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Taking a Breath: A Stop the Clot Podcast is a show committed to shining a light on the dangers of blood clots and breathing life into The National Blood Clot Alliance’s mission of pushing these preventable killers to the forefront of public discourse. We will hear the stories of notable blood clot survivors like Olympic medalists Katie Hoff Anderson & Tatyana McFadden, among others, as well as the expertise of medical professionals to provide connection, empathy and resources to listeners like you. At Stop the Clot we know the patient because we are the patient. Journey through this miraculous series with hosts and blood clot survivors Leslie Lake and Todd Robertson as they, with the help of listeners like you, change the way we think about blood clots. Join us as we collectively stop the clot.
The National Blood Clot Alliance (NBCA) is a 501(c)(3), non-profit, voluntary health organization dedicated to advancing the prevention, early diagnosis and successful treatment of life-threatening blood clots such as deep vein thrombosis and pulmonary embolism.
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There's something so poignant about intuition and the indescribable instincts we sometimes feel before pivotal moments in our lives. And he said, Mom, I can't breathe. My husband was driving and two was in the back seat. And I noticed him start slumping over and I jumped in the back seat. Our deeper connectedness is recognized in a flash by the events to come. What do you do when a worst case scenario
becomes your reality. And by the time we arrived at the hospital, Kristine pretty much told me that he was gone.
Every six minutes, somebody in America dies of a blood clot. We're here to change that statistic. Welcome to Taking a Breath, a stop the clot podcast. A podcast dedicated to bringing awareness of the dangers of blood clots from the clotting disorders community to the world. With the help of many notable blood clot survivors, we are here to give you the knowledge and the skills that you need.
to prevent this silent killer. My name is Leslie Lake. I am the president of the National Blood Clot Alliance, and I am a blood clot survivor. And my name is Todd Robertson. I am the patient engagement liaison for the National Blood Clot Alliance, and I am a seven-time blood clot survivor. And we're here to stop the clot.
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We regularly talk on this show about the most emotionally impossible situations. The near death of a clotting event, the loss of a loved one, the loss of a child. Though we can't go back and undo what's been done, we can move forward and create lasting and impactful change for those experiencing similarly difficult realities. Our guests today shine that joyful resonance through communities across the world.
founders of the Devereux Hubbard II Foundation for blood clot awareness and faith leaders of their local community, our guests enrich people's lives day in and day out. Here to discuss their son, Devereux Hubbard II, known lovingly in life and in legacy as two, this is Devereux and Kristi Hubbard.
My name is Christy Hubbard. I'm excited today to be able to share our story in hopes to help save lives. I am the wife of Deverell Hubbard, 32 years today. That's pretty exciting for us. And the mom of Deverell Hubbard II, who worked for a blood clot, would be 30 years old. And I'm Deverell Hubbard, Christy's husband, obviously.
and father of Deborah the second as well as father of Drew Hubbard and father of Dawson Hubbard. So other two biological children and then a whole bunch of other children who call us mom and dad.
We jokingly always called him the gentle giant. He was born almost 10 pounds. So he's knew a day in his life where he wasn't a big kid, a big fella, but more like a teddy bear. Even though by high school, because he played football, he called himself the Hulk because outside of the football field, he was gentle and calm and sweet.
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but once he hit the football field, he put it on. He was one of those kids who was literally easy to raise. I mean, he liked watching movies. He was a people person. As long as we joked, as long as he had some corn, that was his favorite food. He was good to go. And into this day, even though he's been gone for almost 11 years, it'll be 11 years this December,
We still run into people, former teachers, former coaches, his former classmates, who remind us of times where he did something or said something, you know, to make their day. He was a very compassionate person. And I was asked just recently, would he be proud of the work we're doing? And I was able to say, I know he would be, and he would not be surprised because he was a person.
who even as a high schooler understood the value of helping others. I think it's important to highlight you was a leader in every sense of the word. You modeled what he expected as a football player, as an Eagle Scout. And we constantly heard that as well, just his influence upon the lives of people based on his example and leadership. One of the greatest stories for me as a father was
one of his coaches sharing how our son, Lilly, challenged him to be a better man. So that was, I think, a testament to just his leadership as a young man and the impact and influence that he had. And he was a regular kid, a teenager, because he didn't break a lot of rules or anything like that. But, you know, had to yell at him all the time about keeping his room clean, you know, all of those typical things.
about studying and not just doing enough to get by, you know. He was a great son and obviously a good friend because again, some of his friends from middle school and high school still keep up with us. Call us, check on us, you know, all the things.
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Well, he was a sophomore in college. was first semester, second year. He was at Southern Illinois University in Carbondale. We didn't talk to him every day. mean, you know, college kid having a great time doing what he did. It was final exams that he wasn't feeling well. Wasn't sure what was going on, but he was like, yeah, but I'll be fine. I'll get through finals and get home. And so all he generally said was that he wasn't feeling well. So we knew.
that part. He did finish up final exams, best that he could apparently, and then came home with his best friend, Taylor Johnson, who he was best friends with since they were literally born. We jokingly called them twins. She drove home and she did let us know that the whole ride home, he was pretty much just kind of out of it. It was December.
And it was a pretty cold December, December 2013. And we all just kind of assumed cold, because it was general cold-like flu symptoms. The night they got home, it was a Friday night, he was just like, yeah, I'm good. I'm just going to go to bed. And so I was like, OK. And then the next day, we did our normal kind of get up, you know, college kids, sleep in. And we expected that. And when he did get up, he just he talked about, you know, just feeling pretty yucky.
He did tell us that he had thrown up during the night. But again, at that point, it's a Saturday, I'm calling the ER just to think do I need to bring him in. And I was told, it's the middle of the winter, it's flu-like symptoms, keep him hydrated, make an appointment with your doctor on Monday morning. And he just didn't really get better. He got up and he got dressed and he actually had some friends come over.
But he was still kind of lethargic. I called the emergency room again and I was generally told the exact same thing that it's, you know, it's the middle of the winter. You're telling us that he's home from college. He's probably got some virus or something. Keep him hydrated and best things you probably do is make an appointment with your doctor. So as a family, we just were like, okay, well, you know, he laid on the couch. We kept our eyes on him, all of that.
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Sunday morning, the rest of us got up to go to church and he was like, y'all, don't have it in me. Can I just stay home? Because we go to church in the house. we're like, yeah, you're fine. Go, you know, get you some rest. That Sunday afternoon, we watched football like we always kind of do. Again, he was lethargic, but we were still thinking flu-like symptoms. had the flu.
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Later on that Sunday evening, after everybody had gone to bed, I went down to his room, because his room was in the basement, to just tell him good night and to check on him. And he said, Mom, I can't breathe. And at that point, I was like, no, we're going to the emergency room. I woke my husband up, and two couldn't get up the stairs by himself. So my husband pretty much carried him up the stairs. And again, he was a pretty big boy.
And we were on our way to the emergency room. I was in the front seat. My husband was driving and two was in the back seat. And I noticed Tim start slumping over and I jumped in the back seat. I began CPR and my husband called 911. Ambulance service fire department met us on the side of the road. They moved him from our car to the ambulance. Christie rode with them and then I...
followed. And by the time we arrived at the hospital, Kristy pretty much told me that he was gone. But the doctors were doing everything they could. They were doing their part. They were applying everything they were taught to do. And then they later came in and communicated that he had transitioned.
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So as it relates to the signs and symptoms and things of that nature, we really didn't connect any of the dots. It wasn't until after his death and the coroner communicating to us what was the cause of his death that then our, then the children's pediatrician reached out to us to share,
I want to recommend that the other two children go in to get tested to see if you have any kind of trait that contributes towards blood clots. So that was our first awareness of blood clots and traits, hereditary, that can contribute toward that. So it just, it started us down a road. Then once we started learning about blood clots, then we started hearing stories. So Taylor is friends.
mentioned, he did complain about his calf hurting a few days before we came home. You know, he was struggling to breathe a little bit. Once we started becoming aware of blood clot, we were connecting the dots of, he was experiencing these signs along the way, but we didn't know. So we didn't know to communicate to the emergency personnel we call the hospital.
of, you know, not only is he lethargic, but he's having problems with his cat. We just didn't know to be able to help them to respond differently to the concern that we had. So we didn't know anything as far as signs, symptoms, to be able to advocate for our son, to talk with an informed understanding with expectations from emergency staff.
And I think that was the greatest frustration as we talked to, you know, the doctors. We later discovered I have Factor V light. My youngest son has Factor V light. But as we talked to our doctor, Dr. Tarantino, his communication was most people would survive blood clots if they knew the signs of symptoms. We didn't know the signs of symptoms. And I think that was our greatest frustration. Obviously, the grief.
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frustration of losing a child, but just the fact that we should have been able to be knowledgeable, to be able to provide a little more help to our side. think it's been the burden for us. Well, I would say it began as a result of us being the type of family that we're like, okay, we don't know how we got here or why we got here, but we got to do something with this. We're not just going to sit in this pain. You know, we
We can't stop what again, what has happened to us, but we're determined, you know, to help other people. So we literally sat around with, as Devereaux mentioned in the beginning of our conversation, our younger two biological children and then our godchildren. And we were like, what can we do to get this information out to help people? And thus the DH2, Devereaux Hubbard Second Foundation was born literally around our kitchen table,
tears and tissue and snot and what are we gonna do? As I was researching information, just trying to learn as much as I can, I came across the National Blood Clot Alliance website. And as I came across the website, I noticed that they supported and encouraged family in doing a 5K walk to educate people. So as we talked about forming a foundation,
We had our first walk that spring of 2014, that August of 2014, because I read the website like, hey, we have this organization. They have kind of a turnkey support system of putting on the 5K, let's do it. So they really helped us initially just to think about, okay, where do we start? How do we organize and what do we share? So we just followed the template that was laid out.
for our first event, which was in August of 2014. And since then, we've watched everything that takes place. And so we've done what we call the hustle and flow during March, because March is Blood, Cloud, Awareness Month. So again, the concept of getting people moving, keeping yourselves healthy, and knowing the information. So every event we've done, whether it's
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You know, like I said, the hustle and flow, the 5K, what we call our run, walk or trot, because again, we want everybody to be able to participate. It's been all about getting the information, sharing the information and being your own health care advocate.
I think since then, each year, what we find is people share their story and how what we're doing is helping as we continue a relationship with Dr. Tarantino and his office, BCDI, here locally. He's constantly sharing with us that we are making an impact. They're hearing it from people calling their office as patients. And as we continue to evolve, I think our
growing challenge was this is great, but how do we do more? We're a small family foundation. You know, we don't have a lot of people resources to get things done, but how do we do more? So that's when we decided this year in celebration of our 10 years to do a gala as a fundraiser event. And we were able to have a conversation with our local hospital entity.
Just to be able to say, hey, we want to educate people more on size of symptoms of blood clots. We realize we're limited. We're hoping to raise this much money at our gala. We're hoping to have at least 20,000 to be able to contribute. Wouldn't you be willing to partner with us to leverage your entity and facilities to create information so that it's available within your facilities? Think that nature.
The conversation turned out better than I expected. Keith Knapp, the president of the West Region of Carle Health, talked through it with me and he provided information to share, you know, hey, as a doctor, we normally do what's normal and based on what we see most often. So even as clinician, we will overlook syringes and symptoms of blood clots because we don't see it that often. So he threw out in the conversation of, yeah, we want to make sure we educate.
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patient, but we also want to add some form of reminders for our clinicians and staff so that they're aware. So that's led to us beginning a partnership between our foundation, Dr. Tarantino's office, DCDI, and the Carle Health West Region hospitals, which made up of three hospitals and a number of different offices where they will partner with their team.
to create the resources and then disseminate that information throughout all of their facilities and with their staff, just to make sure that we can now raise the bar on educating people. Because we were telling them, we don't want people to find out when they enter into a crisis. If they're sitting in a waiting room with their family member for, you know, getting physical therapy, we want them to be able to see something in the waiting room.
that will give them the information prior to needing the information so that when they need it, they already have access to it. So we're excited about that partnership.
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And you have made an indelible impression on everyone. especially our mayor. Yes, Jackson. you know, one of the things that I was so struck by when I was at the event was it was for some people listening to them talk about too, was like they just talked to him yesterday. You know, like it was just so...
Like it just, he was just here. the now sometimes things fade with time and that was not what came across at your event. So I thought that was really beautiful actually. So I also wanna talk about a few things, which is, and you just said it really well that this is bigger than just one person. This is all of us having to work together.
And you're right, because there's this misconception that it only happens to old people. And that is so far from the truth. And so we have to do a better job of sharing, you know, two story and other people's stories so that people understand that this doesn't happen to old people. But we also know that the data around the black community is way worse than it is for others.
especially for Caucasians. And so I want to talk about how, you you're dealing with raising awareness, but you're also raising awareness within the black community, your leaders in the community. How does that influence what you share, how you educate people about this? And how can we collectively do a better job about reaching people in the black community? No, great question.
I think about it from an umbrella of trust. think for many within the black community, it's a historically trust. There is limited trust with the medical community, limited trust that their voices will be heard, limited trust that what they communicate, they believe is taking place in their body will be received well and that people will respond appropriately.
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So one of the ways specifically as a black male that I've worked to address that is referring people to people that I trust. So challenging each year around November, I do no shave November to challenge me and, you know, as it relates to prostate exams, things of that nature. But then I take it as an overall umbrella. So a part of my conversation.
on a continual basis is, okay, when's the last time you've seen your doctor? If you don't have a doctor, let's talk about you getting a doctor because your physical health is going to impact everything about your life. And really work to partner to say, okay, here are some doctors I know you can trust. there are a number of men specifically that I share a doctor with because I referred them to my doctor, right?
And the same with, you know, when we talk about bleeding and clotting, you know, issues. We have a number of people within our church. We have a great cancer support network within the life of our church. And they do a great job talking about the potential for blood clots and then making the connection. So they have a sister that they support each other, but then making the connection to various doctors that they trust.
So I think for us, that's really where we're seeing an impact be made, whereas we have the broader conversation. Come back to we understand it's an issue of trust. That you want to feel your value. You want to feel it though they're concerned about you as a person as you go into the doctor's office. So here are people and places that we know will treat you with respect.
once they do that, we just want to encourage you to have conversations with other people encouraging them to do the same. So I think that's one of the ways that we're seeing success, having the conversation of, we understand, especially for older members of the black community who are in their seventies, right? Who have experienced so many things where they have not been valued and respected, just affirming, hey, we know your experience is your experience.
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We can't deny that, but we just want you to know that in many spaces, things have changed. And we can't speak for everyone, but there are some people we can speak for and make recommendations based on that. So that's one of the ways I think we're seeing success operating from a place of trust. So we invite doctors in, we invite entities and mental health professionals in because we realize if they don't trust them.
And oftentimes they're going just based on our word. Like, hey, you're my pastor. If you say I should go here, I'm going to go here because I trust you more than I trust them. So just trying to lean into that space of trust. As well as I would say, BCDI, which of course you met and we partnered with a lot, told us several years ago that because of our faces,
they've been able to get in front of groups that they haven't been able to get in front of before. So we embrace that, we partner with them, and we understand, just like Devereux just said, why many people in the black community don't trust the medical community. So we're willing to be the face. We're willing to be the ones that open the door. We're willing to be the ones that call the meeting or create the event.
of which African-Americans, blacks in our local community will come to, and then we're able to make the connection. And we're willing to be the connectors. And again, for us, it boils down to not wanting to see anybody else suffer. But we understand why, you know, people are not necessarily their best own, you know, advocates for their health, because they don't think people will believe them, they don't think people will listen, as well as,
you know, something as going to the emergency room or even if you are really, really, really sick, refusing to get in an ambulance because at end of the day, you're barely paying your bills. So, you know, adding a medical expense is like, I'll be okay. So one of the other things that's important to us is trying to make sure people understand that there are ways to get these things covered so that
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you can get the medical help that you need and deserve. So we're willing to do that as well. We're willing to be the face. We're willing to be the connector for us at the end of the day. We're willing to do whatever it takes to help save lives. Yeah. And I'll add, we have, I think another thing that helped is we have a number of medical professionals within our church who serve as translators to some degree where people are like, yeah, I don't know what they're really saying.
And so they're like, okay, well, next time you go, feel free to call me, give them permission for me to listen in, and then I'll share with you what they're saying to make sure you understand so that you can make an informed decision. So that's been helpful for us as well, because sometimes the people are just embarrassed to say, I don't know the terms they're using. I don't understand what they're talking about, right? So to be able to connect them with nurses within our community,
just to say, okay, here's what they're talking about, here's what this means. And then they can convey it in a way that's relatable to them. I said, okay, why didn't they just say that? And honestly, yeah, we have some nurses who are phenomenal and they just come alongside and help our people understand what's going on with them. That's actually a great idea that
the translators, which everybody could benefit from because it is confusing and there's too many words to describe it and there's so many different signs and symptoms related to it. And I love that idea. think that's absolutely brilliant.
The Illinois legislation I want to come back to for a second.
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We're not gonna take this anymore. We are not gonna take this anymore. So I am tired of waiting for DC, you are tired of waiting for DC and while we're waiting for DC to get their act together, we're gonna take this to the states. And so for, and it's hard, right? It's hard. I mean, I'm sure you guys are like this. I have days where I've got tens of energy and then I've got days where I'm I'm sick of this.
You know, tired, right? It takes a lot of energy. But for somebody who's listening to us in this podcast and has experiences that has lost a family member or a friend, what do you say to them? They're in a different state. How can they get involved? Like talk to us about your experience. I think just initiating the conversation. Initiating the conversation with your various representatives within the community and initiating the conversation with
multiple representatives within the community. Just to say, you know, I, I'm aware that we, to my knowledge, we don't have a legislation in this place. What are your thoughts around that? Is this something that you would be willing to dialogue and discuss with others and for us to begin to work together? I think initiating the conversation with the expectation that as, as a representative of the
community of this state, we expect you to be concerned about the people. And this is impacting your constituency. So since it's impacting your constituency, then this should be a priority for you. I understand you have a whole bunch of other things, but beginning the conversation and then beginning to see who potentially would weigh in. For us, it helps.
that we have relationship with our state rep, you know, prior to initiating the conversation, but we also have great relationship with our local director of our health department, right? So that helps as well. now because of relationship and when you say, Hey, this person is on board as well. So being able to build relationships, again, understanding that it can't be done by one person.
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but it's gonna take a collaboration of people working together. So initiate the conversation, see who leans into the conversation and go with the going crowd, right? So there are people who didn't choose for whatever reason to get on board, don't get bogged down with them. Hey, that's their choice. Those who get on board, move forward with them and create the momentum that you need.
and what I find, especially in the political space, very few politicians want to see things moving forward without them. And I would also like to jump in and say, I am a person that likes to talk to people a lot about local power because there's so much power in what's happening right here at home. It's a blessing for us to be able to partner with National Blood Clot Association. It's great. Alliance, I'm sorry.
but we also have to be able to have the conversations with local organizations right here in Peoria. And that's why we try to make ourselves available to the local things that are taking place. And just like you said, we're sick of waiting on DC. We're gonna keep fighting the good fight, but we've got to acknowledge the power that we have right here at home. And that's what we're focusing on. Yeah. So I'd like to say to people who are listening to us,
The three of us have gone through this, right? We've been working on legislation at the state level and we've had some success. We need to have more. If you've got a question, call us up. Look us up. We're there to support you, but grassroots, local builds a national revolution and we just have to keep pushing this along on a state by state, city by city, county by county, whatever it is.
to continue to build awareness. And Christy, you actually touched upon something that I think is really important that most people don't realize. We don't actually know how many people are getting blood clots because it's not tracked the way it is for other diseases and disorders. There's no money, state or federal, that is actually put towards this problem. And so these numbers that we throw out, 100,000 people a year die, 900,000 people get one, it's way too low.
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You cannot, if you talk about this, find somebody who has not been impacted somehow. The person who delivered a fruit arrangement to your house, losing his daughter. Every single day of my life, I meet somebody that has been touched by blood clots. And so I think it shows how big this problem is. We don't even really know yet how big it is, but it's huge and it's growing. So for whatever reason, I mean, I'm a survivor and I'm lucky.
I wish two was with us here today. I wish we weren't having this conversation together, but you're channeling this and we're for whatever reason, I don't know if God's elect us and said, you guys need to fix this problem, but here we are. And I want to thank you for trying to fix this problem. Yeah, it's a privilege in life. You can't change what's been done, but you can make an impact going forward. And I believe the
Sometimes pain serves as a catalyst. And I think our pain then our catalysts to say, impact are we gonna make so that more and more families are staying because of the partnerships that you established. I'm able to hug my child, my grandchildren, my wife, my husband. And I think for me, that's what keeps me going. Just knowing that it's worth it. It really is worth
So we appreciate your partnership, your encouragement, this opportunity to share our story and that's going to have an impact near, succumb beyond any of our imagination. So I just encourage you to keep pressing. Thank you. And I think we're all here because we don't want other people to experience what we have experienced because they don't have to. Anyway, I want to thank both of you for joining today and sharing to story and
your time and love and energy and effort to combat this with us. So thank you. Absolutely.
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We want to thank Devereaux and Christie one more time for being here today and sharing their journey and Two's legacy as they continue to spread awareness on the dangers of blood clots. Thank you for joining us here today on another episode of Taking a Breath. For more information on risks, prevention, and community, please visit StopTheClot.org. We know the patient because we are the patient.
Together, with listeners like you, can collectively stop the clock.
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