlucky person on the planet to have found this help.
• 36:53
  SPEAKER_04: And that has also put me into different rooms.
• 36:56
  SPEAKER_04: I tell everybody every time I go to a doctor ever, whether it's with my kids or for myself, I'm like, oh, by the way, if you have a mom who's presenting like this, ask this question.
• 37:07
  SPEAKER_04: So I try and do my part there.
• 37:09
  SPEAKER_04: But also, even just being able to interact with, for example, I was on a small committee.
• 37:13
  SPEAKER_04: We were applying for a grant that was going to look into some experience of women related to their emergency departments and cardiac experiences.
• 37:22
  SPEAKER_04: And the one physician, he said, Well, we know that when the mom comes in and we do the ECG and it comes back fine, and we do the troponin levels and they come back fine, we can send them home knowing that nothing's really going to happen for a month.
• 37:34
  SPEAKER_04: And I stopped him and I said, That would be good information to know because from my perspective, I go into the emergency with these symptoms, you run these standard tests, you're reassured and send me home.
• 37:46
  SPEAKER_04: But what happens when I go home and I feel worse later?
• 37:49
  SPEAKER_04: Do I go back?
• 37:50
  SPEAKER_04: You repeat the tests, they're still fine.
• 37:54
  SPEAKER_04: So it was really, really, really scary.
• 37:57
  SPEAKER_04: And to be told you just you got to exercise, you gotta exercise, but then you start exercising.
• 38:02
  SPEAKER_04: And even just walking brings on these incredible symptoms.
• 38:05
  SPEAKER_03: It's like, what if they're wrong?
• 38:08
  SPEAKER_03: And probably that's not the right advice when you're being told to walk and you can't.
• 38:12
  SPEAKER_03: Appreciate you sharing that.
• 38:14
  SPEAKER_03: On a fun note, tell us a little bit about what has been really meaningful to you as of late to hang out with your three wonderful children.
• 38:20
  SPEAKER_03: What does that look like?
• 38:22
  SPEAKER_03: Yeah.
• 38:22
  SPEAKER_03: Those kids are bought and paid for.
• 38:26
  SPEAKER_04: Started out really challenging with the pregnancies and the early days.
• 38:30
  SPEAKER_04: They were pretty hard on me, but they have grown up to be just the most insightful little humans.
• 38:37
  SPEAKER_04: And it's amazing to me how much I can learn from them if I can swallow my pride sometimes.
• 38:44
  SPEAKER_04: But I'm really enjoying this stage as they're a little bit older because when they're little, it feels like you are teaching them so much stuff, and then they're repeating that back.
• 38:55
  SPEAKER_04: And you're teaching them to have manners, you're teaching them to interact.
• 38:58
  SPEAKER_04: But then as they get older and their individuality really starts to overtake, it's amazing to see what their interests are and where their talents lie.
• 39:08
  SPEAKER_04: And where did that even come from?
• 39:10
  SPEAKER_04: And I really appreciate being a part of it.
• 39:13
  SPEAKER_04: I appreciate having front row seats and being a sounding board or consultant.
• 39:18
  SPEAKER_04: And I find them quite fascinating.
• 39:20
  SPEAKER_04: And also just recognizing that as they're entering into their adult years, this is a pretty interesting time to try and be independent with the cost of living and all the different challenges.
• 39:32
  SPEAKER_04: And so just bearing witness to their determination and their ability to ask for advice and questions, but yet really pushing for it on their own has been extremely satisfying.
• 39:45
  SPEAKER_04: So I guess they're my favorite show right now is just seeing what's happening in the next episode of this kid or that kid.
• 39:52
  SPEAKER_04: And I feel very grateful that they have me as a part of it all too.
• 39:57
  SPEAKER_04: So makes it worthwhile.
• 39:59
  SPEAKER_03: Wonderful.
• 40:00
  SPEAKER_03: That's beautiful.
• 40:02
  SPEAKER_03: Thank you for sharing.
• 40:03
  SPEAKER_03: I love the curiosity that you share and that you demonstrate in terms of what's next in their life and the neat things they can now share and teach you on the front.
• 40:12
  SPEAKER_03: Bonnie, thank you for this fantastic conversation today and really do appreciate you joining us.
• 40:16
  SPEAKER_04: Thank you so much for raising attention on this issue.
• 40:19
  SPEAKER_04: I have no doubt, not to sound dramatic, that this will help save lives.
• 40:24
  SPEAKER_01: Thank you.
• 40:24
  SPEAKER_04: Thank you, Bonnie.
• 40:30
  SPEAKER_03: Thanks for tuning in to Amplify, a podcast powered by Patient Voice Partners.
• 40:35
  SPEAKER_03: If today's story moved you, share it, leave a review, and help us amplify more voices.
• 40:42
  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.
• 40:48
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• 40:53
  SPEAKER_03: 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.
• 41:04
  SPEAKER_03: You're also welcome to join anonymously if preferred.
• 41:13
  SPEAKER_03: Until next time, stay connected.
• 41:16
  SPEAKER_03: Your voice matters.