In life, most of us are driven to do good things.
Though we may fail or misstep, our ability to help others and strive for good-natured acts never goes away.
Even at its most diminished, it will always exist.
I said to my wife and daughter, this pain kind of feels like there's a knife in my back now.
I remember hugging them and saying goodbye and not knowing what I was about to find out.
At our lowest and most terrifying moments,
How do we continue to show up for one another?
How do we continue down the path of support?
And what I found out was that it was a submassive pulmonary embolism.
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.
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.
What does take to resume your life when coming so close to near death?
What does normalcy look like when living in the life that was nearly taken from you?
Our guest today is someone whose experience lands him in the middle of this very question.
The reality of survival and using his experience to advocate for awareness and prevention through the difficulty of post-traumatic stress is no easy feat.
It is my pleasure to welcome to the show
someone who is championing clot survival and prevention through his advocacy and vulnerability.
Please join me in welcoming survivor, father, partner, and NBCA board member, the exceptional Dan Walsh.
My name is Dan Walsh and I am a volunteer board member of the National Blood Clot Alliance.
I had a pulmonary embolism in 2021 and I found purpose in joining the National Blood Clot Alliance through sharing my story and turning my pain into purpose.
Having my blood clotting event, I didn't have any awareness to what blood clots were.
When the doctor came and delivered the news, I was stricken with quite a myriad of emotions, but one of the biggest things I asked the doctor was,
What is this?
And he spent the time to explain it, but still never really fully grasped it.
And even when I left the hospital, I had to my own research to figure out what I had gone through and what I was experiencing.
Such a common occurrence now.
I mean, we've done how many podcast episodes and the amount of people that said, I didn't know anything about blood clots.
Like I'd heard the word peripherally, but you know, didn't know anything about it.
And also just like.
also didn't get the information in the hospital when they met with their clinician or a clinician about blood clots.
So very common and means we have some work to do to continue to get the word out for sure.
So I know you're based in Florida, walk us through how this all happened, what you were originally feeling, what ended up actually being some really important symptoms for you,
but walk us through kind of the whole story of how you got diagnosed.
starting with how you didn't get diagnosed.
Absolutely.
So, yeah, it was in July of 2021.
I had been feeling off.
The primary thing that I was dealing with was just this upper back tightness.
It almost felt like I had done a pretty intense workout, but I didn't do a workout.
So I was kind of confused why this was happening.
And it felt tight.
It felt uncomfortable, not quite excruciating, but just uncomfortable.
So
I tried to stretch it out, you know, do some stretches and try and move it around a little bit thinking that potentially that would alleviate the symptom and nothing changed and it
continued to get worse.
After a few days, I was listening to my body because people talk about that a lot and I strongly suggest that to anyone that's feeling anything.
Listen to your body and if something feels off, it's probably off and you should get validation and education around what's happening.
So at that point, I did go to an urgent care.
and explained what I had been dealing with, explained that I had kind of an intermittent cough, but the primary issue was the back pain.
And the urgent care said, hey, you pretty sure it's a pulled muscle, not really much we can do, prescribed some medications and sent me on my way.
But before I left, I had said, hey, can you just do a chest x-ray?
Like, I'm really concerned about the combination of coughing and the tightness in the upper extremities.
And they said, we can do it, but we don't think it's gonna show anything.
So they did do the chest x-ray.
They said they were very busy and they would call me with results.
So I went home, felt pretty at peace, because I had heard what I had thought was a back pain and just a pulled muscle.
And I felt there was some confidence around what the doctor was telling me.
So I carried on.
And then later that night, I did get a call and was optimistic.
The doctor said, hey, we got the x-ray back.
We see some residual.
inflammation in your lungs, but nothing to be concerned about.
We'll call in a prescription for that and there's nothing to worry about.
Take the medication and you'll be good.
So I do all that.
I follow the orders and a few days later it gets worse to a point where it was discomfort.
It started to become pain.
So I called them back and I was told quickly it gets worse before it gets better.
So I ended up
taking the advice and guidance and continue to do what I was told to do.
So at this point, we're at about three or four days with the symptoms.
A couple of days later, so I think this puts us at like day six, it woke me up from sleep.
Woke up multiple times throughout the night, once at 3 a.m., once at 5 a.m., and then finally, like at six or seven in the morning, I said to my wife and daughter, this pain
kind of feels like there's a knife in my back now.
I remember hugging them and saying goodbye.
and not knowing what I was about to find out.
And what I found out was that it was a sub-massive pulmonary embolism.
But I remember specifically saying to them, I'll be back soon.
I have to get this pulled muscle taken care of.
So I hugged them goodbye and really thought that I would be back later that day.
You know, immediately got to the ER.
They saw something immediately in the EKG.
They started hooking me up to machines.
They put me in a CT machine right away.
And um right after that, I was told what I had been dealing with and was admitted to the ICU.
So just for people who are listening to this, you went from urgent care, where you were told it was a pulled muscle, to the intensive care unit in a matter of days.
100%, yep.
Which shows that you were walking around with something that was completely life-threatening, that had been completely missed by somebody else.
Yep, something life-threatening, I had been walking around with it, had been missed.
And truly, if I hadn't been so in tune with my body, like,
It could have been an afterthought.
My oxygen saturation never dropped below 97.
And this clot had been sitting there for at least a week to a point where I have scarring in the right side of my lung now because your lungs don't really heal in that way where
they regenerate.
So yeah, it's something that I wish would have been found earlier, but I'm really grateful that I listened to my body.
I love what we're doing with NBCA because we're driving a lot more awareness to things like this and helping arm patients with
the knowledge to advocate for things like CT scans and different testing.
Absolutely.
And just making the public much more aware of blood clots.
So you end up in the ICU.
This is obviously a shock for you.
And then what happens from there?
They take you to your room, you're on blood thinners, like walk us through what happened.
Yeah.
So a lot of it didn't click for me.
Like everything was happening so fast that
They take me from triage, they take me into a temporary room, they put me into a CT scan, then they're immediately doing an echocardiogram to check for the heart strain, which I
did have some heart strain, and then from there, I'm at that point waiting for a room.
And I just remember calling everyone in my household, and I'd been told by the doctors how serious it was and how I needed to call everyone.
And I had some conversations at 31 years old that you never think you're going to have.
Some just...
really tough conversations with a two-year-old daughter, with a wife who was at home taking care of the home and a family that lives out of state, and then getting to a point
where I couldn't even have visitors because of some of the restrictions going on at that time.
So from a turn of events standpoint, go from CT scan to echocardiogram to ICU, and then just constant machines, constant.
changing the heparin drip and then at one point I was on sepsis alert.
They were kind of monitoring me for sepsis.
So then spiking fevers and they're doing blood cultures and to make light of the situation, I used to not really like getting blood draws.
I used to be very afraid of it.
And now it's just become like, oh, only 20 vials today.
uh I've just tried to arm myself with that attitude coming out of it because...
I like to think of things happening for me and not to me.
I think we have that choice and we have that option to sit and we can be in those moments where we're upset and why me and we're depressed.
But I also think we need to choose how we react to things that happen to us and find purpose and find reason behind things.
So that's really what I tried to do.
What was that conversation like with your wife?
I can't even imagine.
The conversation with my wife, I think
It was all of us just trying to put the pieces together of like, you just had a pulled muscle.
Like a few days ago, you were told you had a pulled muscle.
How are you now being told that this could be fatal?
It not feeling real, it feeling like a really, really bad dream.
That's what it felt like.
And there were just moments of that, right?
Of ups and downs of like, even when I got home, I look back at pictures, my face just wasn't there.
Like I was just disassociated from life because when you go through that,
I don't think people talk about enough the mental health challenges that come after a near-death experience.
And not only for me, for my family, of like not knowing if they would see me again and then me walking in the door and then that new way of life afterwards, which, you know, it
was a good year before things kind of normalized.
You've done an amazing job advocating for not just blood clot awareness and education, but bringing to light the mental trauma that all of us as patients really suffer from.
And I think you've taken it a step further than certainly I did, which is to incorporate your family because you forget that there's a whole group of people that are impacted by
this.
It's not just the family member as well.
So let's talk about the mental health side of blood clots.
Like I said before, you've been an amazing advocate for this.
We don't often get the opportunity to have a lot of men show up on the show and talk about this because for whatever reason they don't want to.
And so we're grateful and we're thankful for your voice.
But just talk to us what this all means and how you guys process together as a family, not just individually and what you want to say to other people who may be experiencing this.
So, yeah, as soon as I arrived home from the hospital, I was discharged on my wife's birthday and
her birthday just sits differently now because of that for all of us.
Because that day was a moment of positivity and rejoice, but also a moment of sadness and a birthday that we never want a birthday like that again, if that makes sense.
So I think back to that day and we tried our best to celebrate, we ate a cake, but I just remember not really feeling me.
Like I still felt the physical pain, but I just felt kind of emotionless.
And I'm a very emotional, empathetic.
sensitive human and I remember just not feeling me.
I felt very off like things weren't affecting me.
I know no emotion to me.
The next day I woke up and still felt off.
So I immediately went on the computer through my insurance and signed up for a telemed for therapy and that first session actually happened on my birthday.
My my me and my wife's birthday are three days apart.
So I spent my birthday with a therapist and
I remember explaining what I had gone through and she listened and we talked about it and she had said, like, I think you're dealing with some trauma.
And I was later clinically diagnosed with post-traumatic stress disorder, which at times people don't associate with health events, but it is very common for cancer survivors,
people that have gone through things like this to be diagnosed with post-traumatic stress disorder.
I was diagnosed with that and I learned to navigate that.
But what I'm so glad is like I grew up in a family and I have brothers that we all kind of talk about mental health.
We don't, you know, ignore it.
And I was so glad that I thought that like the minute I fell off mentally, I signed up for an appointment and went to therapy and continue to go to therapy because you shouldn't
carry this alone.
Like I think it's something you need to talk about.
You need to
handle and I still am very much able to talk about what I experienced and have it as a part of who I am and it's always going to be a part of my identity.
But I think therapy really helped me get through some of those moments in the beginning where every little ache and pain you think is another clot or every little thing that
happens you immediately get into your own head and you're like could that be me?
Like what what almost happened or you know those kind of moments.
So I highly recommend seeking help if you need it.
after going through an experience like this.
For a person, it's a sign of strength, not a sign of weakness, and people should embrace it.
You were way better about doing this than I was because I waited a while and then I was like, oh my God, I need to have somebody help me.
And I listened to you talk about your experience and I'm like, oh my gosh, that was me.
That was me.
When it comes to stress and anxiety, it is imperative to emphasize just how much bearing they can have over both short-term and long-term health.
With blood clots specifically, do elevated levels of stress increase risk of a clotting event?
What about the increased stress as a result of a near-fatal clot?
If you were sitting in front of a conference room full of clinicians that treat blood clot patients, what would you want to say to them about the mental health aspect?
Because one of the things with us as patients is we look normal, or at least I think I look normal, but we look normal and people don't see what's kind of going on under the
hood.
So if you had an opportunity to speak to them about incorporating this as part of the treatment plan or just overall your thoughts, what would you say to these folks?
If I had the opportunity to share
just some feedback with clinicians that would be to treat this event less like a broken bone or a scrape on the knee.
A lot of people go through any type of blood clot event and they come out of it with some paperwork and no real plan or even just awareness of what happened.
What I would encourage...
clinicians to do is talk about the mental health component, talk about how your life will be different in the beginning and maybe substantially forever depending on how severe the
event.
So we can't treat patients all the same because this is an ongoing thing.
When you have an event like this, sometimes it impacts multiple organs.
You might have to start getting followed by a cardiologist.
You might have to be followed by a hematologist, a pulmonologist, et cetera.
One thing that I wish I had had was
kind of a roadmap when I got out of, hey, you need to go to this specialist and this specialist, and this is a hypercoagulable workup or some testing that we need to have you
get done to make sure this isn't anything genetic.
There wasn't much of that.
And I found the National Blood Cloud Alliance, thankfully, and that helped me navigate it.
There were just so many voids in that and then also voids in the mental health piece.
No one came in to check on me from a mental health standpoint while I was in the hospital or even afterwards.
And I think it should be integral for anybody going through a near-death experience to at least have the opportunity to speak with someone in that space.
Yeah, 100%.
And also the roadmap, know, know, NBC has this amazing new patient guide now that I didn't have either when I my blood clot.
And I sometimes just like refer back to it at times because
Sometimes I just need it, you know, like you need a refresher course, but everybody who experiences this should be given something like that so they have a better understanding.
And you're right, it's not just about treating the physical, it's about treating the whole package.
And that includes the mental health aspect of it as well.
After having conversations with your family that you never think you're going to have at 31, and then making it out on the other side, it gives you a new lease on life.
As I mentioned earlier, there are ups and downs, but you view life in a new way.
The things that used to bother me
don't bother me anymore.
Things that you think are stress when you go through a near-death experience aren't stress anymore.
You've seen what life can be and how quick it all can go in a flash.
So in some ways I've mentioned before is I think it happened for me and not to me.
It changed my viewpoint.
There were things that I was prioritizing that shouldn't frankly have been prioritized.
So I reevaluated and reassessed.
the amount of time and energy I put into my family and my daughter and helping her grow.
When you go through a near-death experience, it changes your whole viewpoint on life.
Things that used to stress you before aren't really stressed in the grand scheme of things.
And when you go through all that, it really makes you reassess the way you were living life.
Were you living it to the fullest?
Were you prioritizing the people and things that mattered?
And when I came out of that event, I really did do that and spend a lot of time and...
I kind of call it my YOLO year where like we did a lot of vacations and a lot of dinners and probably spent way more money than we wanted to spend.
But ultimately I never get that time back with my daughter was two or three at the time.
And I needed to help her get through what she had just gone through and she wanted her dad around.
And I spent a lot of time with her and made an effort and choice to, to be more present.
Even took a step back in my career to just kind of reassess where I was at.
spend that time because time is not replaceable.
And I saw that firsthand.
That's very profound.
again, I think so many of us have experienced what you have.
You now have this platform and you've had this horrific experience, but you now have this platform that you can help other people.
so talk to us about getting involved with NBCA and how you view your role now as kind of a senior statesman of blood clots these days.
And also what that means in terms of
You know, you're in a state that actually has legislation for the first time ever in this country.
And what that, how do you feel about that?
What does that mean to you and how you're going to use your voice to help others and hopefully change the trajectory of this terrible, terrible public health crisis?
I was really fortunate to find NBCA.
I stumbled upon it through Facebook.
Like I was looking for answers to some of the questions that I couldn't get answers on.
AI didn't exist then, so chat GPT wasn't an option.
So I did find a group.
for National Blood Cloud Alliance on Facebook of other patients.
So Todd changed your life.
Yeah, absolutely.
like I got involved with that.
I got involved with that and I went on there and was asking questions and you know, which doctor I've seen these doctors, which ones do I need to go to next and really had a
patients helping patients type of community.
And days where I'd have rough days, people would be there to support me when I had my first clot of vursary celebrating my first year of new life.
I had a whole group of people cheering me on and I found that community.
And for something that I went a long time not even wanting to talk about because it had caused such a mental toll on me, I had individuals from the NBCA urging me to become
involved as a thrombocytor.
And that led to becoming a volunteer board member.
And to your point, Leslie, becoming involved with going to Capitol Hill every year and sharing my story with some of the decision makers of our country and trying to drive
awareness and change.
And even more importantly, I live in Florida and this is a state that is ahead of the curve in terms of awareness.
Emily Atkins was passed and that drives a lot more knowledge and resources and awareness to this condition and how we can help others that are experiencing it.
And that's really meaningful and touching to me as I navigate this as a survivor.
It's been amazing to watch just your progression when we first met you and you became involved with us, you know, as a thrombasser to become a board member and educating
people, but really driving the whole mental health PTSD awareness issue.
I don't think there's anybody else on our board or frankly in the entire space that has really tackled this head on the way that you have.
So that's just has been an amazing thing for us to witness.
And I'm so thankful.
happy that you're with us to help others like this and also to advocate with us in DC and in other states because it's a travesty and it's disgusting that there's no funding for
this.
mean, shame on our government for not prioritizing something that kills 100,000 people.
And it's not just the 100,000 people that pass away or 900,000 people that are getting a blood clot.
It's the ripple effect of all of the people around us that are impacted.
which makes this so much bigger than people realize.
And so that needs to be addressed.
And I think you're doing an awesome job doing that.
So from me personally, thank you.
Thank you.
Thank you for giving me the platform and having the trust in me to do this.
It's been cathartic for me to be able to share my story in this way, because like I said, it was something I didn't want to talk about.
And you and the team have given me the platform to do it and have the confidence to share it and get to hear even from
people we've met in DC year, two years later, hey, thank you for sharing that.
I was able to tell someone to go get help and learn that they had a blood clot.
When you hear things like that, when it comes full circle, that you know that your story has reached someone that has then potentially saved a life, that's when you know that
you're making an impact and a difference.
And this is all for a reason and purpose.
Oh, absolutely.
And I think you were the person who, I think you were in then Senator Rubio's office, weren't you?
Yep.
Tell the story about that because that possibly saves someone's life.
So I guess it was in 2022, we were meeting with Senator Rubio's staff and we were explaining our mission and our purpose and blood clots.
And I had had the opportunity to share my story and what some of my symptoms were.
And one of the staffers was very surprised at how young I was and how young I was at the event when the event happened.
And she was very moved by the story.
I could sense it.
And then the next year we went back and the same staffer was working and she had said, hey, before we get started, I just wanted to thank you for sharing your story last year
because I had a coworker who was having some of the signs and symptoms that you have brought to our attention.
And I had urged her to go get help and immediately they found out that she was dealing with deep vein thrombosis.
So when you hear stories like that, it brings back turning my pain into purpose and trying to help others.
Yeah, and that's what you're doing here today with us.
Sharing your story will make that difference in many, many people's lives.
But the impact of you having gone into someone's office, shared your story, which is emotional.
It's a very emotional process.
And for those of us that do this, you're reliving that trauma over and over when you do share those stories.
So we don't just walk in and say, hey, here's my story and leave.
That sits on our shoulders for a good long time.
But by doing that, by sharing those stories, I mean, think you probably saved that person's life.
They wouldn't have known about it otherwise.
So again, thank you for everything that you're doing.
Every year, NBCA, at the end of the year, highlights a patient or a family member, somebody who's been impacted by a blood clot.
And so this year, it's you.
And so you were about to be elevated.
Speaking of reach, be careful what you wish for, right?
You're about to be elevated to a level that maybe you haven't seen before.
And so...
How does that feel?
Because your story is on video, it's in print, it's going to be blasted out into the universe, it's going to be picked up in the press.
How does that make you feel?
It makes me feel that this happened for a reason and that being able to take the story and take it from not wanting to talk about it to taking it to a level that you mentioned,
Leslie, that this year being featured at the end of year campaign is going to be huge for awareness.
I think awareness too that
I think some people kind of have an idea of what a blood clot survivor should look like or people that deal with blood clots.
They often think, you know, not young and things like that.
And I think mine happened at 31.
So blood clots do not discriminate.
Like they can choose any of us.
And I think we need to understand that and be aware of even more so aware of the signs and symptoms.
But I'm very excited and humbled and grateful to be featured on the end of year campaign.
And yeah, just hope that my story continues to reach others and drive awareness and
Yeah, have happened for a reason, right?
Like I think that's ultimately all of our goals is getting through this event.
It's a lot of tragedy on our family to experience it and a lot of stress.
And most of what came out of this was just understanding that life is precious.
And I really am grateful that we're going to be taking my story and using it to help drive awareness and hopefully drive donations to continue to allow us to do what we do and maybe
even on a larger scale.
I think people don't realize that.
You're a volunteer, I'm a volunteer, we're all volunteers and we're paying it forward because we don't want others to go through what we went through.
But if you do go through this, we want to make sure that people have the resources that they should have, that they need to have in order to navigate this.
And there's a cost associated with that, unfortunately.
And we do depend upon those donations and contributions.
So anybody listening to us today who feels like they want to write a check for $10 million, call Dan, please.
And we'll credit him for that, but we need to be honest about it.
I stories are the backbone of what we do.
Sharing those stories really impacts everything that we do, but there's a cost to developing that, and we need to be honest about that.
I think what people don't realize when these events happen with any type of near-death experience is the amount of hardship a family endures.
So usually the person who is sick and going through, you know, call it, like for my instance, was a pulmonary embolism.
I'm in the hospital.
I'm getting the medications I need, I'm getting monitored 24 seven, lots of tests and lots of blood work being followed by a physician.
And even after I'm discharged, having regular checkups and getting calls from physicians, et cetera.
But the people that got left behind often are the families.
So the families are at home, maybe hearing that their loved one may not survive or make it home.
And if they're fortunate enough and that person makes it, then they're trying to navigate the new life.
that's, know, appointments, helping this individual with
life tasks that they're used to that person doing and the emotional component of everyone, you know, potentially saying goodbye a few moments ago and or days ago and, and then being
like, wow, they're still here.
So I think it's understanding the impact from a mental health side of not just the patient, but the families and those around them and how to get through that because it is
life altering.
And if we don't take it seriously, it could be rough on the families and the loved ones around them.
So
I just continue to urge anyone that has gone through a similar experience to get help, even if it's just one session to assess where you're at.
I think that's critical.
Yeah, I think that's great advice for the patients, but also for the clinicians that are dealing with the patients to offer this up, even just to say, how are you doing?
And if the answer is not great, then here's some resources or here's where we can direct you.
Dan, you are a gem and...
really, truly you are.
And I want to thank you for joining us here today on Taking a Breath, our Stop the Clot podcast.
Your advocacy is amazing, but honestly, what you're doing for those of us who suffer from mental health issues, PTSD regarding blood clots, nobody has tackled this like you.
And so from the bottom of my heart, thank you for being here today and sharing.
Thank you, Leslie.
Thank you for your leadership.
Thank you for joining us on another episode of Taking a Breath.
We want to thank Dan for joining us today and sharing his harrowing yet inspiring experience.
For more information on risk prevention and community, please visit stoptheclot.org.
And if you wish to aid in our efforts of blood clot awareness, please consider donating to our cause at stoptheclot.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 StopTheClaw.org.
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