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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.
In moments of loss, we do our best to be there for one another with love and comfort in navigating a world without. When I turned the corner to go see where my brother was at, I heard my mom behind me. said, he killed him. In the darkness of hindsight bias and the unimaginable pain of reiterating over and over the what ifs of the scenario, how do we find softness and forgive ourselves in the reality of immense grief?
I looked at the doctor, they had tried to revive him, I'll never forget looking at the doctor and I told him, I said to him, said, what did you do?
Every six minutes, somebody in America dies of a blood clot. Isn't it time people started to pay attention? We're here to change that statistic. Welcome to Taking a Breath, a Stop the Clot podcast. An award-winning 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 you need to prevent this silent killer.
My name is Leslie Lake. I am the volunteer 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.
Sometimes the only way forward is navigating and carving a less treacherous path for those who are sure to follow. How do we use our experiences to make life a little easier for those yet to experience it? Our guest today knows exactly that. After the loss of his brother to a clotting event and experiencing several blood clots over several years himself, our guest understands the power of advocacy.
and what systemic change means for the future of families everywhere. Today, it is my pleasure to welcome someone who's making a difference day after day. This is Florida State Senator Chevron Jones.
My name is Chevron Jones. I am a blood clot survivor and I am happy to be here. I represent the 34th Senate District here in the state of Florida and I look forward to this conversation. I did not know initially what was going on back in 2009. I realized that it was, well, I at the gym, came back from the gym, got home, and I just realized that I couldn't breathe. It was hard for me to catch my breath. And so I'll never forget taking in a deep breath.
and breathing out and I'm like, okay, well maybe that will help me get my breathing back at some type of rhythm. But it wasn't, it just wasn't working. I didn't go to the hospital right then. It wasn't until I felt like I was catching a cold and then my left leg started hurting me so bad. I swole up that evening and it was warm. And I remember telling my
Now ex-wife, I don't feel too well. And we went to the emergency room, the doctor, he asked about my breathing. They took my oxygen level. My oxygen level was just a tad bit low, lower than normal. And so they said, let's get you in to do an MRI. They took me in to do an MRI. And when they did the full body scan and that's when they saw that I had a blood clot, it wasn't even an MRI. They did a sonogram of my legs.
my groin and everything. And then that's when they saw the clot. And they immediately took me upstairs, put me on bed rest. I was in ICU unit. I'm like, why am going to the ICU unit? I feel perfectly fine. And the doctor was like, no, you're not fine. Like you have a blood clot. And so that was the first time that I caught a clot. Went back home. And by mind you, my brother, who is now passed, he passed of a pulmonary embolism.
My brother, about three years prior, we were in college and on his way driving home, thank God, he went home early. Something told him to go home early. He went to church that Sunday and he played drums. And on the drums, same thing happened to me three years later, and he couldn't catch his breath. And he went to the hospital and he had a blood clot. Getting back to 2009, that was my first blood clot.
Then in 2011, same thing happened. Couldn't catch my breath at all. I was teaching at that time, I was driving home and I couldn't breathe. And I told my partner at that time that I don't feel good and I'm going to drive myself to the emergency room. I got there and the doctor said, I think you have a blood clot. Same thing. This time they did an MRI first. And then after the MRI, they took me down to get a ultrasound. After that year, it was in 2015.
when I got my third blood clot and that's when my den doctor said, I need you to go see a hematologist. I went to go see the hematologist and the hematologist told me that I had protein S deficiency. That's when I was placed on Xeralto, 20 milligrams that I had to take every day. And so they thought I just needed to take the Xeralto for maybe like a month. But then later on that year, I had another small clot. So I had to stay on Xeralto for now, only for rest of my life.
Fast forward to 2017, that same brother who he drove from Tallahassee home and had a blood clot. My brother passed away of a blood clot, of a pulmonary embolism. And I think my brother also had protein S deficiency and he did not know, which leads me to where I'm at today. The second one, cause I'm asthmatic, so I'm thinking, well, maybe I'm just having like a asthma attack or something. So I didn't think anything of it. The third one I did, the third one I was like, I'm having an episode.
It causes great anxiety because even like now, even when I'm in the gym and I'm working out, sometimes I have to calm myself down because I know it's not a blood clot, but then it's just I've had these occurrences and my brother has passed away. And so I just get fearful. But, you know, I can't think about it at all. That's the fear that I have when it comes to pulmonary embolisms and just blood clots in general that people
People just don't know, people are not educated on it. And people who pass away for various different reasons, I wonder how many of those people who, I spoke with one of my colleagues maybe like three months ago, and said they don't know how her brother died. She said she just found out her brother said the night before that he couldn't breathe. And I said to my head, I'm like, God, what if he had a blood clot?
I was a chemistry major in college, biochemistry major in college. so outside of understanding the body from my human anatomy class and understanding, reading about blood clots, that was just my true understanding of it, right? And it wasn't until after I had my third one that I started doing my own research on my protein S deficiency, on how it's hereditary and all of these things. And people with protein S deficiency are more prone to heart attack and strokes and things. So now that's when
That was when I became more, wanting to know more and make myself more aware. I know doctors are doctors and I know they are very astute in how they handle the body. But I also, when I asked myself the question on whether the doctor, whether he negligent in a few different ways. My brother, the night before, about 11 o'clock that evening,
My oldest brother and I, along with my middle brother, we all had a group chat. We always would joke on there. And my brother was just joking. Maybe an hour before my sister-in-law sent us a text message and said that I'm taking Keneel to the emergency room. And we were thinking to other, we're like, okay, well, maybe he's just not feeling too good. He needs to go to the doctor and that's fine. Something told me not to turn my ringer off that evening. Left my ringer on.
I'll never forget this. It was 3 16 in the morning, my sister in law called and said they had to intubate Camille. And again, from my human anatomy class and just from my basic knowledge of the human body and even the process of certain things in the hospital, intubation, you need a machine to breathe for the individual. So I said, why are they intubating him? And she said, everything's fine. But in the background, I
hear my mom like screaming, but then I heard my brother say, mama, I'm fine. So that gave me some solace. I'm like, okay, well maybe he's okay, intubating him, maybe just to calm him down so they can just kind of put him in a coma just so can do whatever they need to do or the body could do whatever it needs to do. Well, then until I got to the hospital and I never forget walking into the hospital and I did not think.
of anybody where I didn't see anybody, although there were people in there. And I remember turning the corner, my mom was sitting on this chair and she was had her hands between her legs. And there was a nurse that was consoling her. She was rocking back and forth. And I think she knew that my brother had already passed away and she's crying. She said, go check on your brother to make sure he's OK. But I think she already knew, I think she was in denial. And then I walked around, there was a doctor that was there and the doctor who's there
My mom had already said that when I turned the corner to go see where my brother was at, I heard my mom behind me, she said, he killed him. And I looked at the doctor, they had tried to revive him, I'll never forget looking at the doctor, and I said to him, said, what did you do? So, and I don't know if the doctor knew that that's what Keneal was dealing with. And then I,
I battle with myself so much now because, and by that time I was very clear as far as what a blood clot was. And so I beat myself up often because I asked myself the question, and maybe I should have with it. Cause I probably would have told the doctor, like, yo, I think he's having a blood clot. But I didn't, right? So I can't live there anymore. I get emotional, not because I really do miss my brother, but it's always the one thing, of course I'm human. But I don't know if a lot of doctors have the awareness also.
I was happy when the Atkins came and not just with their story, but also with their advocacy. And that gave me the opportunity to jump on a bandwagon of something that's dear to me because my dad calls me, he calls it, me taking Ziralta every day. My dad's a pastor, so he calls it. I believe that you taking your Ziralta every day is the thorn in your flesh like David. It's your reminder, right?
My advocacy now is even being a part of the blood clot community and what the state of Florida has created, like the first of its kind. That's when I really became more interested in making sure that we get the word out of not just about blood clot awareness, but helping individuals understand what it means for you to make sure that you go get checked. If your family's prone to strokes and your family's prone to heart attacks, most people don't think that I need to go see a hematologist.
Some people don't even know what a hematologist is. But I can guarantee you if more people wanted to go see one, more than likely they would see, but they're not also know it becomes an insurance issue, right? So it's also about how do we educate insurance companies when it comes to blood clot to ensure that when people need to go see these specialist doctors that they're not going to do it for their health, but they're going to do it for their health. It doesn't have to be life threatening. I'll be honest with you. I'm at a place that...
The moment I feel like I can't breathe, I mean, if I'm having like this anxiety moment to where I'm like, oh God, I to go, I should go to the hospital. It has happened. Once a year, I make my way to the emergency room because I fear that I'm having some type of episode. Soon as I say I'm Xerox, the doctor's like, okay, we're good here. I'm like, no, you still should check me. I still wear MRI because I just want you to be double-shoe. And I've never been denied an MRI. I've never been denied a...
ultrasound when I asked for it and because I am prone to blood clots, the doctors are like, absolutely, let's go do it. In the medical industry, just like any other industry, mistakes happen. Whether a misdiagnosis or a misunderstanding, small oversights can be the difference between life and death. Here to discuss protein C and protein S as clotting contributors and the importance of knowing your status as a thrombophilic individual.
This is Dr. Jeffrey Klein. The way to explain protein C and protein S that I believe helps people understand it is they're like traffic cops. They are the two proteins that slow down the clotting process. If you don't have any traffic cops, people are going to drive at a very fast speed. That's what they do. And these proteins that are designed to clot the blood are going to work unimpeded.
Protein C and protein S certainly are inheritable causes of blood clots. This is a very important thing. If you happen to have a family member that's had a blood clot, whenever you are in contact with the healthcare system, you need to actively tell the physician or the PA or the nurse practitioner or whoever is seeing you. I don't care if it's in an urgent care for a cold. Tell them you had a family member who had a blood clot.
It kind of doesn't matter if it's protein C or protein S because there are multiple other reasons that you could be what's called thrombophilic, meaning that your blood loves to clot and make sure your doctor knows that.
So I have to say, like, listening to you talk about going to the emergency room and when I fly or I get a pain in my chest, I immediately go into, my God, it's happening again. I'm also on Xeralto and I had to go to a therapist for this because it had like taken over my life. And I don't think most people realize how so many of us deal with the mental health implications of this because we look normal.
Nobody's normal, but we look normal, but you're experiencing these twinges and pains and whatever. And I was just so terrified I was going to get another one. And it's very, very common. And then, you my therapist said to me, you're on an anticoagulant. It's not 100%, but it's pretty darn close. And the importance of taking that medicine. I wanted to ask you, when did you hear about Emily and her passing?
What was that like for you processing that? Because I'm sure a lot of emotions came rushing in at that point. Yeah, Leslie. First, I want to acknowledge you seeing a therapist. I'm also an advocate of therapy. And for those who amplify it, thank you. Emily, I found out about Emily through email. When a deaf in a former legislator or current legislator, when it happens, they send a mass email out. And that's when I found out about Emily. But I did not know how Emily died.
until Commigy. And I was a wreck when I found out that it was a blood clot. I was a wreck, Leslie. One, because Janet Atkins, although on different sides of the aisle, we have always been not just cordial friends with each other, as I am with a lot of my colleagues. But that's when I found out about it. And I was devastated, one, for Janet, but devastated also because
Getting to know the family now, it's part of them and always will be. And there are good days and bad days, but there is just a sadness that permeates all the time. Like it's just there all the time. And a little bit of, at least on my side, a little bit of survivor guilt, quite honestly, because she was so young, 23 years old to be taken like that. Well, you were involved in doing something that is...
that has never been done before. I mean, we've been trying to get this done at the national level and it's been hard. We keep pushing through. How does it make you feel now knowing that Florida is actually leading the way and that you were part of this groundbreaking legislation, hopefully being rolled out across different states across this country? I mean, you're a powerful voice now. Well, one, I love when good news come out of Florida. And so I will say that this is something that other states should model. All right.
and we should amplify so people can understand and it should be a greater awareness. And I wish that it was more of an awareness in communities where people could be drawn to where they can learn more. Like even when there was a health fair that happened in October here in Miami Gardens and I asked the councilman, he was talking about all the people who were gonna be there, asked, do you have anybody who's gonna talk about blood clots? And they didn't, because no one's thinking about it right now.
People are talking about heart attacks, people are talking about strokes and all those things, all important, but there's a precursor to that that probably we should talk about. That's probably the cause of the heart attack or the stroke, and that's blood clots. Yep, absolutely. And I think I had no appreciation. Like I had heard the term, you know, I was on birth control many years ago and obviously I'd heard the phrase blood clots, but I didn't really know what it meant until it actually happened to me.
And then when I learned about how many people get this and how many people die from this and how many people are susceptible to this, I was like, this is a public health crisis. Like we dwarf opioids, we dwarf now HIV AIDS. And so this is why public health campaigns work and are needed so that we can get in front of the public and educate them so that we can get in front of clinicians and we can educate them. One of the other things that I wanted to talk to you about is
You know, and again, as I started to really immerse myself in this space, health information is not equitable and everybody needs this information. But certain people are at a much higher risk of getting blood clots, specifically the black community and in particular, black maternal health. It's a leading cause of mortality. And so you sitting in your district, you having a voice, you having to experience this as a black man.
How do we do this? How do we get in front of the people who aren't getting the information and give them the information that they need to protect themselves and their families? Yeah, that is a very thoughtful question. It's funny you say that about a month ago, I spoke with the Senate president and because they are a lot of the health clinics within my district are closing. I represent the largest black district in the state of Florida and the health concerns in this district are great. I know for a fact
that in the black community, stroke, these are high risk things where many people don't get treated for because they don't have access. And I shared with him that the elimination of health clinics in our community is a problem. You can't just tell someone they can catch the bus and go to the ER. While that might sound convenient and easy, it's not for the individuals who don't have the $1.50.
And it might sound small, but it's not. So Leslie, my continued advocacy would be to ensure that the Black community and another community that we're going to speak about is the rural community. Absolutely. Our rural community and our Black community, we have to figure out a way to ensure that they have access to health care. I call the urban community, I call it the Starbucks community because there's Starbucks on every corner.
The Starbucks community is like, you have access, mean, there are a lot of clinics, there are the hospitals that are right there in the area. But what about Liberty City, where the access to the hospital is just not close? Jackson Memorial Hospital is not that close where someone could just walk or drive there. So it is an access issue. And I've spoken to the Senate president about it I will continue to do it. I mean, these are things that are not, these are not partisan. And I also will put out there that
Even pulmonary embolism, there's no D or R or I behind this or anybody's name, even those who have passed away. So when we're talking about truth and we're talking about what it looks like to ensure that people have access, I would hope that we're looking at, we just want people to be healthy. Right, exactly. Because this is very, very preventable. It is preventable. You the majority of it is preventable and the majority of it actually happens in a hospital or post-hospital setting.
And so when folks are going in for surgery or treatment or whatever it may be, not even in a hospital, but an ambulatory center, you're getting hip replacement or knee replacement or whatever it may be. That family history is actually the most important thing that can be shared and risk assessing somebody should be an easy thing. And this bill is hopefully going to, you know, really drive that process and bring these numbers down. It's going to take some time. would love for National Blood Cloud Alliance to partner with you.
to reach communities that need this information. We did our first black church bus tour last year through several Southern States and partnering with these churches, coming in, educating people about blood clots, maintaining that relationship. It was amazing personally, but the amount of people that we educated about blood clots and they're gonna take that information and share it with their families and their friends and the people they work with. And that's so important that we do that.
It's so important. So I would love for you to think about partnering with us. March is Blood Clot Awareness Month. We can make that happen. I don't have to think like right now. Yes. Let's do it. I don't have to think about it. Awesome. Awesome.
So I want to just kind of come back to, because we always want to share with people signs and symptoms. I know you talked about being in the gym and kind of having a hard time breathing. You've had three blood clots now. Can you just walk us through what those signs and symptoms were? that's, know, Eric alluded to this before. It's silent. It's sneaky. It kills people. But the signs and the symptoms, there's such a huge spread of what it could be.
For me, I couldn't breathe. Like it just it came on like that. And I was like, Oh my God, I'm having a heart attack. But I don't have pain in my chest. My left arm doesn't hurt. I didn't know what the heck was going on. But just walk us through again what your signs and symptoms are so that people can hear from your voice learn from you what they should be on the lookout for. Well, first of all, I thought I was having one this morning when I was at the gym, but I figured out my
I don't mean to laugh, but I'm right there with you. genuinely, I told my trainer, I'm like, I need to sit down for just two seconds. That's me. That anaerobic state gets me all the time. the time. I'm like, I'm having a papasode. And you know, it's crazy because I don't know if this ever happened to anybody who's listening or even to you, Leslie. But I miss, I ran out of medication the day before yesterday. This is hot off the press.
And I was, had such anxiety. yeah. I had such anxiety. And of course, I took it this morning. And then when I got to the gym today, I'm like, my God, I'm having an episode. Clearly, I was just trying my heart like happy day out of this chest. But some of the symptoms that I, the first time, I thought I had a cold.
You know, feel when you're about to catch the flu, your body feels like real icky and that's how I felt. And that was the first time I thought it was a cold and clearly it was a blood clot. The second time it was me, I just, could not breathe at all. I could not breathe. And let me go back. The first time it was a cold coupled with the day after that I couldn't breathe. The second time I just, couldn't breathe. I was trying to catch my breath, couldn't catch my breath. And here we are. Leg swell.
warmth in the leg, that's one, or in the thigh, on the groin area. That's also one. I hope my nephew was having some leg pain a few weeks ago, and I told him, is it swollen? Is it warm or anything? And he said, no, wasn't, because the hematologist a few years ago said to me that one of your niece or your nephews, one of them also have protein S deficiency. They should get tested.
I tell my brother all the time, my brother and my sister-in-law all the time that they should. But those are some of the symptoms that I experienced. family history is one of the biggest risk factors for people. So if there is a family history, you got to tell people. If you have nieces that might take birth control, hormonal birth control, they need to know about it. If you have family members that are on hormonal replacement therapy, they need to know about it.
You know, you made the comment about the doctors. Sometimes they don't want to test. Sometimes they do want to test. But letting people know that there's a family history could be the difference between life and death. then knowing those signs and symptoms that you've experienced and sharing that with others. Same thing could be the difference between, you know, life and death. I'm going to stop there now that I have a recording of you committing to helping us raise awareness in March for blood clot awareness. My job is done now.
And I seriously, I really do though. want to commend you for being so honest, listening to you speak in Tallahassee about your personal experience, about your brother was heartbreaking. But we were so thankful for your support. And this is a game changer in Florida. This is a game changer across this country.
And so we're so thankful for what you've done for all of us. Leslie, and thank you all for your advocacy. And I'm so happy we are partners in this and I can't wait for us to work together. We should absolutely take this across the country and state. Well, thank you for joining us today and we're looking forward to developing our relationship together.
Thank you for joining us on another episode of Taking a Breath. We want to thank Senator Jones one more time for joining us today and sharing his heartbreaking and inspiring journey. A special thank you to Dr. Jeffrey Klein for his insight and expertise. For more information on risk, prevention, and community, please visit stoptheclawt.org. And if you wish to aid in our efforts of blood clot awareness,
Please consider donating to our cause at StopTheClaut.org forward slash donate. We know the patient because we are the patient. Together with listeners like you, we can collectively stop the clot.
For more information, visit stoptheclot.org.
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