A Special Bond between Sisters

Sisters Amy and Jessica Cowin share a special secret. They have both been touched by organ donation and transplantation. Jessica was born with hypoplastic left heart syndrome or HLHS and needed a heart transplant. As if that wasn't stressful enough, Jessica learned that her kidneys were failing and if she didn't get a transplant, she would have to go on dialysis. Leave it to younger sister, Amy, to come to the rescue! Tune in to hear Amy talk about what it was like for her to see her sister go through a heart transplant only to realize that without a kidney, she very well could die.

Transcript

spk_0:   0:05
Welcome to the 11th season of Heart to Heart with Anna. Our theme this season is Heart Warrior siblings, and we have a great show for you today. Today show is a special bond between sisters, and our guest is Amy Cohen. Today we'll meet Amy Discover what it was like to be the younger sister of a chronically ill sibling. The gift she gave her sister and what advice she has for other siblings with the chronically ill sister in Cohen is Jessica Coin's younger sister. Jessica was born with hypoplastic left heart syndrome, and a baby was born. Her healthy, any co founded a company that does on demand security. She does technical front and development, which requires an understanding of design. She is now a member of the tech world, something that has surprised and delighted her in her free time. Amy likes to go to live music shows and spend time with her boyfriend, Graham. She loves photography, architecture, traveling and spending time with her family, friends and her dog. She is creative and loves working on small and large projects. She gets excited at the possibilities of making something with her hands, but also the idea of creating something others finds useful. Welcome to heart to heart with Anna. Amy, thank you so much for having me. I'm excited to have you on a show in my longtime listeners may remember me interviewing your sister Jessica and your mom. I think I interviewed him in season one. Now that I think about it, that was Wow. I know it's been a while. Yeah, well, let's get right to it. Jessica had already had two surgeries by the time you were born. How much do you remember about her heart condition as a little girl growing up. So she had

spk_2:   1:52
already been through a lot by the time I was born in were three years apart. So she had already had two surgeries. By the time I was born, my mom and just can and I went to almost every appointment together. We were always together. My mom thought it would just be easier to have me there. I knew everything that was going on. Even if I didn't understand what was going on, I was always involved. We were all there to support each other. And it was a family issue, not just Jessica's issue

spk_0:   2:25
Did you understand what was wrong with your sister when you were little? Not

spk_2:   2:30
all of it. I knew that she had limitations and her heart would make her tired and she had to goto CIA cardiologists and they would do heart tests on her. I wasn't sure what e. K. G's or that kind of test was when I was little. But, you know, I would be in the room with her and she had some great cardiologists at the time, so they were very involved with keeping the whole family as a unit to know what's going on.

spk_0:   2:59
I think that's wonderful. So you didn't feel excluded even though you weren't the one that was having the procedure,

spk_2:   3:05
right? Right? I felt very included. So it was. It was a family thing.

spk_0:   3:10
Yeah, so? Well, how do you think Jessica's heart defect impacted your relationship with your sister? We've

spk_2:   3:18
always been very close. Of course. We had a normal childhood, normal sibling relationship where we would argue with each other and, you know, pinch each other and fight. But we're always very protective of each other, and we're best friends. So I think because she had the heart defect. You know, we knew it was important in life, and we kind of grew up faster than the average child. And because of that, I think we're closer than average siblings.

spk_0:   3:46
Do you think you're closer? Also, because your parents were divorced and it was you, your mom and your sisters. Like you guys were the Three Musketeers.

spk_2:   3:56
Yeah. Yeah. I definitely think because our mom was so strong, she was a warrior on her own. She was running it through this and, you know, she raised us to be very strong and independent to rely on each other. And, you know, it was just the three of us for a long time. And our grand parents were involved too. But, yeah, just the three of us. We would make the most out of it.

spk_0:   4:21
I feel so lucky that this is one case where I've actually had the good fortune to meet my guest. So I have met Amy a couple times. I met her sister in just the time at her mom. Eileen and we had a wonderful time together eating Chicago style pizza. It was a lot of fun. And if it wasn't cash, we talked for hours didn't wait. And now we could have gone on even longer, except for they had to close the restaurant. But I was so impressed with what a tight unit. Don't think the area. Yeah. I mean, it really is heartwarming to see that. How do you think that Jessica's heart defect impacted her childhood?

spk_2:   4:58
So it was. It came in spurts where she was feeling good, and then she was feeling bad for a while. She think

spk_0:   5:06
he was

spk_2:   5:06
between grade school and junior high that she felt really good. And when she made it to high school, she was feeling okay. I just remember she I wanted to take tennis lessons with one of her good friends. And so they signed up for tennis lessons at the Sports Club, and she could barely make it through her first tennis lesson. Our mom had to go pick her up, and I think she was like, really disappointed in her health. At that point, she knew she had limitations, and she couldn't participate in all the things that her friends did like sports and she loves sports, so that was really hard for her. But she would try and that was really important to her. She's always had a great group of friends and the same friends that she grew up with. She still has now, and they all knew, but they didn't treat her any differently. You know, they watched out for her, and when she was sick, they would come by and see her and spend some time with her. And I know she really loved that. And there were things that she loved that I hated, like sleepovers. Really? Yeah, I just never liked going to somebody's house and sleeping over. My mom always had to come

spk_0:   6:17
pick me up with,

spk_2:   6:19
But no, I just remember Jessica loved to go to movies and in time with her friends, and we both had great birthday parties. She did a lot, but she knew she had some issues that she couldn't keep up with everybody all the time.

spk_0:   6:35
So it sounds like she led a fairly normal childhood until her teenage years. That's when she started to see more of an impact of her heart effect on her health. Yeah, and it sounds like maybe she wasn't even aware of how restricted she was until she tried some bright, like trying to tennis,

spk_2:   6:54
right? I think she didn't even d'oh, um, Jim in high school because she got sick right around sophomore year. She spent a lot of time at home sophomore junior year, and then she had the transplant at 16. So she was home schooled for a while, so she missed out on a lot of normal high school things, and I think that bothered her. But when you don't feel that, I think that kind of takes over your entire life.

spk_0:   7:28
Yeah. Your health.

spk_2:   7:29
Yeah. She spent a lot of time at home, and it was really hard

spk_0:   7:34
when she was home schooled. Were you home schooled with her? No. I wish. Uh, yeah. I mean, when I was at

spk_2:   7:43
school, I would always be thinking about if she was okay. So, I mean, it was hard for me to be in school and concentrate and just try to live a normal life. You know, like my friends. It was different. I think we knew what was important. And, you know, we took life a little more seriously than others.

spk_0:   8:03
You know, the time isn't his like it? Yeah, it's like it also sounds like even though you were the younger sister by three years that you still felt like the caretaker or a Yeah, a caretaker began all your mom is also taking care of her.

spk_2:   8:18
Oh, yeah, Yeah. I definitely felt like that. Even though, you know, sometimes I didn't want Thio. You know, I would. She she would have migraines in it. She needs somebody to rub her head, her back or her neck or whatever. And, you know, my mom and I would kind of take turns doing that, especially because our mom had to work and, you know, she works full time, But she took off a lot of time when she needed thio. It was the two of us kind of taking care of her. And even though just is like the biggest warrior, she would worry about us. And we were worried about her tell. It was just a cycle.

spk_0:   8:56
I think that comes with loving somebody. Yeah. Yeah. And you definitely love your sister. It's so evident with the way you all treat

spk_4:   9:04
each other, we'll be hearing a little bit more about

spk_3:   9:10
this hot industry. We're offering a mechanical hot. And he said, now that I've had enough to give it to someone my father promised me. A golden dressed twirling held my hand and asked me where I wanted to go. Whatever stripe for conflict that we experienced in our long career together was always healed by humor.

spk_4:   9:30
Heart to heart With Michael

spk_5:   9:32
Please join us every Thursday at

spk_6:   9:33
noon, Eastern as we talked with people from around the world who have experienced those most difficult moments. Energy. Dworsky has written several books to empower the congenital heart Defect, or CHD community. These books can 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_1:   10:18
You are listening to heart to heart with AMA. If you have a question or comment that you would like to dress down show, please send an email to Anna Dworsky at Anna at heart to heart with anna dot com. That's Anna at heart to heart with anna dot com Now back to heart to heart

spk_0:   10:36
Here we talked about what it was like as a child living with his sister with a congenital heart defect. But I know that as young adults you all lived together. So can you tell me what it was like living with your sister as an adult? Sure, it was

spk_2:   10:52
fun, but it was hard at first since it was our first time living alone, like away from her mom in this city, just the two of us. It was a little rough at first. Then even though we got along so well, we would fight like any normal siblings. So we would call her mom and complain about each other. Um uh, and we had spent a lot of time together, So we were in college at the time, and we thought it would be fun to say classes together. And so we ended up spending a lot of time in classes together with the same friends. And everybody loved that, you know, we were sisters and so close, but we would fight, but it did get better. We ended up taking classes separate from each other and, you know, hanging out with different people and jobs. But then when we would come back to each other, it would be more fun. It would be like talking about our days and our friends and our jobs. And then we would want to do more things together because we were apart,

spk_0:   11:46
right? Right. And didn't you start out in a loft with an open floor plan?

spk_2:   11:52
Oh, my gosh. Yes. So way found this apartment down by DePaul. It was it used to be an old office building, so all the original offices had open floor plan, so they had built walls to make rooms. And ours didn't go all the way up to this dealing so we could hear each other typing and breathing. And we would argue, Sure about can you type quieter, breathe quieter. And, you know, we would like, throw things over the walls. No at each other, like socks or whatever. It's hard living with somebody for the first time, like just the two of you, and for somebody who's your sister. But your best friend and you're doing everything together. It's It's hard at the beginning. So it was an adjustment period. We got through it and we're living together now, too, in a different place. Thank God our walls go up to the ceiling and we have doors. And when somebody's talking from the other room, it's like Why? What did you say? I can't care you like So it's completely opposite from what we had before,

spk_0:   13:01
right? So funny. I neither reviewer in college. So you don't have right that same stress. I mean, there's that. There's a bit of stress that goes on with being in classes together, making sure Newmar going to show up to class on time. You've done my homework that you're prepared for your test, that you threatened our drinks. I mean, there's a lot of stress that goes, Oh, yeah, with living together and in going to college together, taking the same classes, Was there a little bit of a competitive nature between the two of you? There was a little

spk_2:   13:33
bit, but, you know, I think we especially for taking classes together, we would make study guides together. And, you know, we had double the notes. We made sure we covered everything. So it was funny. We would make study guides and then study them together and quiz each other. So, you know, we would have classes together. So it would be like, What would you write about? No. What did you write about Blank? Did you read the book? I didn't read the book, so it was It was interesting for sure.

spk_0:   14:05
Well, I know that you went through some difficult times when all of a sudden you realize that Jessica needed a kidney. So can you tell us about that time? Yeah, sure. Dusk and I had

spk_2:   14:17
just graduated from DePaul in 2008 and up until then she was feeling pretty good. So we end up graduating at the same time because she took a couple of years off in the beginning, but she was sick. There was one day she just did not feel well, I think it was October, and we went to the emergency room and they ended up running a bunch of tests and they found fluid around her heart. With all her tests, they found her kidney level function was very low. They ended up keeping her running more tests. A resident, I think, came in to our room, and we're just kind of hanging out watching TV. And they're like, Did they tell you you're gonna need a kidney transplant? You know, as a P. And we looked at each other and we're like, What are you talking about? I thought it was just like fluid around her heart. So have they not found that and run all those other tests we would know known it was so dire and it happened really fast.

spk_0:   15:13
Yeah, yeah, What was your response when that doctor said you need a kidney transplant as soon as possible?

spk_2:   15:21
I immediately offered her one of mine, and she was like, No, it's not that serious because she's such a worrier. She's like, I don't want you to go through that pain. You know, I'll just wait for a kidney. And at that point, I think waiting for a kidney was about five years. What was a normal weight time and you could do dialysis, which is not like a way of life, even though they tell you it is, she ended up needing a little bit of dialysis Anyway, it took about three months for all the tests in insurance and everything. But I did offer her kidney, and I ended up giving it to her on April 2nd of 2009.

spk_0:   16:02
What was that like for you, Amy? It was It was

spk_2:   16:07
scary, but I kind of felt more of like, if I don't do this, she's going to die. So I did feel like it was a life and death situation and the fact that her kidney function was so low in such a short amount of time. And, you know, I felt like if I didn't do it, she wasn't gonna be here, so I felt like I needed to do this. She's my best friend. So, you know, even though we pissed each other often, You know, we argue sometimes and but we love each other.

spk_0:   16:39
Right? So what? It all boiled down. You were really to sacrifice a kidney to have your sister.

spk_2:   16:46
Mmm. Mmm. Definitely. Yeah. And you know, you can live with one kidney and people are born with one kidney. I figured I had seen before. And red stuff that sisters are our siblings are the closest possible matches you could possibly have for organ donation, and I was like, Whoa, why not? I didn't even think twice about it. It was just like, Yep, if that's what we need to do, that's, you know, that's what we're gonna d'oh. So

spk_0:   17:13
that's one of the things I love about you. Me? I didn't even think about it. It was just offer

spk_1:   17:19
from the loving part of a very dear sister. Yeah, thank

spk_0:   17:24
you. I just love that

spk_4:   17:32
tonight Forever by the Baby Blue Sound Collective. I think what I love so much about this CD is that some of the songs were inspired by the patient's many listeners will understand many of the different songs and what they've been inspired. Our new album will be available on iTunes. Amazon dot com. Spotify. I love the fact that the proceeds from this CD are actually going to help those with congenital heart defects Tonight forever. I am with origami L jewelry and we personalized luck. It's it has helped me heal so much by having that locket. I've had other friends and customers who have created lockets. They'd love their lockets, and they gift lockets to people who are bereaved or they're celebrating somebody to get your own origami. Our luck it contact Nancy Jensen on Facebook for her website. It's a dancing me dot origami owl dot com way.

spk_0:   18:40
Were just talking about how you gave your sister one of your kidneys. That's quite a gift, not one without potential consequences. So I'm wondering how your mom and dad felt about your decision to donate a kidney to your sister. They were

spk_2:   18:56
supportive. Um, very supportive. My mom offered her kidney, but she had had breast cancer before. So just goes like, No it. No thanks to your chemo kidney, you know, they were supportive of me. They were supportive of Jessica. My mom knew that I would do anything for her, so she supported our decision. But she was nervous, especially nervous wrecks. The day of surgery. When I went in, I think really early. And they took out my kidney and I was on a different floor, different surgery unit than Jessica. So it was like me and then Jessica. And it was a crazy day for sure. But of course, my mom was extremely nervous about it.

spk_0:   19:39
Well, yeah, she has two daughters in Both of them were in the hospital on different floors having yes, major surgery.

spk_2:   19:46
Yeah, she and our dad would. One would be with one of us, and then they'd switch. And then, you know, they made it easier. They put our rooms next to each other. So when we were recovering, I stayed one night, and then Jessica stayed two nights, which was

spk_0:   20:02
kind of crazy,

spk_2:   20:03
because when she had the heart transplant, she stayed for a month in hospital. So yeah, so she was only there for two nights, and then we both went home and we had a nurse come. I think it was every day or every other data. Check our bandages and take care of us. And,

spk_0:   20:20
you know, it

spk_2:   20:20
would just sit there on the couch watching TV together and our mom would. You guys need anything? And we had a ton of people come over. Family and friends see us and congratulate us, and that was really sweet. But it was a crazy experience, for sure,

spk_0:   20:38
I can imagine it's definitely not something that most siblings have experienced, and I think it's sweet that the two of you were living together at the time and they were taking care of each other. Really? In the most loving way that you could possibly take care of your sister. And I know if the situation were reversed that Jessica would have given you her kidney.

spk_2:   21:00
Yeah, for sure.

spk_0:   21:01
You two are so close.

spk_2:   21:03
Yeah, you know, and I had always said growing up because we know she could never carry kids. Because if she did, then she would have to stop taking her anti rejection meds. So I had always said, I'll care Your babies will be your surrogate. And then as soon as I was out of surgery, besides wanting painkillers and seeing it just goes OK, I was. Well, the whole surrogate thing is off the table, not going through that kind of pain. So,

spk_0:   21:28
like, this'll was painful enough. Delivering a kidney for you was too hard, too hard for me to consider giving a kidney. Oh, yeah. Wow. Were you worried that maybe giving Jessica kidney might compromise your own health? No, I wasn't really

spk_2:   21:51
worried about that. I was told by the nephrologist, the kidney, doctor, that if I ever needed a kidney, I would go to the top of the list. But I was never really worried about it. The year after I ended up having like a urinary tract infection, and I had waited too long and I didn't know it was wrong with me. That kind of turned into a kidney infection, which can happen since then. I haven't had any issues I'd seen in the hospital for a couple days and had antibiotics. But other than that, no no issues. They say toh, stay healthy and exercise and eat pretty good. We're both pretty healthy, and she goes to the doctor way more often than I D'oh because she sees her cardiologists and the nephrologist. But everything is going really well.

spk_0:   22:35
Well, having eaten several meals with you, I can tell people that you girls a very health conscious And if I'm not mistaken, you're both vegetarians. Set still,

spk_2:   22:45
Yes. Yeah, we're both vegetarians and

spk_0:   22:47
we have a

spk_2:   22:48
sweet tooth. So of course we'll cookies and cake and all that good stuff. And I really like to bake. And she really likes to cook. So we like to do that kind of stuff together, and it's usually pretty healthy. But of course you got to get in some sugar somewhere. So oh, of course we do that. We've been known to go get some ice cream. Yeah. So you pretty healthy. Do you need to exercise? Well,

spk_0:   23:12
I think that good food choices that you've made probably have contributed to both of you living as healthy a life as you have the exercise. Yeah, and really living in Chicago. I mean, that's a walking city, isn't it?

spk_2:   23:27
Oh, yeah. Yeah. And we love to it. Get out and walk around. Especially when it's not freezing here, walking with our dog, Rocco. And we live right on the lake. So it's beautiful, and there's a really nice path. And there's so many places to go shopping or eat within walking distance. So it is a beautiful city. It toe be walking around.

spk_0:   23:48
Yeah, it really is beautiful. I love the area you live in. Well, yeah, Amy, what advice would you have for other siblings who might have a brother or a sister who also have a congenital heart defect to maybe need a kidney?

spk_2:   24:03
You know, having a sibling is the best gift you could ever have. So I feel very lucky Thio be Jessica's sister. But you know, the most important thing is to be there and be supportive. And if you can donate a kidney to your sibling and you're healthy and you are aware of the risks and it's your decision, then I think you should do it. Jessica and I were adults when this happened. I was 22 she was 25 so we were old enough to make that decision on our own. And of course, our parents weighed in and doctors weighed in and all that. But just being supportive and encouraging and being there, I think being there is the most important thing for your sibling and for you.

spk_0:   24:42
Yeah, right heat. It doesn't just benefit your sibling as if that's not enough, but for you, knowing that not everybody can give a kidney because you do have to be a match. And not most siblings are a match. But like you said, there's probably a much higher likelihood that she'll be a match for your sibling than a stranger would. But to be there I keep hearing this over and over this season that just the fact that the sibling wants to be there wants to be on the phone and, you know, contact them that way. If they can't be there in person, it just means so much to them.

spk_2:   25:20
Yeah, definitely. That's one of the reasons I wanted Thio stay in Chicago and go to school near Jessica or with her Because I felt like And this is just personal that, you know, I would feel awful if something happened and I wasn't here. That's not a reason. Thio, stay with your sibling all the time. But just so happened that we got into the same school. And we are that cloves than being that support for each other was and is super important. And it wasn't just being a caregiver for her. She was a caregiver for me, too, were very supportive of each other.

spk_0:   25:52
All right, it sounds to me like you ladies, your sister and her mom and you, you have prioritized each other in your lives. Yeah, definitely. It's a beautiful thing to see because you don't see anything people nowadays who make their family a priority. Yeah, it seems like especially here in America. Maybe it's different in some of the other countries, but in America were such a fluid society. And take my own Children for example, Joey went to school just half an hour from where we live. Alex went to college in New York City over 1000 miles from home, then yeah, and then before I knew it, Joey moved to Florida, which was 1000 miles in another direction. Yeah, it's very common for siblings, too. Go their ways as they find and make them right in the world, and that's fine, too. But I'm really happy now because both of my sons are back in Texas. Oh, good, yeah, But once again they've made the decision to prioritize family bond. I think sometimes being out on your own and not having that support and just not being there for each other, it kind of makes you realize how important that is, right? And I think that

spk_2:   27:03
has to do with grew up with her having heart problems, so her health was a priority, and being together was a priority and feel like when you grow up and you don't have those issues or those ties, it's different. You just end up going your separate ways, and I know people who are not close to their siblings, and that makes me sad. You know, when people point out to us all the time. Oh, it's so great that you guys were so close and you live together. That's so cute, huh? Yeah. So we love it. Yeah, we definitely love it. Yeah,

spk_0:   27:32
okay. What advice do you have for parents who have one child who wants to help a sibling? What can the parents do to give support to both of their Children? I think

spk_2:   27:46
telling and showing your Children that they're both important to you and to their sibling, treating them as equally important. And no one is more deserving on the other. I think that's really important. And not to make anybody feel guilty if they end up not donating or wanting to donate. I mean, it's a difficult situation, especially if your kids are younger. I think just being there and being supportive and encouraging of both your Children is super important.

spk_0:   28:09
How long do you think it really took you to recover from that operation?

spk_2:   28:15
I drove after two weeks, but had a weird sensation. I couldn't lay on my right side, so I felt like all of my organs were falling over. It was bizarre. So I mean, it took a couple months to, like, fully recover, but it went pretty fast. Definitely worth it.

spk_0:   28:31
Yeah, Yeah. Oh, yeah. I can attest to that. Having seen you girls together, that it was definitely worth it because you two love each other so much. I can't imagine meeting one of you without the other one being there. You girls pick me up in the airport together. We went out thio. We did everything together. So yeah, I did. That was seem really, really strange if if she wasn't there, you know? And that, especially since that was something that you could do. And apparently it didn't compromise your health and gets made you girls closer than ever. Oh, yeah. Is it the kind of thing that if you had it to do over again, you would? Yeah. I

spk_2:   29:10
definitely would without question, do it again. She's worth it. Even though she's a pain in my

spk_0:   29:17
ass, sometimes she's working. I just love it that you have a typical sister relationship. On top of that, a typical experience isn't bad. Yeah, really enough. You've had an extraordinary life with your sister. And yet he is also very ordinary Yeah.

spk_2:   29:36
Yeah. Humor is a huge part of it. So, you know, like joking around and laughing is medicine in itself.

spk_0:   29:43
Absolutely. Laughter is medicine in and of itself. Thank you so much for coming on the show today. Amy. You were a complete delight.

spk_2:   29:52
Oh, thank you so much for having me. I loved it Any time.

spk_0:   29:56
Amy. Before we go, I have to give you a chance to plug your sister's book. Okay.

spk_2:   30:02
If you want to read about Jessica's patient experience, you can. It's called The Hearts of a Girl by Jessica Carmel. And you can find it on Amazon or any bookstore near you.

spk_0:   30:12
Great. Thank you so much. Yeah, you're welcome. Well, folks, that concludes this episode of heart to heart with Anna. Thanks for listening. Please come back next week at noon or any time afternoon, because this is a podcast and it's available 24 7 Until then, please find a follow our show on iTunes. And remember, my friends, you are not alone.

spk_1:   30:34
Thank you again for joining us this week. Way Hope you have been inspired on. Empowered to become an advocate for the congenital heart defects community, heart to heart with Anna with your hose down. Jaworski can be heard every Tuesday at 12 noon Eastern time.

spk_5:   31:00
This program is a presentation of Hearts Unite the Globe and is part of the Hug Podcast Network Bar Tonight The Globe is a nonprofit organization devoted to providing resource is to the congenital heart defect community to uplift on power and enrich the lives of our community members. If you would like access to free Resource, is pretending to the CHD community. Please visit our website at www dot hug dash podcast network dot com for information about CHD, the hospitals that treat Children with CHD summer camps for CHD survivors and much, much more.