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We talk often on this podcast about how quickly things can shift in the clotting disorders
community.

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The one moment I was fine sentiment that makes a clotting event feel like a thief in the
night.

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Since last telling you about my journey, some things have changed, both known and unknown.

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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

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ahead.

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Every six minutes, somebody in America dies of a blood clot.

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We're here to change that statistic.

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Welcome to Taking a Breath, a stop the clot podcast.

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A podcast dedicated to bringing awareness of the dangers of blood clots from the clotting
disorders community to the world.

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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.

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My name is Leslie Lake.

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I am the president of the National Blood Clot Alliance and I am a blood clot survivor.

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And my name is Todd Robertson.

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I am the patient engagement liaison for the National Blood Clot Alliance and I am a
seven-time blood clot survivor.

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And we're here to stop the clot.

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Once again, here is Todd Robertson.

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So there was a small blood clot found behind my knee back on May 6th.

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And we just kept an eye on it.

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It was probably going to absorb.

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We weren't sure how it got there, but my guidance from my doctors was blood circulation is
exactly what you need.

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So go ahead and go for a bike ride.

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Go ahead and be active.

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The only restrictions that I was given was stay out of the gym as far as

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doing a lot of heavy deadlifts and squats.

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So I didn't do that.

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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?

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It's my emotional helper.

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It's what makes me not think of the situation so much.

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And it makes me feel better and makes me feel amazing.

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And I love being out in nature.

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Nature therapy is a big thing to me.

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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.

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And I don't remember ever really looking down at my leg because there was really no reason
to.

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I was feeling great.

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The next morning I noticed that my leg had swollen up more than usual and that was
concerning.

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I had no pain.

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I still have no pain, which is also really confusing.

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It was just swollen and so I decided to update my doctor immediately.

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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.

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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

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blood.

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He knows when to send me somewhere else.

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So he said, yeah, I've already called it in.

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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

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And so I went in and got the call right away within probably a half hour that the blood
clot had actually grown.

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There was a little confusion.

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I didn't know if it was another blood clot.

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You know, I didn't know what was happening.

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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.

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So it was actually leg long.

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I wasn't told that it was chronic and fairly stable until I went in and saw the vascular
specialist, which was

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two or three weeks later.

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And we looked at the ultrasound.

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This was the first time I actually sat with somebody and watched the ultrasound being
done.

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You know, was recording.

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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.

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I got to see all that.

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And then he showed me the tissue coming out from the vein wall into the clot.

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which is what made it chronic and actually what made it fairly stable.

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But the blood clot had attached itself to the vein.

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So it was a chronic blood clot.

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We just started wondering why this all happened.

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And we started talking about testing.

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brought up, I've had injections into my pelvis now for three years because of my pubic
symphysis, something in the plate.

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It was rubbing against each other.

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That's what they told me.

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And then I started doing my own research.

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And May-Thurners, you can have pelvic pain.

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You have a lot of problems with the left leg with clotting.

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And I'm looking at that going, man, I fit that description so perfectly.

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Why aren't we testing for that?

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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.

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Let's do a follow-up ultrasound in a couple of weeks.

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So I've got that coming up.

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And after that, we're probably going to do a venogram and kind of see where it stands.

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I mean, that's where I'm at right now.

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I've been talking to my hematologist.

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We did switch up anticoagulants just in case.

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But I've got my own opinion.

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I'm not a doctor.

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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.

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Why all of a sudden now is it not working?

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And I'm thinking there's something else going on.

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and it was asked to do a lot of work and, and couldn't do it because there is an
underlying issue.

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And so I'm going to the university of Iowa hospital.

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shortly for a follow-up appointment and a different opinion because I want to know more
about the anticoagulant.

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I want to know more about my homozygous blood, Factor V Leiden.

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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

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felt like, you know, this is the direction we need to go in.

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And I wasn't getting that really from anybody else except for my primary.

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But my primary was just the navigator, right?

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I'm in the middle of all this.

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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.

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I've got to throw this in.

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I've got to go back to 2013 when my wife was diagnosed with brain cancer.

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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.

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I also knew what a glioblastoma was and instantly stage four brain cancer.

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there's not much bouncing back.

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Okay.

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That's just the reality of it.

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And it was through that period where I was also dealing with my own blood clot situation.

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I was dealing with her on top of that by being her caretaker.

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And I had to find a way to be optimistic and to show that for her.

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And I think that just helped me.

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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

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who I've talked to.

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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.

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And I just found a way to be optimistic.

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I don't know exactly where that happened.

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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.

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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

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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

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embolism from a blood clot that that's a hard thing to stop

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And we try with the NBCA because we're trying to educate people, trying to raise
awareness, trying to put out the risk factors.

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We're trying to do all this stuff, but that's a hard fact.

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But the thing is, if you've suffered a blood clot and you're still here, then you're a
survivor.

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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.

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I go through those waves right now.

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I'm optimistic, yes.

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Do I still get worried?

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Yes.

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because I want to remain above ground.

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have a dog to take care of.

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He's my reason for being here, right?

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This is a difficult situation.

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It is a worrisome situation.

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But there is reason to be optimistic.

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And I show a lot of gratitude with my doctors, with my own support system.

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I get just as much support from patients as I give them.

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That's one reason we've talked about it in the support group, what I'm going through,
because they give me fuel to...

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Be more optimistic.

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Look, you've made it through this.

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You've made it through that.

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Look, look how you're treating us.

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We're going to treat you the same way.

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That support group supports me.

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It's a two way street.

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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

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optimistic.

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But at the same time, I want them to understand is you're going to have good and bad days.

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Emotionally, you're going to have good and bad days.

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You have those with the physical part, but emotionally, those can really take a toll.

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And I think this has given me the opportunity, even more opportunity.

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I think there's a reason for what's happening.

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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

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constantly, 24 hours a day.

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I don't want them to be there.

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So I try to share my own optimism and

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help navigate them because I want them to rise above that.

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That's important to me and it makes me feel better.

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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

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good.

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There's a difference between worry and concern.

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Concern is productive.

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It makes you get all your ducks in a row.

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Worry can be debilitating, and it can put you in a really dark place, and it's hard to
climb out of that hole.

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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

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guide, the resource guide.

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mean, there's all these things.

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One of my jobs is to make sure they have that information.

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So I just love it when I put up a link to something like, what do I ask my doctor?

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And here I put up something from the NBCA that tells you exactly what to ask your doctor.

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Pick and choose from these.

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And the response is, thank God, I had no idea what to ask.

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Well, here's what you can ask.

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And they really appreciate that.

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Can I call bulls**t right now?

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Uh-oh.

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OK, you're not in the group.

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Nobody's recording, there's no camera, blah, blah.

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You were afraid.

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And I listened to a vulnerability to you that I have never experienced and that scared me.

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And so for you to sit here and go, yeah, I'm more concerned about the patients, blah,
blah, blah.

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Yeah, you are.

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But you're also concerned about yourself.

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In some ways you...

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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

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situation.

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And there was a frustration there.

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you may have great doctors, but at the end of the day, you have struggled to get answers.

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You have struggled to get appointments.

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You have had to, you know,

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push your way into these situations, ask for the appointment if somebody cancels.

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This is bulls**t.

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You're right.

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You're right.

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You don't have a sore throat.

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You have a really serious blood clotting disorder.

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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.

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And I'm going to ride my bike for 6,000 miles at lunchtime.

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Yeah.

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Right?

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And that was great.

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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.

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And I, sorry, but I don't, I think the doctors dropped the ball.

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I really do.

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Let's back up before May, shall we?

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you, didn't you have a go to the dentist and they took you off your

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blood thinners for a couple of days.

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Yeah.

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Who made that decision?

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Okay.

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Who did that?

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Then after that, you have a clot behind your knee.

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Was it occluded?

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No.

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But so what?

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You had a clot.

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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.

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Like somebody along the way made some really, really stupid

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Yeah.

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Decisions.

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And you have information.

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You're so much further ahead of a newly diagnosed.

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So I can understand why they're freaked out by this, right?

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Because it could happen to you.

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It can happen to anyone.

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Todd gets, I'm sorry to talk about you in the third person here, but it's taken off of his
DOAC, right?

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Which we all love the DOACs because you pop a pill and that's the end of it.

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Now he's on injectables.

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And so-

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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.

223
00:15:37,771 --> 00:15:39,792
Lovonauts, he's on Lovonauts.

224
00:15:40,193 --> 00:15:53,724
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,

225
00:15:53,724 --> 00:15:56,076
hey, contact me and call me.

226
00:15:56,386 --> 00:16:00,487
Like, why do they have you on this when you can be on this instead?

227
00:16:00,487 --> 00:16:03,152
It's only once a day, it won't hurt as much, blah, blah, blah.

228
00:16:03,152 --> 00:16:04,886
What the is that?

229
00:16:04,886 --> 00:16:06,435
I know.

230
00:16:06,435 --> 00:16:18,945
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.

231
00:16:19,086 --> 00:16:24,408
And so she then says to him, go back to your doctor and tell them you want to be on blah,
blah.

232
00:16:24,408 --> 00:16:25,619
Which he does, right?

233
00:16:25,619 --> 00:16:29,550
Both the hematologist and the nurse was like, and who are you with?

234
00:16:29,550 --> 00:16:30,591
Who are you talking to?

235
00:16:30,591 --> 00:16:32,962
Who gives a f**k who he's talking to?

236
00:16:32,962 --> 00:16:34,782
Why didn't you do this for him?

237
00:16:34,782 --> 00:16:36,903
Why wasn't this an option?

238
00:16:36,903 --> 00:16:39,784
Why aren't there enough options for people?

239
00:16:39,844 --> 00:16:49,148
So really, really bad decisions were made taking him off of his anticoagulant for dental
work.

240
00:16:49,588 --> 00:16:50,949
Then he gets a clot.

241
00:16:50,949 --> 00:16:52,570
Then he gets this situation.

242
00:16:52,570 --> 00:16:54,260
And now he's dealing with

243
00:16:54,380 --> 00:16:59,394
you know, and he's got it under control now, but he's dealing with a cluster of clodding
situation.

244
00:16:59,394 --> 00:17:01,210
So I'm sorry.

245
00:17:01,210 --> 00:17:09,223
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.

246
00:17:09,223 --> 00:17:18,851
like, also I'm sorry, but blood clod patients, yourself included, sometimes get really
medical advice.

247
00:17:18,851 --> 00:17:22,518
You're I'm lucky that I'm out there in the space where they

248
00:17:22,518 --> 00:17:27,882
where she sees that otherwise you'd be giving yourself Lobanox injections twice a day,
probably for the rest of your life.

249
00:17:27,882 --> 00:17:28,483
Right.

250
00:17:28,483 --> 00:17:29,403
Right.

251
00:17:29,504 --> 00:17:30,844
And it is bulls**t.

252
00:17:30,885 --> 00:17:36,929
And I've told you when I've talked to you after some of these appointments, you knew I was
pissed.

253
00:17:37,510 --> 00:17:44,435
But, and then you also mentioned how, you know, the anxiety and the patients and how much
they see.

254
00:17:44,616 --> 00:17:51,441
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.

255
00:17:51,722 --> 00:17:52,542
Right?

256
00:17:52,854 --> 00:17:57,758
If we can do that here, I mean, if you want the truth, if you want the truth, bring it.

257
00:17:57,758 --> 00:17:58,118
Yeah.

258
00:17:58,118 --> 00:17:59,919
It really me up.

259
00:17:59,920 --> 00:18:04,764
It, it, it messed me up because I've had to chase this now.

260
00:18:04,764 --> 00:18:10,908
And I've had to chase this going back to 2017 when they gave me a colonoscopy.

261
00:18:11,209 --> 00:18:19,255
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.

262
00:18:19,556 --> 00:18:22,258
And I often say the doctor screwed up.

263
00:18:23,072 --> 00:18:25,042
It should have been handled differently.

264
00:18:25,443 --> 00:18:34,525
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?

265
00:18:34,525 --> 00:18:35,726
Are you kidding me?

266
00:18:35,726 --> 00:18:37,046
That should have raised a red flag.

267
00:18:37,046 --> 00:18:41,978
And if I would have slammed my fist, I don't think I would have been taken off for three
days.

268
00:18:41,978 --> 00:18:43,068
I would have been bridged.

269
00:18:43,068 --> 00:18:44,168
Cause I would have brought it up.

270
00:18:44,168 --> 00:18:50,890
Cause you know, back then I didn't think I had to be, but now you moving forward into this
one.

271
00:18:50,966 --> 00:18:52,636
It's like, didn't we just go through this?

272
00:18:52,636 --> 00:18:52,877
Okay.

273
00:18:52,877 --> 00:18:53,757
I was off three days.

274
00:18:53,757 --> 00:18:59,048
Well, you'd be okay if you're off two days, but no, that didn't happen.

275
00:18:59,048 --> 00:19:01,709
So, so why were those decisions made?

276
00:19:01,709 --> 00:19:05,330
No, I've had to push for these appointments and you're absolutely right.

277
00:19:05,330 --> 00:19:08,531
I had to fight tooth and nail to be put.

278
00:19:08,531 --> 00:19:10,091
And here's the other thing.

279
00:19:10,611 --> 00:19:13,522
We, know, we can't mention the name of an anticoagulant.

280
00:19:13,522 --> 00:19:14,452
You've told me that.

281
00:19:14,452 --> 00:19:14,852
Yeah.

282
00:19:14,852 --> 00:19:17,773
So how do we communicate that?

283
00:19:17,773 --> 00:19:20,906
I shouldn't have had to ask and mention

284
00:19:20,906 --> 00:19:24,137
another anticoagulant, they should have already done that for me.

285
00:19:24,137 --> 00:19:29,989
So we were talking about somebody recommending, look, talk to your doctors about this
anticoagulant.

286
00:19:29,989 --> 00:19:31,609
I finally did.

287
00:19:31,609 --> 00:19:41,726
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.

288
00:19:41,726 --> 00:19:49,868
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.

289
00:19:49,868 --> 00:19:50,318
Yeah.

290
00:19:50,318 --> 00:19:54,099
And so I had to remind them, said, look, I work for the state of Iowa.

291
00:19:54,099 --> 00:19:56,370
have outstanding, outstanding health insurance.

292
00:19:56,370 --> 00:19:57,820
Can we just give it a shot?

293
00:19:57,820 --> 00:19:59,621
Can you just call it in?

294
00:19:59,821 --> 00:20:04,883
And they reluctantly, okay, we'll, we'll go ahead and call it in.

295
00:20:04,883 --> 00:20:12,985
within 60 minutes I had it approved and I was on a new anticoagulant that was so much
better than the other injectable.

296
00:20:12,985 --> 00:20:13,145
Yeah.

297
00:20:13,145 --> 00:20:16,126
I've got to give myself an injectable, you know, daily.

298
00:20:16,428 --> 00:20:18,950
That's not bad to me because it's not bruising me up.

299
00:20:18,950 --> 00:20:20,541
It's not stinging.

300
00:20:20,622 --> 00:20:22,203
It's like once a day.

301
00:20:22,203 --> 00:20:24,364
So there's three things right there.

302
00:20:25,746 --> 00:20:29,248
my concern is on it for life.

303
00:20:30,430 --> 00:20:31,741
I'm got to watch my liver.

304
00:20:31,741 --> 00:20:39,978
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?

305
00:20:39,978 --> 00:20:43,641
Cause injections for life really aren't that good from what I've heard.

306
00:20:43,641 --> 00:20:45,454
I'm at risk for re-clotting.

307
00:20:45,454 --> 00:20:46,844
It's just the way it is.

308
00:20:46,844 --> 00:20:48,514
don't know yet why.

309
00:20:48,514 --> 00:20:49,834
That's not the point.

310
00:20:49,834 --> 00:20:51,474
The point is it happens.

311
00:20:51,474 --> 00:20:55,374
So can we stop making mistakes and stop wasting time?

312
00:20:55,374 --> 00:20:58,534
Because I'm going to be 61 in about a month.

313
00:20:58,534 --> 00:20:59,174
All right.

314
00:20:59,174 --> 00:21:02,104
I want to have another 20, 30 years of a decent life.

315
00:21:02,104 --> 00:21:03,884
And if I have to deal with blood clots, fine.

316
00:21:03,884 --> 00:21:08,114
But please help me understand what's going on and how to prevent more.

317
00:21:08,114 --> 00:21:15,394
Because right now it seems like a lot of the medical community is within my own world is a
little bit clueless.

318
00:21:15,394 --> 00:21:17,845
And I know that blood clots are very complex.

319
00:21:17,845 --> 00:21:22,045
a very, it's a very hard thing to grab ahold of.

320
00:21:22,045 --> 00:21:24,116
And it's a very hard thing to understand.

321
00:21:24,116 --> 00:21:29,128
And it's really difficult when all that crap's going on in your body and you don't have
any answers.

322
00:21:29,128 --> 00:21:30,438
It makes you feel vulnerable.

323
00:21:30,438 --> 00:21:31,657
It makes me feel sad.

324
00:21:31,657 --> 00:21:33,079
It makes me feel depressed.

325
00:21:33,079 --> 00:21:34,199
Yeah, I'm optimistic.

326
00:21:34,199 --> 00:21:35,669
And do I think I'm going to rise above?

327
00:21:35,669 --> 00:21:38,160
Yeah, it's kind of the way I am mentally.

328
00:21:38,160 --> 00:21:44,542
But those waves, like I said, that come crashing in and we're the lighthouse, the NBCA is
the lighthouse.

329
00:21:44,542 --> 00:21:45,282
We try to

330
00:21:45,282 --> 00:21:49,763
bring people off those stormy seas and at least calm the waters for them.

331
00:21:49,763 --> 00:21:57,985
Well, once I get the waters calmed for them, I may go off mic, I may go offline, and those
waves are slamming me.

332
00:21:58,026 --> 00:22:00,426
They're slamming me and I have to deal with it.

333
00:22:00,426 --> 00:22:03,307
So it's really difficult.

334
00:22:03,307 --> 00:22:12,700
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.

335
00:22:12,700 --> 00:22:14,304
It shouldn't be like that.

336
00:22:14,304 --> 00:22:17,136
No, and I'm going to have to keep fighting.

337
00:22:17,136 --> 00:22:28,084
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.

338
00:22:29,365 --> 00:22:33,347
I don't think they realize how I feel.

339
00:22:33,708 --> 00:22:42,294
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.

340
00:22:42,682 --> 00:22:50,937
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.

341
00:22:50,937 --> 00:22:52,388
They'd be humming, right?

342
00:22:52,388 --> 00:22:55,130
Because then they would be affected by it.

343
00:22:55,130 --> 00:22:58,472
It's really hard for the outsider to understand.

344
00:22:58,472 --> 00:23:03,255
with the patients, that comes with their family, with their circle of friends, with their
employers.

345
00:23:03,255 --> 00:23:04,406
Nobody really gets it.

346
00:23:04,406 --> 00:23:06,717
And I see this in the patient group all the time.

347
00:23:06,717 --> 00:23:08,138
Well, you look fine.

348
00:23:08,418 --> 00:23:09,178
You look fine.

349
00:23:09,178 --> 00:23:10,789
No, we're not fine.

350
00:23:10,789 --> 00:23:13,621
We're not fine physically and we're not fine emotionally.

351
00:23:13,621 --> 00:23:17,322
But to have to fight for that is exhausting.

352
00:23:17,702 --> 00:23:19,003
Am I going to give up?

353
00:23:19,003 --> 00:23:20,324
Absolutely not.

354
00:23:20,324 --> 00:23:25,106
It's made me much more determined to get to the bottom of this.

355
00:23:25,106 --> 00:23:33,150
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.

356
00:23:33,150 --> 00:23:33,950
Right.

357
00:23:34,104 --> 00:23:40,599
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.

358
00:23:40,599 --> 00:23:42,090
They have a right to know why they're clotting.

359
00:23:42,090 --> 00:23:45,082
They have a right to know everything.

360
00:23:45,463 --> 00:23:47,835
And we just have to keep pushing.

361
00:23:47,835 --> 00:23:49,576
And that's what I'm going to keep doing.

362
00:23:53,816 --> 00:24:04,294
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.

363
00:24:04,815 --> 00:24:09,959
Thank you for joining us here today on another episode of Taking a Breath.

364
00:24:10,040 --> 00:24:17,346
For more information on risk, prevention, and community, please visit stoptheclot.org.

365
00:24:17,346 --> 00:24:20,349
We know the patient because we are the patient.

366
00:24:20,349 --> 00:24:22,274
Together with listeners like you,

367
00:24:22,274 --> 00:24:24,573
we can collectively stop the clot.