Aging Care of a Fontan Patient

Texas Reardon is a Heart Warrior. Whitney is his wife of 10 years. Born with a host of congenital heart defects, Texas explains to Anna, in this episode of "Heart to Heart with Anna," about his complicated medical history, and some consequences he's had to face due to falling out of medical care for years. Whitney shares her story, with Anna, about the adjustments she's had to make to help her husband live optimally given his condition. Tune in to hear about the kinds of consequences Texas has endured and the advice he has for others so they won't suffer his same fate.

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Transcript

Whitney Reardon 
We have to understand each other and how each other works in order to be a team and to make things the best they can be.

Anna Jaworski  
Welcome to Heart to Heart with Anna. I am Anna Jaworski and your host. We are in our 15th season and we're so happy you're here with us today. I'm very excited about today's show to feature a special heart warrior and his wife. Today's show is entitled Aging Care of a Fontan Patient. Texas Reardon was born with transposition of the great arteries, single ventricle, atrial septal defect, ventricular septal defect, pulmonary stenosis, pulmonary atresia, and dextrocardia situs colitis. Texas had both the Blalock-Taussig shunt and Fontan procedure during his childhood and lived a pretty normal life. Eventually, like so many heart warriors, Texas fell out of care and didn't see a cardiologist for six to seven years. This cautionary tale with us begins with what happened as he attempted to get back into care. Texas Reardon is married to Whitney, his wife of 10 years. Whitney is a teacher of the deaf and hard of hearing, Whitney and Texas have been together for 16 years. They have two heart-healthy daughters. Welcome to Heart to Heart with Anna, Texas and Whitney.

Whitney  
Thank you for having us. 

Texas  
Glad to be here with you.

Anna Jaworski  
I'm so excited to have both of you on the show. It's not every day that I get to talk to a married couple where one of the members has a heart defect. So this is going to be a lot of fun. And Texas, I'm going to start with you. Let's talk about those early years. How old were you when you had your BT shunt? And how old were you when you had your Fontan?

Texas  
Yes, so with my BT shunt, I was actually not diagnosed pre-birth. So the doctors, my parents didn't know I had the congenital heart defect after I was born. It was shortly after the doctors realized there was an issue with me. So they actually lifeflight me to Herman Memorial over in Houston. I was born in a different hospital in Houston. My dad said I had the BT shunt within 24 hours of being born.

Anna Jaworski  
That's exactly what you would expect considering the number of heart defects and the severity of the heart defects that I read in your bio.

Texas  
Yes, and I think that was the main reason why they did it so soon. My dad and my mom always tell me when they brought me in, the doctor that actually did my surgery, he was actually on his way out on vacation. And they handed him my file. And he looked at it and he decided to stay and he ended up doing the surgery that day.

Anna Jaworski  
Oh, wow. Yeah. Wow. Now, what year was that? Do you mind if I ask? 

Texas  
That was 1983 

Anna Jaworski  
Okay. 1983. So this was still a relatively new procedure for them to be doing.

Texas  
Yes, yes, it was. And that was the only surgery I had until I was eight years old. And then I had the Fontan when I was eight, and I had that at Breckenridge Hospital in Austin. I had eight years between surgeries. And actually the 29th anniversary is this month sometime.

Anna Jaworski  
Wow. Oh my goodness. I didn't know they were doing a Fontan at Breckenridge in the 90s. 

Texas  
Yes, I had it in 1991. 

Anna Jaworski  
Who was your surgeon?

Texas  
Dr. Diwan.

Anna Jaworski  
Oh, my gosh. I know Dr. Diwan. I've been to Heart Walks where he's been. 

Texas  
Awesome. 

Anna Jaworski  
Yeah, he's amazing. Eight years, eight years between surgeries and you've only had one BT shunt because a lot of people I know of who were born in 80s, they ended up getting one BT shunt and then a certain number of years later, they would get a second one.

Texas  
Yeah, fortunately, I only had one. I know I did have a heart cath. Prior to the Fontan, a week or two before. Other than that, I think every six months to a year, doctor's visits with my cardiologists. And then I guess the BT shunt was just holding long enough until I got old enough for them to operate for the Fontan.

Anna Jaworski  
I think that because of some of your heart defects, some of them compensated for each other, but you also had dextrocardia. So because of the dextrocardia your big ventricle works. I mean, really all this works. What doesn't work is a pulmonary atresia and a pulmonary stenosis. So did they have to put a shunt in there or do something to help those pulmonary vessels get more blood flow like they needed?

Texas  
As far as I know, all they did was the BT shunt.

Anna Jaworski  
Amazing

Texas  
Until the Fontan so I guess I'm I'm one of the lucky ones.

Anna Jaworski  
You are. You are really, Texas. What a miracle. That's just amazing. You said you lived a pretty normal childhood, Texas, did the doctors give you any physical restrictions.

Texas  
Prior to the Fontan, I wasn't really able to do much physical activity, I could barely walk across the room. Due to my low oxygen levels, I was blue and purple. People always thought I had just eaten a purple popsicle because my lips were so purple all the time. Due to my low O2 saturations I had to be carried places or ride in a stroller just because I wasn't able to really walk. After my Fontan that completely changed. I was able to pretty much do anything I wanted. The only restrictions I was given were no contact sports such as football or lacrosse. I couldn't ride roller coasters and no competitive swimming. So other than that, I was able to pretty much do anything I wanted. I played basketball competitively until about seventh or eighth grade. And around that time, yes, around that time. Yes, I played basketball. Around that time. Everybody grew and got faster, and I stayed short and slow. So.

Anna Jaworski  
I can totally relate to that. And I don't have a heart defect. Wow. But I'm shocked that they said okay to competitive basketball. My sister used to play basketball, and she would get knocked on the ground and running back and forth up and down the court. That's a lot of work. 

Texas  
Yes, yes, it was. I still play regularly now. At work, we would go out two or three times a week and play basketball about...

Anna Jaworski  
Wow.

Texas  
Five or 10 of us and...

Anna Jaworski  
I love that. That's so awesome. Wow.

Texas  
Not too much anymore right now with the COVID thing but yeah, prior to that we were able to. 

Anna Jaworski  
Yeah, yeah. You said that you fell out of care for about six or seven years. No wonder if you're out playing basketball and having fun with people, you probably didn't consider that you needed to see a cardiologist all the time. Why is it though, that you did stop seeing your cardiologist?

Texas  
After graduating high school, I went off to college, my first two years my freshman, and sophomore year, I would go and see my cardiologist when I came back home during a break. After that, I moved up to the town permanently for my last few years of college. And I really never thought anything differently. Because all my appointments after my Fontan, it was always the same thing. Everything looks the same. You're doing good. You look fine. There were no concerns ever. So I just figured, hey, I'm fine. You know, I'm 21 now, I'm a male and why do I need to go see it if all they tell me is every year I'm fine.

Anna Jaworski  
So I'm wondering, did you not have a Holter every year, an echo every year? Did they not do any of those kinds of tests on you?

Texas  
I had a Holter I think about every other year, I had an echo every year. But even during those follow-ups, they were always the same thing. Everything looks the same from the time you had your Fontan at 8 years old, you still have the same regurgitation. It hasn't changed. You know me being a male and being stupid. I was like, Okay, well, there's really no need for me to go do this because I feel fine. You know, I'm able to go out and play basketball with my fraternity brothers or play flag football or do this or do that. And, you know, I didn't see a reason for me to go back and see the doctor during those years.

Heart to Heart with Michael-Speaker 1  
Texas Heart Institute were offering us a mechanical heart and he said know that I've had enough to give it to someone who's worthy.

Heart to Heart with Michael-Speaker 2  
My father promised me a golden dress to twirl it he held my hand and asked me where I wanted to go.

Heart to Heart with Michael-Speaker 3  
Whatever strife or conflict that we experienced in our long career together was always healed by humor.

Michael Liben  
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.

Disclaimer
This content is not intended to be a substitute for professional medical advice, diagnosis or treatment. The opinions expressed in the podcast are not those of Hearts Unite the Globe, but of the hosts and guests and are intended to spark discussion about issues pertaining to congenital heart disease or bereavement.

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

Anna Jaworski  
Texas before the break, we learned a little bit about your heart condition, but now I'd like to invite Whitney into the conversation with us. Whitney, you were with Texas for six years before you got married. What did you know about his heart condition before you were married compared to now 10 years later?

Whitney  
Well, when we were dating, and when I first met him, I didn't really know anything about heart conditions. I've never known anybody that had a heart condition. So I didn't have a lot to go off of. And then when I met him, he didn't really mention it. But then his mom told me about it. He did everything normal. And he looked normal. And he never didn't have anything that he couldn't do. And so to me, I just thought, it's fine. He's fixed. He had heart surgery. Now he's fine. That was all I thought about, and I didn't think twice about it, because I didn't know anyone that had had it and what to expect, really. But now I can explain everything about his surgery he had when he was little, I can explain the reasons that things are happening now. One of my best friends is a nurse, and she heard me explain about him one time and she said, I'm so impressed because I knew all the medical, I knew the medical terms. And so I have really educated myself.

Anna Jaworski  
Wow, he's so lucky to have you, Whitney. Thank you. Now how old was he when you first met? 

Whitney  
21. 

Anna Jaworski  
So this is right when he quit going to see the cardiologist.

Whitney  
Yeah. And he was playing basketball. And he was being all the normal college boy things. And I was 19. So I was pretty young. And I didn't personally have any health conditions. So it never really crossed my mind to look into it or ask about it. He just said he was fine. So I took it as, Okay, he's fine.

Anna Jaworski  
Sure. Yeah. I mean, if I saw a guy who was able to play flag football and basketball like he's talking about, and his lips were not blue, because he was "fixed." I probably wouldn't worry either. All right, Texas, you're up. Tell me about what happened to make you decide to get back into care.

Texas  
Really, when I graduated college, and I moved up to Longview with Whitney, I went to go see a primary care doctor to get a yearly checkup. And she was talking to me, and I gave her my medical history. And she asked me, Are you seeing a cardiologist? And I said, Well, no, I've actually haven't seen one in six or seven years. I've been taking my medicine six or seven years. So I probably need to see one. So she actually sent me over to a local cardiologist, just a regular cardiologist who knew somewhat about CHDs, but he wasn't well versed in them. 

Anna Jaworski  
Sure. 

Texas  
So he started to do the yearly echo, and he would send it off to a doctor up in Dallas for them to read it and then send it back as a consult. So he could kind of tell me, Oh, yeah, everything looks good. Everything looks normal, considering, type of thing. So I saw that doctor for probably six or seven years,

Anna Jaworski  
Wait a minute. So six or seven years ago, you saw this cardiologist who was not specialized in adults with congenital heart disease, but he was smart enough to do an echo and send it off to Dallas, where somebody would understand what they were seeing with that echo and would consult with him to make sure that everything was still okay.

Texas  
That is correct. Yes. 

Anna Jaworski  
Okay. 

Texas  
So I was going along for six or seven years. And then two years ago, I woke up with a really bad pain kind of in the middle of my back. So I went to work. And then I actually had to leave in the middle of the day because it hurt so bad. And I ended up getting diagnosed with gallstones. And apparently, one of the gall stones had gotten stuck in the duct or something. So that was causing the.. 

Anna Jaworski  
Yeah. 

Texas  
...causing the pain. So, unfortunately, they couldn't operate right then. So I had to wait a couple of weeks for the operation. And during that operation, the surgeon that was doing the removal noticed my liver didn't look right. So he took a liver biopsy. And when I had a follow-up with him, he said cardiac cirrhosis. When I hear cirrhosis, I'm thinking, Okay, was it because of all the drinking I did in college? Is it because I have an occasional drink? Now, you mentioned cardiac, he said this doesn't have anything to do with alcohol. So this is more likely to do with your Fontan. 

Anna Jaworski  
Right.

Texas  
He actually did a rotation at Breckenridge. So he was familiar with the procedure that I had eight years old. He knew a little bit about it, but he didn't know enough but he knew I needed to go see somebody else. Okay, after that I started to search online and everything. And I came across an article about Fontan and livers. I started to read about that. And I found a couple groups on Facebook, and I started reading tons of them. And during that time I found the adult congenital heart program down at Texas Children's in Houston with Dr. Ermis. 

Anna Jaworski  
Yeah. Oh, he's amazing. 

Texas  
Yes, yes. He's amazing. He's great. He's been great these last two years that we've been going to see him. So I started that program. I'm also seeing a hepatologist over at St. Luke's, for my liver, he diagnosed me. They say it's cirrhosis just because that's the term they use. But they also found out that I had a genetic iron overload disorder called hemochromatosis, which the first thing it attacks is the liver. So I kind of had that double whammy with the Fontan and the FALT, and then the hemochromatosis and the iron. So for about 10 months after being diagnosed with the hemochromatosis, I was having to go every other week to get blood taken out of me about half a pint I think they were doing just because of my heart condition. So I did that for about 10 months, and they were actually able to get my levels down low enough. And I've been staying at that level for the last I guess, 14 months. It's been quite a journey these last two years.

Anna Jaworski  
Wow. My listeners may have heard you say the word FALT and not everybody knows that there stands for Fontan-associated liver disease. And that's what doctors nowadays, especially the ACHD doctors, the adults with congenital heart disease doctors, are calling his condition instead of cardiac cirrhosis. That's the old-fashioned term. So the new term is Fontan-associated liver disease. And yeah, I can imagine that hemochromatosis, it just beats up on the liver some more, let's give the liver even more red blood cells to have to process, and it's already possibly congested a little bit just from being a Fontan-er, and having so many red blood cells. Yeah, you definitely have a double whammy. Exactly. Whitney, liver issues are not uncommon with Fontan survivors. That's why we have the term FALT, Fontan-associated liver disease. Can you tell me how your family has been affected by the new diagnosis that Texas received?

Whitney  
Our life in the last two years has completely changed from what it was before. I feel like getting all of this information and the diagnosis that he has, it has made us appreciate everything more and plan and think about things more. We have to plan for medical bills. Our food has to be planned a certain way, we've had to cut a lot of salt out. I had to clean out the cabinets because he needs to do low sodium diet. So we cleaned out all the cabinets and are much more conscious about food. And we cleaned out the alcohol cabinet and all the spices, you know have a lot of sodium in them. So I made new spices. I bought new cookbooks. 

Anna Jaworski  
Wow.

Whitney  
We have to really plan our food, especially having two smaller children. Finding food to fit our whole family that everybody likes has been a challenge. I've done a lot of research and trying to find things that will fit our family. He started working out like right after all of this. He got a trainer, and I make sure that he has time to work out every day. And for his doctor's appointments. We go to Houston twice a year, and we go down we get a hotel, we have to plan taking off work and all of that to do all of those things. But I feel like it's important for us to do that.

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Home. Tonight. Forever.
Home. 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.

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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.

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I love the fact that the proceeds from this CD are actually going to help those with congenital heart defects 

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Home. Tonight. Forever.

HUG Message 
Heart to Heart with Anna is a presentation of Hearts Unite the Globe and is part of The HUG Podcast Network. Hearts Unite the Globe is a nonprofit organization devoted to providing resources to the congenital heart defect community to uplift, empower, and enrich the lives of our community members. If you would like access to free resources pertaining to the CHD community, please visit our website at www.congenitalheartdefects.com. For information about CHD, the hospitals that treat children with CHD summer camps for CHD survivors, and much, much more.

Anna Jaworski  
Wow, right before we went to break, Whitney talked about some changes that they've made in their lives. And I just think, Texas, you are so blessed to have a wife who is so supportive of you, and who cares so much to really change everything. I imagine you guys don't have hot dogs and Kraft macaroni and cheese for dinner because it sounds like she's on top of your sodium intake. And she's trying to really optimize your life.

Texas  
Yes, she has been amazing. I couldn't do this without her. She has been a rock throughout these last two years. I'm very lucky to have her, and our girls are lucky to have her as a mom.

Anna Jaworski  
I think you guys are all lucky to have each other because I've really enjoyed talking with you too, Texas. And I know how much your little girls mean to you. I want to know what the hardest part about reestablishing care with an appropriate cardiologist was for you.

Texas  
Probably the hardest thing is getting all my old medical records. Because I was out of care for so long. Apparently, there's some regulation or something where if you don't see them for a certain amount of time, they destroy the records. So it's been really hard getting those. Luckily my mom had some copies of my old records prior to my Fontan. So we were able to get those and get those to the cardiologist. But unfortunately, some of the notes and those charts do not match what the doctor sees currently. So he's not sure if maybe, since I was so young, and it was so new, you know, maybe they just misdiagnosed it at the time, or something like that. The hardest thing right now is just not having all those old medical records from my Fontan surgery and the years from when I was in care.

Anna Jaworski  
Yeah, I cannot emphasize enough on this program, how important it is for people to get their medical records if at all possible. This is something that we've talked about on other episodes, too. Doctors love you, if you come in and you have a binder with all of your old surgical reports and some of those documents that it may be hard for them to get their hands on, and they're in the medical field. So if you can do it, or your parents can do it, it's like a treasure trove. So many doctors I've talked to have said that when their patients do that it helps them so much because you're absolutely right, Texas, things change. The terminology that is used sometimes changes just like we were saying with the cardiac cirrhosis and the Fontan-associated liver disease. They mean the same thing, basically. But they changed terms after a time. And now, no offense, but you're kind of an old man, 

Texas  
Yes, I am. 

Anna Jaworski  
Not really, but for a Fontan-er. How awesome is it that you have made it more than two decades? I mean, I think that's really, really awesome. 

Texas  
Exactly. 

Anna Jaworski  
You present a whole different kind of challenge for your doctors and having those medical records does make a huge difference. Whitney, what advice do you have for others who are caring for a Fontan survivor?

Whitney  
I think that it's important for people to educate yourselves. I go to the appointments because I feel like they can sometimes be one-sided, he can hear what he wants to hear. And I like to hear what they say also, because you never know what the takeaway will be. So it's nice to have two ears listening. And that way I also can help support him by knowing what the instructions are and what they say to him about what's going on with his body. But I also think that it's really important and this is for both people, not just the caretaker, I feel like it's important to be sensitive and patient with each other. We have had to have a lot of discussions about our kids and our family and how we're going to do things and we have to understand each other and how each other works in order to be a team and to make things the best they can be for our family and for him and making sure everything is taken care of.

Anna Jaworski  
Absolutely. You're very intelligent. Are you also in the medical field somehow because you sound very knowledgeable?

Whitney  
No, but that's so nice.

Anna Jaworski  
Well, let me ask you this Whitney, and you don't have to answer if you don't want to. Did you pause before you decided to start your family, knowing as much as you do about your husband's condition now?

Whitney  
Well, we had the girls first. I mean, we knew we had a heart condition. And when I was pregnant, they brought in a specialist to check their hearts. We didn't have the information until after we had our first daughter. So now that we're in it, when I have the two girls, it's changed how our future planning is, because you know, we were already there, and I have them and I wouldn't have changed anything, no matter what. He lives a very, quote, normal life as much as we can. He does everything, he plays with them. We have a very full life. And I feel like that's really important for him. 

Anna Jaworski  
Oh, absolutely. 

Whitney  
And for me, yeah. 

Anna Jaworski  
And for your girls. 

Whitney  
Yes, yes, for sure.

Anna Jaworski  
And just so our listeners know, we've been very blessed that you haven't had...

Whitney  
Yes. 

Anna Jaworski  
That carry over to your children. 

Whitney  
Right. 

Anna Jaworski  
Now it sounds like you weren't even really worried about it when you got pregnant because that was still when he was not in care. And everything was supposedly just fine.

Whitney  
Yes. Now, we were never really worried. Even when I had the sonogram done, and they checked. It just wasn't a big concern. Then if I knew all the information now that I know, it might have changed things, but at least about being nervous, more nervous than I was.

Anna Jaworski  
Sometimes ignorance is bliss, right? 

Whitney  
Yeah. 

Anna Jaworski  
I don't recommend that. And everybody knows knowledge is power. However, when you're pregnant, most mothers have enough worries that not having to worry about that was a huge blessing for you. 

Whitney  
Exactly. Yes. 

Anna Jaworski  
Okay. Texas, given what you've experienced over the years, what is the most important lesson you've learned regarding taking care of yourself as a Fontan patient?

Texas  
It's a good question. Probably even though your doctor says you're fine, everything looks the same, keep up with your appointments every year, go and do the echo. Do the Holter. Do the stress tests just stay up with it every year because you never know what will happen with the liver, apparently, and that was something that's been around or discovered the last 5, 10 years or so I might have been able to get on that a little bit sooner, find the hemochromatosis and yeah, limit the amount of damage to my liver that occurred during those years. I wasn't monitoring it. Even though your doctors say you're fine. Everything's great. Stay with them. I know. Being a male and being young and going off to college, you don't really want to think about that. But really just make sure you stay up to date with your doctor.

Anna Jaworski  
Yeah, yeah, I think what's wonderful is that it sounds like if things are really going fine, it's a once-a-year appointment. So it's not like it influences too heavily what your quality of life is, for the other 364 days, five days if it's a leap year. 

Texas  
Right, right, exactly. 

Anna Jaworski  
I think that's excellent advice. And plus, like you said, The other concern, too, is if I fall out of care, what's going to happen to my medical documents. So if you're not seeing your doctor, make sure you get your medical documents. 

Texas  
Yeah. 

Anna Jaworski  
So that when you reestablish care, you already have everything in a safe space, a binder or some kind of book or something. 

Texas  
Yes, exactly. 

Anna Jaworski  
I think that's brilliant advice. And I want to thank you for coming on the program today. I can't believe our time is up already. It has just flown by. Thank you so much, Texas for coming on the program.

Texas  
Thank you for having me.

Anna Jaworski  
I love how humble and self-deprecating you are. I think your cautionary tale is very, very important for everybody to hear. You can still be that guy that takes the world by its horns and does amazing, incredible things and lives a fabulous life and has wonderful children and a beautiful wife and still see your doctor so that you can be around even longer with them. 

Texas  
Exactly.

Anna Jaworski  
Because I know you're gonna want to see your grandchildren someday. 

Texas  
Oh, yeah, definitely. 

Anna Jaworski  
It happens before you know it. What a day! It has been a delight talking to such an informed and supportive wife. Thank you so much for coming on the program today.

Whitney  
Thank you so much for having me. I enjoyed it. 

Anna Jaworski  
Yes, this was so much fun. I'm so impressed with all the dietary and vacation changes everything that you've done and also to make life fun. When he has that appointment and you go down, you stay in a hotel, you let the kids swim in the pool. I mean, I think that's just brilliant. I could just envision what it was like for your family.

Whitney
Yes. You know you've got to make the best of everything and we soak up every minute. 

Anna Jaworski
I just love that. Well, that was so much fun, but that's it! That's this week's episode, everybody. If you enjoyed this episode of Heart to Heart with Anna, check out a new app called GoodPods. It's a free app that you can use to see what podcasts your friends are listening to and vice versa. So if you subscribe and listen to Heart to Heart with Anna on the app, it'll be a great way for others to learn about our program without you even having to say a word. It's so easy for people to feel isolated, but remember, my friends, you are not alone.

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

Transcribed by https://otter.ai