The Changing Landscape of Care for Young Adults with CCHDs

Returning Guest, Vicki Lucas, shares with Anna how care for her son, Alexander, has changed over time, especially as he has transitioned from pediatric care to care for an adult with a critical congenital heart defect. As a special education teacher, Vicki has worked very hard as Alexander's advocate and she shares what she has done to help him be an advocate for himself. She also gives tips to parents on how they can best prepare their adult children as they leave home and go off to college. She also shares her family's journey for the right cardiologist for Alexander after his cardiologist since childhood retired.

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Transcript

spk_1:   0:00
I thought it was amazing. She wanted to know about everything. And she said We as adult congenital heart doctors have to look at the individual as, Ah, whole package and not just the heart.

spk_2:   0:18
Welcome to heart to heart. With Anna, I am Enna Dworsky and the host of your program. We're happy that you're here with us today. I want to start this episode by giving a shout out to Nancy Jensen. Nancy Jensen is a producer of heart to heart with Michael, and she has become a patron of the hug podcast number. Heart to Heart with Anna and Heart to Heart With Michael are the two podcasts that are part of the Hug podcast network. Thank you, Nancy. We're becoming part of our team and shout out to our newest patron, Vicky Lucas. Thank you, Vicki, for joining us at the defender level. I really appreciate your support. Today show features a heart bomb, and our episode is entitled The changing landscape of Care for young adults with critical congenital heart defects. Many of my faithful longtime listeners well remember today's guest, Vicky Lucas. She was on our program in Season 10 and she talked to us about some special education transitions that many of our heart warriors go through.

spk_3:   1:14
Vicky Lucas is mom to three young adults, sense Zach, Alex and Ian, Vicky said. Alex was born with hypoplastic left heart syndrome. Vicky guided Alex through the transition of his educational, social, emotional and medical needs and is able to advise other parents implanting higher educational goals for their Children. Vicky is certified in regular and special education. She taught special education for years before becoming a heart mom. She is currently active as a special education advocate, and she works for her local school district. She is here today to talk to us about Alex's changing needs. Is a heart warrior growing up with a critical congenital heart defect? Welcome back to heart to heart with Anna Vicky.

spk_0:   1:59
Oh, it's wonderful to be here. Thank you.

spk_3:   2:01
Well, let's start first by talking about Alex's surgical history just so that we can get a picture of a person with a critical congenital heart defect. Did he have the typical three stage nor word Fontane procedures?

spk_0:   2:14
No, Alex did not. Alexander had the Blalock Taussig shunt, which caused a revision since the shunt was one millimeter too small and they debated and they actually argued. And they took him back into surgery, emergency surgery, and installed a one millimetre larger sent. Um, I missed this history. Wow, that was the debate.

spk_3:   2:39
That was the debate. Oh, my goodness. You would not think one millimeter would make that much difference, But with our heart kids, it can make a big difference. So he had the Norway. He had revision of his Norwood. Did he go on to have the bi directional Glendon the Fontana? After that,

spk_0:   2:58
he had the bi directional Glen or the Hemi Fontanne. And then he had a completion Fontane, where Administration's replaced during the course of the fun time.

spk_3:   3:09
Okay, so that is a fairly typical course of action for somebody with his heart defect. Right. Okay, So tell us about his medical history as he has been growing up. We know that a lot of kids with Rachel hs end up having arrhythmias. Has he been prone to arrhythmias or had any other problems?

spk_0:   3:30
He really pretty IQ wise has had a fairly uneventful childhood and teenage years. He had no known arrhythmias until he went on college study abroad this summer.

spk_3:   3:44
really.

spk_0:   3:45
It never caused a problem that sent him to the hospital or made him feel woozy, dizzy to the degree of where he go. I'm so sick. I don't want to get up. He's really had a nun. Remarkable medical history other than we recently in the last seven months had an episode with anesthesia because we never had to go under to that great degree. He never did. And he had a very significant event with anesthesia, where he took him hours to come out of anesthesia.

spk_3:   4:16
Wow, that's scary.

spk_0:   4:19
And he had a cardiac anesthesiologist, a pediatric. So he still had an episode as an older adult young adult, a cz a child. He had pleural effusion tubes, which we went to Children's Hospital of Philadelphia and handled things there, had a pediatric, cardiac anesthesiologist and team on standby. We've dealt with broken bones and

spk_3:   4:41
the typical things that a kid one normal, normal

spk_0:   4:44
childhood things. Yeah, I mean, he's had the atypical. He had a Venus angio MMA, where we went to chop and studied with a neurologist and said,

spk_1:   4:53
No, he's okay. Just keep an eye

spk_3:   4:54
on it. Wow. Now, for those of us who are not doctors. What's the Venus angio? MMA, that's something new for

spk_0:   5:01
you here. And our young adults with congenital heart defects are specialised in rare things. And in his case, this was a venous anomaly in the brain, and it just was probably they feel something that happened during one of the surgeries when they might have been putting the demonstrations in. And that's the only explanation is that the vein became slightly occluded and tissue

spk_1:   5:29
grew. And you just said, you know, just one of those weird things.

spk_3:   5:34
So how did you know there was a problem? Was he getting headaches?

spk_0:   5:38
Hey, actually conked his head when he toddler, they came running out to tell us we needed to explore this. We did. We took him to a neurologist at Chop, and when he conked his head again a couple years later, they came running out in panic and we said, Oh, it's nothing.

spk_1:   5:56
They looked at us like

spk_0:   5:58
we were crazy.

spk_3:   6:01
But this is something that you've had to deal with for years, and they don't seem overly concerned about it.

spk_0:   6:07
No, they're like if it hasn't bothered you and you don't have headaches, it's fine and We've been back to see a couple people just to get a look see, and yet it's there and it's no big deal.

spk_3:   6:19
So I was like, It's something. It's going to go away. Okay? Wow. Well, what has Alex's biggest cardiology concern been since he has reached adulthood?

spk_0:   6:30
Oh gosh, I think locating an adult congenital heart defect, cardiologists and accredited cardiologists and then also along the way, educating people to any modifications or adaptations in college that he might need. He's got a very strong relationship with his medical office and staff at the college and has adaptations in place, and he's working on self advocacy. He's done a great job. He sets up his C calls and sets up his own appointments. And he's, I think, understanding Maur of what he's gone through enables him to go to a specialist or someone and say my heart definitely might have an impact on this. And if you have to do anything medically to me, you need to know I can't take this medicine. I can't do that kind surgery. So he's become a lot more vocal and saying, No, I can't do that. We had to tell the dentist that he could not have nitrous oxide.

spk_3:   7:34
OK, And why was that?

spk_0:   7:36
They wanted to put him under with nitrous to guess, do feelings or something. And they definitely I said, Do you understand what we're dealing with? I was very kind and polite, and I said, Here's some research and documentation. There isn't enough research to know how nitrous impacts multiple complex congenital heart defects. And I need for you to understand that there's not enough proof that it's safe. So we went somewhere else.

spk_3:   8:08
Wow.

spk_0:   8:10
I told her Either we do it without nitrous or we need to go somewhere else.

spk_3:   8:16
And so you ended up going someplace else. Now, was that you advocating for Alex? Or was that Alex advocating

spk_1:   8:23
this, uh, at the time, me, He waas in the eighth grade.

spk_3:   8:31
Okay, so he was still a kid. He was just a kid. Still, But he saw you doing yet? Yes, Yes. And that obviously left an impression on him.

spk_0:   8:42
I hope so. He's calling his own doctors now, and they call him and he puts his number down first, and I have to get permission to see everything and sign everything.

spk_3:   8:52
Huh? Which is worrisome. Yes, that's where we want them to be. A I mean, I think it's awesome that he wants you to still be involved because he knows that you're the historian of his heart history and that you know and love him. And it's always great to have an advocate. They're for you. It's always great to have another person there. Toe. Listen, in case you missed something, because you have a question later, you can always turn to the person you brought with you to say. Did I hear that Roy did. They say they want me to double this or do that? And I mean, you'd like to think that you're attending to the doctors, every word and that you'll remember everything. But you know, we're all human, so sometimes we get a little distracted or were uncertainties of bringing another person. Whether it's a parent, a spouse, a friend makes a lot of sense and the fact that he feels comfortable enough with you for you to be, that person shows that the two of you have a very special relationship.

spk_0:   9:47
Very strong is a matter of fact. Speaking of hearing we have in the last year so he had a ear ache. There was an infection in his ear, and the doctor discovered of pretty significant sized hole in its ear drum. And that's been something. He's made the appointments. He has set up the surgery. He has handled that, and the doctor used us as a historical reference, and we have to supply lots and lots of communication with the cardiologists at the time he was cared for in Pediatrics at Johns Hopkins

spk_2:   10:28
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

spk_4:   10:39
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.

spk_2:   10:49
I love the fact that the proceeds from this CD are actually going to help those with heart defects

spk_4:   10:55
join music home

spk_3:   10:57
tonight forever.

spk_5:   11:00
Look, take this hot industry. We're offering us a mechanical hot, and he said, now that I've had enough to give it to someone who's worthy. My father promised me a golden dressed twirled it, held my hand and asked me where I wanted to go. Whatever strive for conflict that we experienced in our long career together was always healed by humor.

spk_4:   11:24
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_2:   11:35
you are listening to heart to heart with AMA. If you have a question or comment that you would like to dress down show, please send an email to Anna Dworsky at Anna at heart to heart with anna dot com. That's Anna at heart to heart with anna dot com now back to heart to heart with him.

spk_3:   11:53
Before the break, we were talking with Vicky about Alex's medical history, But during this segment, I want to focus on Alex's transition care and especially the transition from pediatric cardiologists into a cardiologists who works with adults. So let's start with that. Tell us about that whole transition and what it entailed for you and Alex as fours,

spk_0:   12:17
the parents and us you have years to mentally prepare for letting them fly. Medically, it's one thing to send them off somewhere to work or college, but toe let them fly medically is really a challenge and you're used to being in the front row of the front line. And now we're the reinforcement team in the reference material.

spk_3:   12:38
I like that. That's so nice Reinforcement. That's so much better than backseat driver. I definitely

spk_0:   12:49
need to remember my verbal duct tape when I'm in the office. Yes, and sometimes I will ask him, Would you like for me to come in with you? Because I sometimes feel like it saves the doctor from having to repeat everything. Shar. So you fight, just come in and agree not to say anything. And I keep looking at him directing the attention to him. I think they talked to me less, and they turned to him and talk to him.

spk_3:   13:13
Right? Right.

spk_0:   13:14
Alex is almost 22. He'll be 22 in August. Wow. The last time we saw a pediatric cardiologist was last December, and we felt like we had to find someone as soon as we possibly could because his cardiologists was the most wonderful woman Dr Jane Crossing at Johns Hopkins. And she retired and

spk_4:   13:37
she had seen this,

spk_1:   13:39
but she was tired,

spk_3:   13:40
huh? Don't you hate it when that happens?

spk_0:   13:44
Because you didn't have to go and explain yourself and your child. You explain your young adult all over again from the beginning, and you're like, I know this and you always send records and the really good doctors will read them. But some don't, especially when they're specialists. They don't have that background of record material to go on. My It was interesting because a few months ago I had a checkup myself with cardiologists just a yearly thing. And I brought him along because I thought that he might want to see my cardiologist if we could not find an a C H D doc, right? And she speaks up and says, My friend is that University of Maryland Medical Center and she is fabulous. She's one of the very best that I did the research, and she is truly one of the very best. And so she got on her cell phone, texted this doctor and got us in. The doctor sent her back a message and said that I'll be putting you in touch with this family and with this young man. So they pulled on me appointment. It was kismet. As they said,

spk_3:   14:55
My gosh, that is amazing.

spk_0:   14:58
It is an extremely difficult program. Many of these a CHD hospitals and doctors have waiting list for the transition. Yeah, we made it. Wow. But it was because we were in the right place at the right time with my doctor and a contact on. And she said, This is my best friend. Oh, just see your way. We're able to get in very quickly On a day when she didn't normally see people. Wow. And she spent two and 1/2 hours with my son.

spk_3:   15:32
Oh, my gosh. Two and 1/2 hours. That's amazing. So how did Alex react to that?

spk_1:   15:39
Well, typical young adult fashion by the end of two hours. He was tired of this in one of the go eat or something and share I shouldn't keep was really an eye opener for him because she worked on the full integration of the cardiac system with the rest of the systems of the body. She asked him, Tell me everything. What have you seen any doctor for in the last couple of years? Tell Mae and the we had some issues that

spk_0:   16:04
we've seen with the ear emerging issues with liver and dental. She talked about being a young adult, transitioning. And hey, you're in college on health study and go and do you know what you know? Do you drink? And it goes. No, The good news is he tried it. He tasted it when he turned to anyone, and he hated it. So I'm like, Yes,

spk_3:   16:30
age eventually. But at least he's not at school being a party animal or anything.

spk_0:   16:37
No, he is not a party animal. He's a very serious individual. Chan. He's not reclusive. He just likes to be alone.

spk_3:   16:46
Yeah. So he he's an introvert.

spk_1:   16:48
Yeah, and she talked to him about Do you exercise? I'd like you to get on a stationary bike about 10 minutes a day. You know, he walks and he does things. He does not sit and play games or anything he has multiple interest in. I thought it was amazing. She wanted to know about everything. And she said we as adult congenital heart doctors have to look at the individual as ah, whole package and not just the heart.

spk_3:   17:15
Yeah. Oh, I love that. That's awesome. Okay, So you had this amazing visit. It looks like he has a new cardiologists. You really like it. Respect. It sounds like he already has a good report with her. So how hard has it been for you to have him away at college? Quite a distance. I mean, it's two hours.

spk_1:   17:34
Yeah, well, Shepherdstown, West Virginia, is almost two hours. I'm comfortable with the fact that he's a bit of a distance away, but not too much, because he's been able to advocate for himself medically at the college. That was one of the things I instilled in him is Just go right up to them and say, Wears medical office, right. I need to see you weekly of possible allow and a dumb question. But it makes sense to parents who have a compromised child. Where would you land a helicopter in an emergency?

spk_3:   18:07
I know, right? I had the same question. No, honestly, I had the same question. When Alex went to school in New York, I said Okay, so if there's a problem, how are we going to get him? Because I did find a clinic in Colombia. I mean, it was amazing amazing facility, and we got in with an amazing doctor for him, but yeah, that was My question to you is how are we going to do this? You have to think of those logistics. And we It's good that

spk_1:   18:36
you asked. What would you do? We're going to send someone can't be treated at the medical center here, right where your office is on campus for if they can't be treated at the local small, tiny hospital. Whatever. Where do you go and what you did, right. So we make plan B that he would be flown to. Probably now it will be ummc.

spk_3:   18:58
Okay, that's great. Does you've gotta care. Plan in place. You have an emergency plan in place. Wow, that's him. And he

spk_1:   19:07
comes home for his

spk_0:   19:08
cardiology visits or his other visits to other specialists. Okay, so he doesn't have a car, so we need to go and get him. But he does have a driver's license and he drives himself around and he's like a very conscientious little old man driving around. It's really, like critical of other people's drive. So we've been very, very proud of him. His stamina and college is taken into account. They offer him adaptations of extended time for testing, testing in a quiet environment. He may have a snack and water with him. Or he may step outside to go to the bathroom, get a drink of water or whatever, and up to 15 minutes. So he's got some adaptations built in

spk_5:   19:56
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spk_4:   20:31
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spk_3:   21:06
Vicky and this segment. I really want to talk about finding that right to cardiologists for Alex and the new medical conditions that he is dealing with what has been the biggest challenge of finding that pediatric cardiologists who specialized in working with adults with congenital heart defects

spk_0:   21:25
I would say the biggest issue was finding an accredited doctor on a C H D doctor taking care of transition and preparation, getting our materials, making sure they were together. We actually had a small folder of the summaries of the 1st 4 surgeries right when we handed it to the doctor, it was almost like handing her gold.

spk_3:   21:48
Yes,

spk_0:   21:49
she was able to get all of his records from Johns Hopkins and his films and everything, but she could not get that stuff that we had. Those old original first time records of surgeries are gold. Yes, they immediately read them and scan them, and she asked countless questions about that, and they did an echocardiogram. No one ever took the time to clearly show me and him his fan ist rations that were still there and open. So they talked about everything, really was such a comprehensive visit. This tech showed us everything, and they turned the screen to him and showed him. Ah, it was so well done. But I think our biggest challenge is where to start. Where we where would we go now? We have resource is in the last two and 1/2 years or so, we've been able to access. The increased resource is through the A C H A that we were not able to find before, right. As with different events, we could get list of hospitals that were credited and doctors that were credited.

spk_3:   22:58
That makes such a huge difference it for those listeners who aren't familiar with the A C H A. If you go to their website, it's a ch a heart dot or GE, and it's the Adult Congenital Heart Association. Viki is right. They've done a fabulous job of gathering information about accredited doctors and accredited hospitals, not just in the United States but all over the world, which is really nice when our kids want to travel

spk_0:   23:26
even Alex is thinking in the future like Where do I want to live? He's so young, is so wide open to where he wants to live. Sure,

spk_1:   23:32
but he looks so in

spk_0:   23:34
a CH hospital and doctors sheriff. He looks for

spk_3:   23:38
that out of

spk_0:   23:40
him for doing that.

spk_3:   23:41
Yes, that shows you've done such a good job helping him to understand the seriousness of his condition and that if he wants to have a healthy quality of life, then he needs to live in an area where he has easy access to a good hospital that will know what to do with him and not be freaked out if he comes in and has a broken bone or something, which is it related to his heart. But then they see his chest and they freak out, and that does happen. I hear about that happening all the time, so tell us about the new medical complications that Alex has had. You said something earlier about the liver, Tell us what's going on there?

spk_0:   24:17
Well, I think the most prominent issue and difficulty that we've dealt with in the last year and 1/2 to 2 years is the rising presence of cardiogenic cirrhosis, the rigidity of the liver. He has not had a biopsy, but they are absolutely certain that he has cardiac cirrhosis. He's had several cities. He's had ultrasounds. But most important, every six months he gets complete blood work and he gets an M. R. I. We were disturbed by this news us. We knew that there would be liver problems coming, but no one ever alluded to the rigidity of the liver. What we really focused on was, was he going to get protein losing, interrupt a thief or pl eat right? And the crazy thing is, is he waas so fortunate not to have to deal with that all of these years? Some of our friends are not so fortunate. He never has had an issue with P L. E. His new cardiologists is very focused on addressing the pressure's very focused on addressing the flow of blood and the impact on the liver. And they actually started to talk to him about the distinct possibility of transplant and whether to do the single or the double. Wow. And that's a big thing for the doctor, the first doctor ever to utter the word in the room, and it didn't shake my world as much as I thought it would, because we've always thought that that was a possibility.

spk_3:   25:55
Share, sure. How did Alex handle it when she said the word transplant?

spk_1:   26:03
I think it went very well for him. Good. He did not break down. He did not get upset. If he wants to, I want him to research, and I want him to ask me and I'll sit down with him and we'll go over

spk_0:   26:15
that because we need to face this as a distinct possibility. Share his liver there of the thought that it is better to do both lands as soon as we get a chance. He currently has a hepatology ist with Johns Hopkins, whom we love, and his focus is to treat the patient. He has about 18 cardiac patients, and they're watching Alex's liver cells every six months for signs cellular change in order to head off cancer. Good as if we didn't have enough

spk_3:   26:53
right now, right? I think we have so much to deal with. So tell me what advice you would offer families who are in the same circumstance that you are. They have a young adult who is starting to be an advocate for himself, who maybe has found an adult certified pediatric Cardiologists said they know about a CH D conditions of possible consequences. What do you tell a parent who's Annette situation to help them, have their child have a good quality of life?

spk_0:   27:23
I think the most important thing that we've dealt with this being up front with him without saying you can't do things and your terminal You can't lead a life like that. They have to have as much of a normal life. It's possible, and it's important that parents and caregivers and partners, wives, husbands, stay in touch and stay involved. It's not meddling. And if he as a young adult, doesn't want me to come into that room with him at the doctor's, I will do it. I'm going to ask him what happened when you were in there. What did they say?

spk_3:   27:58
Yes,

spk_0:   27:59
and I also want to be his medical backup. In case they can't reach him, they can reach me, Sheriff. The caregivers are the most important resource we live with or no, this person better than the physician would know them. So we can say, Well, I don't think he's being totally truthful because I've seen him complain about his belly ache or something. No, exactly. It's really important. We have to make sure that the young adult educates themselves well enough to give a brief synopsis of their condition. Their medicines in their history get all their medical records together. Yeah, and his records were pretty consolidated. And he takes with him to college a folder that he can bring along with him to the doctor.

spk_3:   28:41
That's great.

spk_0:   28:43
You know, we were talking about new conditions and things that pop up, but I think the first thing that parents do is we joke and we go, Oh, dear.

spk_3:   28:51
Yeah, because we're always waiting for that other shoe to drop. And then it does. And then you think, Oh, no, like, I haven't had enough to deal with being

spk_0:   28:59
medically informed for him, for us and having wonderful friends and family and ah, heart community is so critical because we need to provide parents and young adults and caregivers with information that is realistic and accurate and not supposition. It needs to be sexual and not scary exactly. But

spk_3:   29:27
when you make a factual, and you're very matter of fact about it. Then you can move forward and prepared the best treatment plan possible. And I think Alex is a great example of somebody who's had a very strong advocate for a mom and learned to become a strong advocate for himself. So thank you for sharing all of that with us. You've been amazing.

spk_0:   29:45
Thank you. Thank you very much. It's been wonderful.

spk_3:   29:48
I know it. I can't believe you're already dead. Wow. Well, friends, I hope you've enjoyed this episode of Hart to Hart within. And I'd like to invite you to consider becoming a patron of our program For the cost of a pizza, you could be a patron for an entire year. We have all kinds of benefits for those who would like to support our program. Just head on over to pay tree on its www dot p a t r e o n dot com backslash heart to heart, learn more about us and join our team. And that does conclude this episode of heart to heart with Anna. Thanks for listening today. And remember, my friends, you are not alone.

spk_2:   30:23
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.