Seizing the Day with Jackie Renfrow!

How does a wife, mother and grandmother seize the day when her family has a terrible secret? What secret was in the genes of her, her children and mother that could cause sudden death? How does Jackie help her granddaughters to seize the day?

Transcript

spk_0:   0:03
Welcome

spk_1:   0:06
to Heart to Heart with Anna, featuring your host Anna Dworsky. Our program is a program designed to empower the CH D or congenital 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 parking Heart Within our theme this season, it's carpet diem. Seize the day and we have a great show today.

spk_2:   0:44
The heart is a complicated organ, perhaps the most complicated organ in our body. Except for the brain like the brain, the heart has an electrical system, and when something goes haywire with that system, bad things can happen. Everyone has heard of athletes, even star athletes suddenly falling down while running into everyone's core. The person is seemingly extremely healthy, individual passing away according to the sad or sudden arrhythmia death syndrome website. Each year in the United States, 350,000 Americans die suddenly and unexpectedly due to cardiac arrhythmias. Almost 4000 of them are young people under age 35 10 to 12% of sudden infant death syndrome, or SIDS, cases are due to long to t syndrome long Q T syndrome are L. Q T s is now known to be three times more common in the United States than childhood leukemia. One in 200,000 high school athletes in the United States will die suddenly must without any prior symptoms. We end. The heart community have been working hard to bring awareness to congenital heart defect, the number one birth defect. But electrical problems in the heart must also be talked about not just structural problems in the heart or else we missed the opportunity to save thousands of lives. Today's show is seizing the day with Jackie Renfro. Jackie Renfro is a mother, a wife and a grandmother who works full time. Members of her family had been diagnosed with epilepsy. On April 15th 2000 Jackie received a phone call that her son, Jimmy was having a seizure. Sadly, Jimmy didn't survive the seizure. His 17 year old daughter was only two years old when he died. Jackie worried that there was something wrong with her daughter, Christie, too, so she asked the doctors to test her. Nothing was found, and Christy became pregnant with her daughter, Jessica, who was born November 23rd 2000 and one. After giving birth, Christie began having seizures. On July 25th 2002 Christie was rushed to the hospital having a seizure. She didn't survive and passed away at the young age of 21 Jessica was only eight months old. But now she is 14 years old. In May 2000 to Jackie's mother was rushed to the hospital due to fainting spells and rapid heartbeat. Finally, at the age of 73 doctors discovered the family had an inherited heart condition known as long to T syndrome. And today we have Jackie on the show with us. Welcome to heart to heart with Anna. Jackie.

spk_3:   3:22
Hi, Anna. Thank you so much for having me today.

spk_2:   3:26
Well, I'm delighted to have you on the show, Jaggi. And I'm so, so sorry for the loss of your two precious Children. I just can't even imagine losing two Children to an unknown to you at that time. Heart defect. It must have been so heartbreaking.

spk_3:   3:41
Yes, it's very tragic. It forever changes your life is something that you never get over. You just learned.

spk_2:   3:47
Still win right But despite that, you agreed to come on this show and our theme this season is Seize the day and I'm wondering, how can you seize the day after suffering so many tragic losses?

spk_3:   4:01
Well, I do believe that I was left here on this Earth for a reason, and it was to help raise awareness to save other people's lives. I was not aware that having a seizure was connected to the heart and thank heavens and I do have two grandchildren and a wonderful husband and my mom and my siblings and a great job. So I'm very thankful to have that. And I just have to make the most out of every day.

spk_2:   4:27
Absolutely. And I like what you said about the fact that you feel that you have a purpose in this life. And maybe it's to help other families who have long Q T syndrome or who have some kind of problem that doctors aren't identifying properly. How did you feel when you discover through your mother that your Children most likely also had long cuties syndrome, and that's what caused them to die?

spk_3:   4:52
Well, as you can imagine, I was very sad because after living with this for 43 years. I find 10 months after my daughter had passed away and 2.5 years after my son passed away, we find the missing piece to the puzzle,

spk_2:   5:07
and it

spk_3:   5:07
was the heart. Unfortunately, there wasn't a lot of awareness. Okay, maybe no awareness. I had never heard of a defibrillator before and you

spk_2:   5:16
didn't

spk_3:   5:17
hear a lot about CPR. So the heart just never occurred to me that that would cause a seizure and always seems that when someone had a seizure, it was related to the brain.

spk_2:   5:28
Right? Right, Definitely. That's what I would think, except that we do here about athletes to all of a sudden, passed away very quickly. And that's what happens with Christy and Jimmy, right?

spk_3:   5:40
That's correct. They were both in their sleep and with the type of long Q t. They're currently doing research on my blood at this time, but they're thinking along the lines that we have Type two long Q T, and this commonly will kill you in your sleep, experiencing a seizure that, unfortunately, the saddest part of when I found out what we had was that I could not bring my kids back and they could have been treated. It wasn't like a terminal cancer or a tragic car accident where there was absolutely nothing you could do. It could have been prevented.

spk_2:   6:14
It Absolutely. You're lucky with your mom that she actually exhibited symptoms. It doesn't sound to me like either Chrissy or Jimmy actually had any symptoms. Is that true?

spk_3:   6:26
No, They both had symptoms. Christie Christie had more symptoms. And it seems the female's probably do because we have so many different changes in our body with puberty, minstrel cycles, and then childbirth takes a big toll on your body. It changes your electrolytes that those all your nutritional intake off. So you're more prone to have an episode after having a child, not while you're pregnant, but after.

spk_2:   6:57
So what was very worried that maybe some of our listeners who are questioning whether or not there's something wrong with someone in their family Can you tell us about the symptoms of the red flags that now you know? Oh, my goodness. That is associated with long queue to syndrome.

spk_3:   7:14
Well, we always had experienced rapid heartbeat. We thought we all have bad nerves, but we would have seizures if we got excited about something years ago, probably back in the sixties. My mom, she had a phone in her room and we would have to cover the phone with pillows because when the phone would ring, it was startled her in. Anything that startles you will calls youto have a seizure. So it's very important to try not to go up behind someone and even play peekaboo something with a young child, because it has been known to kill Children before. So, like I was saying, back in the sixties, we would have to cover the phone with pillows. So if someone did call, then it would muffle the sound and it wouldn't cause Mom to have a seizure.

spk_2:   7:59
Wow. Okay, so you all had the seizure fairly regular late, and I guess during the seizure, with the heartbeat extra fast during the seizure,

spk_3:   8:10
Yes, it usually did. But of course we weren't aware of that. But anything that would start a less my first seizure actually was I was running down the street. I was upset. There was an argument going on in our home, you know, just siblings fighting, and I was running to a neighbor's home, and I was running as fast as I could. I was only six years old and

spk_1:   8:30
I

spk_3:   8:30
ran into a Rose bush having a seizure.

spk_2:   8:33
I'm like, that must have been so frightening for you.

spk_3:   8:37
Well, it was very frightening. And of course, back then we were automatically labeled epileptics. And then I was immediately put on medication because my mom and my sister are both were on the medication for seizures.

spk_2:   8:52
Well, and we're Christie and Jimmy also on seizure medication.

spk_3:   8:57
Yes, they were that Jimmy and Chrissy were on a different type of seizure medication. As I wasa, I was treated with Dilantin and being a barber tall. Most of my family was treated with Tine Landon. We have found some research recently stating that that could possibly help long Q T. It's in the research study right now that they're thinking that that conserve as a beta blocker as well. But Jimmy and Christy were on tegra tall, which absolutely did nothing for the heart.

spk_2:   9:29
Oh, do you also have long Q T syndrome? Jackie?

spk_3:   9:34
Yes, I do. Yes, I have a long Q T and both my grandchildren have it, so I have a very strong gene.

spk_2:   9:42
E.

spk_3:   9:44
I was the youngest one of my mother's four. I think the more Children mom had, the stronger the gene had become.

spk_2:   9:52
Your siblings also have long Q T syndrome.

spk_3:   9:55
Yes, all of them but one. I have three siblings and my brother and my sister have it. And then I have one sister that does not have it.

spk_2:   10:05
This is just amazing. And do your siblings have Children as well?

spk_3:   10:09
Yes, they dio my one sister, her daughter have long Q T, and we're not really sure about a person, Has it? Or not that, however, thankfully, her grandson does not have it.

spk_2:   10:21
Wow, Has your entire family been tested? Not

spk_3:   10:25
to the extent I would like it. I would like to see all of our family's blood taken as some extensive research on it, because the one sister they done e k. G. Is honor. I'm really not convinced that she doesn't have it with long to t. Also, I would like to point out one other very important thing. Your medication. You take contributor it. You can have a recessive gene for long Q T, and you can take just say for instance, a been a drill, which is an anti histamine, and it will speed up your heart rate, and it can cause you to go into cardiac arrest. So you also have to be very cautious of the medication that you're taking

spk_2:   11:05
over the counter medication

spk_3:   11:07
yet all medications, even antibiotics.

spk_2:   11:11
Wow, that's really scary to think that you might have a headache and you might take something for the headache. Or you might feel congested and take something for your congestion and cause yourself to have an episode that does anyone in your family have a pacemaker?

spk_3:   11:27
All of us. We all have defibrillators, internal cardiac device,

spk_2:   11:32
which would

spk_3:   11:32
be better known as an I. C D and then has a pacemaker. It records all your activity of your heart, and it also has the fibula later. So if you do start going into cardiac arrest, it will revive you.

spk_2:   11:47
Wow, It's so wonderful to know, though, that your family is now so much better protected. Had Christy and Jimmy had an I C. D. They might still be with us today.

spk_3:   11:59
Exactly. Yes, they would have been here today. It's very treatable. It could be very dangerous of course, even with the device, if you're driving down the street or something. But yes, it is very preventable, cannot get rid of it. But you can treat it,

spk_2:   12:14
and that is the perfect note for us to get to a quick commercial break. This is something that can be treated I, like, ended on a positive note. Don't leave yet listeners, because coming up next, we're going to talk to Jackie about what obstacle she faced is seizing today and how her granddaughter's aren't using the day after we come back from this short commercial break,

spk_1:   12:34
Dworsky has written several books to empower the congenital heart Defect, or CHD community. These books could be found at amazon dot com or at our website www dot baby hearts press dot com. Her best seller is The Heart of a Mother, an anthology of stories written by women for women in the CHD community and as other books. My brother needs an operation, the Heart of a Father and hypoplastic left heart syndrome. A handbook for parents will help you understand that you are not alone. Visit baby hearts press dot com to find out more

spk_2:   13:09
about our show heart to heart with an a show for the congenital heart defect community Today Show is seizing today with Jackie Renfro. Jackie is a wife, a mother and grandmother, and she has the most incredible family history I have ever heard of People with long Q T syndrome. There is no doubt to me that is a genetic problem just in talking to Jackie Renfro. I've never heard so many people to be affected by it. But I'm so inspired by Jackie that her family has now discovered the problem that was causing them to lose their loved ones so early. And now here she is on the show promoting awareness. And Jackie, you just really startled. May I knew a little bit from your bio, but I had no idea how prevalent long Q T syndrome was in your family.

spk_3:   13:56
Well, yes, Anna, and we're actually tracking this back to the 19 thirties, when my mother was only two years old. Her father was having suffocating spells. They would call him fits, of course, back then, and my grandma woke up to find him deceased also, and he had passed away in the evening, same way as my

spk_2:   14:17
Children. Oh, my God, this is something that generations of your family has suffered with.

spk_3:   14:25
Oh, yeah, yes, and it's went on for years and years. It was just a part of our life, our whole family having seizures. It was a scary part. It was nothing for us to call each other. Say Jimmy had a seizure. Christie had a seizure, Mom, and a seizure just went on and on.

spk_2:   14:42
Well, I'm glad that you're here to spread some awareness and talking about some of the ways that we can now prevent these sudden death occurrences from happening in your family. This is just amazing that where there are drugs that can help there is the I. C. D or implantable cardiac device that can help prevent a sudden cardiac death event from happening. Your family has suffered a lot of loss, especially your two granddaughters losing parents so early in their lives. Can you tell me what it is that your family does to help those girls to seize the day?

spk_3:   15:18
I've just been very involved in their lives. I've tried, always share memories about their parents and what their parents were like because, of course, Alexis was too, and Jessica was eight months of, so they have no recollection of their parents. I try to keep Jimmy and Chrissy's memory alive, showing him pictures showing a video, whatever I can do. Jessica's only 14 but Alexis is really become real curious of her dad.

spk_2:   15:46
Now in 17

spk_3:   15:47
years old, she's getting ready to graduate and go on to college. Ironically, Alexis was very involved with the teller guard, and she was out there performing just fine. And she had her defibrillator and her pacemaker, and she didn't miss a beat.

spk_2:   16:05
Uh, they've been able to have a relatively normal childhood growing up.

spk_3:   16:11
They have because it was caught so early on. Alexis was five years old when my mom was rushed to the hospital. Jessica was just a baby. She was 18 months old, so it wasn't actually discovered in Jessica Toe. About five with the E. K. G and Lexus began being treated at five with beta blockers. However, she did not get hurt fibula later until she was 13 years old and Alexis had experienced to seizures and was rushed to Riley Hospital in Indianapolis, Riley's Children Hospital, and that's where she had even coded and they had to revive Alexis, and then they could in a defibrillator the next day.

spk_2:   16:52
Wow. So they were hopeful that they could treat her with the medication. But just having the medication on board lessons in that

spk_3:   17:01
correct? Yes, once they hit a certain age, the medication just It's great and it helps them so much. But they really need that little extra boot with the pacemaker defibrillator.

spk_2:   17:13
That's really good to know. So anybody who has a family history of sudden cardiac death, they should have their family tested, including their Children or grandchildren, their siblings. And just to be aware that while medication may help for a certain period of time that having an implantable cardiac device, it might be what actually saves their lives

spk_3:   17:34
exactly. And if nothing else, this device will record everything that's going on with your heart. So you will know if your heart's doing things that it shouldn't be doing that maybe your beta blockers need increase or decrease

spk_2:   17:48
off of

spk_3:   17:49
what recordings are. We actually have a transmitter that transmits to the hospitals where our doctors are, and then they can read it and we go see electro physiologist. It's not just cardiologists would be in electrical heart. Doctor,

spk_2:   18:05
right, And anybody who has arrhythmias that are a serious nature would see an electro physiologist. That's a word for a lot of people. Doesn't twist President. Well, it can't be. It's funny because I did a show with Dr Wilson Lamp, and as I was writing his bio for the show, I thought Electro physiologist, It's not really a word and I went and looked on the Internet. I couldn't find it, but I do. It was a word because I wrote back to the doctor and I said, This is a real word or am I making something up?

spk_3:   18:40
People kind of look at me every time I say that. Like, how do you even remember that word? But it's embedded in my head. Everybody that with the heart arrhythmia, I would advise him to see an electro physiologist,

spk_2:   18:52
right. That electric physiologist is somebody who is cardiology trained and on help of that is trained to specialize in the electrical system of the heart. And there is a lot to know about the electrical system of the heart. It's not something very simple. It takes a lot of years of study. I think to be a brilliant is like Dr Lam was If you haven't listened to his show, you really should listen to his show. Jackie, He just blue. And I'm so impressed with how much we have learned about the heart because, like you said just 20 years ago, we really didn't know that much.

spk_3:   19:30
Yes, I didn't even know what a defibrillator was When my Children passed away. I had no clue. When you are watching a show, you know, totally shock of eyes or stand back, they're going to get a shock. So yeah, and you're seeing more and more defibrillators everywhere. And they should be out there just like fire extinguishers

spk_2:   19:49
in the airport. Now you see, it says E e g. And it has a symbol of the heart. So people see them. I want to be trained on how to use one, because I've seen those boxes. But if I needed to access one real quickly, I'm not sure I would know what to Dio. Although I do think there are directions there. But that's not the time. You want to stop in every direction you want to know, actually, And

spk_3:   20:11
a defibrillator will talk to you once you open the lid or you press a button, whichever type you have. You know the cardiac science. You lift up the lid when you get the pads out and immediately starts talking to you and instructing you exactly what to do so that people don't need to be afraid of a defibrillator. They're really user friendly.

spk_2:   20:31
Wow, that is so good to know. Well, we do need to take another put commercial break. Don't leave yet. Everyone will. We come back from the commercial will be happy to Jackie about what advice she has other families who have an inherited congenital heart defect about how they can seize the day and also how they could be advocates for themselves and their families. We'll be right back.

spk_1:   20:53
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 Blawg. Anna wants you to stay well connected and participate in the C H D community. Visit Heart to Heart with anna dot com Today, go back to

spk_2:   21:26
our show Heart to Heart with Anna, A show for the congenital heart defect community. Today's show is using today with Jackie Renfro. Jackie is an amazing survivor. She has discovered that she and her family have an inherent a congenital heart defect known as long Q T syndrome. And she has just been teaching me all about long Q T syndrome. And we've been talking about electro physiologist and 80 G's. And it's good to know that you don't need to be afraid If you get your hands on an e e d Do it. It will most likely talk you through what the steps are that you need to take, and you, too, can save a life. It's just amazing to me how much I've learned about long Q T syndrome and talking with you today. Jackie's. We only have a couple minutes with Jackie, but I really want to know what advice you have for families who discover they haven't inherited heart defect like what you have. How is it that they can learn about something this devastating and still used today? Still make the most of every day they have? What advice do you have?

spk_3:   22:27
I just appreciate every day you have with your family, your Children, and if you have something that's treatable, be your own advocate. If a doctor tells you something, do your own research and you don't have to necessarily just see one doctor. And also I would like to add to that Anna. But if someone has a child that's been sports the exams that they give the Children, they're not going to detect the heart condition. There's several hospitals I know here in Indianapolis that we have what we have a few of them that will ever ties heart screenings for student athletes for $25. Do some research and check out in your community if there were any hospitals that are offering this promotion, or put it on your insurance because it's worth it to have your child alive. If they get out there in their plane and they don't get the proper physical, you could be one of the statistics with your child laying out there on the field.

spk_2:   23:21
I was shocked when I went out to the dad's website and I saw that one in 200,000 high school athletes will die suddenly without any prior symptoms. That's a terrifyingly large number, actually, when you think about how many athletes there are in the United States, and of course, this is not just simply a problem in the United States. That's just where I found some of the information that something happens all across the world.

spk_3:   23:47
Yes, it is, and so many people have lost their Children to that. I am in contact with several people that have lost their Children suddenly playing football, baseball, basketball in their sleep. If it's gonna happen, it's gonna happen regardless. But unless you have that child's heart checked, you are actually running the risk of this happening suddenly, and you only have so many minutes to get that blood flowing or it's gonna cause some type of brain damage as well, right? Everyone needs to know how to do CPR and use an automatic external defibrillator.

spk_2:   24:22
I agree with you 100% and in fact, I live in the state of Texas and Dad has been a problem here in Texas with us having athletes that have sudden death happened to them. And because of that. There are a number of hospitals in Texas that will do free athlete screenings and my older son or are healthy. But he had a little brother who had help applies but left heart syndrome and I had read in families where one person had a left sided heart defect. Other family members often had undetected heart defects. So I was very concerned when my older son became a state swimmer and I didn't want the same kind of thing to happen to him that he might also said, Have a seizure like you're saying perhaps that they happened and he might drown in the water with something very frightening to make. So when I found out that they had free athlete screening at one of the hospitals in Waco, I was the second person in line that day. We got there so early. I just that

spk_3:   25:22
is awesome. Yep, that's a great thing to do is apparent. We have to be our know, navigate with our Children. We only there are Children. It's our responsibility to make sure. And unfortunately, there's no state little to protect him. And I wish there were in all states

spk_2:   25:38
I do too. That is something that we're going to need. Thio. Probably work on Jackie. We're gonna have to get on the soapbox here.

spk_3:   25:44
Yes, they are. We have a lot of things to work on, Anna.

spk_2:   25:47
What we d'oh! I mean, this is something, especially when you have a family history where people have died suddenly, that's just so terrifying. And then to find out. Oh, my goodness. It's a genetic Steve, that But we don't have to give up hope. There is something very simple taking a medicine or having a device implanted in you. What we can do about it is simple. We just have to be knowledgeable. And if we can spread that knowledge to others, we do have a chance to save a life. And it gives you a sense of relief. But for you just the opposite happened for you. You found out that your mother had something different than what you thought. It wasn't epilepsy. In fact, it was a heart defect. And when you had members of your family tested, you found out you all had, for almost all of you had that same defective. Like you said, if you didn't have it yourself, how is it that you could possibly have the recess a gene, even if you didn't have it yourself? Is that right?

spk_3:   26:45
That's true. Yes. And if you take the wrong medication, then it could very well calls you to go into cardiac arrest as well. If you suspect your trial by having accept and do your research, we have the world's biggest dictionary called Google.

spk_2:   26:59
You can research anything anymore. It's amazing what you can research. But I like what you said earlier in the show, where you said, see the right specialist. This is not something that your primary care doctor is probably going to know that much about. You need to see a cardiologists, and if you do have a problem, you need to see an electro physiologist. They probably do right. Those are the specialists who will make sure you get the right medication to make sure that they're following you. It's that follow up care that is so important, don't you think, Jackie?

spk_3:   27:33
Yes, absolutely to me. And I think yes, you have to take matters into your own hands. I've heard so many times people say, Well, my doctors said, You know, they work for you. You pay them to your insurance company or out of your pocket. However it's done, they work for you. And if you need an answer, you don't stop until you get that answer. Because

spk_2:   27:54
one of the heart stops.

spk_3:   27:56
You can't live without it, so you

spk_2:   27:58
never leave without your heart. Beating that is does

spk_3:   28:06
not happen, does it?

spk_2:   28:08
We need a correct electrical impulse in the heart to make sure that things will smoothly. And so you're absolutely right. We do have to be our strongest advocate for ourselves and for our Children and to teach our Children how to be an advocate for themselves. So, Jackie, how often do you have to see a cardiologists

spk_3:   28:26
twice a year, and so do both of my grandchildren and lock away. Both my grandchildren go to Riley Hospital, which is well known, I believe all over the country, and luckily it's right here in Indianapolis. Very, very good hospital.

spk_2:   28:42
It is a very good health. Well, I've had a number of friends who have had Children treated there and I've heard nothing but good things about Marley Children's Hospital. So thank you so much for coming on this show today. Jackie. I feel like this has been a breakthrough show. This is the first show for a heart to heart with Anna that we've done on long Q T syndrome. But I don't think it will be the last one, because I think this is something we need to address. And I'll be talking about care for adults with congenital heart defects in one of our upcoming seasons. And Jackie, we're going to need to have to come back on the show then, or one of your granddaughters to talk about the care for adults with long Q T syndrome. Would you like to do that?

spk_3:   29:21
I would love to do that. Anna, Thank you so much for having me today.

spk_2:   29:25
Well, it has been a delight. I have really enjoyed getting to know you. Unfortunately, that does conclude this episode of Hart to Hart with Donna. Thanks for listening today. Please come back next week on Tuesday at noon eastern time. Until then, please find him like a self Facebook. Took out our website heart to heart with anna dot com and our cafe press boutiques. Oh, our radio show on blow talk radio and speaker. If you follow us on speaker, we can eventually petition I heart radio to carry the show on I heart radio. Then you would be able to tune into the heart to heart with Anna on the radio in your car. That would be really cool right now. You can hear us on the Internet 24 hours a day, 365 days a year. Please remember my friends to come back like us. Follow us and remember, you are not

spk_0:   30:12
thank

spk_1:   30:17
you again for joining us this week. We hope you've been inspired 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