Understanding PFO and Stroke: Real Stories, Real Answers

In this episode of the Stroke Buddies Podcast: Real Stories. Real Recovery., host Ralph Preston is joined by Robin Cha, a nurse and stroke survivor who now runs PFO clinics, and David Dinero, a physical therapist and stroke survivor.

Together, they share powerful personal experiences and professional insight into PFO (Patent Foramen Ovale)—a small hole in the heart that can increase the risk of stroke.

This conversation breaks down what PFO is, how it’s diagnosed and treated, and what it means for stroke survivors navigating recovery. You’ll also hear firsthand stories that highlight the emotional and mental challenges of recovery, along with the hope and progress that’s possible with the right support and knowledge.

Whether you're a survivor, caregiver, or simply looking to better understand PFO and its connection to stroke, this episode provides clarity, real-world insight, and encouragement.

Knowledge is power—and understanding your condition is a key step in recovery.

Transcript

SPEAKER_00 0:00

And that's the movie.

SPEAKER_02 0:11

Hi, I'm Ralph Preston, and every Tuesday we have these Recovery and Science Zoom meetings where we try and bring you useful information for your recovery. And today is no exception. And we've got Robin Chaika and David Dancero. Robin's a nurse and she runs PFO clinics. And she's also a stroke survivor and had a PFO. David also is a stroke survivor, had a PFO, and he's a physical therapist. So this should be very interesting. I know maybe enough about PFOs to be dangerous. Um, and I have two experts here, and we've got several, three or four people who have gone through the whole PFO journey. Uh so this should be really interesting. So I'll kick it off by asking either David or Robin. Either one can go and and tell us well, basically, just for somebody who doesn't know much about the basics of what a PFO is, and and why not tell us how to actually pronounce it.

SPEAKER_05 1:22

David, okay. I'll let you jump in. Go for it.

SPEAKER_07 1:26

Well, the the genesis of this was a comment that I put on Ralph's website on a stroke, Young Stroke Survivor's website about PFO because I was seeing a lot of discussion about I don't know why I had a stroke, I don't know why I had a stroke. And in my years running a cardiology department, um, I noticed that they don't always, when you have a stroke, check for PFO, which is acronym for patent for Raymond ovale. PFO is a communication between the chambers of your heart that is normal when you're in utero. And when you're born, it exists, but most close, about I shouldn't say most 70% to 75% close within the first month of life. Sometimes with a baby's first breath, they approximate. But in 25 to 30% of us, which is a lot of people, they don't. And they can put you at risk for stroke. And not to be overly terrifying, 50% of people who have a stroke have a PFO, but only 1% of people with a PFO ever have a stroke. So, you know, it's it's scary to find out you have something abnormal in your heart as an adult, but it's also not in any way a death sentence. So most people that have it never even know they have it. It would, it's just an incident. It's an anomaly in their heart, it doesn't cause any problems. But then there are some of us who have a stroke and they do an echocardiogram. They find out that the blood is flowing the wrong way through your heart, and that can take blood clots through it as well. And that's what happened to me. I was boarding a plane nine years ago on my way home from a trip to New Orleans. I lifted my suitcase into the overhead and then lost my ability to speak. And my left side went weak and everything was crooked. And my husband had just read something on social media about how to detect a stroke, and he looked at my parents who were traveling with us and said, She's having a stroke. So, and luckily I had good care and they identified the PFO. Um, I went a year without getting treated because I have a a um really bad nickel allergy. And the two main treatments at the time were a gore or an amplast or metal umbrella that they put in your heart in the calf lab through a groin vein and then open it up between the two chambers of your heart. And over time, scar tissue forms. I could not have that because it has nickel in it. Now, some doctors will tell you it's fine. It is not fine. I will die on that hill. Um, I've had a lot of patients in my many years as a cardiology nurse who have had bad reactions from having their allergen implanted in their heart. So I always advocate for nickel allergy victims. I was lucky enough that a year in and being very intolerant to the blood thinners that they treat you with if you can't have closure. Um, and my heroes on actually joined the call, Dr. Professor Anthony Nobles, who invented the noble stitch. And I was able to be the 34th patient in the US to be closed with a single stitch in my heart. They can use more than one stitch. I only needed one, and eight years of stroke-free living since then. So, and no allergies and I'm off blood thinners and all that good stuff. It had also cured, I had a condition called platypne orthopiaxia too, which is when you stand up, your oxygen drops. And that cured that as well unexpectedly. I didn't really realize that was the cause of that. So that's my backstory. I'm gonna turn it over to David.

SPEAKER_05 4:52

Yeah, thank you, Robin. And and I think this is really such an interesting time to be doing this too, Robin, because I don't think that I've never been in a forum or an event. So brought to Ralph's credit. Ralph, you're on the cutting edge here. Not only are you working at both streams, but I've never been in a conversation with someone who actually has had closure through a noble stitch. And I'll show you, I'll I'll talk about a little bit about my story because I Robin did a great job explaining what a PFO is. I can tell you I'm also in medicine. Ralph mentioned a physical therapist, married to a nurse, and uh six years into clinical practice as a physical therapist, I woke up to a stroke that I didn't even recognize as a stroke at first. I had uh three children under the age of seven, so sleep was at a premium, and I woke up with my left side somewhat impaired, dragging, thinking that I'm, you know, I just bad night's sleep. Proceeded to go down the stairs and fell down the stairs because my left side started to give out. And I continued to ignore the signs and symptoms. And I give full credit to my stroke champion, my wife, who, you know, after dropping a gallon of milk and doing things in the kitchen, she said, let's go. This is, you know, so I went through the whole workup. Thank goodness I had someone who recognized the signs and symptoms. But I can tell you in all the diagnostic workup and everything, hearing PFO, and I just mentioned this for the first time when it was finally revealed, and we can talk later on about the testing and and how that comes about. Did you the the diagnosis it's worked up after a term for me, cryptogenic stroke, which means a stroke with unknown cause or only maybe not fully investigated causes yet? And in and at the time I was 39. And I can tell you when I heard PFO for the first time, I'm like, PF what? PF Changs, PF, what what is that? You know, and so it I and I think the other nice thing about this conversation is my stroke went back. I'm now 18 years, be 18 years in May, PFO closure, post-pflosure. And I was at a time, my closure was at a time, and I also have the amplatser device involved. And to Robin's point, I was never tested for a nickel allergy. So I'm very lucky that I think now that I did not have it, but I was sort of in that Wild West period, I call it, when they were just figuring out um clinical trials were just starting to enroll, and I was um closure options, their closure advice was all over the place. I tried, like I I do want to, in my opinion, this is a big decision, and it's not one I took lightly to decide that I wanted to have PFO closure. I was in my late 30s, I was very active with my children. I played ice ice hockey at the time, and I I mentioned this to Robin and Ralph in a pre-pol last week that cumining and I and and and hockey and hockey skates don't go great together. And I know I wanted to get back to not you know the level of intensity, but I wanted for me, it was a quality of life issue. And I technically you can say failed medical management because I tried that as a first line of just preventing a second stroke, possibly by thinning my blood and other means. But for me, when I opted for device closure, I didn't know that I was getting device closure at the time through it with what was called a humanitarian device exemption, meaning at the time, and it's important for folks that we talked to some folks that are maybe just recently diagnosed with this. I actually had to, in order to qualify, I actually had to rule in for a first stroke. And if you think of how crazy that is, I had to prove, or my my clinical team had to prove that this stroke in my 30s was not my first event at the time, the only way through this method that I could get approved. And when they looked at my brain and I look back to an event that I had at 17, I had a I had a TIA at 17 on the ice playing hockey that was to this day the most terrifying thing that I still recount and and I am in the process of writing a book, and it was hard for me. Took me 18 years to write a book about this because a lot of these things I hope folks can learn from. But it took that image on on still an old infarct in the area of my brain to be able for me to like for PFO closure. And for me, fast forward, it's been it's been a game changer for me. And you know, I'm 18 years out, and I'm you know, I'm to this day my my post-procedure medication regimen is now just a baby aspirin. But I was able to get back, and that that was an area that I'm still advocating for to a this allowed me a quality of life choice that I'm very fortunate to have. And um, I just feel like there's a lot we can talk about, about you know how how the work of, and I think I'm gonna hand it back to Robin. Maybe how do you go about that process of screening? And maybe we can talk about the different types of screening diagnosis that uh a someone who might be just new to this process would go through. But I don't know if this is a time to ask for a question, Ralph, or do you want to just kind of keep going?

SPEAKER_02 10:38

Well, I was I was gonna say one of the things that I think this conversation would be useful for is people who are have been potentially diagnosed with one but haven't gone through the process. So first off, I want to say to anybody out there in YouTube land who's facing one of these, remember the two facts that got said in the last five minutes. And Robin said she was eight years out, and David said he was 18 years out, stroke free without any problems. So the people that are out there are worried, you know, after we have a stroke, we worry about our future. Once you find out you have a PFO, you again you're wondering about your future. So if you're wondering about your future, remember those two things. And then I think the best thing we could do right now before we get into like the procedures would be how do they diagnose them? And Robin, you've got a lot of thoughts on the things that you should be asking the specialists. And that's the question we get in the groups. I've got a PFO, what I've been diagnosed, how do they figure it out? What can I expect? What should I do? Because people are fairly clueless. So I'll zip it now and let you talk.

SPEAKER_07 11:51

Yeah. So uh first, a strong opinion on my part when I talk to people and the potential for a PFO or having a PFO and being dismissed when you have it as it did not cause anything. Um, that generally happens when people are seeing a medical cardiologist. It's really important. So there's there's 11 subspecialties in cardiology that fall under three umbrellas medical, interventional, and surgical. And then they have super specialties underneath those. It's really important if you have a PFO or you've had a cryptogenic stroke and could have a PFO to see an interventional cardiologist. That's step one. Those are the doctors that diagnose and treat. So seeing a medical cardiologist is great. And the it's kind of like if you, you know, if you go to a psychiatrist, they're gonna deal with your psychiatric issues and people think a cardiologist is a cardiologist. That is not actually the case. You see a medical cardiologist, he's going to put you on blood thinners. You see a surgical cardiologist, he's gonna want to cut you open. What you need in this case is an interventional cardiologist. So just wanted to put that out there. It's not a well-known fact, but it's a question that gets asked on my social media sites all the time is why is my doctor telling me that my migraines aren't because of my PFO, my stroke wasn't caused by my PFO, my oxygen drops weren't caused by my PFO. And that's because, and this is the other reason I say to see a specialist, in 1950, medical knowledge doubled every 50 years. In 1980, medical knowledge doubled every eight years. In 2020, medical knowledge doubled every 73 days. That is a lot of knowledge that's out there. So I can guarantee you that somebody that's not super specialized in structural interventional cardiology is not up on the latest and greatest of all of the research that's out there that suggests that closure is superior to medical management and that, yes, migraines can be related to PFO. So typnearphy dioxia can be related to PFO, and strokes are definitely related to PFO. So that is my first piece of advice. And then if you haven't had a bubble study and there's there's really two different kinds, and the the standard one is an echocardiogram with agitated saline. So that means echocardiogram outside your chest, they inject micron, little tiny bubbles into you. They're not dangerous, and they watch with the echocardiogram to see them go through your heart. And if you have them going through your heart at rest, you're at high risk. And generally that'll happen when you have a very large PFO or a PFO with an atrial septal aneurysm, which is a pretty common co-occurring thing, which means floppy skin around the PFO. I had that. And then they'll test you when you're bearing down. That's called val salvo maneuver. And that will show, you know, for me, my val salvo was lifting my suitcase into the overhead, and that allowed the blood to rush through and potentially a clot, which caused my stroke. So the other kind is called a transclant transcranial Doppler, where they put Frankenstein electrodes on your head and they do the same thing with the saline and they watch what goes up to your brain. So that's less commonly done. That was actually how they diagnosed mine in the first place. But then I had about 50 other tests. So they'll also do what they call uh a transesophageal electrocardiogram where they give you twilight sedation, they numb your throat, and they go down into your chest and then they they look around. That helps them identify what's going on with your anatomy because it could be there could be more going on. So they're they're getting kind of the lay of the land. So most people need both of those before they consider a procedure to kind of map everything out, understand how much is shunting through and how high their risk is. Because any procedure carries a risk with it. So if you have a grade one or two PFO and you haven't had a stroke, you may never have an issue because of it. Um Dr. Nobles will laugh, but PFO patients can be pretty crazy. I'm one, so I'm allowed to say that. As soon as you hear you have a hole in your heart, like you want something done, you want it closed. But it's not always the answer if you haven't had some of those symptoms because of it. Because, you know, with the people who have a metal device, you can have allergic reactions, you can end up having autoimmune conditions, it can move out of place. There, there can be some serious side effects. It's not common, but it is a risk. And they'll always tell you about all the risks of a procedure before that they they do that. I'm sure all of you have kind of been involved in that. So those are the tests that you need in addition to the tests to diagnose your stroke, which MRI, MRA, CAT scan, whatever they're going to do to see what's going on in your head. Um, I was just speaking to one of the noble stitch cardiologists this morning, and he was talking about how difficult it is, even 18 years after David's closure, to get insurance to cover it. It used to be required two strokes. Now generally it's one, but sometimes they're getting approval for people with plentypnia orthodiaxia or life-altering migraines in rare cases. So you need all those tests in order to kind of package it all up together and prove that you're a candidate for closure.

SPEAKER_02 17:13

So you can't let David, I'll be real brief.

SPEAKER_05 17:16

No, no, ask your question, I'll jump off that problem.

SPEAKER_02 17:18

It's a kind of a devil's advocate question. So, I mean, if I had a PFO, I would just want to go in and get it close. So you can't just walk in and go, Well, I don't care about the any of this. I if I have one, I have one, I want to get it close. But you you're saying you have to, David was saying you had to prove it.

SPEAKER_07 17:37

You do. You and it a couple of things with that. Yeah. So first of all, it's for good reason, not just not just because of the risk that's higher for people who get it done. Even if you offer to pay out of pocket, a lot of physicians will say it's a small PFO, you've never had any symptoms, you found it incidentally, I don't recommend closure. But insurance companies for sure aren't going to pay for it if you're not having those issues. But I was once asked, I do medical financial analysis as part of my job. And they asked me just to do an analysis, not on if everybody with a PFO had closure. And remember, that's 25 to 30% of the population. But if everybody was screened for PFO since so many people have it, that would collapse our entire US medical structure. We could not bear the cost of that. So it's there's a there's a really good reason, both financially and for safety reasons, why they don't just go close everything. But there are cases where people are dismissed and way too often when they should have closure, when that is the best option for them.

SPEAKER_05 18:42

Nice. Yeah, and I'll just I'll just jump off that point that Robin. So I was one that going through that diagnostic process, I had I started with I always get the T T, there's a lot of T's in this diagnosis on this diagnosis. So I had the transuras transhoracic first. They just they saw that there were a number of bubbles passing, and they did dove deeper by going to the T E G, which is transesophagal, which basically I still think of that as having to, you know, you're awake during the process, you're numbed out, but I was like swallowing this vile goo that I thought of as they got a better image because it's going down one orifice to kind of visualize and get a better view of the heart. And um, I didn't have a transcranial doppler at the time. I don't even think it was, it was just maybe just starting to be uh looked at. But this is where, and there are other things I just want to add too, because there are, you know, I also in during this process, uh I had to meet with not only cardiology, but hematology and uh excuse me, neurology. And it for me, when I say it was the Wild West, because I'm I I wore as so I can remember too, I'm here in Rhode Island, but I also I was treated initially in Rhode Island, and then being so close to Boston and having access to some you know more care options, I ended up having closure in at Mass General Hospital. But during that process, I can just tell you, I was initially handed off to someone at my local uh hospital that they were ready to close my PFO that afternoon. And and I, you know, and I wasn't comfortable. And I said, you know, they told me like you, you know, I I'm running my own practice, have three kids, and and I'm told you shouldn't lift more than eight pounds because you have a fairly large PFO that probably are at a high risk. So, you know, go back to deciding what you're gonna do, but you really can't lift more than eight pounds. And as a as a physical therapist, manual therapist who also that meant I also more importantly had to alter my business, but I couldn't even pick up my three-year-old, right? So for me, I was but I I still didn't feel comfortable with like figuring out this after. Like, and when I dove deeper, and this is important for folks listening who may have this diagnosis and are trying making to Robin's point about knowing who you're working with. And when I dove deeper at the time, this person had only closed 14 PFOs, and I and I just wasn't comfortable with that. Either was my wife, and we found we we eventually made a way up to Boston to get more opinions. But that process for me ended up taking about nine months, and so my life was kind of put on hold between meeting with the committees, and so you have to, you know, the full workup also involves looking at you know potential for clotting disorders. Uh, you know, I wore a halter monitor for a couple of weeks to make sure that I didn't have any a fib other risk factors for stroke. But uh it it's it was really important because and it's the reason I still do this today is because it in what I started with, this is a big decision. And to Robin's point, uh there's so much I still feel we need to. Learn in terms of I was one of those percenters, and I'm in Robin, please jump in on this also. I was one that also had my migraines completely abated. And now I wasn't a one to two migraines a week type of person, but I was four to six a year that would come on and put me in a dark room. I would see the aura. And to this day, I don't know that we studied that enough because to this day, going on 18 years, I have not had a single migraine. To me, that's like icing on the cake for bringing back the quality of life and also the yes, to Ralph's Ralph had mentioned you get this diagnosis and you're scared and you're trying to figure out in the back, there's always this looming thought. I have this, I hate to call it a defect, because we are born with this even before we're born. As a fetus, we have this. But in a certain percentage of the population, I'll just add because you know I'm also the co-host of the No Strug Podcast, and education and advocacy is dear to my heart. But after 81 episodes, we finally had an episode that just we launched over the weekend on PFO. So we just I just conversation in these topics. We we just brought in someone from a vascular neurologist out of Tufts Medical Center, and we we we went through these uh a lot of the conversation today from the provider that the the neurologist, and there was a two-way conversation. Maybe I can put up the links after Ralph for your group. But the things we didn't get to were the things that I we talked on the surface about migraines, and we could have talked for two hours, just like I'm sure Rob and you and I could talk for a long time about this topic. But the things to this day that the migraine part or looking that deeper in clinical trials take a lot of money. So, you know, it's you know, I don't know if that's one of the reasons there's some trials that I think were were started. And I'm not sure maybe Robin, you have information where they are with that. But the other thing that I wish and I asked this, and and I didn't really get a clear answer is when this happened to me, and then my young kids exhibited some symptoms when they were like seven or eight years old, where they were, you know, one case passed out and the other case had some neurological symptoms. I I asked the question about genetics, and I can tell you the way the neurologists explain it, maybe leave leave it open. Um I I I was told that I don't think we know, but he said if you took if you took four kids, let's say I had four kids and I had four brothers and sisters, and if we use that 25%, maybe two of those eight may in fact have a PFO, but is it is it a problem? We don't know. I don't know, Robin, if if you have any more to add to that.

SPEAKER_07 25:07

No, I mean, I my grandfather was one of eight children on my mother's side, and all of them died of strokes, and all of them had PFOs, which weren't treated back then, obviously. My grandpa had seven strokes before he passed. So uh I don't know if it's genetic or just that it's so prevalent, but it sure feels that way in my exam. Yeah, a physician in Chicago will be evaluating my daughters just because they both have some similar symptoms. And, you know, part of me doesn't want to know because we'll go through one of them probably could get treated because she does have the passing out and potentially platinum orthodoxia. Um, but you find out they have it, and then you live with that and the anxiety around that, and it won't get close because neither of them have hits. So it's it's a tough decision. And and everything that you said, David, with me as well. Um when I had mine, I was in the industry. I had been a cardiovascular nurse for over a decade. So I knew more than the average person, but I wanted to know all of my options and the options that will be presented to you. It I the way that I put it is if you go to a Toyota dealer, they're not gonna tell you the benefits of a Honda. So, and I don't want to talk poorly about doctors because there are some amazing ones out there, but they're gonna tell you about the procedure that they were trained to do. And that was not enough information for me. So I started, I have two Facebook groups, one specific to Noble Stitch and then one more general about PFOs. And I go every six months onto the MOD FDA website and I pull the adverse events for, and this is the process I went through when I was making the decision about whether or not to close. I pull the adverse events for what's now the umplats or talisman is the current device, and then um the Gore PFO closure device, and I summarize it for myself. There are no adverse events for the Noble Stitch reported in the 18 years that it's been used. So that helped me make that decision because while they're rare compared to the thousands and thousands they do, I wanted to be fully informed about what were my risks, what could possibly happen to me. Because I'm a mom of three, you know. I I wanted to be here to see all those things for my kids. And I had also seen some bad things when I was scrubbed into closures in the cath lab. But like I said, very rare. I just wanted all the information. So that's why I started my my groups too. Um, Dr. Nobles could say, like, he can't advertise or anything because they're in clinical trials and they're early. Um the amount of information that I could get without going out there and hunting for it myself. And there was a big demand for people like me who wanted a third option to have a place to go to read about other people's experiences, to understand what this option looked like, what were the risks of the option? And that's kind of where I came from. The decision, it took me a year. Um, when I made it, I wanted to feel like I had explored every possible avenue. And so I'm trying to make that easier for people at this point. And that's for the last eight years, I've grown these groups and helped people to find what they needed in order to feel comfortable with the way they just go.

SPEAKER_05 28:31

Yeah, and I'll just add to that, that is so important, Ron, because that's one of the things that kind of keeps me going too. At the time, you know, my wife and I were digging into the literature, trying to find, and honestly, I could only find, and here I am almost almost hitting that that that benchmark that I looked at as in the literature, I could only find someone that was about 20 years out, PFO device closure. And it was just happened to be a a writer who was talking about in his story, I stumbled upon it. And then I I'll be honest, I found I'm here in New England. I found out that Teddy Bruski, who had a stroke. If you're in New England, you know he played for the New England Patriots, and he was like the only person I knew that kind of came back from a new, you know, when you're in medicine, if you dig deep enough, uh hipper aside, like people do to mention, I like end up finding out that he had uh device closure. And so I ended up teaming up with him, and Ralph mentioned at the beginning, I ended up, you know, getting on that team and going, you know, advancing was motivational and having a community of other stroke survivors, but I found it to a point now. I found like that was also motivation why when I had the opportunity to go testify before the FDA's device regulatory committee when they were deciding on when they finally pulled enough data for the respect clinical trial that I do mention on my blog, I I gave patient testimony because I just wanted I didn't want folks to feel alone and without. And I know that like my wife and I had the extra ability to dive deeper because we were we were and are still in medicine. But I know for those folks that didn't know that this was an option, I thought it was it was important to, you know, although I had to condense my whole journey in three minutes of FDA testimony, I I heard later that it having that patient perspective and that decision really weighed in because I was part of a the PFO, the original patient-led PFO Research Foundation, which is no longer in existence because it lacked the funding. But it it was enough that that community brought us to that point where I think we could give folks today that maybe are listening or watching the replay, feel like maybe now that pathway, that path is a little bit easier. But I'm also involved with a similar forum in a group for PFO migraine stroke that uh that when I jump in periodically, now I'm not actively involved in those groups as much. Now I've turned my focus into podcasting and other things in my own business again. But I do find that to your point, Robin, there's still a lot of like there's still a lot of questions, and there's still a lot of denials, and there's still a lot of why aren't we doing more? Why aren't we looking at migraine? Why aren't we looking at these other risk factors or conditions that may be associated?

SPEAKER_02 31:39

Yeah, yeah, but go ahead. Um, Robin mentioned her Facebook groups, David mentioned no stroke and and studies and such. So everybody here and everybody out there watching the replay in YouTube, Lynn, I'll put their contact information and David's NoStroke, Robin's Facebook groups, anything and everything that they give me in the description underneath this video. So if you want to contact them or listen to David's podcasts or any number of other things, you can do that. Robin, uh, real quick, we got a question. Um somebody's asking, um, well, I know who it is. Umce the PFO is closed, uh, should it be checked again? And how often should it be checked?

SPEAKER_07 32:25

If I'm gonna give a controversial answer to this, and that is no. Unless you're part of a clinical trial and it's a requirement. I I was rechecked. Um there's research out there now, uh, a doctor who does probably some of the most research in in Europe, Achille Gasperdoni, um, that suggests that full closure isn't necessary in order to protect you from future stroke. And that was specific to the noble stitch. But um if you if you see um what you get rechecked and you have 30 bubbles passed. Those 30 bubbles are each 10 to 90 microns. A stroke clot is a thousand to fifteen thousand microns. So just because a few bubbles pass does not mean that you're at risk for future stroke. That's a much different thing. The bubbles are just there to tell you there is some circulation going through, but 30 bubbles is nothing compared to what it takes to cause a stroke. Um and, you know, Dr. Noble said it once on a he did a recorded interview for me that they're in the business of preventing strokes, not preventing bubbles. So getting rechecked can be fairly useless. It's a semi-invasive procedure. And also, what is it gonna tell you, really? I mean, in very rare cases, people, you know, with devices will find that they've moved or um, you know, whatever, but not having full closure does not indicate that you are at risk for future stroke. You've still altered your anatomy and closed it enough that in most cases you've you've protected yourself. So I'm thinking more from the the psychiatric nurse part of me, which is another life that I lived, uh, causing yourself unnecessary anxiety, which can be another risk factor for future stroke.

SPEAKER_02 34:09

So go ahead with what you were gonna say when I interrupted you.

SPEAKER_06 34:14

Oh, Eileen? Can I talk about it?

SPEAKER_02 34:17

Oh, yeah.

SPEAKER_06 34:18

Okay. I am so impressed by this whole this whole discussion. And I'm part of a stroke support group in Buffalo, New York. But when we asked the question about the PFO, it was kind of they made it seem like not many people have had a stroke from the PFO, and there were four members that did have it. And, you know, migraine sufferers, people who are on the birth control pill, and I don't think there's enough information to prevent um people who have different uh conditions from being checked. And I don't know how to handle that.

SPEAKER_07 34:51

I so agree with you. We are very dismissed. Um, but like I said, only 1% of people with a PFO will have a stroke, but 50% of people who have a stroke have a PFO. So anybody who claims, I I always tell people if a doctor who's about to suggest that they put a big metal device in your heart says, don't worry, don't get tested for a nickel allergy, run. I can give you I can give you some great recommendations. You can mention that to me. Yes. And and if a doctor says PFOs have nothing to do with stroke, run because they're giving you not even outdated information, just plain bad information. And frankly, the connection with PFO and and migraine is is pretty well known by now. And and the same doctor I mentioned before, Achille Gaspardoni, is being able to predict who who he can stop migraines with by closing. Mine, I suffered blinding, debilitating migraines and some that were atypical, which looked more like seizures than migraines. So they were life altering weekly at least, from the time I was 12 until the time I had the time I had my closure at 47. And I haven't had a single migraine in eight years. Not one, not an aura, not even a hint of a headache in eight years. So no one can tell me that there's no connection.

SPEAKER_06 36:05

So I did have, I obviously had migraines, um, take migraine medication. I'm on newbrelly now. However, I did have the PFO closed. I've seen improvement, but I still get the migraines. Yeah.

SPEAKER_07 36:17

I'm glad you see improvement. Yeah. I I wish everybody had the exact same results that I did. Um and I did not expect it, but it was a miracle for me.

SPEAKER_05 36:28

Yeah. And I'll just add too kind of echoing off the conversation that we just had with uh David Taylor, a stroke biologist, out of Tufts. And this was this, and and thank you, Ralph, for putting these links in because one thing he said during the discussion really impacted me. And and we did this in collaboration with the Stroke and Young Adults Consortium, which is a newer entity that's sort of that I'm involved with as a patient stakeholder to give more voice and more options for the educational side of supporting life after stroke. But one thing that Dr. Thales said that resonated, and he said, you know, after you do the workup and things that we cover today, um we talked about a little bit more focus toward the younger stroke and even defining young. I was young when I had my PFO close. I'm probably on the outlier now because I'm in my 50s, and I'm maybe not even will classify as a young stroke, but I'm still a young stroke survivor that is now living with life after and in dealing with the things that come with that. However, he said, you know, and you you you nailed this, Robin, when you said, you know, it it leads to a 1%, possibly a 1% increase. But he also added, and I have to go back and we hope to get some follow-up questions to him, because he said that 1%, he said roughly one to one and a half percent, but he did say per year as you get older. So he said someone with a stroke diagnosed at 40 who hopefully is gonna live another 40 years or more, he went, if you're gonna live to 100, does that mean do you have another 40 to 60 percent if you add that 1% every year? And he he made the analogy said, even if it was one or one and a half, I said that's pretty low risk. And again, all these other potential risk factors like are you of childbearing age, are you doing sports, are you scuba diving, you're climbing and out, other things that might maybe get that hole or that flap to open and maybe present a chance for something to travel across where it shouldn't be, up to the brain. He said, even if it was one percent, if it told you that you're gonna get on an airplane and you're gonna fly, and one out of a hundred are gonna drop out of the sky. It's like when he said it like that to me, I was like, well, it would make me think about it, even if it was just one percent. But if it was two percent the next year, three percent, and I still want to verify that. But maybe folks, if they listen to his in I I went back and put all the chapter markers on that interview because it did run long, it ran about 75 minutes or so, and we broke it down into topics that we covered here today. So I don't know. I do it does anyone else have any um questions or comments? Or Mark, do you have any? I know you're you Mark and I um met over Substack. Mark, I know you you're you've had your PFO closed, right?

SPEAKER_03 39:26

Yeah, just very briefly. Firstly, thank you for the podcast. Uh, I learned a lot from it, even though I was quite familiar with the topic. I had a stroke five years ago. They couldn't find anything besides the PFO. Uh they put in a loop recorder to modern monop modem monopter. Sorry, I have mild aphasia still, monitor for apib. After about three months, the loop recorder hadn't found any apib. I saw my card the cardiologist again, and I wanted to get the PFO closed. It just made sense to me, and he refused. He said studies don't indicate that closing it reduces the risk of another stroke. I didn't really know that that wasn't really right. But my reasoning for getting it closed, obviously I understand date uh doctors need to make their their decisions based on data and clinical trials. But there is something in addition. My reasoning for wanting it closed was very simple. I imagined two futures. If I didn't get it closed and had another stroke, I knew I would regret not having had it closed because I wouldn't know if having had it getting it closed would have prevented the second stroke. But if I get it closed and get a second stroke anyway, I won't regret getting it closed because I would it wouldn't have prevented the second stroke, so it wouldn't have been a good thing, but I wouldn't regret hanging having it closed because having it closed is just an attempt to prevent a second stroke and it might not work. And so I tried to explain this to him, and he just wasn't I couldn't convince him. So I just found another cardiologist. I didn't understand the diff the different types of cardiologists that was explained earlier today, but I just looked for another cardiologist. He was more familiar with the studies. He said, I was 53 when I had my stroke. He said you're l young enough. He was very honest. He said, if you get it closed, he couldn't guarantee that it would reduce my risk of a second stroke. But he said he thinks he thought it was likely. And that was enough for me. And so I did uh I get it, I get it closed. It did get rid of my migraines. Uh so yeah, that's my story in brief.

SPEAKER_07 41:58

It's it's always shocking to me when I hear, even though I know that it happens all the time, how uh some doctors just give completely false information. Um and and I try to have compassion with what I said about the doubling of medical information. It's it's I I'm in medicine, I'm also in tech, and it's the same in tech. There's so much happening all the time that I can't keep up with my own profession. So I get it, but when you're giving information that could be dangerous to people, old, outdated, or just plain false information, that's when I get really angry, which is why I always tell people, you know, anybody that joins in my groups and is starting to navigate through having had a stroke and finding out they have a PFO or trying to find out if they have a PFO, I I soup to nuts I can help put you with doctors who will listen. I know I have a bunch in my pocket that I trust that will do, you know, online evaluations if need be, if you're not in the same state as they are. But it's just it's shocking that something that the the cost of stroke to our medical system and the after effects of devastating strokes is so high. Doing something that has been proven to be preventative could save us so much money in the patients who need it. And it's the fact that people are still out there saying that it's just it's just irresponsible.

SPEAKER_05 43:19

So yeah, yeah. Well well said. And and uh Mark, thank you so much for sharing your story too and come and join us today. You know, to Mark's point too, and things that, you know, I that exact line, I wanted to get back to I wanted to get back to the quality of life. And one thing resonate and in and Robin, thank you for doing the work you do on the on the mental health part of this too, because that's one area that just in stroke in general, you deal with so many things in life after stroke and the trauma. And prior to having closure, I was in that window at time that I described. It was nine months trying to trying to decide, you know, getting in this work up to see if this was going to be a appropriate for me. And I remember to a quality of right point, I was I was home alone with my three children. My wife was working doing the heavy lift of trying to, you know, work extra. And I'm I'm there with my kids and I'm thinking, you know, and this is a nurse occupational hazard too. My wife would be constantly checking, making sure she was doing stroke checks on me, but she wouldn't she wouldn't admit it. But there was a point where I was, you know, afraid we were in our pool and I was afraid to go underwater because I thought if I held my breath and God forbid I had another event because of doing a Val Salbert and to be in the pool and not being able to have, you know, how do you how do you teach your oldest as a seven-year-old to to look for and know what to do if dad can't come up from the pool. So like those things were like quality of blight things, not only like I mentioned getting back to hockey, but just like living my fullest life after and like the icing on the cake and I know it's not for everyone but for me like having a clear head for the first time in a while and being migraine free was just like not something that was even really 18 plus years ago really mentioned too much in the literature and the docs weren't even advertising or talking. But as an aside I did hear one interventional cardiologist said like this is probably going to resolve like matter of fact this will probably resolve your migraines too to a to a pretty good degree or it's just something we're we're kind of aware of from patient report. But so I just I'll I'll leave it at that but I just thought like you know that it's personal choice and it's also with that quality of life and and just not because that's a resounding kind of theme that I hear from folks like I'm scared to death now that I know I have this I'm scared to death of of another event or more you know worse.

SPEAKER_03 46:01

I actually sorry I I have a question from the podcast Dr. Taylor is that his name he said if I remember correctly that clinical trials had there were six of them demonstrated he said something like for the right patients PFO closure reduces the risk of another stroke substantially but he didn't really say what the right patients were in other words it doesn't it seemed to imply that it doesn't reduce the risk of another stroke for everybody who has a PFO.

SPEAKER_07 46:45

Well I I think I can take a swipe at that one. Sure the right patient is a patient who had a stroke has a PFO and doesn't have atrial fibrillation because that if you if you put a a metal device at least in your heart with atrial fibrillation it can make it much worse which is another risk factor for stroke. So so that's and there used to be an age limit they're not sticking to that as much you know it used to be under 60 your your tissue in your heart gets more friable. There can be more damage after a certain age I don't want to think about that because I'm barreling towards 60 and I feel better than I've ever felt in my life because of closure. But I I think the reduce and respect trials and and this is from extensive reading of those and why reading the FDA transcripts and all of those things, they very much limited to very healthy people so that their outcomes would follow that, which I find to be somewhat unethical. I I was in the Noble Stitch trial and it was they they reported off on 100% of the people in the trial nobody was cut off because they didn't meet certain criteria. They were chosen in a lot of habit if they had a stroke and a PFO and didn't have atrial fibrillation. So I think the right patient would be most of the people that would this podcast would appeal to um so I can of course if you have a tissue a tissue integrity issue or whatever that there are some niche things that but I I I also think it's important to note that if you had if you have lifestyle risk factors, if you you have a high BMI, if you're a smoker, um if your cholesterol is through the roof, closing a PFO will still reduce your risk related to having a hole in your heart that that things can get through it's not going to reduce the risk that you're in because of lifestyle risk factors.

SPEAKER_05 48:34

So yeah and I'll just add to to to your question mark too and you did a great job explaining Robin that I was part of that group where in and I heard this when I went to testify during respect but initially when I mentioned like I was part of a group through the PFO Research Foundation we were trying to improve patient education but we were also trying to help accelerate the the research and the data and what I found and it angered me at the time was that some of the top docs around the country that were doing this were not were not sharing and pulling their data and and and if they were it was to me it sounded unethical but it's kind of I thought it would skew and slow down the uh you know the the knowledge base. And I I learned that some of the folks that probably could have benefited this most and I probably fell into that category um were elected for closure not going into a clinical trial because after what I was told to stop you know I finally got the green light I finally found out that it was gonna it looked like it was going to be covered by insurance I I there was a chance that I could have um been elected on the Robin helped me here on the the the the the part of the group that got the sham procedure in other words oh yes and I was like I have to get back like I want this I know I failed medical management let me move on with my life and I and I I kind of you know got my take the term elbows up but I kind of um got more involved in saying like I I need this so I can get back to the work I know I want to do and and the life I wanted to lead. So I I know that when when I testified for respect, it what it was like the third attempt was like it wasn't the first go around for it getting approved. I I heard the panel voted down this at least for I think the amplancer at the time and this was like the third time where it finally got approved and overwhelmingly got approved that time because they the the the the might not be saying this right but I think that the trial data was was better collected at that point. I'm not sure if that's the right way to explain it.

SPEAKER_06 51:02

Eileen had um a question or something she wanted to say when Mark was talking before so is there I had the TPA at 54 and so I look I look the same way. However I had the residuals of everyone else who's had a stroke went through the mental um terrible mental health stage the exhaustion pain we started our own group because people one group said you don't belong here you don't even look like you had a stroke and so the dismissing of people who look look the way they used to look but who continue to grieve what they used to be.

SPEAKER_07 51:46

So is there a podcast for that have you had one of those no but now you're getting me thinking Eileen I as a another life that I live is I own a mental health clinic the first of three that I'm opening and our primary practice that we have is for stroke survivors. So yeah because three of us at the clinic have had strokes and we don't look like we had people say that too all the time.

SPEAKER_06 52:12

It's like and then you're you're you're tired you're you're not as social as you used to be because the exhaustion people just think you're I don't know what they think but it's difficult.

SPEAKER_05 52:24

Yeah I'll just say I agree totally and we have had several younger stroke survivors on but also from 20 to 60 plus have said that and like have been dismissed. In fact now one that comes to mind Carolyn Goggin who was probably our third guest on the show she's also uh a um she's also does the intro jingle for our show and the welcome message she was told by I think she says it best on the podcast like well you you only had a minor stroke you're you know you you yeah yeah and so very very it's it I say no I was in intensive care for two weeks and then I had therapy and they're just like well was it a real stroke or was it just a TIA I said well it was a real stroke I'm telling you it's it's uh interesting because I had just written a note before I called on and I leaned to say Robin talk about this a little bit about the psychology behind it.

SPEAKER_07 53:30

We probably have a whole nother hour on that we could also we could do a whole podcast on that Ralph but just very briefly it's it's very similar to people who have cancer that's not breast cancer. And I I had thyroid cancer and the first thing anybody said to me was oh at least it's not break breast cancer. A lot of people get that at least it's not with my stroke at least you can talk. I couldn't talk initially but very quickly I got my speech I still I don't know if it's because I'm old or because I had a stroke that I lose words sometimes but um it could be one or the other who knows but you know it it's not there's never a justa when you had it and that's a frustrating position to be in especially when people just expect you to get right back to work and and and Dr. Nobles knows me but I chose to have my closure with no sedation. I'm no wimp like I have I have I own a business I own a a clinical practice I I do clinical trial monitoring and I'm the vice president of data for the largest healthcare corporation in the world. I'm very busy um but anytime somebody says oh your stroke was a little one no it wasn't they weren't there I just left my body it was you know so so the psychological impact is is twofold number one what you mentioned about fatigue uh exhaustion is you never can predict I mean I had three children so I know what exhaustion feels like this is a whole other level because it's not because you didn't sleep it's because your brain isn't functioning the way it was exactly all of all of those things that change in a split second you don't have time to adapt to like you do with a long chronic illness. It just it's like a lightning bolt and then your life is different and you can fight your way back and I feel like I'm 99% back. But that it all still resonates that at any moment in your life, once it's happened to you, it can happen again, even if you get closed always there in the back of your mind. So we treat a lot of a lot of patients early on because I think what I advocate for is a four-pronged approach, which is neurology cardiology, physical therapy and mental health therapy should everybody that goes into the hospital that has a stroke should be surrounded by all of those services and a they should be talking to each other. And that that's what we try to do. We try to create in my clinics a continuity of care with all of those providers so that we can be discussing how we support that person best from all of those aspects. Is it local with it's in Chicago it's in the Chicagoland area. I'm trying to work with other clinic owners to to model the program and then push it out for free so that other people can duplicate what we're doing both from a group therapy perspective where stroke survivors can get together. We also have you know can do group therapy for families that are taking care of stroke survivors because I'm always shocked at how marriages break up and you know of adult children with stroke finally say I can't do this anymore. Like it's sort of there's a lot of fatigue involved in being the caregiver too. So I was my my grandfather's caregiver so I I understand that. And so we're just trying to bring all those pieces together. It's very complex but I think it's so under addressed you know you think person leaves the hospital and they're fine. That's not how this works it isn't.

SPEAKER_02 56:54

Well I do a little thing sometimes you know tell people okay everybody got physical therapy put up their hand and almost every hand goes up. All right if you got PT and OT leave your hand up. If you didn't get OT drop it half the hands drop or more if you had speech issues and you didn't get speech therapy drop your hand and there's still a few hands up because they got all three okay anybody get mental therapy leave your hand up all hands go down I've never had anybody like because it's driven the problem Robin is a lot of this you know you your four-pronged approach I completely agree with it but a lot of this is driven by the insurance companies and so it's a matter of proving to them that you need a closure um it is it's yeah it's they would save money in the end if they took that comprehensive approach in the beginning I will that's another hill I will die on it's letting letting the the mental health residuals of it continue for years afterwards without getting trained appropriate help for that that causes all the physical things that come after too and mental health is health.

SPEAKER_05 58:12

Yeah yeah oh yeah yeah there's stroke caused causes depression depression causes stroke i mean it's just this simple science but it's no I'm glad yeah I I'm I think be your own advocate that's sort of the message and and Ralph you mentioned that's a very very very unfortunately disturbing visual when you when you get a group like that and you ask start with your hands up and finish with no one still has their hand up after looking to see if they're getting comprehensive care. Because in no other and we talk about this on the podcast in no other condition you know Robin mentioned cancer care you know it's not perfect but there's there's there's care navigators there's things there's there's groups that make sure things don't get dropped that blood work's done on time that that hopefully mental mental health is addressed. In stroke it's like you know we do a great job now maybe offsetting some and it's very important time is praying getting them in getting in the hospital get them triage and then we we we close the door on them send them home when therapy ends and we say good luck right and so you know we unfortunately have to you know you know to you know how how do you how do you prove that all this works like I I and I in rock you know Ralph mentioned we've been we've been connected for many years now and I commend Ralph for having events like this it's not easy work and it's it's it's the work that many of us are trying to do in silos and by having intercollaboration like this like you're coming from Chicago you're coming from New York I think we have to kind of amplify our voices with this message because you know I mentioned I'll share it you know I don't know if you can see above but there's a small there's a small flack on my wall that served as motivation for me. And I mentioned to Ralph and Robin that I'm writing about this now so it's fresh that screenshot or that picture I just put up I felt an abandoned post even when I was waiting for closure. So I turned to writing and I found myself after my writing on my no stroke blog that I found myself on the cover of the business science times section of the New York Times and the cover I'll read it because I flash it up quick was popular but not science a divide a device to avert strokes lacks proof that it works. So they they took the business side angle when I thought that they were taking the patient advocacy and care side. And so I set out on this journey to to help give some proof because I know how much it improved my quality of life and I know listening to folks today they were also probably or may still have some I was told I was in this gray area that I could do either but for me I needed a choice. So thank you Ralph thank you Robin thank you everyone today who's who's continuing to kind of like just even bringing this topic up today Ralph and you went out and you found Robin to do this it's fantastic that you know you saw this as an important thing to do.

SPEAKER_02 1:01:29

Maybe you didn't get the YouTube live stream up or we'll get the replay right oh yeah so perfect I want to see everyone in the stroke support group and in Buffalo it's thank you it's a heart hospital or cardiac hospital but I would love to so what's gonna happen next is it's gonna going to be there'll be other people can watch it well I don't know I mean uh David my my issue is you know I'm a big advocate for we've already been talking about some of these things um invisible deficits a mental well-being uh phasia doesn't get enough so and I I see I see many more posts I don't know if PFOs are are scientifically seem to happen to younger people or not but I I see more younger people talking about them that's sort of an anecdotal observation information not pure science but we get a lot more activity on PFOs in the young stroke group than the other ones and Mark you're probably I haven't been keeping track but you're on the on the older end of of anybody I've come across that had a PFO maybe you if maybe they if you're gonna have a problem with it you have a problem with it before you get old I I don't know yeah no no I'll just add because back to the thing how how do I you know yeah so you got a fascia hidden deficits mental well-being PFOs lots of things that are are not getting covered yeah pelvic therapy that's another one unfortunately which therapy speech what therapy is another it's called pelvic oh pelvic floor therapy yeah on my radar I need I need to find a pelvic floor specialist I just found a dysarthria specialist this is not covered much and it's more much in looking it up it's much more prevalent but I'm back to the plate spinning thing you know there's too many too many uh covered subjects out there I'm doing the best I can to keep them all spinning and uh so um you're doing a great job by the way I'm amazed absolutely thank you I do what I can we'll see what we can do and Robin you were talking about other and this is very true I've noticed this stroke should be a lifelong event except we have insurance companies and if they took a more holistic approach they would benefit from it. Actually I had blue 17 years coming up on Friday was my stroke and they assigned me a neurological nurse. Blue cross blue did now it was basically to keep me from having another stroke but if they that was a very my first uh observation of a kind of a holistic approach and if they took it um then uh I think they would save money eventually and other cancer and other things when you were talking about the other uh conditions having more support I thought of Parkinson's and Michael J. Fox raises two billion dollars a year for Parkinson's research now David and I have had a conversation about this we don't have any real stroke organizations that personal opinion here that I feel are serving us and certainly nobody's raising two billion dollars a year for stroke research if we could do that it would be a game changer can I do that I don't know am I gonna give it a try well I'm not gonna set that as a goal because that's a I'm already you know trying to see if I can fundamentally change stroke recovery by bringing resources to people that's a pretty impossible goal okay I'll take on two billion dollars a year hey Ralph Carol has her hand up I just didn't want to leave anybody Carol yeah I wanted to say because I don't think anyone's mentioned this the reason I I had a PFO closure operation at the age of 62 um is because my oxygen levels were falling and I couldn't participate in physiotherapy after my stroke because after my stroke which was in August twenty twenty three I was bedridden and I had a hemorrhage

SPEAKER_01 1:06:00

Stroke, and I was had a weak left side, so I was stuck in bed. Um and my options for physiotherapy were limited because my oxygen levels kept getting dangerously low, and at first no one realised that I had a hole in the heart and an FPO. And then when they did find out, one of the doctors I found I finished up in um a critical care unit and uh a doctor. At first I was described as a medical mistress because my oxygen levels fell and they were giving me oxygen to breathe in at different concentrations, but my oxygen blood oxygen levels didn't go up, and I was on a CPAP machine for a bit. That seemed to work a bit, got my oxygen levels up. But um, but a doctor had the idea that perhaps I had a heart shunt, which I never heard of before. The only time I'd heard of shunt was in connection with coal trucks and Thomas the tank engine. I was thinking I remember lying in the intensive care unit thinking, heart shunt, what the heck is that? And I was thinking, oh, and I didn't have a I don't think I had my phone at the time, so I couldn't Google it. I was just thinking shunting was something that you do to coal trucks to push them along. And I thought, oh, but like, oh, what the heck is this? And I was already already in a in a mental sort of position from having a stroke, when that more than enough to cope with. So suddenly to be told that I had a heart shunt as well. I thought, oh, you know, being me up Scotty, I'd had enough by then. This was all this was this was all in England, by the way. So if I was in the English health system. But but thankfully, thank you, thank you. Um, a doctor realised what might be going wrong, and I had, like Robin described, a bug, a bubble echocardiogram, and then they did the they called it a TOE, the trans esophagal. So they put a camera down your throat to look at your heart there, and then it was established that I did have a hole in the heart, which was causing, and I learned that a heart shunt it was something to do with when I breathed oxygen in before it could get to my bloodstream, it was mixing with the carbon dioxide that was supposed to be breathed out, and so I wasn't getting good quality oxygen into my bloodstream. So, but but fortunately, again, thank you, British National Health Service, the doctor on in the cardiology department that I was by this time moved to, and you have a surgeon in Manchester who carried out PFO closure operations, and they arranged for me to go there, and I was still bedridden, so it was really difficult getting anywhere because being moved by the hospital, I was in a bed, so being taken by a stretcher ambulance to another hospital was sort of very stressful, really. And I was going to meet a surgeon, he might to see if she would be prepared to put me on her surgical list. And but she was absolutely lovely and very very professional. But I immediately you just take to someone, don't you? And I immediately liked her, and she sort of and she I think with a lot of medical professionals, they often keep you waiting for a bit. So I I fully expected her to consult with the doctors back at my the hospital that I'd come from. But she said to me there and then, I'll operate on you, and she said, I'll do it as soon as I can. And she said, um because you can't stay in hospital forever. And I I definitely didn't want to stay in hospital forever. So I automatically thought, yeah, she's she's the surgeon for me. She wants to get me out of hospital, and that's what I wanted to do. And uh and I uh so she was great. So I had the um I think the same as David, I had a a 30 30 millimeter amplacer that disfitted, and she did it within the next two weeks or so. So it was great. Now I have to say, I unlike Robin, I am a total wimp. I'm terrified by any medical procedure. I remember when when I was told I'd because of my low oxygen levels, that I needed to go to the intensive care unit, the only thing that went through my mind was, oh, that sounds like it's gonna hurt. But I am a total wimp. So so, but when when they said I needed to have an operation to close the hole in my heart, I was scared. But this surgeon just I just liked her and I thought, oh yeah, I'm sure, yeah, I just wanted to. So when she said, Oh, I'll operate on you, it felt like mission accomplished when I was sent back to my original hospital, so I could say, Oh, I've seen the surgeon, and she said she's going to operate. So that was great then. And they they did the operation, it seemed it seemed to go all right. And my oxygen levels have been on the you know, on the thing that they put on your finger to monitor your oxygen. I've been a 98-99% since that's when so that was good, and I've been able to take part in and be able to do my physiotherapy, and I'll be able to watch Ralph's videos and see seeing him do his counter exercises, and now I can do sit to stands ten a day, and and I have my I have a little egg timer. So I'll stand up three minutes ten times a day.

SPEAKER_00 1:11:42

Good video.

SPEAKER_07 1:11:43

That's amazing. That's a one thing, Ralph, that we didn't talk about. And I know we had talked about it in our pre-call was about the actual experience of closure. I don't I know we're over time, but if you wanted to, I'd be happy to talk about mine for anybody that watches in the future that's thinking about closure.

SPEAKER_02 1:12:01

Sure. Well, the other thing is, you know, David said two hours. I'm going, well, you do 102, 103, 104, 201, 202, 203. It's it's a technical. I don't, you know, obviously it would depend on you, you're in David's availability. If you want to go a little bit on that right right now, that'd be fine with me. And if we ever if we you know manage to do this again, we can expand on it. And you know, I'm yeah, I'm I'm game. I uh this is this is what I do. I'm not managing like a clinic and and and traveling between states. So I say pretty busy, but Robin, yeah, do you want to report Robin David Ralph?

SPEAKER_07 1:12:49

I can I can do it really quickly too. My same thing. This the dream experience. And and Dr. Noble's it was in the room with me. So the inventor was actually in the room with me, which I thought was really cool. Um, I got into pre-op and they came in to give me sedation. And I said, no, I don't want that. I want to be awake, I want to see the whole thing. This is fascinating to me. I'm being experimented on. This is I wasn't, but that's how it felt back then being the 34th patient. So I think my physician, Dr. Thompson, who at the time was in Virginia, is now in Tampa, thought I was a little crazy because he's most people most physicians who close PFOs are pediatric. Just so you know, even if you're an adult, you'll see a pediatric intervention list in most cases because they do more of them than any adult. There are adult only that do it, but mine was pediatric. Um, I think I was probably the first person he ever operated on wide awake and giving opinions through the whole thing. Uh no, we they they will put you on the table, they will cover you very uh to to maintain your privacy. Um, they shave um around your groin so that they can have get the catheters up in. I only had one catheter. Some people get one in each side. One is the imaging, one is where the device or the stitch will go through. Um and they gave me a local where that would go in because that could be fairly painful, I'm told. Um, didn't feel a thing, just a little bit of pressure. And then I got to watch on the screen as it went up to my heart. And then I watched as they stitched my heart closed with one stitch. Didn't feel anything except for a strange little, it felt like somebody was tickling my chin for a second when they deployed the stitch, not painful at all. And then you spend four hours afterwards with direct pressure on your back. That's the hardest part of the whole procedure, is for me, laying still and also, you know, if you're getting an IV, you may have to go to the bathroom and use the bedpan. That's never fun. But mine was completely uneventful. I we played name that tune through part of my procedure with the team. It was, I laughed that I had no pain. Went back to the hotel because I, since I had a procedure that only one physician was doing at the time, there are many more now. I flew to Virginia from Chicago to have it done. So we went, my husband took me back to the hotel that night, seven o'clock the next morning. I was back at work on a conference call. And then we were walking around DC the next day and went and had whiskey at lunch um to celebrate a good single malt. That's not advised, but I broke the rules because I really love single malt scotch. And we happened to be at the uh at the pub where JFK proposed to Jackie, and I thought that'd be fun. So um, and then I got on a plane the next day. So I never took a day off work for it. People will ask me frequently, like, do I need one month or two months? And I'm like, oh my goodness, I have it back to work the next morning. I don't advise most people to do that. I'm really, really tough, but I don't think you need more than a week in most cases. Um I'm sure that other people have had other experiences, but mine, um, I would rather have that done again than get a tooth drilled any day of the week.

SPEAKER_05 1:16:04

Yeah. Thank you for sharing that, Robin. And in my case, for me, I think my journey leading up to closure was the real battle, the actual procedure. I spent a night at Mass General Hospital. I elected to be knocked out. I wasn't afraid of night. But post-procedure, um, I just remember uh, you know, your little sore in the groin area to Robin's point about the prep. And I I I I will I remember this because I'm also kind of writing about it now, too, that I was deathly I spent the night overnight at Mass General, and my wife actually probably got the first good night of sleep in a while. She was in in a hotel uh across the street from MGH when we had a babysitter, so it was like the first restful shoot she had in a while. But I remember waking up to, and this made me completely compliant post up because my my uh neighbor at the time was a shared, you know, that was divided by a curtain, but I had another gentleman next to me, and he was not compliant and tried to get up too early, and I saw blood spurting. He didn't so he got up too early and wasn't not was told, I heard him being told to apply pressure and continue, but he didn't want to listen. And so that for me, the rest the rest of the afternoon went smooth because I I didn't, I was completely compliant. But for me, after post op and to Carol's point too, like I actually felt like I had to, I had to, I had to hold myself back a little bit because I had device closure. There was some guidelines on how, you know, and that's one of the areas that I still wish they did more research, because to this day, the the biggest question I get month after month on my no-stroke blog was the post I did about exercise guidelines for p after PFO closure. And in my case, I was I was told all over the map from you can get back to doing anything the next day to you know taking two weeks to then taking, you know, from two weeks to six months really. I wanted to get back to doing more endurance training. And I initially remember feeling a spike of like energy, and maybe it was psychological that I felt like I had this behind me I was moving forward. But the other part was there was this physiological I know, and this was after all the good, you know, postdoc meds wore off. I was home and I was feeling like I hadn't felt this level of energy in such a long time, but I still, from the PT perspective in me, almost pulled the reins back on myself and said, like this device is in here, I do not want to blow it now. I want to give the the heart's tissue a chance to kind of close over this device. And and I took my time and I, you know, was able to, you know, I and I'm not sure I don't want to say this because like exactly post-op now at the time I had to have a little bit more aggressive blood thinning. So for two weeks, the other the toughest part for me is I had to learn that the Robin, you probably added in here. I had to kind of my my my belly looked like a pink cushion because I had to inject Lubinox for a while. They probably don't even do that anymore. But then I had to go on a course of warparin, and then eventually that was over after six months to a year, I was down to just going back to a baby asthma, and that's what I use today.

SPEAKER_07 1:19:20

That's a that's a good one. And it's different with device closure than noble stitch. They still precaution for most patients who don't have an issue with blood thinners, keep them on for a period of time, but we don't have the same risk of embolization on the device. So I was because I was um I was so dangerously anemic when I had the procedure because of the blood thinners. My cardiologist took me off of them four days prior and I never went back on. I don't take anything now and I don't need to. I'm I'm fully fully closed and don't I I had no clotting issues from the beginning. They think it was because of how much I fly. So now I wear the you know stockings and everything when I fly. But yeah, a really good point. A lot of people do have that piece of recovery. For me, the restrictions were only no lifting over 10 pounds and you know, be careful with activity. And I admittedly do not exercise unless somebody's chasing me. So it wasn't a problem for me. But I do have a very active work lifestyle running through airports and everything. So I was I was careful. But yeah, that but with the point you made though, David, about the energy. I literally felt the difference on the table when they were performing the procedure when they closed it was the first time I felt like I wasn't hungry for air in my whole life.

SPEAKER_05 1:20:39

That's yeah, and that's a good point because I grew up, you know, playing sports, being active, but always wondering why. Yeah, this is specific to me. This is not like this is like citizen science in a way. I always wonder for the amount of training that I always did, why it was like kind of back in the pack when it because I would train more cardio, but I couldn't, and then and then having this closure, I'm like, I wish I had this back when I was 16. You know, because like through my high school and college years, I was always I always was a little bit more winded than the person next to me. And I was like, why is that? Um, but again, this is why I wish Ralph, we had that two million or well, how much what are we looking for? A two two billion dollar so that we could two billion, might as well go for it, that we could study these things over time and look at longitudinal care. So so that's that's my story.

SPEAKER_07 1:21:40

Yeah, you you probably just never knew you were desaturating. I mean, I exactly I they told me I was out of shape and I believed it because I was out of shape. Um it it the the change on the table when they closed it and suddenly I was oxygenating my blood efficiently was the first time in my life that I I wanted to go for a walk up and down the hills in Georgetown because I wanted to experiment it with it and make sure it was real. Yeah.

SPEAKER_05 1:22:07

Yeah. And you don't know how many times you're talking to people over the years that I've heard that similar thing too.

SPEAKER_02 1:22:12

So do they do any of them through the wrists these days?

SPEAKER_07 1:22:18

Not PFO closures. They do do a lot of calf lab through the radial artery now, but PFO closures, the device wouldn't fit. And and Dr. Nobles, you can probably correct me on this. I don't think that that would be possible, at least with the current devices and and deployment, um, the stitch deployment, that that's too big for the radial artery.

SPEAKER_04 1:22:38

Yeah, all the all the devices that are used, so whether it's an umbrella or the stitch, require a larger catheter, because the physical device for the umbrellas can't be crushed down small enough to go through the radial. And the stitch is not designed to go through there because you have to have all the mechanisms that go up in there. So yeah, no, you couldn't do them radially.

SPEAKER_02 1:22:57

Okay, thanks. Just point of curiosity for me.

SPEAKER_07 1:23:02

It's a good question.

SPEAKER_02 1:23:03

Well, I spent about five weeks in the cath lab. Video cameras. Uh my heart's in good shape, but I did a lot of uh Boston Scientific Rotorblader training with video cameras.

SPEAKER_07 1:23:18

Got it.

SPEAKER_02 1:23:19

In the OR. So I was just curious. Well, I mean, this was a great discussion. I I feel like I need to let both of you busy folks go. So maybe we can have 102 and 103. I'm not kidding, but it's of course it's dependent on you got you guys uh schedule and such. But I think this is really great and beneficial. I don't want to call it an intro because it was more than an intro, but 101.

SPEAKER_07 1:23:49

I'll always make time, Ralph, for this. This is important.

SPEAKER_02 1:23:52

Likewise. Well, good, because uh you know what I'm what I'm trying to do is you know, build a bunch, it's not gonna not gonna change radically. So I hate the term evergreen, but um our discussions here on this subject will have a a pretty long shelf life, and if we keep doing them, then it'll keep being beneficial to people who are facing this. So and just reiterate before I thank you both that we'll put all the contact information, links, um anything and everything that I have in the description underneath this video. So anybody here or anybody out there in YouTube land who wants to learn more, contact Robin or David, um you can do so. And I guess with that, uh thank you, thank you, thank you to both of you, Robin, and to you, David. Thank you, Ralph. It was everyone for joining everyone for joining.

SPEAKER_00 1:24:51

I'm keeping yes. Do all you can with what you have in the time you have, in the place you are, do all you can. Do all you can