A Celebration of the Life of Wilodene Perry

Today, we gather around the digital campfire to share the enchanting and hard-hitting story of Wilodene, a tenacious woman who lived with seizures for decades before her genetic heart condition, Long Q-T Syndrome, was discovered. Inviting us through the pages of this striking tale is her daughter, Jackie Renfrow, who returns to brighten our podcast with her stories of hope, resilience, and advocacy. As a special memory, Jackie and her mother appeared on our podcast together, their shared hope being that their story could potentially save someone else’s life.

The journey didn't end with just Wilodene. Jackie's narrative continues as she traces the impact of Long Q-T Syndrome on her family over the course of seven decades. She recounts the measures she had to implement to protect her loved ones from potentially fatal seizures. Jackie's story is punctuated with moments of fear, especially for her grandchildren and great-grandson, but she meets these challenges head-on, embodying the courage and resilience that her mother passed down to her.

As we traverse this journey with Jackie, we're given an intimate glimpse into her efforts to comfort her mother in the face of death, while also securing professional help and community support. Jackie’s plans for advocacy work in raising awareness about Long Q-T Syndrome form the cornerstone of our conversation, showcasing her commitment to continue her mother's legacy. Join us for this heartwarming tribute to a woman who defied her condition to live a full life and to a daughter who continues the fight with hope, resilience, and advocacy.

Transcript

Jackie Renfrow: 0:00

Her greatest achievement is to live to 94 years old and to have children. Thankfully, she'd never had to bury a child. But when she buried my children, I will say that was about as close to children because she had a very good, nice bond with my children. They were very close to grandma.

Michael Liben: 0:26

What can we do to celebrate the lives of those we love after they've passed away? To what does one daughter attribute her mother's long life? How can we celebrate our mothers when they're no longer with us? Welcome friends to"Bereaved But Still Me". Our purpose is to empower members of our community. I'm Michael Liben, and the father of three children - Idan, Sapir, and Liel. Liel, my youngest daughter was born with a heart defect and later developed autism and then epilepsy. Losing her at 15 is what has brought me here to be the host of this program. Here with us today is our guest Jackie Renfrow. Jackie's family was treated for epilepsy for years. On April 15, 2000, she received a call saying that her son Jimmy had died from having a seizure in his sleep. He left behind a wife and a daughter. Just two years after that. Her daughter, Crissy died the same way on July 25, 2002, leaving behind an eight month old baby. Ten months later, Jackie's mother Wilodene, was rushed to the hospital for a heart condition called long QT syndrome. Having suffered from seizures for many years, Wilodene was very fearful of her own death, and many times found herself very close to that death. Sadly, it wasn't until 2003 that the family finally discovered that the many family members who died had not died from seizures, but rather from a genetic heart condition. Long QT syndrome is a specific arrhythmia that can be lethal if not addressed properly. It may appear as a person with long QT syndrome is having a seizure. But actually the heart's electrical system is not functioning properly. Wilodean's doctors discovered she had long QT syndrome, and they put an internal defibrillator into her chest to help her heart when it experienced arrhythmias. The defibrillator allowed Wilodene to live into her 90s. Together with her daughter Jackie, she appeared on our podcast twice, once to talk about losing loved ones to a misdiagnosis and then again to talk about living with loss after loss. The links to these episodes will be in our show notes. Sadly, Wilodene passed in 2023. Today, Jackie is here with us again, and we have a wonderful opportunity to celebrate her mother's life in this world. Jackie, thank you so much for joining us again"Bereaved But Still Me".

Jackie Renfrow: 2:27

It's my pleasure, Michael, thank you for having me again.

Michael Liben: 2:30

I just want to express our collective sorrow when we heard about Wilodene recently, and the chance for us to say publicly how much we support you and how we feel for what you went through.

Jackie Renfrow: 2:42

Well, thank you so much.

Michael Liben: 2:44

When you and your mother were on the first time, what did that mean to her to be on the podcast?

Jackie Renfrow: 2:48

It meant the world to my mom because she truly loved to share our story. And reach out to people in hopes that she would help someone since she had lost both of her grandchildren to long QT. She was hoping to save other people's lives since we had no clue what had taken Jimmy and Crissy's lives. And she just loved telling the story. So it meant a lot to mom, and it meant a lot to me, because now I always have a piece of her voice out there. I can grab and listen to.

Michael Liben: 3:22

I'm glad I was able to help be part of that. And all of us here at the program are very, I'd like to say happy but we're not. But I'd like to say that we're all very pleased that we could give that to you. I don't think at the time we realized that's what we were doing. But in retrospect, it is really a wonderful gift that I think a lot of people wish they could have.

Jackie Renfrow: 3:43

Yes. And I'm very thankful that I do have that, just to hear her voice. I was trying to listen to it the other night. Of course, it's still a little too soon, we're only two months out, but I have it saved on my phone so anytime I want to listen to it, I can sure do that.

Michael Liben: 3:57

You know, when we met seven years ago, we had so much to talk about, we realized that we have to record two programs, because we were talking about living with a misdiagnosis which is in itself a very serious issue. And I want to get into that a little bit later. But also loss after loss. Your whole family was struck by this it's apparently genetic. So let's tell our listeners how the diagnosis was finally made, and how that changed your family's life.

Jackie Renfrow: 4:24

I lost my son 2000. I received a phone call he was gone. And then just two years later on, while my daughter was getting ready to have a baby and I was very fearful that something was going to happen to her like it did her brother and unfortunately it did on July the 25th 20 - or 2002. My daughter had been gone approximately 10 months when I received a phone call that my mom had been rushed to a hospital and was in intensive care for her heart, which she was 72 and I was thinking okay, well have, you know, she probably has some type of maybe having a heart attack or something. And that's when the doctor took us into a room to tell us our mom had a heart arrhythmia called long QT syndrome, and most commonly could affect younger people, and even cause death in them. And that's when I looked up to the doctor and made eye contact with him and told him I had just lost my children, and I had no clue why I had lost my children. He looks at me and says you probably have long QT. They took me and my sister and did the EKG and our EKG course looked weird. So then we started undergoing the proper test. And we did have long QT syndrome. And me and my sister actually, both received a heart defibrillator about a month later. And we even shared our rooms together.

Michael Liben: 5:53

What grabs me here, though, is that Wilodene had seen people dying all around her for 70 plus years, and they didn't know what it was, I guess, because technology hadn't come around to figuring that out. But but suddenly they did. So did it all come into focus for her and did it change her in a way that now she had something specific to talk about and to warn people about and, and something to work for something to be involved with.

Jackie Renfrow: 6:18

I can't even explain to you after so many years, it was just like, all of a sudden this jigsaw puzzle was coming together. And then the piece just went right in there and it explained everything from why we had to cover the phones when mom was sleeping to keep her from having a seizure because we had every symptom out there. But no one had just come across it or even checked our heart.

Michael Liben: 6:45

Why did you have to cover the phone? I'm curious, how did that help prevent the seizure?

Jackie Renfrow: 6:48

When you're in a sound sleep with type two, type two is very dangerous, being startled. And if you're startled, it can cause your heart to go into an arrhythmia, and it stops pumping blood which cuts off the oxygen to your brain and causes a seizure.

Michael Liben: 7:05

Oh my gosh...

Jackie Renfrow: 7:08

Well, my grandkids once I found out the diagnosis, I would tell the schools to pull them when there was a fire drill. So it wouldn't startle them.

Michael Liben: 7:18

Oh, boy. I can't even imagine what that's like if I were afraid of being startled, I think turning on a light would startle me.

Jackie Renfrow: 7:24

It does. It really does. I'm scared of the dark because of that.

Michael Liben: 7:28

I want to try to understand what it's like to be in that family to be a part of that. It's really hard because everything is wrong. Nothing is good. How do you spend your day like that?

Jackie Renfrow: 7:40

I don't think about it too much for myself. I think about it for my grandchildren. I live in fear for them. But as for myself, I just try to live my life as normal as I can. And hope nothing happens. And I have my defibrillator in the event that does and it will save me. I worry more about my great grandson, something happening to him because he's only he's just a year and a half old.

Michael Liben: 8:04

Does he have long QT?

Jackie Renfrow: 8:06

Yes, he does. Unfortunately.

Anna Jaworski: 8:10

You're listening to "Bereaved But Still Me". If you have a question or comment that you would like addressed on our program, please send an email to Michael Liben at michael@bereavedbutstillme.com. That's michael@bereavedbutstillme.com This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. The opinions expressed in a podcast are not those of Hearts Unite the Globe, but of the hosts and guests and are intended to spark discussion about issues pertaining to congenital heart disease or bereavement.

Michael Liben: 8:48

Jackie with everything that your mother was carrying, you know that she lived into her 90s which is pretty good. Now, you know, I'm about to bite myself on the lip for saying that because I've always said that we don't congratulate people for being older or whatever we think is older and I say well, that's okay. Because it's never okay. And your mother is still your mother even if she lives to be 1000. But 93 is still pretty good. So what do you attribute her longevity? Was it her family? Was there something in her spirit that just refused to give up? So something that you all did together? How did how did that happen?

Jackie Renfrow: 9:22

You know, I, her mom lived to be 93. Actually mom lived to be 94 which I was very fearful when she did turn 93 that that would be the year because she seemed to take after her mom quite a bit. But that last year, I just started to seeing the big decline in mom but she had a strong will to live she was afraid to die. I'm not gonna lie, she was very fearful of death and I do blame a lot of that on our heart condition on her having those horrible seizures for years. And I think it scared her so bad is one of the reasons she was just scared of the actual passing and what it would be like for. I do think a lot of it is because of the long QT actually.

Michael Liben: 10:09

So you're saying that part of her longevity was a fear of dying. She just refused to die because she was afraid to go there.

Jackie Renfrow: 10:15

I agree. Yeah. And she had very good caretaker. I have to give myself credit for that. But yeah, she was very afraid of that. And I'm going to tell you about mom, she took her medication right on time, she might have forgot what she ate for lunch but by gosh, she remembered that medication.

Michael Liben: 10:32

Well, that's good, because I can't remember what I had for breakfast, or I can't remember my medication some days. And the worst. The worst is, you've taken it. The box in front of you is empty. And you go, did I take that now? Or was it this morning?

Jackie Renfrow: 10:46

I just have to go over that with her quite often. I would say that to her she would say, "I've taken my medicine". I said what did you just eat? She goes, "I have no clue but did I take my medicine?"

Michael Liben: 10:57

We've all been so do with age, by the way. You're right. That's just flat out fear.

Jackie Renfrow: 11:05

Yes. But she was also fearful she didn't take her medicine that it would, consequences will be a seizure.

Michael Liben: 11:12

I know that so well. I know that oh, so well. What would you say though? Would you say that she had? No let's let's put a more positive spin on it rather than just the fear of death. Did she have some kind of joy of living which she did she live for her family? Did she? Was she a family kind of person did you all come over for dinner? A little bit of that, let's, we want to celebrate her, we want to talk about some really happy moments.

Jackie Renfrow: 11:33

Well, mom loved her family. She did. She just wanted to live. She really wanted to live to play. She loved to play cards. She loved to read books. And she loved to tell her story about what she had been through. And that gave her a sense of fulfillment. She did love her grandkids and her great grandkids. And actually she had great, great grandkids.

Michael Liben: 11:56

Good on her. I had a neighbor who had over 60 grandchildren and great grandchildren. And she died just before number 60 arrived. And she knew everyone by their name. She couldn't tell you maybe what she had for breakfast, but she knew every kid by name and by order. There's something special about that, I think.

Jackie Renfrow: 12:17

And what was her age?

Michael Liben: 12:18

She was 93 when she died.

Jackie Renfrow: 12:20

Wow. That's unbelievable.

Michael Liben: 12:22

I'm going to digress for a moment. Well, she lived upstairs for me and her daughter occasionally would spend days and nights with her. And it was clear to the daughter that it was time for her to go. But she was waiting. She was refusing to go and she was suffering. She wanted to see number 60 which was due any day. And her daughter who is a nurse said to her, she said, "Mommy, you'll see him first". And with that, she left.

Jackie Renfrow: 12:48

Oh, that's so sweet.

Michael Liben: 12:51

Yeah, there's something about being 90 plus that makes you very sweet. But but yeah -

Jackie Renfrow: 12:59

I agree.

Michael Liben: 13:01

They're both wonderful people. And the woman who was 93, who lived upstairs from me was a surrogate grandmother to my children. She would take in sewing, I think at least up to age 90, she would take in sewing. And she would never charge my kids for anything. She said I don't charge children. So anything I brought her that was for my kids was free. She was just the kind of person. She wasn't really doing it to make money she was just doing to keep her hands busy, you know, but it was a thing, it was a thing. I get the feeling Wilodene was that kind of a grandmotherly figure to people who just needed a grandmother?

Jackie Renfrow: 13:33

By great yeah, she was very well and example was my friend. Her daughter in law was passing away from cancer. And she had two young children and mom, of course wanted to reach out and, and donate a little bit of money to help them out. So yes, that's the kind of person she is or was.

Michael Liben: 13:54

What would you say is her greatest achievement out of all the things that she's done?

Jackie Renfrow: 13:58

Her greatest achievement is to live to 94 years old, and good to have children. Thankfully, she'd never had to bury a child. But when she buried my children, I would say that was about as close to children because she had a very good, nice bond with my children. They were very close to grandma. And I think one of her big achievements also is I would like to I think I'd brought this up to you before but years ago, my mom had got the job at a hospital in the state of Indiana, and she couldn't type so they moved her to the snack bar and then she went on and received her degree to be a QMA where she was actually handing out meds to patients and that was a huge accomplishment for her. Especially at the age of 55.

Michael Liben: 14:49

And that was before she knew about long QT right? So -

Jackie Renfrow: 14:52

Yes, yes. And she went on and got a couple of degrees and was passing out meds to the patients.

Michael Liben: 15:00

That's terrific. I didn't realize she had degrees. And nonetheless, she went and got a higher education at age 50. That's terrific.

Jackie Renfrow: 15:09

It is. And so despite everything that, yeah, because she had four kids she needed to get raised. And she didn't really have a skill in any particular thing. So she ended up in the snack bar and then went on and got that skill trade. I think that's amazing.

Michael Liben: 15:27

That's terrific. Hats off. I want to ask you one more question here before we take a break. If you had to sum up your mother's life in just one sentence, what would it be? And I'm a nice guy. So I'll give you three or four sentences.

Jackie Renfrow: 15:38

I hope so. How would I say mom lived life? Fast and furious. I mean, my mom was very honest and direct, but could be kind when she wanted to be if you weren't deserving of kindness. If you weren't deserving, she would tell you.

Michael Liben: 15:57

Well, then let me just say how lucky I feel because I spoke to her three times those years ago, each for oh, I don't know, more than an hour. And I never got the impression from her that she didn't think I was worthy. And I appreciate it.

Jackie Renfrow: 16:11

Now, because you wouldn't have gotten that impression if she thought you was you would have known. It's probably the on her face. She was a very good person.

Michael Liben: 16:24

Well, I didn't see her face. I'll take your word for it. But you were there, you would know.

Jackie Renfrow: 16:28

Oh, yes. Boy, do I know that look.

Michael Liben: 16:33

So she didn't suffer fools lightly. But what else can we say about her? You got another half a minute.

Jackie Renfrow: 16:37

She did not mince words. No, not at all. Unfortunately, that gene could have been passed on.

Michael Liben: 16:52

If you've enjoyed listening to this program, please visit our website heartsunitetheglobe.org and make a contribution. This program 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 educate, 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 congenitalheartdefects.com. For information about CHD, hospitals that treat CHD survivors, summer camps for CHD families and much, much more. Jackie, we know that your mother lived her life in fear after seeing so many people around her die over the years. What did you do to help her try to cope with that?

Jackie Renfrow: 17:43

Well, I just tried to comfort her as much as possible. I encouraged her to read to watch TV, anything to keep her occupied. She didn't always listen to me. But occasionally she would even to talk on the phone or anything. I reached out a few times to get her professional help. It helped to some degree. But face it, when she woke up, she was still 90, 91, 92 and she was dealing, well we know what you're up against when you're that age. You don't have a lot of time left. I tried to get her active in some communities. The senior citizen community did play bingo and to play cards anything to interact with people her own age. But she she got to where she couldn't go out that much. So she just would talk to some friends on the phone and talk to them and about her fears. And just make it through another day day by day. It was the same journey. She was always afraid when I was going to leave her. And I think once again we go back to the heart condition, the long QT, that I think she was afraid that she was going to have a seizure or pass away while I was not home. So at the end, I tried to limit leaving her unless someone was here with her. We did have a wonderful person came into my mom's life through hospice. She was a volunteer. And this lady is absolutely amazing, very religious. And she helped get my mom where she needed to be to realize when she passes, that her life was just starting. It was not ending.

Michael Liben: 19:30

I'm really glad you said that because I'm going to go back to my neighbor upstairs who was a nurse. She was a nurse in a hospice. And she would say more than once,"I'm not really a nurse, I'm a midwife to the next life".

Jackie Renfrow: 19:41

Exactly.

Michael Liben: 19:43

It's such a nice way to look at it because I think the hardest thing and where that fear comes from is what's going to happen to me, where am I going? And maybe not so much where am I going but that moment when I pass is it going to hurt? I think that's that's universal, I really do.

Jackie Renfrow: 19:56

What do I have to go through to get like that to get there.

Michael Liben: 20:00

Yeah, exactly. And I'm gonna venture a guess here. That part of her fear wasn't just about herself, I'm sure she was afraid for you when you went out, and she couldn't see you, She couldn't protect you at that moment, either.

Jackie Renfrow: 20:12

I think you're correct. And she would always tell my husband, that when this did happen when she did pass, to make sure he took care of me. So you can see that from a mother or father's perspective that she was afraid of leaving her children, because she was leaving the her earthly body.

Michael Liben: 20:33

Sure, sure. Did she have an idea that if she did pass, she would be in a better position to protect you all?

Jackie Renfrow: 20:39

I think there at the end she finally, this volunteer, worked wonders with her, she would come over for three, four hours a week and go through the bible with her reading their scriptures, and how wonderful it's going to be and how she's going to see all of her family that she never really remembered meeting her father, because she was only two when he passed. So yeah, she helped her in so many ways. And like you had said, on to the next chapter in your life, eternal life. And this isn't goodbye. It's just until we see you again.

Michael Liben: 21:18

One of the things that I remember and I admired when you were on our podcast so many years ago, was there was a passion that you both shared for advocacy. And I know that you and our executive producer Anna Jaworski, have been talking about you taking your advocacy work to the next level. Can you talk to me about what you're planning to do?

Jackie Renfrow: 21:40

Yes, me and Anna have talked about me possibly hosting a podcast on long QT syndrome, hoping to raise awareness. So I'm very excited about this next chapter in my life. And I'm hoping that we can reach out to some people and save a lot of lives, bring awareness to this share mom's story that they have been diagnosed with long QT it's not a death sentence. You just have to take your medication and take care of yourself and you can live a fairly normal life.

Michael Liben: 22:17

That begs the question for those of us who are less educated on long QT, and I admit to being one of them, just how common is it? How many people are out there?

Jackie Renfrow: 22:25

According to the NHS, long QT syndrome affects one in 2000 people.

Michael Liben: 22:33

Wow, that's a lot of people.

Jackie Renfrow: 22:35

Yes it is.

Michael Liben: 22:36

Think about you're in a place, you see 20,000 people. So that's 10 people, that have long QT right where you are.

Jackie Renfrow: 22:44

Exactly and probably not diagnosed to be quite honest. So that's why people need to know where the closest defibrillator is, and get trained on CPR. I think on a daily basis, as they're doing research, I think they're finding out more and more about this. And I honestly feel like it's more common than what people think. And I strongly encourage people to go to your doctor and not worry about them saying your child does not have a heart defect. have them do an EKG, have them do an echocardiogram. There's so many different heart defects out there. In fact, LeBron James son just collapsed. Now, I would guess, that he probably has some type of a heart defect. But once again, the examinations are digging in there to find this. And so they're just collapsing when they're playing ball.

Michael Liben: 23:41

I want to amplify that because I think a lot of people, we see this on TV every so often. Usually it's in high school at the end of a really good game of football or just falls over. And then they just go, "Oh, yeah, by the way, it looks like he had a congenital heart defect". People, it's not hard to check this. Now these things show up on EKGs, and they'll show up on an ultrasound you can see all of this stuff. And there's so much more that we know now that we knew even when my daughter was born 26 years ago. When my daughter was born at the pediatrician, the first thing she said was be happy she was born now not 20 years ago. Well, it's been 46 years since that 20 years ago. And we really know a lot more. And it's not that hard to find stuff. And it's a very simple test. So people take heed, if you're listening and you have any kind of worry at all, or if you just just have children, it doesn't hurt to go find out. Most of you will find out that there's absolutely nothing wrong. Okay, I promise you that. But but a few of you will, and we'll maybe save somebody here.

Jackie Renfrow: 24:41

And well, and people have to realize the doctor works for you. You don't work for the doctor, you're paying his wages. They'll say the doctor said no, no, don't take no. You be your own advocate.

Michael Liben: 24:53

Right. And I think that brings me into the last question here. Your mother was such a huge part of your life and for so long. I know you really miss her. What do you think you can do to celebrate her now and how much a part of that would be advocacy as well.

Jackie Renfrow: 25:06

Me and Anna had began talking shortly after mom passed. And I think Mom would have just been thrilled. To think about me actually hosting a podcast on a condition that has affected her whole life. They may say since she's been two years old. So mom would have been very proud of that. Anything to raise awareness mom was always on board with and was never afraid to try anything. We did newspaper write ups, I think two podcasts with you. So yeah, she would be thrilled. And I just still talk to her just like she's here and what's going on. And I think she knows what's going on. I appreciate you doing this show to to honor her memory as well.

Michael Liben: 25:53

Well, I'm glad you said that, because I really wanted to say I met her only three times. Never face to face, unfortunately. But it was a joy to speak with somebody who is that alive and that vibrant, and that aware and concerned and active. And I met her seven years ago. So she was in her mid 80s. And doing great.

Jackie Renfrow: 26:15

She was still a young person then.

Michael Liben: 26:17

She was a kid. But she had, I want to say she had the heart of a kid. She had the attitude of a kid, she was completely with it and she had so much to tell and so many stories that I'll never be able to get from her now. But so many wonderful things to tell I wish I had more and more time to just sit there and and go over her entire life and see the world as she had seen it. And you don't get that many opportunities anymore. And I just want to say personally, in for me, and in the name if, if I if I may be so bold of the staff here at"Bereaved But Still Me", she's great lady. She was a wonderful person, great person to talk to. And I would imagine she would be a great friend. And a really good mother. I can see it, a mother, grandmother, great grandmother, I've seen that. I've seen the results of it. And I'm very proud that I knew her even just a little bit and I thank you so much for being on this program with us. Well, she absolutely loved being on your program. She thought the world of you she loved one time I just turned on the podcast and put the earbuds and she's looking at me, "That's me!" and yeah, she really, I don't think she really knew what we were doing, Michael. I don't think she had a clue but she did enjoy listening to it after it was done. Well, she was a wonderful lady. She was a real grand lady. I'm glad I knew her.

Jackie Renfrow: 27:35

Thank you. I sure miss mom.

Michael Liben: 27:39

And that concludes this episode of"Bereaved But Still Me". I want to thank Jackie Renfrow for sharing her experiences and her stories about her mother and her wisdom with us. Please join us at the beginning of the month for a brand new episode. I'll be with you soon. But, until then, please remember moving forward is not moving away.

Anna Jaworski: 28:00

Thank you for joining us. We hope you have felt supported in your grief journey. "Bereaved But Still Me" is a monthly podcast and a new episode is released on the first Thursday of each month. You can hear our podcast anywhere you normally listen to podcasts at any time. Join us again next month for a brand new episode of"Bereaved But Still Me".