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Heart to Heart with Anna
Transplant Sisters: When a Family Faces Heart and Kidney Transplant Issues
August 13, 2018 Amy and Jessica Cowin
This episode features returning Guests Amy and Jessica Cowin. Amy Cowin was featured in Season 11 of "Heart to Heart with Anna" in the Heart Warrior Siblings series. She is a heart-healthy sister. Jessica Cowin is Amy's older sister who was born with hypoplastic left heart syndrome and was featured in Episode 3 of Season 1 of "Heart to Heart with Anna." Jessica has had both a heart and kidney transplant. In this program, Jessica and Amy will talk about Jessica's early health issues, her transplants, what they are doing now to help medical science and how their experiences are helping them now to cope with their mother's recent health issues.

Episode Transcript

Anna:0:08Welcome to the twelfth season of Heart to Heart with Anna. Our theme this season is Organ Donation and Transplantation. I'm Anna Jaworski, your host, and we have a terrific show for you today. Today's show is transplant sisters and our guests, our sisters, Amy and Jessica Cowin. They are two very dear friends of mine and my loyal Listeners will remember Amy because she just came on the show last season to talk about growing up as a heart warrior sibling and those of you who have been with me since the very beginning, you will remember Jessica because she was actually on the third episode of Heart to Heart with Anna. Amy Cowin is Jessica Cowin's younger sister and Jessica was born with hypoplastic left heart syndrome or HLHS. Amy was born, heart healthy. We're going to get into the nitty gritty of all of Jessica's health conditions in the first segment and then in the second segment we will talk with the ladies about growing up around transplantation as a regular part of life. And in the final segment, I'm going to be talking with these sisters about Jessica's book, The Hearts of a Girl, their mother's health, and in the end we'll ask advice that they have for others who are in the same situation that they have faced themselves. So welcome back to Heart to Heart with Anna. Amy.

Jessica:1:24Thank you. I'm happy to be here.

Anna:1:26And welcome back to Heart to Heart with Anna, Jessica.

Jessica:1:30It's so nice to be back. Thank you for having me.

Anna:1:33I am so happy to have these two lovely sisters on my show. So thank you ladies for coming on the show. This is going to be so much fun today. Jessica, since you're the oldest, I'm going to go ahead and start with you. And I said in the opening that you were born with hypoplastic left heart syndrome or HLHS and I think for the rest of the show, let's just say HLHS because that's a little bit easier. Can you share with us briefly what your surgical journey was like for you from infancy to high school?

Jessica:2:02I was born with HLHS. My parents didn't find out until I was four days old when I was actually heading into my first open-heart surgery. From then, that was the Fontan, I needed three subsequent surgeries. The fourth of which I was 13 and it was a revised Fontan. Unfortunately, three years after that, I just turned 16 and I needed a heart transplant because my heart was in congestive heart failure. I had a pacemaker put in at 13 and it just wasn't sustaining me.

Anna:2:40Right. So it sounds to me like your mother carried you like she would any child thinking that you were going to be born perfectly healthy and instead after you were born, your mom found out that you had a congenital heart defect. Is that right?

Jessica:2:59Yeah, that's right. Because at that time I was born in 1983 and they had no way of testing to find out if there was a heart condition. There was also no way of figuring out heart health at that point in time. I mean, I know now they can tell maybe like 20, 23 weeks if the babies have heart conditions now. I mean, my mom had a sonogram and nothing had shown up irregular on the Sonogram and all her normal checkups and that's all she could do at that point in time. I think the awareness and the knowledge of, oh, let's check to make sure everything is healthy, including a baby's heart is so normal now. They just didn't do it back then. Yeah, she didn't find out until I was born and my cardiologist that I had had from four days old until I was 16 said so there's something wrong and sure enough after he had come in the second day after I was born and was like, we're in surgery two days later. Unfortunately that was the only way that my mom found out.

Anna:4:14So did you have the typical Norwood procedure way back then?

Jessica:4:18I had the Fontan. I did not have the Norwood because I had a revised Fontan 13. I had a patch when I was five, I believe, put in and I know I got like a little heart pillow for that when you have a patch done and now it's part of the Fontan, but I didn't have the Norwood procedure. I know a lot of the babies now are having Norwood. I had just gone through the Fontan. I know it's a combination now.

Anna:4:56Right, my son was born in 10 years after you, in the 90's, he was born in 1994 and he did have a modified Norwood, but then he did not have the bi-directional Glen like you. They just combined it. He went straight to the Fontan and then just like you, he ended up having to have a modified Fontan. I think the important thing for people to know is that you had to Fontan revision, but even after the revision, even after the pacemaker, you had what's called a failing Fontan. Fontan was not able to help you sustain life in a quality way.

Jessica:5:35Right. It helped for a while, and I know it all depends on the person. It works for some people wonderfully. Some adults are still living with HLHS and unfortunately, but also fortunately mine didn't last me past 16, so it is possible but in our case, not.

Anna:6:00Yeah, it was a really rough time for you, I'm sure because you were in high school and high school is difficult enough, but that having a failing Fontan, physiology and if you all want to have a better idea of what Jessica was facing, you have to get her book The Hearts of a Girl. She does such a good job in The book describing what her life was like. Get the book The Hearts of the Girl and then you'll have all those questions answered. But let's go to Amy now and talked to Amy for a couple minutes. Amy, you're three years younger than Jessica, so that meant that she had already had two surgeries by the time you were born and only two years old, so you probably don't even remember any of that. But I know from our show last season that you did understand a lot more about Jessica's surgery when she was in high school. Jessica got that call that a heart was available for her, when she was 16 and you were 13. So share with us what you remember from that day and that chapter in your life.

Amy:7:01Jessica and I have always been really close and we were doing something. I remember like it was yesterday. We were sitting up in Amy's room watching some sort of trauma life in the ER show.

Anna:7:17You're kidding! Oh my gosh!

Amy:7:21No, I'm not, no. Like, we were on the bed together. Yeah. Hanging out, watching some trauma hospital show. It was a Saturday night.

Anna:7:31Oh my gosh. Okay. So there you were. Obviously this is going to be really fresh for Jessica because it happened to her and she just wrote a book about it not long ago, so I'm sure it's really, really fresh. And you were only 13, right, Amy? So maybe it's not quite as clear for you?

Amy:7:48I remember what happened after that. We got the phone call and kind of like frantic and Jessica was supposed to have to Make a Wish the next weekend or something or two weekends and she said I'm not going to the hospital.

Anna:8:03Oh no!

Amy:8:06So I promised her we would go horseback riding after she had the transplant and I do not like horseback riding. That got her in the car.

Anna:8:17Oh, you're a good sister.

Jessica:8:19Well, long story short. I'm sorry to interrupt again. Just to clarify, we had been on a trip where we were horseback riding. Amy's horse freaked out so it scared her and I had liked it. Since then I've refrained from wanting to go horseback riding because I don't want to hurt the horses, but that's how that happened.

Anna:8:39Oh, goodness. So Amy put aside her own fears and traumatizing experience with the horse because she knew that that would motivate you and get you into the car. Okay, so tell me some more, Amy.

Amy:8:53It was a long car ride, it felt like because we were trying to call our grandparents and they weren't home, but our great grandma was. We didn't want to exactly tell her what was happening and freak her out. We went to the hospital. My Mom's friend Barbara met us there and our uncle met us there. They got Jessica prepped and we all walked to the operating room and said goodbye and then it was a really long night. Like 12 hours later they came out and said she was doing okay and then not exactly sure like how long after that we saw her, but it was a really long night in the waiting room. So my mom and I were cuddled up together and trying to sleep off and on and very worried and scared, obviously. Then she was in the hospital for a month after that. I don't know. I was there a lot. I missed a bunch of school, which was great for me.

Anna:9:52(laughing)

Amy:9:52Well anyway, it was just a very crazy time. Very dramatic and people don't know what you're going through and it's hard to explain and nobody really understands at that age, what you're going through and it was a difficult time. But good, also.

Anna:10:12Right. One of the things that I've appreciated getting to know you ladies and I feel really blessed because I don't have this situation with all of my guests, but I've actually been able to meet Jessica and Amy and their mother. Eileen face to face on more than one occasion and we have had some very long dinners and very long conversations. I feel like I'm very close friends with you and I know from having met with you and had dinner with you and shared stories with you that this whole situation brought two sisters who were already close even closer.

Jessica:10:46Yeah, very much so. And even with our mom, too. There's just something that kind of happens. You can't really put your finger on it, but I think it's You appreciate your support system. You appreciate the people you have so much more.

Amy:11:05Yeah.

Anna:11:06So Jessica, tell us about the health crisis you faced when you finished your bachelor's degree from DePaul.

Jessica:11:14I was actually in really good health for the most part throughout my undergrad. I was behind maybe two and a half years, so I finished my bachelor's in Business Management at DePaul. Amy finished at the same time as well because I was two and a half years behind, I had caught up to her. We graduated in 2008 and then a few months after graduation I had gotten a job at one of the stores at the mall. My back hurt, my feet hurt like it was so hard to stand. I was having other issues, having trouble breathing. I was in the ER a couple times and one time I was admitted because I had fluid around my heart. I think it was for a few days. It might've been a week. A doctor had come into my room that had never met before. He's from nephrology, the kidney doctor. He's like, "Has anyone ever told you you might need a kidney transplant"? I was by myself at the time and mom and Amy had stuff to do so I'm okay except in these moments and I was like, what are you talking about? "No, no one's told me anything about this. I don't know what you're talking about". He's like, "Well, at some point soon you're going to need a kidney transplant". I don't even think I remember saying anything back to him until he said, "Have a good day". And I was like frozen and I remember her like..

Anna:12:50Sure! You were in shock.

Amy:12:52Completely. And tears started to roll down my face. I called my mom right away. She couldn't understand me, so I was frustrated. What are you saying? I was just told that I need a kidney transplant. It was literally out of nowhere that we were told. But unfortunately that's one of the side effects of one of the medications that I'm on for life. We weren't told side effects that extensive. That was an interesting time as well. Out of the blue, I think that whole period I was in shock still. So at that point I had no idea that I was facing another transplant.

H2HwMichael:13:54"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 twirl in. 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.

Announcer:14:05You 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:14:24Before the break we were talking with Jessica about her health issues after she was finished with her bachelor's and if I'm not mistaken, you ladies were living together right? Can you tell me what that time was like for you?

Amy:14:37We were living together all through college and I would go with her to the hospital and mom kind of gave her a break and if she really needed to come down, we would tell her to come down since she lived in the suburbs. I kind of felt I was her caretaker and I needed to be in charge and make sure she was getting the best care, obviously if she couldn't advocate for herself. And so a couple times we had gone to the er, she would be really sick and we're in our early 20's. You have to make all these big decisions and just be smart about it. It was difficult, but we learned a lot. We learned how to take the CTA, which is our public transportation instead of trying to run to the hospital.

Anna:15:24Oh my gosh. Yeah. That would not be so great. So you were actually watching your sister go from being pretty healthy because once she recovered from the transplant, she had several good years before she started to have health issues. Isn't that true?

Amy:15:40We were kind of living a normal life. Not a lot of people except our close friends knew about her transplant and her being sick and then all of a sudden she got sick again and we started to tell people and it was frustrating, definitely. You know we were semi normal quote unquote, um, college students. And then all of a sudden it was, we're back in this bubble of going to hospitals and doctor's appointments and one thing after another is wrong. So it was disheartening and frustrating and we became closer obviously through it all. We still argue and we still live together. So...

Anna:16:19I love it that you girls had a normal, sister relationship. On the one hand you're saying how you felt, even though you were the younger sister, you still felt responsible for helping to take care of your sister, but you weren't afraid to go ahead and have a sisterly fight if you need it to.

Amy:16:37No, we would definitely throw down when we're younger. We got into some fights. We had our fair share and it's more rare now, but there are still those sisterly fights. Yep.

Anna:16:51And that's just the way it is. I have a sister myself. I know exactly what that's like. Your sister is the one person you can fight with and know that she will always love you no matter what you say or do. You're, safe with her.

Amy:17:07Exactly.

Anna:17:07And it's going to be okay. I want you to tell me Amy, because I felt so close to you when I was reading just The Hearts of a Girl and it was talking about when her kidneys really started to have problems and she was facing dialysis. So tell me about what dialysis was like for you and then we'll talk to Jessica about what it was for her.

Amy:17:31The very first dialysis treatment, she was an inpatient and so we went up the elevator. She was in the bed and there's all these people in the dialysis lab and I immediately felt really lightheaded and nauseous and I don't know what it was. Maybe it was a smell or seeing getting something done, but I basically disappeared and found the bathroom because I had to throw up.

Anna:17:57I think you're such a compassionate and loving sister. You had a visceral reaction to what your sister was going to be going through.

Amy:18:06And that happened at least three more times that I went with her for dialysis. There was the week before the actual transplant that she needed a couple dialysis treatments and we were staying at a hotel really close to the hospital. And so one time we went, that happened again. I just felt very nauseous and sick and had to excuse myself. And then the next time she was in the middle of dialysis and she sits up and you're not supposed to sit up very fast. You have to go slow and you have to tell a nurse, she literally, her eyes rolled back in her head and she said "Get a nurse". I got a nurse and then I disappeared again, because I felt nauseous. Ever since the kidney transplant I have an adverse reaction to smells and hospitals now and seeing people in pain.

Anna:19:00It's almost like a PTSD, a post tramic stress disorder experience. Ok, so some of our listeners don't know where the transplanted kidney came from. So do you want to tell us about that?

Amy:19:18Sure. It all kind of happened very fast, yet slow at the same time. Jessica and I were a near perfect match and so I gave her my left kidney. I have a incision on my left side, kinda like bikini line and then they also, they opened me up but they also went in laparoscopically. So I have four little scars on my stomach.

Anna:19:41What was it like for you to know that your sister was giving you a kidney? That you need it to not have to be on dialysis any longer.

Jessica:19:49I didn't want her to. I didn't want her to have any experience with surgery, pre and post. I didn't want her to have to go through anything like that. At first they told her she couldn't donate. We see obviously how fast that turned around because she was a near perfect match. She wanted to donate. I really had no other choice, so luckily she was a near perfect match and I probably, you never know because the wait for a kidney just gets longer and longer, so I honestly could have been on dialysis for five, six years. I definitely don't think I could have lasted that long to be honest because three, four weeks of dialysis was a nightmare as it was.

Anna:20:38I know and your poor sister was in the bathroom throwing up every other time.

Jessica:20:43I mean I do remember some of those occasions where I just turned around and I'm like, "Where is she"? It became a running joke because when, I didn't see her. I knew she was in the bathroom throwing up.

Anna:20:56I think she gave you the kidney out of self defense. So she wouldn't have to experience that anymore.

Jessica:21:04It might have been, but she's so hypersensitive, like she said. It's pretty funny to just be like, "Are you okay"? Like "You got this?" I just didn't want her to feel the pain because I know that would be nowhere near if I wasn't here. Ultimately, I literally had no choice. We continued on and I think at that time, over 100,000 people were waiting for a kidney or something. It's pretty high. The wait alone was six years. I was very lucky. I was lucky to have somebody who could donate. Not a lot of people do.

Amy:21:42Right. And if the shoe were on the other foot, Jessica, do you think you would have hesitated to give Amy your kidney?

Jessica:21:47No. No, no question.

Anna:21:52I love you girls. You girls are so awesome.

Jessica:21:57We love you, too. Yeah.

HomeTonight4Eve:22:05Home. 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 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.

Announcer:22:40Anna Jawsorki has written several books to empower the congenital heart defect or CHD community. These books can be found at Amazon.com or at our website, www.babyheartspress.com. Her best seller is The Heart of a Mother, an anthology of stories written by women, for women in the CHD community. Anna's 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 babyheartspress.com to find out more.

Anna:23:15Well, Jessica, when I was reading your book, The Hearts of a Girl and everybody should get a copy of this book, The Hearts of a Girl. There will be a link on my website so you can just go straight to the ordering process. You have to get a copy of this book because she goes into so much more detail and we were just saying during the break, there's no way we can talk about everything in the book, but what I do want to talk about is even though you know your sister is a match for you, things didn't go completely smoothly. Tell us about how all of a sudden this surgery gets postponed, not once but twice. And what Amy and your mom had to do to make this a reality for you.

Jessica:23:58First time, her kidney transplant was postponed was because she didn't have enough insurance coverage.

Anna:24:06Didn't it say in the book that you needed $100,000, wasn't it?

Amy:24:10Yeah. Oh yeah. Well over that. Yeah. So because of that, I was trying to figure out how are we going to pay for this if you have to pay out of pocket. And even though hospitals say that they're nonprofit, they don't really do anything for free. So I went online and started an online fundraiser and set that whole thing up and we raised more than $42,000 in less than 30 days. And so because of that, the hospital found out we were doing news stories and newspapers were coming to the house and talking to us because we got some notoriety from this and the hospital cornered us one day, Jessica and I and said they were gonna postpone the transplant again because...

Jessica:24:58We had to prove that it wasn't my personal finances, which we did. So with the Medicare you can't have a certain amount and they didn't want to mess that up and it wasn't going to be. So we had to like make sure we had to get letters from my medical trust fund and from the fundraiser that Amy was doing from the founders of that saying, no, this is not personal funds.

Amy:25:24Right. Yeah. And if you need a medical trust fund for organ transplant, you should contact the Children's Organ Transplant Association and they're based out of Indiana and they're the nicest people. And she's had her trust from there for more than 19 years now. Right?

Jessica:25:45Yeah.

Amy:25:45So you know, that will cover like any bills or medication or anything which if insurance doesn't cover or you don't have money, that's what you can use. So you just submit your receipts and stuff and they'll pay.

Jessica:25:58Yeah. So that was also part of where we were going to get money if we needed money. They would come in and say, "How much do you need" and send a check to cover outstanding bills or anything we needed to make up that.

Anna:26:14So the first time it was postponed because you simply didn't have a trust fund set up or any of that extra money. The second time it was postponed because they were afraid that you were pocketing this money personally instead of having it set up properly. So then what happened?

Amy:26:32After proving it, everything was back on schedule, but because they posted it, she needed more dialysis than she would have needed If they had postponed it.

Anna:26:42Sure. And that must have been scary for you because you knew you didn't do well watching your sister on dialysis.

Amy:26:50Right.

Anna:26:50Okay. But then they finally said, "Okay, this is all set up right". But I know it wasn't quite that simple because I know that your mom was also behind the scenes and she was pulling some strings, too. Jessica, tell me a little bit about what kind of advocacy your mother was doing.

Jessica:27:09She was helping with the fundraising. She was contacting people at the radio stations, news outlets, anywhere she could contact just to get the story out there and say, "Hey, this is what's going on". She contacted the people at the hospital that were telling us that we couldn't go ahead with the transplant. She was not happy. So I feel bad for the people that she yelled at, but I really don't feel bad.

Anna:27:38I'm sure she was a mama tiger.

Jessica:27:40Yeah, that was it. Yeah. I mean she was doing what she had to do. So she basically was just making phone calls, contacting anyone she could saying, "This is what's going on, it's not right."

Anna:27:50Yeah. Didn't she even contacted a senator in your state?

Jessica:27:55Yeah, Senator Mark Kirk. He had helped push through insurance coverage quicker because I was waiting on the Medicare to come through. Medicare was the one that was covering everything. My insurance at the time only went up to $30,000, so he pushed through the Medicare. He pushed us through in less than two weeks. So with that and then the fundraising, they had no choice but to be like, okay, here's the third scheduled time. We were able to be put on the calendar and you hold your breath up until that point it came. It wasn't canceled, but my mom was literally on the phone with Mark Kirk's office I think every other day.

Anna:28:42She was amazing.

Jessica:28:42Very nice. Yeah, and they were very helpful and it's not usual that you say that at that point in time for what it was. They did everything they could.

Anna:28:54Right. The thing that I found really interesting when I was reading your book, Jessica, was that in addition to all the health issues that you were having to deal with in the course of your life, your mom was also having her own health issues. Why don't you tell me a little bit about how you're dealing with your mom's health issues right now? I know in the book you talked about her being a breast cancer survivor, but now she's dealing with something totally different.

Jessica:29:20Yeah, it's been really difficult actually. We found out she was in congestive heart failure almost year ago. It was like mid August. In August she had a pacemaker put in or early September and then she had her pacemaker redone three times to try and connect it. There's connection issues that she's dealing with now, but there's also a real possibility that she's going to end up needing a heart transplant, which was like, it's so hard for us to even wrap our heads around it. Talk about it.

Anna:29:56Sure.

Jessica:29:57It's like, where did this come from? It is literally like, again, we got knocked out in a fighting match because you didn't see it coming..

Anna:30:06Right.

Jessica:30:07At all. She just went to see my transplant doctor on August second and we just take it one day at a time. We're always calling saying, "How are you feeling"? She's still the same person, but she's changed a little, if that makes sense.

Anna:30:27Sure. I think something has to change you. It's one thing to be mamma tiger and to be the advocate for your baby and to fight like crazy and I know you weren't a baby.

Jessica:30:36Right.

Anna:30:36I'm a mom. Your children are always your babies. It doesn't matter how old you are. But then it's something totally different to be older, to have experienced it vicariously through your child and now to now you are facing that yourself. And I know Eileen, I'm sure she is putting on a brave front. She doesn't want you girls to be worried about her and yet, she's facing probably aside from her breast cancer scare, this has got to be the most frightening thing that she's ever had to confront medically.

Jessica:31:09Yeah. I mean there are no words. I know I'm not a patient patient. I always say that to begin with so my role has shifted to being a caregiver and I hope to heaven above that Amy doesn't have to say anything. And that's partly why we're doing this study. There's a genetic and genome study to see if it's a genetic condition that runs in the family or not. So we're not sure if this is genetic or not from mom yet.

Anna:31:42I think it's fascinating that all of you have decided to take part in this genome study, so maybe you can answer some questions. Is it a genetic mutation or is it something that's acquired on your mom's part? I think until you actually take part in this study you're not going to know. And you ladies are actually going to be providing some data that might answer some questions that all of us have regarding this condition. I think it's fascinating.

Jessica:32:11Right. There's a possibility that none of it's medical, but my uncle was also having issues with his artery and his heart for awhile.

Anna:32:18Oh wow.

Jessica:32:18Yeah, our great grandma had a minor heart condition so we don't really know.

Anna:32:23Right.

Jessica:32:24Until this is tested, so it'll be interesting.

Anna:32:27And how many family members are taking part in the study?

Jessica:32:31Four of us. So Amy, me, mom and our uncle.

Anna:32:35Wow. So Amy is the only one who's completely asymptomatic. Right?

Amy:32:41Right. Friday I'm going to have an echo and an ekg and then, they will take blood from all of us I think.

Anna:32:48But you are still asymptomatic.

Amy:32:49Right.

Anna:32:49You haven't had any symptoms of congestive heart failure or any kind of problems.

Amy:32:54No.

Anna:32:54Amy, tell me what advice you would have for somebody who's loved one has been told they're going to need a transplant.

Amy:33:02Definitely talk about it, confide in each other, and friends. I think just staying strong and it's definitely hard. It's shocking and I feel like I always have to be like the strong one so, and it's totally okay to be vulnerable and you know, I've cried many times. And be open to what's going to happen, but also be hopeful and think and pray about it if you want to. Letting people know how you feel and being there for each other.

Anna:33:37Right? Right.

Amy:33:38It's okay to be sad and upset, but you just really have to be strong. I think. Be strong.

Anna:33:45Yeah. I think you do have to be strong and I think you're right there that it's okay to be vulnerable and I can't imagine being in your shoes and not shedding some tears. How frustrating to see someone you love go through something and you're fairly powerless to do anything about it until you weren't. Until your superpower was, hey, I'll just give her my kidney. We'll, at least take care of this one problem, but you couldn't give her your heart. It's different when you're talking about a heart transplant than a kidney transplant and to watch her needing a heart and now your mom. It's got to be so unbelievably frustrating.

Amy:34:24Right.

Anna:34:24Well, Jessica, you've been in your mother's shoes. You've been where you're in congestive heart failure, the pacemakers not working. Things are not going the way you want. You've been told you need a transplant. Tell us what advice you would give someone like your mom.

Jessica:34:43Amy and my mom and they always tell me I'm strong, but I think they're in more ways than one way stronger than I am because I literally broke down. And I'm trying to tell her what to expect or what they're gonna say or trying to explain certain things or if she has a question, but if I weren't telling her, if I was telling somebody else, I would be like, just keep going. Just stay strong. Listen to your body. Rest when you need to rest. Don't push yourself more than you need to. We tell mom that too. Like, okay, well then just rest. It's just one of those things you just don't want to have to talk to a parent about it and tell her what to expect.

Anna:35:35Yeah.

Jessica:35:36It's very hard to, talk to her about it for me. But yeah.

Amy:35:41Sorry to interrupt, but our director, he pulled me aside and he's like, well, so what should I be looking for? Like what do you remember about Jessica being sick and waiting for a transplant? Well, it's completely different. She had been sick for a long time when she needed a transplant and with mom it's like coloring, like look at her face, like appetite and she's tired, it's like what do you tell somebody? It's hard. Definitely difficult.

Jessica:36:10Yeah. I mean she saw the doctor. There's a chance that if they can get the pacemaker working to where it's actually working, then she can lay off the transplant for a while. They're still gonna list her just as a safety net, which still throws me off, like thinking she's on newer medication that's supposed to be really good for congestive heart failure. She's also working with my doctors at Northwestern to try and get this pacemaker back up and working. It'll help her with her functioning. We're hopeful that that's gonna make the difference with the medication she is on and then fixing the pacemaker, but it is completely different from me in the fact that I was sick for so long and it never really went away until after the transplant and this just has been less than a year, which is also super scary that they're already talking transplant.

Anna:37:12Right.

Jessica:37:13It's just been a complete mind bender I think.

Anna:37:17Yeah. So I can see your struggle where you remember what it was like. You don't want to be talking about that constantly because you have to have some downtime where you can focus on the latest television show or going to see a movie or anything else.

Jessica:37:35I don't exactly want to rehash it all because she knows it. It's not like she doesn't know it. It's just a totally different perspective.

Anna:37:46Right. I think having you girls so close to her, she's so lucky that you're not all the way across the United States, but you're very, very close in location to her and I'm sure that it's a comfort to her because you can be there. You can drop everything and be there for her if she needs you. And I know her well enough to say that she wouldn't be afraid to reach out to you girls.

Jessica:38:15Oh no, no.

Amy:38:16No, no.

Anna:38:18You guys are like the three musketeers.

Jessica:38:22Yeah.

Anna:38:22That's what I love about you. I mean it's one for all and all for one.

Jessica:38:26I mean that's just kind of how she's brought us up. You know, it was us three for a long time going through medical stuff, the three of us, and then it just continues that way.

Anna:38:42I am so happy that you ladies came on the show today and talked about this. I'm not happy your mom is facing this, but I do feel good knowing that the three of you are together on this and if there's any trio that can overcome obstacles like this, I know it's the three of you. You've been there before. You have faced uncertainty and you've triumphed over it. Eileen, I know you're going to be listening to this. I know you've got this. You've got these two amazing daughters. You have friends like me and so many other people out there in the heart world who are applauding you and cheering you on and I know you've got this. It's not going to be easy. It's not. We already know that, but you can do it. I hate to draw this show to an end on that note, except that I think it's a positive note and I think that the three of you are proof that love can conquer amazing odds against you and I know that your love for each other can help you to come through this and end up on top.

Jessica:39:51Thank you.

Amy:39:53Thank you for having us on.

Anna:39:55Oh, thank you so much for coming and sharing. I know this was tough to talk about, but I'm so glad that we had a chance to talk about it and share this really unique experience. Hopefully there aren't a whole lot of people out there who are having to experience the same trauma that you have over and over again, and yet I'm so inspired by you because you all have triumphed over all of these obstacles and I'm inspired by your story. There's so much more in that book that we didn't get a chance to talk about, so that just means that you'll have to come back on the show, Amy and Jessica.

Jessica:40:31Well, I have no problem doing that, anytime.

Anna:40:35Okay, great. Well thanks again for coming on and thanks for listening today, my friends. Please come back next week on Tuesday at noon eastern time or anytime. That's the beauty of the podcast. Once it's released, it's available 24/7. Please find our program on iTunes and write a review for us so other people know what to expect with Heart to Heart With Anna. And remember my friends you are not alone.

Speaker 6:41:02Heart to Heart with Anna a presentation of Hearts United 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.Congenitalheartdefects.com. For information about CHD, the hospitals that treat children with CHD, summer camps for CHD survivors, and much, much more.

Conclusion:41:35Thank 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.

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