Celebrating 60 Years with a Complex Heart

Born in 1960, Kimberly Russell was diagnosed as a "blue baby" and wasn't expected to survive infancy. Kimberly Russell's care for her complex heart was always just a step behind what was necessary to keep her alive. In 2020, Kimberly is preparing to celebrate her 60th birthday with a complex congenital heart defect and she wants to give back to the community which has honored her life. As an author, speaker, and ambassador for the CHD community, Kimberly is holding contests, raising awareness, and showing by example how to enjoy every day of one's life. To take part in Kim's contests in July 2020, visit her Facebook page here: https://www.facebook.com/Kimsheartbeat/

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Transcript

Kimberly Russell : 0:00

There was a lot of praying, but this time there was no threat of losing my life.

Anna Jaworski : 0:14

Welcome to Heart to Heart with Anna. I am Anna Jaworski, and the Host of your program. Today's show is "Celebrating 60 Years with a Complex Heart" and our Guest is Kimberly Russell. We'll start today's program by learning a bit about Kimberly and how she's been a pioneer in the world of congenital heart defects. In the second segment, we're going to talk about a special contest that you can take part in and in the final segment, we'll find out what Kimberly is doing now and what advice she has for other aging Heart Warriors. Kimberly was born in 1960 as a "blue baby." She had Blalock-Taussig shunts in 1960 and 1965 and a central shunt with a bi-directional Glenn in 1992. She was 32 years old before she had any heart problems. As a speaker at Children's Healthcare of Atlanta, Kimberly realized that as an adult with a complex congenital heart defect or CHD, her story could bring hope to patients and families. At her grandmother's behest she wrote a book entitled "In a Heartbeat: A Baby's Heart, A Surgeon's Hands, A Life of Miracles." She also started a group for Georgia adults with congenital heart defects or CHDs. She served on the Adult Congenital Heart Association or ACHA Board of Directors and was an ACHA Ambassador in Atlanta, volunteering at Children's Healthcare of Atlanta. Welcome to "Heart to Heart with Anna," Kimberly.

Kimberly Russell : 1:35

Thank you, Anna. Thank you for having me. I'm very excited to be here.

Anna Jaworski : 1:39

Let's talk about you being born as a "blue baby." What does that mean? What was your heart defect and tell us about your first surgeries?

Kimberly Russell : 1:49

Way, way back in those days, back in the 1960s, "blue babies" were being born and dying. "Blue babies" were born with depleted oxygen levels to the point that they were even dark purple. The Blalock shunt was the only surgery available for that. And they just saw "blue babies" so they did the surgery. Later in life though, my complete title is double inlet, left ventricle with pulmonary atresia and chronic cyanosis. Meaning that my right ventricle may or may not be present. But either way it's not involved in pumping. It doesn't do anything. So, the doctors thought I wouldn't live to be a month old, sent me home. And three months old, I would start purple but I had had the surgery and at a 10% possible living my parents, were just ecstatic when I came out alive and pink.

Anna Jaworski : 3:02

Umm Hmm. So they only gave you a 10% chance of survival with that first surgery?

Kimberly Russell : 3:08

With the first one? Yes. Because they've been doing it for six years.

Anna Jaworski : 3:12

Yeah. Isn't that amazing? I mean, you really are a pioneer; you really were at the forefront of modern medicine as far as congenital heart disease.

Kimberly Russell : 3:23

Yes. And I'm going to talk a little bit about that later because people, including the doctor who would always talk directly to me, my mom's listening, but they were really, you know, wanted me to be involved. And they would always shake their head and say, "Kim, you're a true pioneer." And I knew what pioneer meant. But I had no idea until several years ago what that really meant and that, honestly, that my condition could be fatal.

Anna Jaworski : 3:53

Really.

Kimberly Russell : 3:55

So I grew up and when I got three or four, I was having more trouble with fatigue and all. And I started turning blue again. And so I got to a point where I would have to walk two steps, squat. Stand up, two more steps, In the squatting I learned was a way to pump all of your blood up to your pulmonary system, so that you would get more oxygen out to your body.

Anna Jaworski : 4:29

Yeah, I remember reading about this. People will call them "tet spells," because people with tetralogy of Fallot would often do that as well. So when you said you were a "blue baby," I was thinking you were going to tell me you were a tetralogy of Fallot baby. I can't believe you had double in the left ventricle. That is really amazing. So here you are, you're almost five. They're seeing that this little Blalock-Taussig shunt that they put in is not going to be sufficient. So they decided to do another one?

Kimberly Russell : 5:00

Yes.

Anna Jaworski : 5:01

Do you remember that, Kimberly? Were you old enough to remember?

Kimberly Russell : 5:06

I remember the days leading up to my surgery. And I remember that people would stop me and ask, "Have you been eating purple popsicles?"

Anna Jaworski : 5:20

Oh, my goodness

Kimberly Russell : 5:21

Or "Are you okay?" And my mom would always explain to them, so I was very purple.

Anna Jaworski : 5:28

Wow.

Kimberly Russell : 5:29

But the surgery was delayed as long as possible because this time tjhey only gave me a 50% chance of living.

Anna Jaworski : 5:36

But that was so much higher than what they gave you the first time that that must have been almost a little bit of a relief that they seemed more confident that this time that would work. And to be fair, they had been doing this surgery for another five years, so they had a little bit more experience with it. Do you remember being in a hospital Kimberly?

Kimberly Russell : 5:58

I do. But the only thing I remember for that surgery was that my pastor would come and he would always bring me - which people don't know about this now, but the little white, waxed paper, and you would pencil it in and the picture would show up.

Anna Jaworski : 6:19

Oh my goodness! I remember that. I was born in 1963. So I'm of your generation. And I remember those. Yes,

Kimberly Russell : 6:27

They were so fun.

Anna Jaworski : 6:28

They were fun.

Kimberly Russell : 6:30

And then the other thing I remember is that I played with a little boy who had lost his arm to a wringer washer. And there was a little girl who sat in a high chair and made no noise ever. And if somebody approached her gently (a male) tears would just fall but she would not make any noise. And I've always wondered what happened to her.

Anna Jaworski : 6:58

Yeah. Wow. Wow. So you were in a children's hospital it sounds like and you were in a ward that had children with all kinds of problems. Nowadays, children like you would be in a ward just with other heart patients. But that wasn't the case when you were a little girl.

Kimberly Russell : 7:17

No, no, it wasn't. Just because we were few and far between, because some could have surgery. But still, the majority of heart patient passed away and a young age

Anna Jaworski : 7:30

Right. Now, how aware were you of your heart condition, Kimberly? I mean, you had to have had a pretty impressive scar on your chest, right.

Kimberly Russell : 7:41

I was aware, because my doctors always talked to me. There was not a time where I didn't know about it. And besides that, I couldn't run, I couldn't ride a bicycle, just the higher exertion things that children do. And I don't know if you remember from my book. I had my surgery when I was four. And I had missed out on a lot of things that three-year-olds do because I just couldn't function. So my mom, when I got home, let me do anything. You know - all my toys, pull pots and pans out. I was having a heyday, and then one day she heard a noise coming from my brother's bedroom, and she wouldn't there and found me swinging on the curtains. That was the end of my fun. The doctor had told her she could spank me. Just set me on the couch until I'm pink. Yeah,

Anna Jaworski : 8:41

(laughter) I love it. Well, you said that you were 32 years old before you really started having heart problems. Of course, you don't remember those early heart problems like your mama does.

Kimberly Russell : 8:53

Right.

Anna Jaworski : 8:53

Tell me what happened when you weren't 32.

Kimberly Russell : 8:56

So at the time, I was working as a division manager for the country's best yogurt. And slowly I was just having trouble keeping up and shortness of breath and fatigue to the point that I had trouble traveling. And it got to the point where I had to ride in a wheelchair for long distances. My husband's like, "Maybe we should go visit the cardiologist." At that time. I came to Atlanta for one night congenital care. And I went in and the doctor looked at me, he goes, "Are you okay?" "Oh, I'm fine." He said, "Kim, you're in a wheelchair!" "Oh, I know. But just for long distances." He's like, "No. We need to figure out how to help you. You need another surgery."

Heart to Heart with Michael : 9:52

"Texas Heart Institute were offering us a mechanical heart, and he said, "No, Dad, I've had enough. Give it to someone who's worthy." "My father promised me a golden dress to wear. He held my hand and asked me where I wanted to go." "Whatever strife or conflict that we experienced in our long career together was always healed by humor." "Heart to Heart with Michael," please join us every Thursday at noon Eastern as we talk with people from around the world who have experienced those most difficult moments.

Anna Jaworski : 10:21

This content is not intended to be a substitute for professional medical advice, diagnosis or treatment. The opinions expressed in the 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.

Rejoiner : 10:42

You are listening to "Heart to Heart with Anna." If you have a question or comment that you would like addressed on our show, please send an email to Anna Jaworski at Anna@hearttoheartwithanna.com. That's Anna@hearttoheartwithAnna.com. Now, back to "Heart to Heart with Anna."

Anna Jaworski : 11:01

So right before the break, Kimberly, you were saying that you came in in a wheelchair and your doctor said, "We're going to have to do something." What did he decide needed to be done?

Kimberly Russell : 11:13

At that time, there was not a true adult congenital heart clinic in Atlanta. At that time, there was a doctor - it's actually the doctor that brought the heart cath to Emory. He sat down with me and told me what he thought was going on, and sent me up to Mayo Clinic to have them look at me. Now I'm going to go back 16 years because there's a little bit interesting information before we get there. When I was 16. I was doing so well that Children's Healthcare of Atlanta sent me over to Emory, to have them check me out because there was no way I could have what I have. And be doing so well. I mean, I had two jobs. I was senior in high school, all that. So everybody's like, "Well, I don't find anything wrong. Maybe we need to send her to Mayo." And I went to Mayo and they said, "There's nothing wrong; as long as nothing's broke we won't fix it." So that was pretty cool. Then I may have, when they told me it was time for my third surgery. And originally they told me I was going to take down my two Blalock shunts and put in a central shunt. And I was very nervous about that because I'd been living on those two shunts for so long.

Anna Jaworski : 12:38

Yeah,

Kimberly Russell : 12:38

You know it kind of... it was hard. And so the doctor came and visited me the night before and he goes, "Okay. Now we're going to do a central shunt and we're going to do a bi-directional Glenn. Normally these are two separate surgeries, but I looked and looked and looked at your anatomy and I feel very confident that I can do them both at one time."

Anna Jaworski : 13:03

Wow.

Kimberly Russell : 13:04

Of course, I cried again because now they're switching what they're going to do...

Anna Jaworski : 13:08

Yeah, at the last minute.

Kimberly Russell : 13:10

Yeah, I only had 12 hours to cry.

Anna Jaworski : 13:12

Had you ever heard of a bi-directional Glenn before that?

Kimberly Russell : 13:15

I had not.

Anna Jaworski : 13:16

So that makes it kind of scary.

Kimberly Russell : 13:19

It is because I didn't know what that was. But if he was confident... and he's at Mayo Clinic, it's gotta be good, right?

Anna Jaworski : 13:24

Right. Right. At least you knew you were in excellent hands.

Kimberly Russell : 13:28

Yes. And my cardiologist there is very specific when she picks surgeons and doctors from other departments. She said, "I feel very confident that if he thinks he can do it, it'll be okay."

Anna Jaworski : 13:40

Umm Hmm.

Kimberly Russell : 13:41

Now whether or not she really thought that, I'm not sure, but it really brought me comfort

Anna Jaworski : 13:45

(laughter) I have a feeling for that time, she did feel as confident as she did and you had done so well for so long, you were probably the ideal patient.

Kimberly Russell : 13:56

It was different

Anna Jaworski : 13:59

You went in knowing that now you're going to have two different procedures. What happened?

Kimberly Russell : 14:05

There was a lot of praying, but this time, there was no threat of losing my life.

Anna Jaworski : 14:14

They didn't talk about your mortality?

Kimberly Russell : 14:17

So I'll have to tell you, I did not even realize that that was a possibility until I was like... I'm going to say, 22 to 25... riding in the car with my mother and my family. And my dad was talking about his uncle that had all these heart problems. And my mom turned around and looked at me and said, "Kim, you're probably gonna outlive all of them." Gotta be careful what you say because that really kind of hit me hard. I had never thought about that.

Anna Jaworski : 14:54

Wow.

Kimberly Russell : 14:57

It did not bother me. It didn't weigh me down. I don't drag it with me, but it was just kind of a startling realization.

Anna Jaworski : 15:05

So you had your procedure?

Kimberly Russell : 15:08

Yes.

Anna Jaworski : 15:08

How did it go?

Kimberly Russell : 15:11

It went well. He was able to do both. I was in the hospital, I believe less than a week.

Anna Jaworski : 15:17

Wow.

Kimberly Russell : 15:18

And I had traveled by car from Michigan to Minnesota, which is about 750 miles. I had to travel back with this car, and that was a little rough. You got your pillow but

Anna Jaworski : 15:37

The road wasn't quite as smooth as you would wish it to be. I'm sure you felt every pothole, didn't you?

Kimberly Russell : 15:42

I did.

Anna Jaworski : 15:43

Oh my goodness.

Kimberly Russell : 15:44

I know

Anna Jaworski : 15:44

Now what time of year was this?

Kimberly Russell : 15:47

It was December 1st was my surgery.

Anna Jaworski : 15:49

Mm hmm.

Kimberly Russell : 15:50

1992.

Anna Jaworski : 15:52

Okay. Wow. Okay. That's a long car trip to take after you've just had open-heart surgery.

Kimberly Russell : 15:59

It was but I got home and there were things I would have liked to do at Christmas, of course. But it was kind of fun to be on the other end... people came to carol. People brought baskets of foods and fruit. Usually I'm the one doing that. And it made me realize how thankful those people are that you do that for them.

Anna Jaworski : 16:22

Wow. So it was a chance for people to give back to you.

Kimberly Russell : 16:26

Yeah.

Anna Jaworski : 16:26

And it made you appreciate being on the receiving end for a change.

Kimberly Russell : 16:32

Yes,

Anna Jaworski : 16:33

That is so cool.

Kimberly Russell : 16:34

Yeah.

Anna Jaworski : 16:35

Well, so here we are. And you're about to be 60.

Kimberly Russell : 16:39

I am.

Anna Jaworski : 16:40

That is just remarkable. Do you know many other Heart Warriors who are the same age as you?

Kimberly Russell : 16:47

I know a couple that are in their 30s. I know a single ventricle, which is not exactly what I have. And she is I think 63 but other than I don't. And I was told a few years back, I don't know if it's true, but like, I'm one of 100 in the United States.

Anna Jaworski : 17:11

It's just amazing to me. So now you've decided to have this special contest. Tell us about the contest and why we're celebrating this milestone.

Kimberly Russell : 17:21

Okay. I was talking to you a minute ago about giving back. So let me go back a little bit to when I wrote my book. My book gave me the opportunity to travel up and down the East Coast at hospitals speaking to different groups. I started with my Atlanta group, all these things. And I have met so many generous people, and people that have touched my life, that I wanted to do something for them on my birthday. And it took me forever, actually, until last week, to decide that I wanted to do this contest. I have a roomful of products and I wanted to have a give-away. You can go to Facebook it is Kim, Apostrophe S. Space heartbeat. If you go to my Facebook page and like it, you'll get all the posts. Every day there's a contest for different things. And sometimes it's for three people. Sometimes it's for five, sometimes it's for one.

Anna Jaworski : 18:22

And I'll put a link in the Show Notes to your Facebook page to make it easier for people to get there, Kim. Sometimes people are exercising while they're listening to the podcast and this way they can just read the Show Notes and click right over there. So all they have to do is 'like' your Facebook page and it automatically enters them into the contest? I thought I saw one where they have to answer questions.

Kimberly Russell : 18:45

If you 'like' my page Kim's Heartbeat, the contest and announcements will show up on your page. I decided that, to give back, I was going to give away products for the whole month of July. Because my birthday is July 8th, and there'll be contests every day. And that will be July of 2020. So I hope you get to join us. That's been a lot of fun. Sometimes we have questions. It's just very random. Part of my... part of my purpose, too, is to put a little bit of heart education out there, and maybe some helpful hints kind of thing.

Anna Jaworski : 19:26

Yeah, I saw the other day that you had three questions. And they dealt with the Adult Congenital Heart Association and the Children's Heart Foundation. So you're doing a great job of raising awareness of other organizations that are out there to help people with congenital heart disease.

Kimberly Russell : 19:41

Thank you, because that really is what I want to do. I just want people to be engaged and know... and even if you are a parent of a small child, they're going to be older one day, so the information is good for anybody to think about or take note on.

Anna Jaworski : 19:58

Mm Hmm, well, what do you think has enabled you to live such a long and happy life, Kim? What do you attribute your success to?

Kimberly Russell : 20:05

You know, the only thing I can think of is God's grace, probably because I have a chronic illness maybe. I just have a drive to do as much as I can. And yes, I mean, 30 years ago, I could do a whole lot more than I can now. But I do what I can with what I have. Having positive people, having my parents always being a support. That is very key.

HUG Store : 20:35

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HomeTonightForever : 21:13

Baby Blues Sound Collective. "I think what I love so much about this CD is that some of the songs were inspired by the patients" "Many listeners will understand many of the different songs and what they've been inspired by. Our new album will be available on iTunes, Amazon.com, Spotify..." "I love the fact that the proceeds from this CD are actually going to help those with congenital heart defects." "Enjoy the music." "Home. Tonight. Forever."

HUG Info : 21:51

Heart to heart with Anna is a presentation of Hearts Unite the Globe and is 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.congenitalheartdefects.com for information about CHD, the hospitals that treat children with CHD, summer camps for CHD survivors and much, much more.

Anna Jaworski : 22:26

Kimberly, before the break, we were talking about celebrating 60 years as an adult with a complex CHD. But let's talk about your legacy now. First of all, in your bio, we talked about how you had written a book and you just mentioned that again a few moments ago, but tell us about how writing that first book has affected your life.

Kimberly Russell : 22:47

Oh, my goodness. I had no idea what I was doing. I didn't take any classes. And I think it worked for this story just because it was my life story. And the first section, of course, was my mom's story. But I wrote it. And when I sent it to a publisher, they sent it back and said, "We would like to print it. But we need you to heighten the drama here, here and here." And the parents and grandparents who are going to read it do not need more drama,

Anna Jaworski : 23:25

That's for sure.

Kimberly Russell : 23:26

I decided to self-publish.

Anna Jaworski : 23:28

Because they wanted you to Hollywood-ize it or make it more than what it was. That's what made you decide to self publish instead of going with a traditional publisher?

Kimberly Russell : 23:39

Yes,

Anna Jaworski : 23:39

I had this same exact experience.

Kimberly Russell : 23:42

I wanted this to be what I wanted it to be and I didn't want to embellish or anybody else putting something in.

Anna Jaworski : 23:49

Yeah, I felt like our stories were quite dramatic enough. Thank you very much. Wow,

Kimberly Russell : 23:57

I have to say that from that book, as you were asking, I got speaking engagements at hospitals up and down the East Coast, and some in the Midwest. And of course, as I stepped out there and spoke, more people found out about me. And parents would email me with questions. I had one lady that I will never forget. She was from California. And she had gotten my book by mistake. She wrote me and told me, "Thank you so much." It almost makes me cry. "Because parents are so focused on taking care of the child, that the grandparent gets left out. And they don't really understand what's going on." And so my book laid it out for her a little more, so that she understood why there's no time for anything else. And that just touched me very much. I was very appreciative of that.

Anna Jaworski : 25:00

Yeah. Yeah. It sounds like the book opened lines of communication for you that had not been opened before.

Kimberly Russell : 25:08

Yes.

Anna Jaworski : 25:09

Tell me what project you're working on now, Kimberly.

Kimberly Russell : 25:11

I'm kind of taking a little twist. Still doing my contest. I still volunteer for Children's Healthcare of Atlanta. We were kind of counselors at a virtual camp last week, with

Anna Jaworski : 25:23

Oh, my goodness!

Kimberly Russell : 25:25

put on by Children's Healthcare of Atlanta and the campground we usually go. And that was very fun. So I get to do all those kinds of things.

Anna Jaworski : 25:32

For people who are listening to this and it's way past the year 2020. We are in a pandemic right now. Right now the coronavirus is raging and so we're having to be a little bit more creative, aren't we, Kimberly?

Kimberly Russell : 25:46

Yes. So we had the virtual camp, kids got to watch videos on TV and actually interact with what they were and then we had snack chat. So when the kids were eating snack, we hang out with them, told jokes, all that kind of stuff. But my main focus right now is writing a fiction novel. I think it's gonna be good. And then I'm also mentally working on an update from my last book, just kind of a sequel. People ask me, "We want to know what's going on." So, okay. So I'm working on that.

Anna Jaworski : 26:21

You have a lot of experience that is unique. Like you said, if you're only one of about 100 people who are your age living with a complex congenital heart defect, there are a lot of people who want to know, 'Well, what's next?'

Kimberly Russell : 26:39

Yeah,

Anna Jaworski : 26:39

There aren't a whole lot of studies. So tell us what advice you have for other aging adults with complex congenital heart disease.

Kimberly Russell : 26:47

First and foremost, put yourself out there, among other families in any different way. There are many ways you can find on Facebook. You can find, you know, sometimes meetings in the Atlanta area. Those people need your help, because they may have a child just like you and how comforting it is for them to know that you're an adult, and you're doing fine.

Anna Jaworski : 27:17

Absolutely.

Kimberly Russell : 27:19

Yes. Don't ever be afraid to ask your doctor anything. Number one, they have confidentiality. So if you're in a situation that is extreme, and you have to know what to do, your cardiologist is a great place to go. They'll tell you what to do, and they'll help you handle whatever the situation is.

Anna Jaworski : 27:46

Yeah, it seems to me like a lot of us families living with complex congenital heart disease, the cardiologists is part of their family. It feels like an extension of our family, doesn't it?

Kimberly Russell : 27:57

Yeah.

Anna Jaworski : 27:58

Well, I am excited for you, Kimberly, Happy 60th birthday to you, my friend.

Kimberly Russell : 28:05

Thank you so much for having me. We've been talking about doing this for a while and have trouble getting it together so thank you so much!

Anna Jaworski : 28:13

Well, it was the perfect time to do it. Congratulations on 60 years with a complex heart. You are a true inspiration, a true pioneer. And I hope you'll come back on the program. And maybe you could tell us about that fictional book. I'm just curious. Will one of the characters have a heart defect?

Kimberly Russell : 28:30

Possibly,

Anna Jaworski : 28:31

Possibly. Okay, well,

Kimberly Russell : 28:32

I have to work out the logistics. I have it in mind, but I'm not sure how it's going to work so

Anna Jaworski : 28:37

Okay, well, thank you so much for coming on the program today. Kimberly.

Kimberly Russell : 28:42

Well, thank you and you take care.

Anna Jaworski : 28:45

I feel very lucky, my son has you, and so many of the other pioneers, to thank for having the full, rich life that he has. He's only 25 (he'll be 26 this year) and it's amazing to me what a quality life he has and it's because of people like you who were not afraid to live their fullest life and to put themselves out there like you said. So thank you again. Happy 60th birthday. That concludes this episode of Heart to Heart with Anna, my friends. Thanks for listening today. If you've enjoyed this episode, why don't you leave a review for us on Apple podcasts or YouTube, anywhere where you're listening to the podcast... and remember my friends, you are not alone.

Unknown Speaker : 29:29

Thank you again for joining us this week. We hope you have been inspired and empowered to become an advocate for the congenital heart defect community. Heart to Heart with Anna with your Host Anna Jaworski can be heard every Tuesday at 12 noon, Eastern Time.