Losing Loved Ones to a Misdiagnosis

Today's show features Jackie Renfrow and her mother, Wilodene Gist. These women have suffered losses to Long QT Syndrome including both of Jackie’s children. Tune in to hear how the cause of their deaths was finally diagnosed correctly and why they are such staunch advocates willing to talk with our Host, Michael Liben, about how this tragedy has affected their lives.

Transcript

Anna Jaworski: 0:02

Welcome to heart to heart with Michael featuring your host Michael Lieben. Our program is designed to empower the bereaved community with information and stories from those who have suffered the most terrible loss. Michael himself a bereaved father, we'll be meeting with people from around the world to share and to draw hope from their experiences. And now, here is Michael Liben.

Michael Liben: 0:28

Welcome friends to the seventh episode of the first season of heart to heart with Michael, the program for the bereaved community. Our purpose is to empower bereaved members of our community with resources, support and advocacy information. Today's show is losing loved ones to a misdiagnosis. Here with us today to discuss this topic are our guests Jackie Renfro and we'll add in guest Jackie is a mother and a grandmother of children who have had or currently have Long QT syndrome. With a dean Jackie's mother grew up in the shadow of a loss to Long QT syndrome because her father died from this genetic heart problem. Jackie's grandfather will Dean's father had seizures and died unexpectedly in his sleep. Jackie's mother also started experiencing seizures at a young age. When Jackie had her children, Jimmy and Chrissy no one expected both of them will also die at a young age. Since her devastating losses, Jackie has been raising awareness of Long QT syndrome and having her family and others tested for it. Jackie's granddaughters are currently being treated at Riley Hospital. several family members are also going through genetic testing. Welcome to heart to heart with Michael Jackie, and we'll Edina and we'll begin with with the dean. Hi, I want to do what do you remember about your childhood? What memories do you have of your father?

Unknown: 1:42

Although very few. I was only three when he died.

Michael Liben: 1:48

Do you know anything about what he had? Ah, no,

Unknown: 1:51

I don't remember that. I remember my grandma saying that he smothered. And he runs to the door and gasping for breath. And I believe that he he was as almost an invalid. But anyhow, he went to bed that night and and he didn't wake up.

Michael Liben: 2:17

Did anybody explain what he had? Or I guess really nobody knew?

Unknown: 2:21

No, nobody it in 1932. They didn't know a lot about anything. So they they thought he ate a fish. And fish in the milk. They said killed him. But then in the old days, people just didn't realize they were grasping for straws, I guess? Well, that's

Michael Liben: 2:50

very interesting. Because we like to say that, you know, in every age, we it's always nice to say we know more now than we ever did before. And I remember that when my daughter was born 20 years ago, the first thing the doctor said was we'll be happy. It's now not 20 years ago. And I'm thinking they probably said that 20 years ago that hosted that 40 years ago, they probably said that 60 years ago and how little they knew and how much we've learned since then. How long after your father's death? Was it when you began having seizures? And did you connect your experience with everything that your father went through? And were you concerned that you might meet the same end?

Unknown: 3:25

Well, I did, but my family didn't I don't think he died when I was about three. And I had ADD when I started having my periods and stuff as when I started having seizures. So I was about 11 or 12. When I started them, my grandmother told I died course. And then from then then on. Occasionally I would would have a seizure till I had children and then I got rid of bad.

Michael Liben: 4:06

Can you tell me what a typical seizure was like? Oh, well,

Unknown: 4:09

I would feel like I would go on to die. You know, and, and I was really frightened when I'd wake up and, and I felt like I couldn't give him a breath. And I flopped around. My husband would try to hold me down because he didn't know what to do either. And I started I couldn't breathe. I would just gasping for breath. And then when I come out of it, I was totally wiped out. Exhausted till I rest for several hours and then then I'll get better.

Michael Liben: 4:50

How long would the seizure lasts a few minutes? Yes, a few minutes. Yes. Now this all began when you were 11 It got worse when you were having children when you were finally diagnosed How old were you?

Unknown: 5:02

Is 72.

Michael Liben: 5:04

That's the part that I that amazes me. What did they think you had for 72 years? Okay,

Unknown: 5:12

well after I worked in everything, and after that finished having children, after a while, I guess I thought I was better because I didn't have them anymore. And then at 72 I was I was having a nervous battle, and were taken to the hospital. And that's when they found that I had long QT.

Michael Liben: 5:44

So you're saying that you were actually clear you had no seizures? Till you were 72 from I'm guessing about 30 years. So that's pretty amazing. It is. So you lived with Long QT? For 72 years, 30 of them clear. And did they did any bit along the way? So you had anything? Do they explain what the seizures were?

Unknown: 6:08

They thought I had an epilepsy they said,

Michael Liben: 6:11

Did they say the same thing about your father or they just didn't know anything about that?

Unknown: 6:16

They didn't say anything about him. Then they had actually did an article on her dad, saying he'd had a massive heart attack.

Michael Liben: 6:23

That's what they knew, I guess, you know, 90.

Unknown: 6:28

In the meantime, I had two or three daughters and two daughters that started having seizures. And a grandchild is started having seizures. Everybody had epilpsy.

Michael Liben: 6:46

And so they thought the whole family had epilepsy for three generations,

Unknown: 6:49

I guess is what they thought. They really didn't know what else even though it wasn't hereditary.

Michael Liben: 6:55

When did Long QT first become discovered is something that needed to be known about.

Unknown: 7:01

I didn't know anything about it till till they took me to hospital. told me I had it 2003

Michael Liben: 7:08

Who doesn't? Is that 2003 is when you discovered that your mother had long QT? Yeah. When? When was it? First medically recognized that long QT was something because obviously, in her father's day, they didn't know what it was. So when did When did people find that out?

Unknown: 7:25

1981. Dr. Vincent discovered it

Michael Liben: 7:30

in 1981. So from the 30s to the 80s 50 years of family history, a lot of people have this. Nobody knows what it is. And they just assumed it was epilepsy. And then 1981, they continued assuming that there was no reason to.

Unknown: 7:43

Well, there was I'm not sure I don't remember clearly about what. But Dr. Vincent, it was something to do with his wife and his sister. And he kept seeing the same thing happen. And he began doing research on it. And that's when he discovered that the Long QT intervals were longer and that was causing the heart to go chaotic, causing leading cardiac arrest.

Michael Liben: 8:12

Okay, first of all, Jackie, I want to welcome you into the program. And thank you for joining us. For people listening, the voice didn't change suddenly. We're now speaking with Linda Dean's daughter, Jackie, who will be joining us for the next segment of the program. As we get ready now for a break. We'll be talking more with Jackie, about losing her children Jimmy and Chrissy and how she coped with their first diagnosis, and then learning that the diagnosis was incorrect.

Myles Schweitzer: 8:38

Hi, I'm John Montez of MBCs. Hit acapella show the Sing Off and acapella music. It takes a team to create a sound that many will enjoy. Just like it'll take a team to help my good friend Myles Schweitzer and HLHS survivor. Let's help Myles fulfill his dream and make a big enough sound to bring awareness to congenital heart disease. Please visit them@gofundme.com backward slash the miles project miles with the y. Again, that's gofundme.com the miles project. This is for miles.

Anna Jaworski: 9:08

You are listening to heart to heart with Michael. If you have a question or comment that you would like addressed on our program. Please send an email to Michael Lubin at Michael at heart to heart with michael.com. Now back to heart to heart with Michael.

Michael Liben: 9:24

Today we've been talking with Willie the guest about losing her father when she was very young. Now we turn to her daughter Jackie Renfro who lost two precious children to what they thought was epilepsy. Jackie, tell us a little bit about you mean Chris What were they like?

Unknown: 9:38

Oh, they were fun, loving, caring kids just appeared to be just your average kids. Jimmy was married and had a daughter. He was talking about going back to college and pursuing a career moving buying a home and then that's when Unfortunately, he lost his life.

Michael Liben: 10:03

But about Chrissy Oh,

Unknown: 10:06

she was a caring doctor. It was just, you never knew what she was going to do very, very sweet, caring girl. If she ended up having a child after we lost Jeremy, but

Michael Liben: 10:21

when did they start showing signs that that something was wrong?

Unknown: 10:25

Jimmy began at about 11. He one day went out to get the mail. And he came in, he was standing at the front door, and he just fell over the couch having a seizure.

Michael Liben: 10:39

Did you recognize that as something you'd seen before in in you or your mother?

Unknown: 10:44

Yes. So my sister. Yeah, yes. And my niece is that already began having him at that point.

Michael Liben: 10:52

How old were you when you started having seizures?

Unknown: 10:54

I believe I was six years old.

Michael Liben: 10:57

Can you describe what it's like being six years old and having a seizure?

Unknown: 11:01

Well, actually, unfortunately, in our family, it seemed to be common. It was just the way of life we would make a phone call and say, Well, you know, she had a seizure today. And but I wouldn't happened with me when I was six that I was running down to the neighbor's, my brother and sister were having an argument. And, of course, I was running. So there, my heart was beating fast. And all of a sudden, I just remember seeing spots in front of my eyes, and I ran into a rosebush. And then I remember my sister carrying me in to the neighbor's house. So of course, mom took me to the doctor, and they put me on the same medicine that they've been treating the whole family with for years,

Michael Liben: 11:50

which is for epilepsy. Yes. Yeah. Did that help that hurt? Did that just do nothing? I mean,

Unknown: 11:57

I honestly do think it helped. I think one day they'll find out some of the medications that we've taken, probably helped save our lives to live so long. Unfortunately, they did not give these medications to my children, because ironically, the dye lanten causes your gums to swell. And I feel like that that. I honestly think that played a role in it. I think they'll find out. I know, I can't prove it. But I just think the medications we were on the dial Latin in the same vein of Barbara tall, helped the Long QT.

Michael Liben: 12:37

What are they good for long QT now.

Unknown: 12:40

Beta blockers? No, I admit

Michael Liben: 12:44

to being completely innocent of knowledge on this. So what they're giving now is that anything like what they give for epilepsy is anything like what you get for epilepsy.

Unknown: 12:53

Now, it's more about it's a beta blocker, which is kind of more of a blood pressure pill, anything that ends in, like, I take Metoprolol. So the toper, all the ending overall. That's usually what we take for that. Plus, you normally have an implanted defibrillator, and I see D which is a pacemaker, and then your device to shock you. So hopefully, if our heart starts going out of rhythm, that it will pace it right back to where it should be.

Michael Liben: 13:26

And that is together with medication, or in place of medication.

Unknown: 13:31

Now both Yes, we have both of them.

Michael Liben: 13:35

Your children first diagnosed with epilepsy. At what point were they diagnosed with Long QT or were they not?

Unknown: 13:41

They never were diagnosed with Long QT. It was in 2003. When mom was taken to the hospital, we had just lost Chrissy. It was tooth out May 2003. And we had lost Chrissy July 2002. We were that close to we would have been able to save Chrissy

Michael Liben: 14:04

months. That must be really hard. I'm assuming that

Unknown: 14:07

was That was rough. It all has been it all was rough.

Michael Liben: 14:12

Is there any explanation how your mother I mean, she's miracle over 70 before they figured out what she had, now that can treat it. And now you know, that's not the issue that it was before. How can they explain how she's been surviving this for so long? Without really knowing what it was in with taking the wrong medication?

Unknown: 14:33

Well, I don't know. We're not really sure. But once again, I'm kind of going back to the dilantin. And she was on a different type of nerve medicine. Because see, you got to remember we had heart that sorry, our heartbeat fast. So we would take we thought we had bad nerves. So we would increase our mind medications if our heart started racing, I think that might have played a role in it. Because I know in 19... 8... 1981 I think... I would come real close to death. I was 21 years old. And I just had my daughter and they I was on dilantin and phenobarbital, and they increase my die uh phenobarbital. And I honestly think that helped save my life.

Michael Liben: 15:31

And I'm still trying to wrap my head around this, that you're all diagnosed with the wrong thing at the wrong medications. And it's possible that even the wrong medication kept you on long enough until they can make the right diet diagnosis.

Unknown: 15:43

Yes, that's, I mean, I remember the doctors would just increase my medication. And I literally, I couldn't even get up out of bed to go to the hospital. My heart was going so fast. And I had such a bad seizure. I, I honestly felt like I was dying. And my son kept yelling Mommy and I, I honestly think that's the only thing that saved me.

Michael Liben: 16:08

Both you and your mother told me the same thing that that a seizure? Is you feel like you're dying. I never had a seizure. I've never had that kind of seizure. I don't know how to even relate to what you're telling me. But how, what is it like? You feel you're dying? Do you? Do you see the end? I mean,

Unknown: 16:28

it was I just remember it being really dark. And you kind of start being aware, you can hear people talking, but you can't move. It's like you're trapped. It's that your mind is still going. It's awful. It's a very powerful thing to have to experience.

Michael Liben: 16:49

I watched my daughter have epileptic seizures. And I think it was for her was difficult to communicate because she was also autistic. But I think the only thing that she really didn't like in life were those moments of seizure because I could see it on her face, the total lack of control. And the total not understanding what was happening to her. I think it was terrible, but they were over much quicker. These what you're describing could take several minutes, and then you'd need to rest for several hours.

Unknown: 17:19

Exactly, yes. And it was really bad with my daughter. I remember when she was young, she would turn blue. If I would see her when she was having a seizure, she she would quit breathe in and I told a neurologist that and he told me you don't quit breathing during a seizure. And I argued with him I told him she was you know, she wasn't breathing. And he told me she was but I know she was at.

Michael Liben: 17:51

Well, I'm sorry, we're gonna have to take a break right here at that at that really difficult moment. And I appreciate that you and your mother have been with us and talking about your experiences with Long QT. And I thank you for being so candid about the loss of your children. These are very difficult things to talk about. We're grateful that you shared how you learn from their ultimate diagnosis of Long QT syndrome. The story of your journey from misdiagnosis to grieving parent has much to teach us so please stay tuned. In our next segment, we're going to be talking with Jackie and a little Dean again, how genetic testing gave them hope for the future.

Unknown: 18:30

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Anna Jaworski: 18:31

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HomeTonightForever: 18:41

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Anna Jaworski: 18:51

I love the fact that the proceeds from this CD are actually going to help those with congenital heart defects join music tonight forever

Michael Liben: 19:08

heart to heart with Michael is a presentation of hearts unite the globe. And as part of the hug Podcast Network. hearts unite the globe is a nonprofit organization devoted to providing resources to the congenital heart defect community to uplift empower, and enrich the lives of our community members. If you would like access to free resources pertaining to the CHD community, please visit our website at www congenital heart defects.com For information about ch D. The hospitals that treat children with CHD summer camps for CHD survivors and much, much more.

Anna Jaworski: 19:45

You are listening to heart to heart with Michael. If you or someone you know would like to be a guest on Michael's program. Please email him at Michael at heart to heart with bikal.com. Now, back to our program.

Michael Liben: 20:01

Welcome back to heart to heart with Michael, a program for the bereaved. We are here with Willdan guest and her daughter, Jackie Renfro, these women have shared their stories with us about losing loved ones to Long QT syndrome, and how misdiagnosis affected their lives while living when Jackie's children died, so suddenly do bring back memories of your father and your childhood? And did genetic testing become a part of the conversation with the medical professionals?

Unknown: 20:28

Well, no, really, I was too small when my dad died, didn't even remember. But it broke my heart because I knew that they had the same thing I had, because they were having the same problem, and it made me feel kind of guilty. You know? They were my babies.

Michael Liben: 20:54

Why? Why would you feel guilty?

Unknown: 20:57

Because I feel like I did it too. You know, they got it from me. I've felt that way all the time.

Michael Liben: 21:10

Well, did you know it was genetic? Did you I mean, that?

Unknown: 21:14

No, but it was happening to several generation. So you know, you, you figure that it's something you passed on?

Michael Liben: 21:26

I'm very sorry to hear that. And I hope that you feel better now. Knowing that it's not anything that you could have done or changed?

Unknown: 21:33

Oh, I do. I do. But I just wish. Well, it just wasn't to be so

Michael Liben: 21:42

I understand. How was genetic testing now been? A part of your life. You've been tested? Anybody else?

Unknown: 21:51

Oh, yeah, my whole family had been tested. Actually, my son just, well, he knew he had it. But just two or three months ago, he had to, he had to go in and have a defibrillator put in. And I guess he was in pretty bad shape when I got him in there. How's he doing? He's doing great now. And he still can't drive for several months.

Michael Liben: 22:21

Has anybody thought about how this is that? It's affecting everybody? I mean, I know that it's genetic. But sometimes when the genetic somebody slips through the cracks, somebody doesn't get it. It appears to me that now there isn't anyone who hasn't been touched by this.

Unknown: 22:37

Not in our immediate family. No.

Michael Liben: 22:41

We're talking about four generations of everybody.

Unknown: 22:44

I have relatives that I'm sure I had one cousin to die in her sleep in 2027. She had epilepsy, of course. Her daughter killed herself. Because she was having seizures so bad. And I think there was another one in their family. That, but they won't listen, they won't listen to you.

Michael Liben: 23:16

So they're still they're still saying epilepsy.

Unknown: 23:19

Yeah. And I've sent him the genetic testing, that they that they were related to me, and I had, what mutations I have with the Long QT, and they still haven't really responded to it.

Michael Liben: 23:34

What's it like when you find out? Is there a prime example? What is it like when you find out that it's a misdiagnosis that everything you know, essentially is wrong? What was that like?

Unknown: 23:44

It was just like a jigsaw puzzle. And you had all these pieces that fit in, and you knew there was something wrong, that you just didn't know what the final piece was. Because after Jimmy died and Chrissy died, I remember sitting there and I had there was about 10 months then before we found out and I would look at their kids and think they're gonna die at the same thing. If I don't figure out what it is. Well, our resources of course, weren't like they are today. But still you need a physician or somebody to kind of guide you in the right direction or hopefully someone that's raising awareness, so you can hear about it. But I remember looking at those kids thinking they're gonna die the same way that their parents died. And I I didn't know what to do to stop it. And it still worries me even though they have the fan ventilators. But when I mom was diagnosed that St. Vincent's Hospital in Indianapolis, I call the physician that saw my daughter and I, and I told him I said, my mom has a heart condition called Long QT and they said, I'm sure that's what we have and that It's what killed my children. And he even told me no, you don't have long QT. It's too rare. There's no way. And I said, Well, they're telling me we do. And I'm not I know we do.

Michael Liben: 25:12

And what did he base? This? His answer? You don't just because he assumed it's to air. It didn't check, because

Unknown: 25:18

he told me that the odds of someone coming into his office and have a long QT were slim to none. I said, Well, it happened.

Michael Liben: 25:28

It happened a lot.

Unknown: 25:29

Yeah, it still is happening a lot. And I feel like there's a lot of people out there, there's not a whole lot of awareness. A young people having heart conditions.

Michael Liben: 25:41

Well, you said that you need somebody you need a physician and you need somebody who can raise awareness. In your case, there wasn't anyone to raise where there was just you. You had to be the one to raise the awareness for yourself. How does that happen? You? If you hadn't, you wouldn't?

Unknown: 25:56

Yeah, I mean that you have to think that was the internet was just beginning to become popular. Now. We can get on there and possibly Google things and come out with some type of an answer. But then there was nothing we we just knew that we had something wrong. And I knew I couldn't explain why my children were gone. And we were all here, it made no sense. And like I said, the only thing I can make heads or tails of is possibly the medication that we were on. Because Jimmy and Chrissy were both on the Tegra tal and they had always kind of give us up then to help with our nerves because of our heart pounding so fast, but they didn't want to do that with them feel like if they would have maybe just maybe they would have been okay.

Michael Liben: 26:48

Let me ask you one final question. Now we have genetic testing, we can recognize it. Doctors are more aware of it. How is it possible today? Somebody has long QT? What does life like? How does he leave? What does he What does he know not to do? What does he know he can do? How does that work?

Unknown: 27:04

I think that as long as you have a defibrillator, I think you can pretty much do anything besides competitive sports. They don't want to do and that of course, you couldn't do a track and build, you know, you could do golf, there's certain you have to kind of know your boundaries with Long QT. And especially there's certain ages, I feel like it's probably a little bit worse than others puberty. Females, when you have your, your cycles, I feel like your your hormones are out of whack. After not while you're pregnant while you're pregnant, you're fine. It's after you give birth. It's it's we've all come near death after birth.

Michael Liben: 27:46

We're about to close the program. But I just have to say that I am full of awe and respect for both you and your mother, who have somehow without diagnosis managed to go many, many years longer than you would think possible and somehow got through it to survive to a diagnosis. And I am very pleased that you were able to do that i i wish that medicine had come along faster in time for your children. And I'm I'm very sorry for that I sharing your sorrow.

Unknown: 28:15

I am on your show today?

Michael Liben: 28:17

Well, it's I would like to say it's been a pleasure. It's been very informative. It's been very real. And one of the one of the more difficult experiences I've had because I'm talking with two women who survived at a time when they might not have. And they have children and grandchildren who were just on the edge of being able to be saved by medical science that came through just a little bit too late. And I'm deeply moved by this. And I'm in awe of these people, these women that I'm speaking with today, I think the best lesson we can learn from this month program is that genetic testing is critical. And also if you think you have something and you're not sure if you suspect something, make sure that your doctor listens to you and make sure that you are heard because maybe you know something is in the case of his family that they were able to at some point save themselves in the future generations. Because they stood up and said this is what it looks like. And this is what I think we have. And with that we're going to conclude this episode of heart to heart with Michael. I want to thank Jackie and Willa Dean for sharing with us and we hope that their story has brought some hope to the people who are listening. I'll be with you soon. And until then remember, it's okay to win.

Anna Jaworski: 29:33

Thank you again for joining us. We hope you have gained strength from listening to our program. Heart to Heart with Michael can be heard every Thursday at noon, Eastern Time. We'll talk again next time when we'll share more stories. If you would like to continue today's discussion. Please join us right after the program in the hug podcast chat room on pal talk

Unknown: 30:00

You