Saving a Life from Sudden Cardiac Death

What kills 1000 people a day or one person every two minutes? What kills more people annually than breast cancer, lung cancer and HIV/AIDs combined? What is one event that kills most of the people who suffer from it, but who could possibly be saved? The answer is sudden cardiac arrest (SCA).Today's show will be about the survivor of, not one but over 140 sudden cardiac arrests, and his wife. We'll learn why he has suffered so many SCAs, even though he is a relatively young, otherwise healthy man. Lastly, we'll find out what his experience has taught him and his family and what he and his wife have established so others, like he, will be survivors.

Transcript

spk_0:   0:03
Welcome

spk_1:   0:06
to Heart to Heart with Anna

spk_2:   0:08
featuring your host Anna Dworsky. Our program is a program designed to empower the CH to York and genital heart defect community. Our program may also help families who have Children who are chronically ill by bringing information and encouragement to you in order to become an advocate for your community. Now here is an ID Dworsky. According to the Sudden Cardiac Arrest Foundation, sudden Cardiac Arrest, or

spk_3:   0:42
SDA, is the leading cause of death among adults over the age of 40 in the United States and other countries In the United States alone, approximately 424,000 people of all ages experience emphasised out of hospitals, non traumatic and see a each year, more than 1000 a day and nine out of 10 victims dies. In fact, the number of people who die from S. E. A is roughly equivalent to the number of people who die from Alzheimer's disease, assault with firearms, breast cancer, cervical cancer, colorectal cancer, diabetes, HIV house fires, motor vehicle accidents, prostate cancer and suicides. Combined. SDA is a life threatening condition, but it can be treated successfully through early intervention with cardiopulmonary resuscitation CPR, defibrillation, advanced cardiac life support and mild therapeutic hypothermia. When Bryce Sanders intervene by giving CPR and using automated external defibrillators or a E d. Before E. M s survived, four out of 10 victims survived. Looking cross, a sudden cardiac arrest, beginning of the heart muscle or hypertrophic cardio myopathy, heart rhythm disorders, heart valve disorders, electrocution or destruction, and the heart rhythm due to a sudden blow to the chest. The American Heart Association reports that must send us in athletes may be attributed to cardiovascular disease. Sudden cardiac death does not only happen to old people, 54% of cardiac death a current high school students and 82% of those occur with physical exertion during competition or training. According to one study done by the National Collegiate Athletic Association, There is one S E a death per 22,903 athlete participant years among students 17 to 24 years of age participating in any sport. Prompt action by bystanders is often necessary due to the time it can take'em s. To reach someone who has suffered an FDA, bystanders can save a life by doing CPR or using an a e d to shock a person's heart back into rhythm. Sudden cardiac arrest killed 1000 people a day or one person every two minutes. Not all of these deaths could be attributed to being overweight, having a congenital heart problem or even an acquired heart problem. Some of the people who suffer S E. A is for people who have faulty genes. Today show Saving a Life from sudden cardiac death will discuss how one survivor has lived to tell his story. Thanks to the action of his quick thinking wife. Today's guests are banning Miranda Wise bucks on July 4th 2010. Animal Randa Wise book were married in New Albany, Ohio, during the morning of July 18th 6 hours after returning from their honeymoon, then suffered his first episode of sudden cardiac arrest. Miranda saved his life, then spent five days in a coma in June of 2011 Miranda and then welcome to their son, McAbee, into the world. A four year diagnostic period followed through 2013. Ben suffered over 100 and 44 episodes of sudden cardiac arrest. In 2013. Researchers discovered a genetic cause for Ben's disease in a drug treatment, followed, then inherited the mutation from his mom, who died from sudden cardiac death in 2000 and four. McAbee tested negative for the disease In 2013 Miranda and Ban co founded the Heart Help Foundation, www dot heart help foundation dot org's to give others the life saving genetic and medical care they had received. Miranda and then spend considerable time flying across the country, raising funds for their foundation. Welcome to Heart to Heart with Andr, Miranda, for Having Me. Well, I'm so excited to have you here, as some people may remember. Ben was on my show before, but this is my first time to meet you. Miranda. Great to be here. Well, I cannot imagine coming back from my honeymoon and then having to call 911 because my husband was a conscious. Can you walk us through what happened?

spk_5:   4:48
Certainly. Well, as you mentioned, we had just returned home from our honeymoon, and it was eight o'clock in the morning. I got dressed to go to the gym. Why Ben was still in bed and I walked downstairs, made a cup of coffee. Today it occurred to me that what was I am such a big rush for. I mean, you know, this is the first day of my very life home from our honeymoon. And I thought, You know what, Miranda? The gentleman rate Go up here, your husband for extra 10 minutes, and I walked upstairs, and then at that point, I looked it up and he was sitting up in bed and he had a black bear in his hand and he was texting a client, and he looked at me and suddenly did I roll back into his head. Any gas progress and collapse back on the bed, shouting his name and completely unresponsive. So I quickly grab the phone that was in his hand and dialed 911 and that point. I have no idea what was going on. And the paramedics were at our house very, very quickly. They came in. They took that off the bed, eh? Used in external defibrillator to shock his heart back into rhythm. They intubated him on a bedroom floor and rushed into hospital. And as you mentioned before, he was in a coma and receiving hypothermic treatment and oh, that.

spk_3:   6:16
Wow, that's just so much to go through here. You are getting ready to go to the gym. Imagine if you had left

spk_5:   6:22
me. I probably have played back that the second decision a 1,000,000 times in my brain and lovely. Luckily, I didn't go and the gym weight and I figured we could just Benedict for 10 minutes. So I'm definitely grateful for that decision.

spk_3:   6:40
Yes, and that you were so quick thinking to grab the BlackBerry and to go ahead and dial 911 That was really, really brilliant. So you never did CPR. You were lucky enough that M s got there so quickly that you didn't feel that you needed to do that. Or were you just totally in shock?

spk_5:   6:56
I think I was with a combination of the two. I mean, I was completely in shock because here I am, you know, I really would. There's my perfectly healthy husband and Mrs happened, So I think grabbing the phone and dial 911 was just it was a reflex. Shouldn't almost autopilot. And then I watched when we were very, very fortunate that the local first responders have been responding to a false alarm in our neighborhood, said they were one at our house. I was still on the phone with the normal one dispatcher when they were already in our driveway so they wouldn't hear so quickly. And luckily there was from him gasping for breath. There was enough oxygen in his long to make it for them to come and be able to stop resuscitating

spk_3:   7:42
him. Wow, I just can't even imagine going through that. But you went through even more than that, because it's not uncommon when a person has a sudden cardiac arrest or when they have heart surgery to suffer some complications or to have to have extraordinary efforts made to save their life. And you mentioned that he had to be put in a hypothermic coma. Can you tell me what it was like to visit her husband in the hospital, who seemed so vital and otherwise healthy, and then to have to see him in that condition?

spk_5:   8:16
It's simultaneously terrifying and surreal. I mean, I went from being a newlywed that you're so happy and not a care in the world choose a very distinct possibility of becoming a widow. No, it's terrifying and surreal to seem at that point My husband, who very healthy young guy laying in the hospital in a coma. It was so surreal because you look around the I c u and you see older people you see p move. You won't see this young, vibrant guy sitting there who, honestly, hemline was in the Caribbean. So he was still pretty pan, so he looked extraordinary. We help me laying there, except for the fact that he was in a coma and had wires coming out of every direction.

spk_3:   9:04
Yeah, yeah, that must have been so unbelievably hard. Now, are you in the medical field? As a professional,

spk_5:   9:11
I am not on it has been This journey with that has been an education in the medical field. My in laws are both positions, which has been a great resource plus, But with this situation with Ben, it really is true. The Addison knowledge is power, and I have educated myself as well that possibly can on everything having to do with cardiovascular health, genetics and cardiac arrest. You name it just to electrophysiology how to read an e c g all of these things just so that I can be better equipped to ask questions of medical professionals to make sure that I have been getting the very best dream. Impossible.

spk_3:   9:56
Right? And you were even in the hospital while your husband experienced sepsis, which is a horrible complication that can occur. Can you tell us about that?

spk_5:   10:07
That was absolutely most terrifying, I think experience ever because he was you just you don't know what he can come on so quickly like it did with Ben, and I literally watched it. Come on, all the sudden he was already in a common intubated, but suddenly he got a very high fever and went being as okay as you can be in a coma to multi organ failure within a matter of analogue. So probably the most terrifying. And it is one of the things that is so hard because it is completely out of your control. And it's pretty much out of the control of doctors as well. So you can take them seemingly help Theo healthy patient and taken become septic. And it's just a matter of chance of how you know who's who's gonna survive sepsis. And she wasn't

spk_3:   10:57
So what did they did, too? They administer a bunch of antibiotics are. How were they able to help his body to come out of that?

spk_5:   11:05
They administered broad spectrum antibiotics because at that point they weren't sure what exactly was causing the sepsis. But in addition to that, his blood pressure became 42/10 so they had to give him three pressers, which for a nooner doesn't militar Presser is It's almost artificial adrenaline to push your blood pressure up and to maintain a stable blood pressure. But three processors, as I was told then, the maximum that they can give someone to maintain life. So but in hand, we're at three. It was sort of fingers crossed and thankfully they work.

spk_3:   11:43
Wow! Wow. So you really have had quite an education on the job training, wouldn't you say?

spk_5:   11:49
Absolutely, absolutely. And I am very fortunate. Also have a best friend who's in I c u nurse so early in the morning from commenting.

spk_3:   11:59
Wow, that's wonderful that you have that kind of support between your in laws and a dear friend and your husband. He's a smart man when he's on a country, if you can talk to me, Oh, how did to you? And I'm sure that you have learned so much together. And now you've even had to concern About what? What about my son? Will he have this as well? Can you tell us about the journey that you went through to make sure that McAbee wasn't also affected by this faulty gene?

spk_5:   12:26
Absolutely. When all this first occurred with Ben and even when we had our son, it wasn't automatically evidence that it waas genetic because the first round of testing problem no markers didn't yield any positive results. So once they were able to determine what a genetic mutation, itwas and that our son would have a 50 50 chance of having this. It's the most terrifying thing as a parent, because you've got this beautiful, healthy infant that you now have to find out whether or not they have a deadly mutation. And so we worked with the researchers at Ohio State University of the Davis hurting along institute, and they were able to come to our house. They made it as easy for us. It's possible they were a little come to our house. They use myself as the control because they knew that the likelihood of having this is slim to none. And then you bend to be able to test off of bends to see if our son had it. And thankfully he does not have it. Then that was called the best news of any pair even get you. Any parent can get that your son is perfectly healthy.

spk_3:   13:40
Did they have to take blood from A to B to test it? They did,

spk_5:   13:44
and it's very easy process. It was a finger prick for a blood. So which is nice, especially, You know, he was an infant, so it's nice not to have too much pain here. It was a small amount of blood, and they tested him. And then we previously when he was first born in, hadn't have a G just to rule out any arrhythmia issues which was perfectly normal. And then we have this genetic testing.

spk_3:   14:13
Well, that doesn't sound like that was too bad. And what a huge relief it must have been for both you and Ben when the genetic testing and then also the e k g showed that he was perfectly fine. Absolutely. Well, thank you so much for sharing all of this information. Miranda. I can't believe it. but it's already time to go to a commercial break. But don't leave because coming up next, we'll talk to Ben about what made him decide to start his own organization to help others with his rare genetic mutation when we returned to heart to heart with Donna

spk_1:   14:45
Anna Dworsky has spoken around the world at congenital heart defect events, and she is available as a key note or guest speaker for your event. Go to heart to heart with anna dot com to learn more about booking Anna for your event. You can also find out more about the radio program. Keep up to date with CHD Resource Is and information about advocacy groups as well as read Ana's Weakly plug. Anna wants you to stay well connected and participate in the CHD community. Visit Heart to Heart with anna dot

spk_2:   15:16
com Today, back to

spk_3:   15:18
our show Hart to Hart Madonna, a show for the congenital heart defect community. There. Topic is saving a life from sudden cardiac death, and today's guests abandon Miranda Wise Buck. We just finished talking with Miranda about her experience with her husband, what she had to go through which her husband and his sudden cardiac arrest and how she went through the testing with her own son to make sure he was okay. It was really great. First segment that will turn our attention to Miranda has been been. So I want to welcome you back to heart, to heart with Anna Ben. My longtime listeners of the show may remember Ben because he was in our fifth episode, which dealt with the role of genetics and gentle heart defect. So I'm so glad you could come back on the show. Ben.

spk_4:   15:59
Thank you. And it's great to be here. And you do wonderful work. We love your show.

spk_3:   16:04
Well, thank you. In your bio, you stated that you had over 100 and 40 episodes. A sudden cardiac arrest that is just amazing. Can you tell us what it is that your genetic mutation is so that it causes such an incredibly high number of sudden cardiac arrest without actually killing you?

spk_4:   16:21
The genetic mutation regulates the slow of potassium across my heart cells to give a background for people who are listening. Everyone's heart has cells that beat, and the beating is caused by chemicals that flow in and out of the heart cell at a regular interval. There's different chemicals, including potassium. My heart cell seems to naturally open the channels bleeding. Potassium on the genetic variant limitation prevents the channel from closing so essentially on leaking potassium and that causes problems.

spk_3:   17:00
Okay. Wow. Apparently with the first round of genetic testing you did that wasn't picked up. So how was that? They were able to determine you actually did have a genetic mutation

spk_4:   17:12
in 2004. As you mentioned, my mom died of this. So they tested if the blood of her twin brother turns out there was a match between what killed my mom and what I have survived. So they were able to precisely pinpoint using modern technology, which is absolutely phenomenal. We're so lucky to live in the age that we have. And scientists and researchers and doctors are so brilliant that they were able to identify exactly out of three billion base pairs were the genetic mutation lives on the double helix.

spk_3:   17:48
Wow. It is amazing what we can do with science and technology today that wasn't available just 20 or 25 years ago. It seems to me that you are unbelievably lucky that you had scientists who were able to pinpoint what it was that was causing the problem? Absolutely. And so is your mother's twin. Is your uncle still alive?

spk_4:   18:10
Fortunately, he is alive. We have the genetic mutation. Science is so complicated, it takes more than a genetic mutation to cause any disease, let alone this killing disease. So the three factors in any heart disease three legs of the stool, for example. It's genetics, behavioral and environmental within the genetic realm, 55% of all hearts of these caused by genetics. My uncle, fortunately, somehow does not have some other factors that are causing it. And that's exactly what the researchers are now doing. Taking the next step. Find out why my mom died at 54 years old, why I was struck down a 37 years old and why my uncle, who has a similar mutation, does not have the disease. They have identified hundreds of people in Europe now from my survival with my genetic disease, and they're testing these individuals to learn more about how to diagnose this type of disease in other people.

spk_3:   19:12
Wow, it's just fascinating to me. I think it's such a miracle that you're alive. Ben. What do you attribute to the fact that you're still with us?

spk_4:   19:20
I'm very, very lucky. Very, very blessed. First of all, of course, my wife was president. Second of all, I've been told that because I was in very good shape, my body could survive the trauma. I've tried to maintain a good sense of humor, have supportive friends and family. Sometimes I prayed I have had access to the best doctors. The incredible work Cardiologists team, including Dr Silberman in Ohio State researchers like Peter More, Amy Sturm, a genetic counselor. Row wife, electricity geologists Ralph Agostini. Another electric physiologists, Stephen Fowler, out of N. Y. U in New York. Extraordinary Surgeon and Sylvia Priority Hu is a world leading genetic researcher and cardiologists. All of these people have come together. Other factors include likely our diligence to bring the best doctors together. Nurses, researchers We just didn't take no while lying in the hospital suffering and surviving surgeries, I maintain mantra as one of my mantra is voice to drive me to the moon. It was a song I sang myself that kept me from focusing on the pain, a willpower never, ever, ever give up on acceptance that that might occur to me. But I had a peace of mind that I build a good life and that longevity is not promised to any of us. I'm in a determination to make sure that my separate and meaning to help others that I had a purpose and that purpose ended up becoming the heart Hope Foundation. And finally, it's the factor that has been extremely helpful that researchers now has discovered a drug that is an orphan drug use from multiple sclerosis, which I take for heart disease, which has helped save my life and call my heart. So all these factors in an extraordinary just been extraordinary? No, it's more, but not always

spk_3:   21:08
find Jordan. No, I just think that's amazing to the orphan drug that helps people with M s and how that's been able to help you. That's just amazing. Well, I think that you were brought here for a purpose, and it seems to me that what you have done with a heart Hope Foundation is a big part of why you're still here. You still have work to do. We're not ready to lose you yet been so. I'm so glad she were able to bring together such a team, really? So

spk_4:   21:43
that Dr Peter Moeller is one of these geniuses. And Dr Mohler heads up the Dave's Heart Lung Research Institute and came to my house and sat me on the couch, said, Then we think we can fix you. I cried because I didn't understand it. So I asked him what happens to people without access to technology, what happens to people who don't have access to the people who don't have resources like we do to fly over the country? And frankly, he said, they die. So my wife and I decided that money should not be a barrier for people to have access to technology. And that's where we started the hard, cold foundation, which essentially does two things. It provides people with some money to access this genetic technology, and the second thing it does on the back end, we fund research in Michael Grant form. So that genius, the next Einstein who is sitting and she is waiting for funding on this next Einstein has the lifesaving idea. She could get money to help bring that idea to the world help save other people,

spk_3:   22:43
and we're gonna talk about that a little bit more In our last segment, we need to go to a quick commercial break. But then you are so inspiring, and I've really enjoyed listening to your story. I can't wait to hear what else you have to say. We'll be back in just a moment.

spk_1:   22:55
Anna Dworsky has spoken around the world at congenital heart defect events, and she is available as a key note or guest speaker for your event. Go to heart to heart with anna dot com to learn more about booking Anna for your event. You can also find out more about the radio program. Keep up to date with CHD. Resource is at information about advocacy groups as well as read Ana's Weakly plug. Anna wants you to stay well connected and participate in the C H D community. Visit Heart to Heart with anna

spk_2:   23:26
dot com Today Welcome back to our

spk_3:   23:29
show Heart to Heart with Anna, a show for the congenital heart defect community. Today we are talking with Ben and Miranda wise book about the importance of genetic testing and who should be tested, and I just want to thank them so much for coming on the show. We have a chance to save a life with the show today. I mean, what Ben has been through is miraculously, but what he's doing with the heart Hope Foundation is going to enable other people who suffer from the same genetic mutation that he does to get some relief. And I just think that's really amazing in a tremendous gift to humanity. So we're all in the studio together. Ben and Miranda were all together now, and I want to hear what is going on with the Heart Hope Foundation. It's been a year since I talked to you. So Ben, what's going on?

spk_4:   24:13
The Heart foundation again? Anna, Thanks for profiling at www dot heart Whole Foundation. Got or we have had an exceptional year. We've gone from zero Now we have nearly 3000 Twitter followers, nearly 1600 Facebook crawlers. We have a website that gets nearly 300 hits per week with educated in 2014. Over 60,000 people off this disease and your show has been fundamental to that. And we can't thank you enough. We have raised close to $100,000. 20 families with the risk of the disease have been identified. We have ongoing partnerships with Nationwide Children's Hospital, Dave's Heart. Long We have world class medical advisory board and order directors. Dedicated volunteers. Hundreds of people of Europe have been identified with this. We have impact in seven or eight states, multiple countries who had a world class expert from Israel. Dr. Sami just can come to call Ms Ohio. We started a fellowship to sponsor undergraduates research student. It's less of what we've been doing frankly, Anna. And it's the fact that the time of genetic disease and prevention has come even this morning. Anna in The New York Times front page article about how everybody everybody should have their Tina tested in the future. What we're looking to do in 2015 our goals. We want to double our growth. We won't have impact in 20 states impacting six foreign countries, but we need your support. We need the support of your listeners. We want to raise about $20,000. We want to give 100 tests, which is approximately $40,000 testing. We partner with laboratories across the country including Jean Jaques, a new laboratory of Harvard University. We want to empower genetic counselors who are mostly women, and actually 80% of genetic counselors are women. And these women are on the front lines of helping people identify themselves and get over the fear of finding out. And it really is here finding out that they were born or something. Let me tell you, Anna, they asked me if I wanted to find out everything about my genetics risk for cancer risk for this. And I have that impulsive fear. And I said, Yes, I do want to know. And it turned out okay, so I would give the advice to your listeners, get beyond the fear that you didn't an excessive If you need money to help pay for this genetic testing, come the heart foundation. We can help you. We're very excited to be able to help people and to have what we've gone through meaningful for other people.

spk_3:   26:38
So are the people who are most at risk for what you've gone through. People who have other family members who have died from sudden cardiac death.

spk_4:   26:47
Absolutely. And it's more than a sudden cardiac death. If you have a family history and and if your listeners have a family history with diabetes, lung disease, heart disease in many forms not just sudden cardiac arrest but sclerosis of the atrium of septal defects. If you have a history than we recommend, you go and get tested. The process is simple. You go. You're doctor. You asked to be tested. They either prove it or not. They'll hook you up with a genetic counselor. They keep some blood, they run it to a lab and then you have the information and we believe family that more information is power. And if you need money, insurance companies don't yet cover all this test. If you need money, the heart whole foundation will be there. I understand The Heart Foundation is the only organization in the country, If not beyond that is subsidizing these genetic tests, and we are honored to do it.

spk_3:   27:38
I just think it's fascinating how much we've learned just within the last 5 to 10 years regarding genetics. And I'm sure you remember when you were on the show in 2000 and 13 that we had a leading geneticist on the show. We actually had to geneticists. But Dr Woody Benson was one of our guests, and he is amazing with the research that he has done. Dr. Angela Shirley was also on the show, and I love how she was able to shed light on what's new in genetic trampling. I recommend anybody who is interested in genetics to go back and listen to Episode five. It's in our archives. They were both fascinating with the way they talked about what's new in genetics. Who needs genetic testing? How to get the genetic testing. And it's scary if your insurance denies you the ability to get that testing. It's nice to know that there is a foundation out there who is willing to help with that, and especially if you do have family members who have serious problems that jeopardizes their quality of life.

spk_4:   28:43
Well, yes, Anna and the real hope for me and the real hope for my family. But the real hope for your listeners and for you is the individualized medicine component. They have literally found a drug town pound used for different disease and now treat my heart. That's a hope for anybody and going forward. Given enough time, given enough money on extending this out to insanity. It is absolutely possible to prevent these diseases forever. And as we have done in my family, our son does not have it. We're creating more Children through IVF. That's not happy genetic mutation that is fundamentally possible with individualized medicine. And that's the future. The federal government, unfortunately, has reduced funding through the N I H by 11% last year. We need funding back. We need more apartment needle in car. Researchers immediately power doctors on every individual listening to this show and my voice should please go to a doctor and say, Are we at risk for genetic diseases? That's what we believe. That's what we recommend and thank you for profiling this and raising such a great awareness. And you are a blessing when you are remarkable.

spk_3:   29:51
Well, thank you so much better. Thank you, Miranda. And unfortunately, that concludes today's episode. We will have links to Ben's website on the heart to heart within a website in the bio section. Thank you for listening today. Please come back next week on Tuesday at noon Eastern time. Until then, please find him like us on Facebook and like Ben's pages to check out our website Heart to Heart with anna dot com and our Cafe Press boutique. Follow our radio show and remember, my friends, you are not alone.

spk_0:   30:20
Thank

spk_1:   30:26
you again for joining us this week. We hope you've been inspired

spk_2:   30:29
and empowered to become an advocate for the congenital heart defect community. Heart to Heart With Anna with your host, Anna Gorsky can be heard every Tuesday at 12 noon Eastern time. We'll talk again next week.