We talk often on this podcast about how quickly things can shift in the clotting disorders community.
The one moment I was fine sentiment that makes a clotting event feel like a thief in the night.
Since last telling you about my journey, some things have changed, both known and unknown.
In the same way we use these stories to shed light and ground you in the tools you need for plot survival, I want this story to be an example of the ebb and flow of the journey
ahead.
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.
Once again, here is Todd Robertson.
So there was a small blood clot found behind my knee back on May 6th.
And we just kept an eye on it.
It was probably going to absorb.
We weren't sure how it got there, but my guidance from my doctors was blood circulation is exactly what you need.
So go ahead and go for a bike ride.
Go ahead and be active.
The only restrictions that I was given was stay out of the gym as far as
doing a lot of heavy deadlifts and squats.
So I didn't do that.
I haven't done that since because of everything that's happened since, but I went on my bike ride because that's like me going to the therapist, right?
It's my emotional helper.
It's what makes me not think of the situation so much.
And it makes me feel better and makes me feel amazing.
And I love being out in nature.
Nature therapy is a big thing to me.
So I went on this huge bike ride and it was a 35 mile gravel ride because I love riding gravel out in the country and there were big hills and I was just feeling amazing.
And I don't remember ever really looking down at my leg because there was really no reason to.
I was feeling great.
The next morning I noticed that my leg had swollen up more than usual and that was concerning.
I had no pain.
I still have no pain, which is also really confusing.
It was just swollen and so I decided to update my doctor immediately.
I'm fortunate to be able to go into the patient portal and communicate with him and he's very timely about getting back to me.
Usually at the end of that day, I've always trusted his judgment, but he's not a blood clot expert, you know, like a vascular specialist or surgeon or a hematologist on the
blood.
He knows when to send me somewhere else.
So he said, yeah, I've already called it in.
Your schedule just go ahead and come on into the hospital and we're gonna we're gonna get you another ultrasound and see if there's anything going on
And so I went in and got the call right away within probably a half hour that the blood clot had actually grown.
There was a little confusion.
I didn't know if it was another blood clot.
You know, I didn't know what was happening.
So the way they explained it was it had extended and went from the back of my knee up to my thigh and also down to my ankle.
So it was actually leg long.
I wasn't told that it was chronic and fairly stable until I went in and saw the vascular specialist, which was
two or three weeks later.
And we looked at the ultrasound.
This was the first time I actually sat with somebody and watched the ultrasound being done.
You know, was recording.
And he showed me, he showed me every place, you know, how we squeeze and they look at the contraction of the vein and they can tell if there's a blood clot there.
I got to see all that.
And then he showed me the tissue coming out from the vein wall into the clot.
which is what made it chronic and actually what made it fairly stable.
But the blood clot had attached itself to the vein.
So it was a chronic blood clot.
We just started wondering why this all happened.
And we started talking about testing.
brought up, I've had injections into my pelvis now for three years because of my pubic symphysis, something in the plate.
It was rubbing against each other.
That's what they told me.
And then I started doing my own research.
And May-Thurners, you can have pelvic pain.
You have a lot of problems with the left leg with clotting.
And I'm looking at that going, man, I fit that description so perfectly.
Why aren't we testing for that?
So I brought that up with my vascular specialist and he goes, yeah, you know, it wouldn't be a bad idea to go ahead and test you for that.
Let's do a follow-up ultrasound in a couple of weeks.
So I've got that coming up.
And after that, we're probably going to do a venogram and kind of see where it stands.
I mean, that's where I'm at right now.
I've been talking to my hematologist.
We did switch up anticoagulants just in case.
But I've got my own opinion.
I'm not a doctor.
I just think that, you know, it's more than just an anticoagulant failure because what I was on was working for 13 years, you know, really well.
Why all of a sudden now is it not working?
And I'm thinking there's something else going on.
and it was asked to do a lot of work and, and couldn't do it because there is an underlying issue.
And so I'm going to the university of Iowa hospital.
shortly for a follow-up appointment and a different opinion because I want to know more about the anticoagulant.
I want to know more about my homozygous blood, Factor V Leiden.
But I think I'm going to learn more after this follow-up ultrasound and further testing with my vascular specialist because when I talked to him, he was the one that really, he
felt like, you know, this is the direction we need to go in.
And I wasn't getting that really from anybody else except for my primary.
But my primary was just the navigator, right?
I'm in the middle of all this.
So, you know, as far as, you know, how I interact with the patients and that optimism that I do display, you know, I've got to go back.
I've got to throw this in.
I've got to go back to 2013 when my wife was diagnosed with brain cancer.
And it was hard to remain optimistic because I knew that she didn't have long, even though the doctors were trying to make it seem another way.
I also knew what a glioblastoma was and instantly stage four brain cancer.
there's not much bouncing back.
Okay.
That's just the reality of it.
And it was through that period where I was also dealing with my own blood clot situation.
I was dealing with her on top of that by being her caretaker.
And I had to find a way to be optimistic and to show that for her.
And I think that just helped me.
You know, that helped my own situation and I think it definitely paid off with the patience that I helped navigate in the support group and, you know, throughout the country
who I've talked to.
I became a very optimistic person in a time of hardcore tragedy, And trauma, my own trauma, let alone my wife's trauma, my trauma from having to watch her.
And I just found a way to be optimistic.
I don't know exactly where that happened.
Yes, I'm a man of faith and all this, but I had to dig deep within myself and make sure that I expressed my optimism.
properly in the patient community because that's who I am and It's a very hard emotional thing to navigate for all of us, especially after we're newly diagnosed with a blood clot
I've had to deal with this before and I know that there's light at the end of the tunnel with these things Look one one American dies every six minutes from from a pulmonary
embolism from a blood clot that that's a hard thing to stop
And we try with the NBCA because we're trying to educate people, trying to raise awareness, trying to put out the risk factors.
We're trying to do all this stuff, but that's a hard fact.
But the thing is, if you've suffered a blood clot and you're still here, then you're a survivor.
You've survived and there's a process of going through that and you're going to go through these emotional waves that are going to slam you on and off.
I go through those waves right now.
I'm optimistic, yes.
Do I still get worried?
Yes.
because I want to remain above ground.
have a dog to take care of.
He's my reason for being here, right?
This is a difficult situation.
It is a worrisome situation.
But there is reason to be optimistic.
And I show a lot of gratitude with my doctors, with my own support system.
I get just as much support from patients as I give them.
That's one reason we've talked about it in the support group, what I'm going through, because they give me fuel to...
Be more optimistic.
Look, you've made it through this.
You've made it through that.
Look, look how you're treating us.
We're going to treat you the same way.
That support group supports me.
It's a two way street.
But you know, I have to be careful because sometimes, you know, I get pretty down about my situation and I don't want that to bleed off onto a patient because most of the time I'm
optimistic.
But at the same time, I want them to understand is you're going to have good and bad days.
Emotionally, you're going to have good and bad days.
You have those with the physical part, but emotionally, those can really take a toll.
And I think this has given me the opportunity, even more opportunity.
I think there's a reason for what's happening.
The patient to me is more important right now than myself, because I don't want to see anybody going through this, you know, emotionally, just being down in the dumps
constantly, 24 hours a day.
I don't want them to be there.
So I try to share my own optimism and
help navigate them because I want them to rise above that.
That's important to me and it makes me feel better.
So the more I can help someone, the better I feel and the more optimistic I become, the more grateful I become, I just try to be there for everybody because that makes me feel
good.
There's a difference between worry and concern.
Concern is productive.
It makes you get all your ducks in a row.
Worry can be debilitating, and it can put you in a really dark place, and it's hard to climb out of that hole.
And it's easy to guide people towards the right sources, because the National Blood Clot Alliance has all these free resources, questions to ask your doctor, the new patient
guide, the resource guide.
mean, there's all these things.
One of my jobs is to make sure they have that information.
So I just love it when I put up a link to something like, what do I ask my doctor?
And here I put up something from the NBCA that tells you exactly what to ask your doctor.
Pick and choose from these.
And the response is, thank God, I had no idea what to ask.
Well, here's what you can ask.
And they really appreciate that.
Can I call bulls**t right now?
Uh-oh.
OK, you're not in the group.
Nobody's recording, there's no camera, blah, blah.
You were afraid.
And I listened to a vulnerability to you that I have never experienced and that scared me.
And so for you to sit here and go, yeah, I'm more concerned about the patients, blah, blah, blah.
Yeah, you are.
But you're also concerned about yourself.
In some ways you...
are worse than a new newly diagnosed patient because you have enough information to be dangerous, but not enough information to take complete and total control of your
situation.
And there was a frustration there.
you may have great doctors, but at the end of the day, you have struggled to get answers.
You have struggled to get appointments.
You have had to, you know,
push your way into these situations, ask for the appointment if somebody cancels.
This is bulls**t.
You're right.
You don't have a sore throat.
You have a really serious blood clotting disorder.
And I don't think I ever took it quite as seriously as I did until now, because you were always like, hey, I'm Todd and I'm the Northern light and you're all going to be okay.
And I'm going to ride my bike for 6,000 miles at lunchtime.
Yeah.
Right?
And that was great.
But the reality of the situation is that I saw a vulnerable, like I wanted to do something and it's really frustrating when you can't do something for someone who needs help.
And I, sorry, but I don't, I think the doctors dropped the ball.
I really do.
Let's back up before May, shall we?
you, didn't you have a go to the dentist and they took you off your
blood thinners for a couple of days.
Yeah.
Who made that decision?
Okay.
Who did that?
Then after that, you have a clot behind your knee.
Was it occluded?
No.
But so what?
You had a clot.
fast forward, now you've got this whole new situation, which is way worse than probably the last couple of clots that you have had.
Like somebody along the way made some really, really stupid
Yeah.
Decisions.
And you have information.
You're so much further ahead of a newly diagnosed.
So I can understand why they're freaked out by this, right?
Because it could happen to you.
It can happen to anyone.
Todd gets, I'm sorry to talk about you in the third person here, but it's taken off of his DOAC, right?
Which we all love the DOACs because you pop a pill and that's the end of it.
Now he's on injectables.
And so-
It was same old, same old, because they had you on Warfarin initially, twice a day, which sucks to have to give yourself injections twice a day.
Lovonauts, he's on Lovonauts.
And one of the doctors that we've had on one of our pep talks, and we both know and have worked on some stuff together, based in Boston, sees his posts on Facebook and is like,
hey, contact me and call me.
Like, why do they have you on this when you can be on this instead?
It's only once a day, it won't hurt as much, blah, blah, blah.
What the is that?
I know.
He's got many doctors in Iowa and it's same old and you've got somebody in Boston, which just goes to show the different level and knowledge of clinicians themselves.
And so she then says to him, go back to your doctor and tell them you want to be on blah, blah.
Which he does, right?
Both the hematologist and the nurse was like, and who are you with?
Who are you talking to?
Who gives a f**k who he's talking to?
Why didn't you do this for him?
Why wasn't this an option?
Why aren't there enough options for people?
So really, really bad decisions were made taking him off of his anticoagulant for dental work.
Then he gets a clot.
Then he gets this situation.
And now he's dealing with
you know, and he's got it under control now, but he's dealing with a cluster of clodding situation.
So I'm sorry.
I think there's a lot more vulnerability and stress in you than you let on because you are the North light for the patient.
like, also I'm sorry, but blood clod patients, yourself included, sometimes get really medical advice.
You're I'm lucky that I'm out there in the space where they
where she sees that otherwise you'd be giving yourself Lobanox injections twice a day, probably for the rest of your life.
Right.
And it is bulls**t.
And I've told you when I've talked to you after some of these appointments, you knew I was pissed.
But, and then you also mentioned how, you know, the anxiety and the patients and how much they see.
Trust me, I would love to make a post on how my doctor's f**ked up, but that doesn't sound like something I should be doing.
Right?
If we can do that here, I mean, if you want the truth, if you want the truth, bring it.
Yeah.
It really me up.
It, it, it messed me up because I've had to chase this now.
And I've had to chase this going back to 2017 when they gave me a colonoscopy.
despite them knowing that I'm homozygous factor five Leiden and had already had four or five blood clots, they stopped me for three days.
And I often say the doctor screwed up.
It should have been handled differently.
And then I also put a little bit of that on me just because I should have been a better patient advocate then and go, what, what the hell?
Are you kidding me?
That should have raised a red flag.
And if I would have slammed my fist, I don't think I would have been taken off for three days.
I would have been bridged.
Cause I would have brought it up.
Cause you know, back then I didn't think I had to be, but now you moving forward into this one.
It's like, didn't we just go through this?
Okay.
I was off three days.
Well, you'd be okay if you're off two days, but no, that didn't happen.
So, so why were those decisions made?
No, I've had to push for these appointments and you're absolutely right.
I had to fight tooth and nail to be put.
And here's the other thing.
We, know, we can't mention the name of an anticoagulant.
You've told me that.
Yeah.
So how do we communicate that?
I shouldn't have had to ask and mention
another anticoagulant, they should have already done that for me.
So we were talking about somebody recommending, look, talk to your doctors about this anticoagulant.
I finally did.
And I had to fight tooth and nail for two or three days because the excuse they gave me was, well, we don't prescribe that because usually the insurance doesn't cover it.
And I'm like, so we're going to take that option away from you and make your quality of life and stat for the rest of your life.
Yeah.
And so I had to remind them, said, look, I work for the state of Iowa.
have outstanding, outstanding health insurance.
Can we just give it a shot?
Can you just call it in?
And they reluctantly, okay, we'll, we'll go ahead and call it in.
within 60 minutes I had it approved and I was on a new anticoagulant that was so much better than the other injectable.
Yeah.
I've got to give myself an injectable, you know, daily.
That's not bad to me because it's not bruising me up.
It's not stinging.
It's like once a day.
So there's three things right there.
my concern is on it for life.
I'm got to watch my liver.
And so that's, that's another, that's another conversation with another hematologist is, well, how long can I stay on this and not have things happen to my liver?
Cause injections for life really aren't that good from what I've heard.
I'm at risk for re-clotting.
It's just the way it is.
don't know yet why.
That's not the point.
The point is it happens.
So can we stop making mistakes and stop wasting time?
Because I'm going to be 61 in about a month.
All right.
I want to have another 20, 30 years of a decent life.
And if I have to deal with blood clots, fine.
But please help me understand what's going on and how to prevent more.
Because right now it seems like a lot of the medical community is within my own world is a little bit clueless.
And I know that blood clots are very complex.
a very, it's a very hard thing to grab ahold of.
And it's a very hard thing to understand.
And it's really difficult when all that crap's going on in your body and you don't have any answers.
It makes you feel vulnerable.
It makes me feel sad.
It makes me feel depressed.
Yeah, I'm optimistic.
And do I think I'm going to rise above?
Yeah, it's kind of the way I am mentally.
But those waves, like I said, that come crashing in and we're the lighthouse, the NBCA is the lighthouse.
We try to
bring people off those stormy seas and at least calm the waters for them.
Well, once I get the waters calmed for them, I may go off mic, I may go offline, and those waves are slamming me.
They're slamming me and I have to deal with it.
So it's really difficult.
And I think it's really unfair to make somebody go through the arduous process of handling their health issues while also having to navigate the healthcare system.
It shouldn't be like that.
No, and I'm going to have to keep fighting.
Like you said, it's a daily thing because I still don't think anybody is really taking me seriously as far as my doctors.
I don't think they realize how I feel.
maybe they're starting to realize that because some things are starting to get done, but I still don't think that they truly get where I'm coming from.
And God forbid, I don't want them to have a blood clot, but I bet you if they did, they'd be singing a whole different song, a whole different tune.
They'd be humming, right?
Because then they would be affected by it.
It's really hard for the outsider to understand.
with the patients, that comes with their family, with their circle of friends, with their employers.
Nobody really gets it.
And I see this in the patient group all the time.
Well, you look fine.
You look fine.
No, we're not fine.
We're not fine physically and we're not fine emotionally.
But to have to fight for that is exhausting.
Am I going to give up?
Absolutely not.
It's made me much more determined to get to the bottom of this.
And if I have to help push some of the doctors in the right direction as an advocate for myself, then that's my job for myself.
Right.
So, and that's how I want other patients to feel is I want them to feel empowered that they have a right to know what's going on with their body.
They have a right to know why they're clotting.
They have a right to know everything.
And we just have to keep pushing.
And that's what I'm going to keep doing.
I want to thank Todd one more time for opening up on this unfolding story and continuing to be a guiding light for so many in the clotting disorders community.
Thank you for joining us here today on another episode of Taking a Breath.
For more information on risk, 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.