An Honored Legacy with Doug Adkins: A Conversation on Grief and Systemic Change

The last memory I had is I, you know, knocked on her door Before I left to go do this training at my office and she had her door locked as she was getting dressed and I said honey I'll be back. If you knew that these words would be the last words spoken to a loved one, what would you say? I said, you know, I love you and she said, I love you too, Daddy. And those are the last spoken words between the

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 block clots from the clotting disorders community to the world. With the help of many notable Bloodclot 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 president of the National Blood Clot Alliance, and I am a Blood Clot Survivor. And my name is Todd Robertson. I'm the patient engagement liaison for the National Blood Clot Alliance, and I am a six-time blood clot survivor. And we're here to stop the plot. In the wake of the earth shattering devastation that comes with the loss of a child, how do you reckon with the reality of such a loss, or find the strength to keep going?

Our guest today is somebody who has unfortunately Reality here to discuss the and joy of Emily Atkins, as well as the groundbreaking political advocacy through the memory of his daughter, father, advocate, and blood clot prevention champion, please join me in welcoming Doug Atkins.

Well my name is Doug Atkins. I'm the father of uh Emily Atkins uh Emily was twenty three years old when she passed of a uh massive pulmonary embolism steming from a blood clot uh associated with an ankle fracture on her right side. Emily uh She's a big part of our family life. She was involved in my company. She was the people success officer.

Probably one of the happiest, sweetest, compassionate uh voices, pe people you could imagine meeting. Uh she was uh liked to have fun, she liked to giggle and she was my fun girl. uh was uh around. It was always you know wonderful to see her wit and humor and her insight and she Uh, mature way beyond her years. I mean, she was had a great maturity about her and great sense of compassion for others.

So Emily had a uh emergency gallbladder surgery uh on her brother's birthday, August the fifteenth of twenty twenty-two. She had some pain coming and going, so my wife took her immediately to the ER and She was treated down at uh UF Health down at Jacksonville, University of Florida uh has a hospital there and uh and she needed emergency surgery. And so uh she had that surgery and then about a month later, while she was at the office, uh she slipped on a wet floor and fractured her right ankle.

Just thought it was an ankle fracture. No big deal, you know, and so she um was placed into a calf. and told to immobilize for this next four week period. And uh and so she went to see her orthopaedic surgeon, um, and they removed the cast, they put a boot on And uh gave her a list of these exercises to do so she would exercise the ankle. On the X ray it showed that

The bones were not healing at the pace that they should have been. And so obviously that's a concern that obviously maybe not a blood blood f blood flow. I don't know what was impairing the the healing of of the fracture. So yeah, I was very excited about getting uh the uh the cast off and getting the booth.

Because she really wanted to get back to her house. Being with mom and dad's great, but being on your own as a independent twenty three year old young lady is uh better and so she liked her space and she liked her private time. And so, you know, she was fastidious about following the instructions she was given. She was very rule compliant, very rule driven, very compliant with whatever you told her to do.

So on the uh the morning of uh October twenty first, it had been cold the night before, and Emily has asthma. You know, she woke up and she was feeling a little dizzy and had ringing in her ears. So we thought, well, you know, this is the asthma acting up because of what had happened. I told her to go ahead and get herself a shower in case, you know, things did not improve, then we would just take her to the hospital and get hurt looked at.

She took her inhalers, um, and she was working. So, I mean, literally two days before she passed, uh, she was working on PowerPoints for training and He was uh working on uh that Friday the twenty first. And uh I had to leave to go do a quick meeting and I was gonna come right back. And then we had said that, you know, she's feeling a little bit better.

She was on the phone with the staff and they detected some raspiness in her voice. So uh they called my wife, Janet. Janet immediately called her. and uh immediately could determine she was in distress. So she she called nine one one and she told her she said, Honey, if you could open the front door so the EMT can get in, that would be probably helpful.

So literally the last thing Emily did before going into cardiac arrest is she opened the front door and uh the MT found her collapsed in cardiac arrest. They you we live two miles from the hospital. And I bought this house because it was so close to the hospital. And I thought, you know, that's a good thing and you know, if something happens you're pretty close and it could be a life saving decision. So they told my wife when she showed up that she still had a heartbeat.

And they wouldn't say anything else and then so they got her over to the hospital and then I pulled down to the hospital and of course They put us in a separate room. We thought, well, for sure, she's here in the hospital. This is where They can save her or they can help and the doctor comes in and he's shaking his head. He's just shaking his head. Not a word, just shaking his head. So we went in to see her and they were still doing chest compressions.

I've been in healthcare thirty seven years and aside from kind of a casual generalized intro or awareness of blood clots, I had no idea. No idea what I know about now. And so they just said there was nothing more they could do. And so we We prayed with her, we sang hymns, we it was just probably the most tragic day of my life. There's not a single day that goes by, I don't live this day. But this was all within an hour.

And so what we know is is that there's things that could have been done, should have been done, but more importantly, I think it's a matter of making sure people know who be risk criteria. Emily was a bit overweight. That's a risk factor. Her family had a history. You know, her grandmother had blood clots on both sides of the family.

Historically, every time Janet and I, you know, w we've been involved in Florida politics probably for, you know, about thirty years. And uh Janet served in the Florida House of Representatives for eight years. two years on the school board. She was she's been supervisor of elections here in our county.

But you know and I've been I've served on the Republican Party of Florida's executive board, but Yeah, the reality is is that every time you're confronted with something like this, you um you try to turn your attention uh in terms of what you know.

To uh something positive and to do something that helps uh create addition. The subtraction associated with the loss of a child is so earshattering. I mean I Reality is is that, you know, the only kind of place of peace or comfort you get is when it's through the process of addition, not subtraction.

Quite frankly, I've got a whole piece of legislation that I think would absolutely fix all of this, but getting consensus on it is maybe a little bit more difficult. So the legislative process is about building consensus. So, you know, we thought well Step one is getting this work group to start looking at the the data surveillance system, the standard of care, and there's ten other things associated with the bill.

that, you know, the work group is charged with. You know, but whether they get to all of'em, I don't know. But, you know, reality is is they they've got ten items to on their work list, but you know, the truth is is that uh we've got to get consensus about what to do and how to do it. We got up three, four o'clock in the morning to go over there and make sure we were there at every committee meeting.

And we were there to speak at every committee and you know, what was so remarkable about all of this was uh uh in a time of great political division in our country and and in our state here in Florida. Uh with this bill we come on agenda. Uh, there would be a hush in the room. We were all together for that minute, for that instant when this bill was up on agenda.

And for that brief moment, that brief window, and one of the legislative aides told me just how how, you know, unique that moment was, because for that minute, we were all for ready. We were all together. And so, you know, the bill had eighty three co sponsors to it, entire forest Senate. Governor Ron DeSantis um signed the bill on june the fifth. You know, he he also lost his sister, Christina DeSantis, to a culinary emblems on a blood clot. So you know, we know this touches everybody.

The last time we were all together was uh after the the pandemic we went to Denmark together. And um Emily loved to travel. We we took her to Jerusalem and Israel. twice. Uh she had been to Rome, uh took her to Paris after her graduation uh from high school. She has been to Switzerland and Austria and Emily was a leader and uh you would often find her mapping the direction, mapping the way for us, and telling us what train we needed to be on, telling us what gate we had to be at.

She had a great love for design and colors and painting and art. And you know, the last memory I mean I had is I, you know, knocked on her door on the before I left to go do this training at my office on the twenty first and uh And she had her door locked because she was getting dressed. And I said, honey, I'll be back. So I said, you know, I love you. And she said, I love you too, Daddy. Those are the last spoken words between.

The last spoken words with your daughter or your child will be the last words you remember. So, you know, if I was to give anybody advice, it'd be make sure the last spoken words you have with your child, even on your worst day, include the words, I love you.

When it comes to preventative care, we can try our best to recognize and diagnose a looming clotting event by recognizing and addressing the notable signs and symptoms. But what if the danger remained just as probable without any of the telltale warnings you and I are familiar with? Here to discuss the dangers of hidden symptoms and asymptomatic clotting disorders is Dr. Elliot Haupt.

Sometimes blood clots are to us as clinicians pretty obvious. A patient comes in with a very swollen leg, it happened acutely, there's no sign of trauma. Uh, you know, the top of our differential is that's gonna be a blood clot in the leg. Or a patient with a pulmonary embolism has all of the classic signs and symptoms. Their heart is racing, they're short of breath, their oxygen level on their pulse oximeter is very low. Those are classic signs.

But not every patient has every single one of them. Sometimes we hear stories of, well, you know, it just kind of felt like I had a little Charlie horse in my leg. And it's a little more subtle. And I think it's an important thing for patients to think about. You don't have to have every single symptom that you hear about.

to have a blood clot. And it might be a little more subtle than that. It might be shortness of breath going up the stairs when you never used to be. Uh or it might be, you know, we've talked with, you know, pro athletes. Are suddenly short of breath, like out of the blue. And they're still in way better shape than me, but for them and their baseline, it has dramatically changed. So I would say anything like that, that the are these subtle findings, talk to your doctor.

And see if it's something that it might be attributable to a blood clot. And there might be testing that could be done to see if.

Doug, thank you for joining us today. I feel like you and I have known each other for a lot longer than we actually have. And you use the word epidemic, which I know we've talked about before, and truly it is an epidemic. One of the things that I wanted to talk to you about because it was for me it was a very um emotional and frankly monumental day because I think it was the it was the laying the groundwork for finally moving blood clot awareness through this country.

And that was the day that the final vote came in for the bill. Can you talk about what that was like for you? Because I felt like Emily was with us. Well, for me that's uh last day when uh uh the bill had passed the Senate. You had all forty senators uh they unlocked the machine and asked uh all the senators to uh co sponsor the bill, which they all did.

Most of them knew Almy'cause so they knew her from when she was a house page and messenger in the Florida House, when Janet served in the Florida House from two thousand eight to two thousand sixteen with every single bill. They can die not for ill reason, but because they ran out of time on the calendar or because of just technical things associated with the legislative process. And so, you know, you're always worried and you have anxiety about when, you know, the process is

being slowed down by other more important bills, et cetera. And so but we were just uh on pins and needles, waiting for the bill. I mean, and you were there. You were there with us all day. And we were waiting all day. Yeah, well into the evening. It was just a moment of incredible emotion for us. uh you know incredible appreciation for the um fact that so many members of the legislature were coming together in a bipartisan manner on this one issue.

uh we know and we knew that there was uh subst substantial opportunity to um bring greater attention to this issue and to make

a difference, uh yeah, with the the work of the work group, which, you know, we you know, is is an ongoing process. So it was just uh Very emotional day for us because, you know, of all that we had gone through and that we were going through and, you know, we just felt like uh you know, it was such a blessing to uh see that final boat come down and then I locked the machine and and record the boat and uh that was uh

very dramatic moment in our life and uh you know, we've uh passed lots of legislation in Tallahassee, you know, but nothing nearly as personal or as meaningful. I don't think people truly understand how important this is what you and your family did. that day to get that through because it is the basis moving forward of something that has never been in place in this country.

And it will save countless, countless lives. And so as a survivor, as somebody who's involved in this on a day to day basis, thank you. I cannot even imagine the tragedy that you all have experienced and to be willing to do this is just Nothing short of amazing. So You deserve Emily deserves your whole family deserves a tremendous amount of thanks for this because this is the most important thing.

I think that has ever happened in the blood clot space. This is just the first step in our minds and uh we are uh very committed to um seeing systemic change here in Florida and uh we're hopeful that through the National Bloodflow Alliance that uh whatever change happens in Florida can then be uh taken to the national level and uh

Other states will uh states like to learn from each other. States like to take legislation from one another and and to um solve problems. And so things that are working in one state uh committee staff and legislators, you know, quickly adopt those to um carry into other states. And so we're hopeful that uh the Emily Atkins Prevention Act will have a kind of a

uh enduring uh impact on other legislation. So, you know, we actually drafting this bill, you know, whenever I kind of create a bill, I usually put things in there for people to take out. I won't tell you what they are. But uh reality is that'cause it's always a negotiation.

But uh this bill passed completely intact. And so the the items that are there that the the work group is empowered to take up is very powerful. I mean listen, this is One of the first work groups and I don't think a lot of people realize this is The work group has the power to take up the standard of care and say, here's what we think should happen.

And then the legislature has to take it up in debate and say, yeah, yeah, we agree or you know, no, and here's why, but it's very hard to overcome the impact and the power of a policy working group that has studied the issue. Very, very hard to go contrary to the recommendations of that work group.

Uh and that's one of the reasons you do it this way is complex issues, things that are new, the same sort you're gonna be cutting a new course in the side of the mountain. Well, you know, this is how you do it. And uh we wanna make sure that uh You know, we're set up for next year, for the next uh twenty twenty five. Let's you know, the the work group is required to issue a report on the uh fourth of January. The reason that date is so important is that Sam Lee's birth.

So on Inley's birthday, this work group will issue its report to the governor, Senate President, and House Speaker. uh for consideration in terms of whatever they recommend. I'm not sure what the what'll happen, but yeah, at the end of the day, it you know, again, it's an incremental process of of modernization and change. For our listeners, Emily's bill has been now rolled out into the state of New York. Uh it's in the state of Illinois, trying to get passed in the state of Illinois.

Um yeah, we're moving on to Connecticut. Um, and then of course you know we're working with representative Lisa Blunt Rochester in Delaware who lost her husband Charles to a pulmonary embolism and again, needlessly so, should never have happened. Um, and this bill is the is the catalyst and the baseline for everything that's being done now. So, you know, I I sit here today and and I thank you for doing this. Um you know, out of great tragedy has come

Something amazing that's gonna I think save hundreds of thousands of lives. Well Leslie, thank you so much for all your time and effort. Uh we we love seeing you. Uh I'm still uh I still need to uh I still need to send you a check for Dion Sanders uh Uh t you know, there was a story down at the Florida Senior Whipping Association, you know, we were betting on these uh these jerseys and

You know, and Leslie outbid me. I was like, Oh my gosh I said, so I'm gonna have to give run on down there and submit another bid but uh anyways I told her I said I'm gonna well well bid bitch for that, uh Dion Sanders versus I think you let me outbid you actually. Um There's no check involved, but uh I would be very happy to send the Dion Sanders uh sh sign shirt back to you. But um, you know, kidding aside, we can't thank you enough for joining us today and just your leadership and

you know, helping to save lives and put an end to this epidemic that is very um endable. And so I look forward to continuing to work with you and Jan and and Douglas uh going forward and You know, you're you're part of my family now. Thank you. Thank you. God bless you. We want to thank Doug for sharing his strength and vulnerability with us today, and for sharing the joy of his daughter, Emily Atkins, and all of the tremendous work being done on her behalf.

We would also like to thank you for joining us here today on another episode of Taking a Breath. A special thank you to Dr. Elliot Howd from Johns Hopkins for sharing his endlessly useful insight into all things clotting. 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, we can collectively stop the clot. Another everything podcast production.

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