Transplant Recipient Debunks Myths about Transplants

Former professional soccer player, Chuck Estrada, shares his heart journey with Anna on this episode of "Heart to Heart with Anna." Chuck describes how he was born with transposition of the great arteries in 1974, the surgeries he required over time and the events that caused him to travel down a totally new and previously unexplored path by him. Chuck describes how his mother helped him to pursue his desire to be a professional ballplayer, despite having medical equipment which could have interfered with his ability to live the life he dreamed of.From the age of 19 until he received the Gift of Life, Chuck lived a life of uncertainty yet he never let go of his dream. When he finally couldn't play soccer and be the player his team deserved he retired from the sport but shortly after became a soccer coach.In today's episode of "Heart to Heart with Anna" Chuck talks with Anna about common myths surrounding heart transplantation and what the truth is behind the misconceptions. Chuck's five years of living with a transplanted heart make him an expert in this field.

Transcript

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to heart to heart with Anna. I am Anna Dworsky and host of your program. This is the 10th episode of Season 12 and our theme nous is in his organ donation and transplantation. I'm very excited for today's show to future former professional soccer player who was born with a congenital heart defect. Check Estrada. He is here to share his story with us about his heart journey and to help us better understand some common misconceptions regarding organ donation and transplantation. Today show is entitled. Transplant Recipient Debunks Myths About Transplantation Chuck Estrada was born on February 26 1974 with transposition of the Great Arteries, or T G A, and he had a mustard procedure repair in 1976 a Texas Children's Hospital by none other than a great Dr Denton. Cooley, despite having TG a check, is a former professional soccer player. He played with an ejection fraction, or E F. Of 30%. For most of his career, he had four I CDs from the age of 19 to 39 when he received a heart transplant. He amazed everyone by walking out of Super Saiyan eyes in Los Angeles on Lee seven days after transplant and playing half the season in the United Premier Soccer League, or UPS. L just four months post transplant. He is currently a head coach for a U. P s L team in Colorado, but the reason he's on our program today is because he wants others to have a better understanding of the myths surrounding transplantation. Check is going on five years with this new heart, and he has become a very strong advocate for organ donation and transplantation. Welcome to heart to heart with Anna. Check.

spk_2:   1:51
Oh, I'm so happy to be here. Thank you, Anna.

spk_1:   1:53
I'm excited to have you on the show. I believe you are the very first professional soccer player that has ever been on her dark Madonna.

spk_2:   2:01
Oh, that sounds fun.

spk_1:   2:02
Yeah, I actually had an Olympic figure skater who was also born with a heart defect. Did you know that?

spk_2:   2:09
No, I did not.

spk_1:   2:10
Yeah. Yeah. Paul Wylie was actually born with bicuspid aortic valve and he came on and talked during our cardiac athlete Siris.

spk_2:   2:19
Oh, wow. That's great. I know that the snowboarder was also born with a Ph. D.

spk_1:   2:24
That's right, Shaun White.

spk_2:   2:25
Shaun white. Yes,

spk_1:   2:28
yes. I mean, there's more and more of you out there. That is what is so exciting to me is that you all are having such successful surgeries that you are able to lead a much more normal life. And in some cases, like yours and Shaun White's and Paul Wiley's an extraordinary life.

spk_2:   2:46
Yeah, tell you in looking back the years that I have 44 years now since I was born in 42 since I've had the muscle repair even back then they didn't think that even with those types of procedures done that, we would have a very long life expectancy. So I'm really excited to be here and talk with you about all of this.

spk_1:   3:07
Well, let's go way, way, way back in time because I know you probably don't remember your mustard procedure said you were so young. But why don't you talk to us about what it was like growing up in the seventies and eighties with that big score down your chest?

spk_2:   3:20
That's an interesting question there, Anna, for me, I really didn't notice or really have ah, fear of showing my scar. Like a lot of CH years, we grew up understanding that going to the hospital having appointments is just a regular part of life. So that's how my parents treated me was just another one of their four Children. And I really never had a predisposition, so to speak, to wanting to cover anything up. So I just thought everyone else had a scar. And as a young boy, I went swimming. I did all those things, just thinking it was normal.

spk_1:   4:00
So you have three brothers and sisters.

spk_2:   4:03
See, I have two older brothers and one younger sister.

spk_1:   4:07
Okay? And did your older brothers just treat you like one of the gang? Yeah. Everybody just

spk_2:   4:13
treating me like one of the gang. It was at times. Uh, I had a little bit that I could use for an excuse,

spk_1:   4:22
but it

spk_2:   4:23
really was. Just

spk_1:   4:25
doesn't like one of the boys. Okay, So two older brothers that will normalize you more than anything.

spk_2:   4:33
Absolutely, absolutely, really fast.

spk_1:   4:36
Now, where your brother is also soccer players,

spk_2:   4:39
Actually, my oldest brother was a soccer player. He actually played professionally in Germany. My dad is a retired army senior officer. I got a chance to do the world and part of that. I was able to see some of the best doctors in the world like Dr Denton Cooley when we were stationed there in Houston. So it was a great way for me. I think I had some care that was exceptional, mostly because with my father being in the military, he was able to choose duty stations based on the fact that I was a child in need of health care. So we were able to go back to some of the best in the world, such as Dr Cooley, there at Texas Children's Hospital.

spk_1:   5:26
It's just amazing to May, and I love it that your brother was also a soccer player. Is that where your love for soccer came from?

spk_2:   5:35
No, Actually, it wasn't my level Sucker came from the fact that I was actually a stand out high school baseball player, and here in Colorado, where I grew up pretty much, we moved here in 1986. So I was around 12 years old when we moved here. Soccer was just another way of keeping into shape during the off season because we had a pretty harsh winters. We didn't have a baseball program that lasted all year round. It was just for the spring time, so soccer fell in the fall. So I played soccer in the fall and played baseball and actually rustled a couple of years in high school is well,

spk_1:   6:15
wow,

spk_2:   6:16
just stay in shape.

spk_1:   6:17
Wow. Well, what amazed me was when I was reading your bio and you said that she played soccer with an ejection fraction of 30% for most of your career. The research that I did stated that a normal E F is 55% or higher, so having one at 30% is almost half of what it should be. How did having such a low e f affect your quality of life during that time?

spk_2:   6:42
That's a really good question, I think for me. And I think for most CHD Children that actually are able to be active and grow up become teenagers and young adults. We learn coping mechanisms, we learn about our bodies and we know the Hinds of symptoms of when something is catastrophic and something is very minor. So for me, it was just being able to have a mindset and push through things that wasn't going to get any better for me. So basically what I had to do was find a way that I could cope with having such a low. Yes, the most common side effect. Our effect that I had while I was playing was I would get migraine type headaches. So I learned early on that taking some extra strength Tylenol or some ibuprofen before a game really limited those headaches for me. So I was able to play, Ah, full game in most cases. But as I got older and my career was only 12 years long, I retired just at the age of 33 or so. My e f played a factor later, not earlier in my career and earlier my life because as I got older, I realized that I needed more recovery time. That was really the biggest, a

spk_3:   8:04
Texas hot industry. We're offering us a mechanical hot, and he said, not a day that I've had enough to give it to someone worthy. My father promised me a golden dress to twirl, is held my hand and asked me where I wanted to go. Whatever tried for conflict that we experience in our long career together was always healed by humor.

spk_4:   8:25
Heart to heart With Michael Please join us every Thursday at noon. Eastern As we talked with people from around the world who have experienced those most difficult moments,

spk_0:   8:36
you are listening to heart to heart with Anna. If you have a question or comment that you would like to dress down, show police in 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 with them. So

spk_1:   8:55
check you were saying that the problem with your ejection fraction was not that it happened because it was happening for a while, but that as you got older, it took you longer to recover from it.

spk_2:   9:08
Yes, that's exactly what would happen. I would see myself playing in the game on Saturday and essentially taking 56 days to fully recover, only realizing that I'm playing a game the next day or in the next couple of days. So my training suffered from me suffering from a heart that didn't pump very well. And with the issues, I also had issues with irregular heart rhythms, a fib which is a common term that obviously s C h. Two years use. From the time I was 19 until transplant, I suffered from Ah, lot of rib me issues. And I remember going back to 19 during finals week. When I was in my second year of college, I felt kind of weird. I figured I was stressed out, but I wanted to make sure everything was okay. I called over toe home and asked my parents to set up an appointment for me to see my pediatric cardiologists. They did that. I flew home. Once I got home, I went to the doctor's office here in Colorado Springs and laid down like I normally do. They hooked up there e k g machine. I'm figuring everything is normal. The nurse just gets hail and I'm trying to figure out and trying to read her on What the heck is going on? The doctor comes in and he says, we called an ambulance. We are going to get you over to the hospital now. The funny thing is that I was literally across the street from the hospital, but they still took me by ambulance from one building to the next building. And once I got to the hospital, they had to cardio vert me because they couldn't get my rhythm figured out.

spk_1:   11:00
So they didn't even feel safe putting you in a wheelchair and running across the street with you. They actually felt they needed to call an ambulance of petunias. Stretcher. Wow,

spk_2:   11:09
that and one of the first questions my doctor asked was, How did you get here? And I said, I drove

spk_1:   11:15
on and the look

spk_2:   11:17
on his face.

spk_1:   11:19
What?

spk_2:   11:20
I think that's what happened with CH years. We go through a lot of different experiences. We don't know if this experience is something that's detrimental or this is just something else that is part of run of the mill. Oh, well, since you have t g a or whatever, this is kind of how we live, so

spk_1:   11:39
yeah, yeah, yeah, And it didn't end there. Not only did you get taken by a stretcher and an ambulance over to the hospital, but then they were insistent on doing something else to you, weren't they?

spk_2:   11:51
Yeah, they cardy over to me, and then they came in and said, It's time for a Pacer. And at 19 years old. I'm sitting here thinking I'm still playing sports at school. I don't want to give that up. So question wasn't about Oh, no. Now do I have to stop my question? Waas, What do we need to do to get me back on the field?

spk_1:   12:17
Right, Right. Was your doctor surprised by that attitude?

spk_2:   12:22
Yeah, he waas and he had been my doctor for quite some time at that point. But yeah, I think he was surprised. He also knew the type of mind frame that I had. He was my doctor all the way through junior high and high school and saw me excel in sports at that point in time. So I think he realized saying no was probably not gonna be an answer. I

spk_1:   12:41
was. I love that Now, what did your mom do to help you? Because she knew that you work. I take no for an answer either

spk_2:   12:51
That she did. That's the great thing about my parents. Instead of saying, OK, let's have a talk about finding other avenues talking my time with they knew that I was going to do this one way or the other. So my mom being is crafty as she is, she went and she bought these cycling ensures these tight spandex shirts, and she's patched in these foam patches on the left side of the shirt where they would sit on the top part of my chest. And she said, Well, we know that the Pacer can't get damaged. I'm gonna build this foamy thing on the shirt and go ahead and go play. So I spent the rest of college and my first couple of years playing professionally with the Hispanic shirt underneath my jersey and like it looked like I had a boob job on the left side and nothing on the right side because of how much the past protruded from the shirt but eight. For me, it was normal. It was one thing that I knew to appease my mother. I was gonna wear this and knowing that damage to this pacer, and I think the other thing. We talked about me being a soccer player. I was a goalkeeper, so

spk_1:   14:01
I

spk_2:   14:02
was getting shots, taking at me left and right all day long, and I don't want a was I go here.

spk_1:   14:08
I played

spk_2:   14:09
a sport that a lot of people don't know. There's a professional sport out there, actually, professional indoor soccer, which is a lot like hockey and basketball put together. But you kick the ball. So I was in close quarters making saves. Guys seeking these balls at 45 50 miles an hour from 10 feet away, 12 feet 15 feet away.

spk_1:   14:31
Wow. Now, did it ever hit where the padding waas and that actually help to protect it?

spk_2:   14:38
You know, I'd like to say yes, it did. I would definitely hit quite a few timing that my chest, my face. I mean, getting hit all over the place like there came a time where I decided that it became a little bit too cumbersome to wear. So I stopped wearing those pads. Probably my third year playing at the professional level. And I can say I've gotten hit there quite a few times with a Pacer. Nice CD, but really never had any issue. Thank goodness. Knock on wood, I guess.

spk_1:   15:09
Well, now you said that you had several pacemakers and I CDs. Were they getting smaller and a little bit less worrisome as you grew older?

spk_2:   15:19
Yeah, I mean, they did. And when I went from pacer toe. I see the the units that we had at that point time. We're a little bit smaller than the Pacers, for some reason, but every implant was placed in the exact same location, just one after the other after the other. So I don't know if I built enough scar tissue or just some muscle mass that I was able to put on that also help protected. But those things stayed in place for the most part.

spk_1:   15:46
Well, let's fast forward and talk about when you discovered that she would need a heart transplant.

spk_2:   15:53
Okay, so I stopped playing soccer in 2007 and 2000 and eight. I was approached by a professional soccer team that was coming to Denver, and they were looking for a head coach. I ended up getting the position of the head coach in 2008 and spent two years training, coaching, and at that point time, I really started to decline and help. In 2010 they classified the as stage for congestive heart failure. Oh, wow, the way this all happened. Actually, my ex wife, her nephew, had a birthday the summer of 2010 in July, and we went up to Denver from Colorado Springs. I live in Colorado Springs, which is about 60 miles from Denver. We all decided to go up to Denver and they have an amusement park. We were going to do that and then stay the night because the following day I actually had my yearly checkup at the hospital. You've received Colorado and the night that we got back from all the fun stuff at the amusement part, I wasn't feeling very well at all. So I ended up driving myself once again to U ch to the emergency room. And then that's when they realized that the congestive heart failure is just gone to a point where it was time to do something. So they admitted me immediately July of 2010 and I spent two weeks in the hospital, and within those two weeks or during those two weeks, they came and said, We need to start evaluating you for a heart transplant. Wow, that's kind of when it hit us, at least for me. As a PhD kid and young adult, we always thought about transplant, you know, I thought, man, if I got a transplant that would fix everything. So when we got

spk_4:   17:49
to that

spk_2:   17:50
point in

spk_4:   17:50
2010 and I was on board, I'm

spk_2:   17:52
like, Okay, let's do this. Let's go through the transplant. Let's go through the process

spk_5:   18:03
tonight Forever by the Baby Blues 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 heart defects. Join Music Home Tonight forever Look.

spk_4:   18:38
Anna Dworsky has written several books to empower the Congenital Heart Defect, or CHD community. These books could be found at amazon dot com or at her Web site, 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 his 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:   19:14
I was really interested when you said how when you were younger, you used to think, Oh, I just need to get a heart transplant. Then I'll be fixed because I think that is something that most people think Tell us what the truth is. Let's debunk this to begin with. What is it like to really get a heart transplant?

spk_2:   19:34
Oh, wow. That's a great question. And and I can say this getting a heart transplant. Although it has saved my life, the last five years has been probably the toughest portion of my life. And you learned this. When you go through the evaluation process, just like anything else, they evaluate you. They decide if you're a good candidate and then they sit you down and through the process. They bring in social workers, psychiatrists on so forth, and they explain this transplant process. And I remember sitting there with my family in this room at University of Colorado Hospital and one of the cardiothoracic surgeons. He explained to me and to everybody in the room and the first thing he says to us is, you need to understand that transplant is not a cure. It is just an option of treatment. That is it. What we're gonna find out as we go through this process, he tells us is that were basically trading in a set of problem that we have right now with this heart for a whole set of problems after transplant.

spk_1:   20:48
Yeah,

spk_2:   20:49
and the biggest problem or the biggest issue is surviving the transfer. I mean, you have to think about that. So here we are. That is, we feel and knowing that our heart is giving out. But we can still get around and do things, E. I mean, the first thing they tell you is okay, we're trading it in. But the biggest thing that can happen is you lose your life,

spk_1:   21:18
right, which is huge. That's a huge concern.

spk_2:   21:22
It is. Of course, I get presented with that option. And of course, I say, Let's do

spk_1:   21:27
it. You are ready to go. I know. I totally get it because you were feeling so bad. I mean, I think about you living with that ejection fraction of 30% for year after year after year, and as you age you get older. It starts taking you longer to recover. You're not feeling so good. You're having to go through these ablation sze, which is no fun and going through one or CCD after another. I mean, it's not like you had an easy life. I can imagine you saying, Wait a minute, let's just try it. It's got to be better than what I've been going through. Okay? So first myth, we do about it. First of all, it's not a carer, and you won't be the bionic man. However, you are a lot better now than you were when you did have a very sick heart.

spk_2:   22:14
Yes, I'm definitely better now. But this process now post transplant is five years. If we go back to pre transplant I was listed in October of 2010. I waited on the transplant list for 1000 days.

spk_1:   22:30
Oh, my goodness.

spk_2:   22:32
So at 1000 days, they basically called me in and the doctors at U. C H. Which again I credit them for saving my life. They weren't egotistical to the point where they felt like it only had to be them. They actually said, Hey, we're not gonna find you a heart. It's not gonna happen here. So we have to send you somewhere else. Well, that somewhere else with Cedar Sinai in Los Angeles, which is the number one transplant hospital in the world. And I took that and I ran with it.

spk_1:   23:08
How long were you at Cedars? Sinai and I before you got your heart?

spk_2:   23:13
Okay, so that's a great question. 1000 days I waited here in Colorado in Colorado is a regional hospital. So it serves not only Colorado, Wyoming, North and South Dakota, New Mexico. In Nebraska, I get to Los Angeles. I go through their evaluation process. I get approved. I get listed there from getting listed to the day I received my heart 39 days.

spk_1:   23:40
Wow,

spk_2:   23:42
Exactly. Wow. Other well, part about that is that this heart that I have now was actually the fifth offer that they had in 39 days. So they had four other hearts that were offered to my doctors for me, but my doctors turned them down until this one came up. So I waited for 1000 days in Colorado and never got an offer. Less than 40 days. I get five offers and I'm on the table September 8th of 2013.

spk_1:   24:15
Unbelievable. Okay, so let me ask you a couple of other questions that I think or myths about transplant. For example, did your parents have a lot of money? Did the reason why you got offered those five hearts? Was it because you had enough money to go to California and you were put higher on the list?

spk_2:   24:34
Oh, didn't you know? And my last name is Trump. Oh,

spk_1:   24:45
no, I didn't know that.

spk_2:   24:50
Although my father did very well. Like I said, he's a retired Army senior officer. And then he built a career after the military and the defense industry. No, we're talking about me. I'm not talking about what my father has or or any of that stuff for me. I was at the time 36 37 38 39 year old that finally got on disability, which is a whole different thing I could talk about. But I was this man that was on disability, who had a wife and a step kid to provide for and had limited income. So yeah, what? It comes down to, and I think, what people hear about and they do. They do talk about these celebrities that get all these different types of transplants, and the first thing you say, Oh, it's because they have money Well, you know, which is the governing body for organ donation? They are very subjective, so you have to fit certain criteria. To even be listed for a transplant doesn't make a difference. If it's a hard, long kidney liver, it doesn't make a difference. But one of the main criteria is that you have to have the ability to pay for your transplant. And for a 99.999% of the people out there, it's insurance and you have to have insurance. I mean, that's the first question is, Do you have insurance? And if I would have said no, then the possibility of me getting listed was probably zero to nothing.

spk_1:   26:26
Wow. Well, I have one more question for you. The time has flown, and I'm gonna have to have you come back on the show, Chuck, because you're so fascinating. But just for us to debunk one more thing that I've heard about her, or maybe not debunk, but let's just talk about this. I have a lot of friends and Children of friends who have had heart transplants, and they tell stories about waking up and craving foods that they didn't used to like or picking up habits that they did. It usedto have come to find out the donor liked those foods or the donor had those habits. What do you think of those stories?

spk_2:   27:06
Oh, that's a very good and interesting question, To be honest with you and that I can tell you this before transplant. I would definitely say those people who have said those things were either trying to get attention or trying to I don't know just because, you know, people come up with different stories and they want it sounds interesting. So I can tell you this, and I don't know if this is related to or not, and I don't think anybody does. I know there are a couple of books out there that talk about systemic muscle memory, which is the ability to pass on or to the vest muscle memory from someone else who have donated, and I think that still kind of up in the air whether or not that's really something that happens or not. But I can tell you this. After transplant, two things happened from the time I woke up after being on anesthesia to now, two things happen to meet that are unexplained. The first thing is, I kept seeing and I would be wide awake, and I kept seeing yellow in red, just kind of in this blurry state of vision. If I were staring at something, I don't know why. I don't know why yellow. I don't know why red, but those two things for about a week just kind of popped in my head even when I knew that I was clear and or awake, so I don't know where that came from. The other thing is not that I didn't dislike Dill pickles before transplant, but after transplant, I had an insatiable craving for dill pickles. Really, I go through probably. I go to Whole Foods to buy the pickles at Whole Foods, and I go

spk_1:   28:59
through

spk_2:   28:59
articles on a weekly basis. Wow and I eat the pickles with everything. That's when we're trying to debunk. I don't think I can debunk that one, but I also don't know why. It's just one of those things. And I understand now why people have said that they feel different or they have different things that have happened to them after transplant, and they wanna link it to the donor. Now the only thing I know about my donor is that he was 27 male and he was from the central part of California. I have consciously made a decision not to reach out to the donor family at this point in time because up until this point, this last year, I had a lot of issues with rejection for about two and 1/2 years, so I didn't think I'd be here. If you would have asked me two and 1/2 years ago when we did this interview, then I probably would have told you I wasn't gonna make the five year mark because I have so many,

spk_1:   30:02
Well, well, see, So you just confirm what my other friends and Children and that's it said Well, and I think what you said is true. Maybe there's something physiological to that whole experience. I think that's fascinating. Thank you so much for coming on the show today, check. This has been great.

spk_2:   30:22
No, Anna, Thank you. I really appreciate you asking me to come on. And as I've told you before, I love and I want to share my story because people out there need to hear stories like this and understand of CH tears and CHD parents that life isn't lost because you have a ch d. I want to spread that word.

spk_1:   30:42
I love it. I love it. Well, that does conclude this episode of heart to heart with Anna. Thanks for listening today, my friends find us on YouTube. Just look up my name. Anna Devorski and my deaf kids used to say it's three little words jaw or ski J W O R s k I. And please subscribe. And remember, my friends, you are not

spk_4:   31:03
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 resource is to the congenital heart defect community to uplift and power and enrich the lives of our community members if you would like access to free resource is pretending to the c h T community. Please visit our website at www congenital heart defects dot com for information about CHD, the hospitals that treat Children with CHD summer camps for CHD survivors and much, much more.

spk_0:   31:46
Thank you again for joining us this week way. Hope you have been inspired on Empowered to become an advocate for the congenital heart defect community. Heart to heart With Anna With your hose down, Dworsky can be heard every Tuesday at 12 noon Eastern time.