spk_1:   0:03
Welcome to Heart to Heart with Anna, featuring your host Anna Dworsky. Our program is a program designed to empower the CH D or congenital heart defect community. Our program may also help families who have Children who are chronically ill by bringing information and encouragement to you in order to become an advocate for your community. Now here is an ID. Gorsky.

spk_2:   0:29
Welcome to Heart to Heart With Deanna I am Image Dworsky and the host of Heart to Heart with Anna Merion, Season nine and Our Theme this season. His advancements. Congenital heart Disease in today's show is a nurse's perspective. Changes in care over the last 30 years, part to our guest, Justine a

spk_3:   0:45
barber. Dana Farber graduated from Kent State University with a bachelor's degree in nursing in 1983. For the last 34 years, she has worked in Akron, Ohio is a nurse. But over the last 14 years, Dina has become a subject matter expert in adult congenital heart disease care, including the natural course of congenital heart disease in adults and the challenges this unique population of survivors face. Deena's nursing passion is Carrie for adults heavy with congenital heart disease, is nurse program coordinator. She has the privilege of managing and coordinating the specialized care of adult congenital heart patients. At Akron Children's Hospital last week, Dina came on the show to talk to us about the advancements she has seen and care for patients with congenital heart defects, thanks to interventional cardiology and changes in devices and drugs used in the CHD community. Today we're going to talk to Deena about changes regarding treatment of some specific congenital heart defects. Will go back to heart to heart with an Adina.

spk_4:   1:43
Thank you. I'm really excited about today's episode on Boy. Did we have a lot to cover?

spk_3:   1:48
I know we have to get into it right away. So do you know? One of the first congenital heart defects to receive lifesaving treatment was tetralogy of follow, thanks to the development of the Blaylock toast accent. In my book, The Heart of a Mother, the author of the introduction was a great grandmother born with tetralogy of below. She shared with our readers how she didn't have her first surgery until she was 10 years old. Because she was born in 1938 Her first surgery was a pots shut. Can you tell us about the changes you've seen in treatment for Children born with T O F?

spk_4:   2:21
That's funny. She should mention the pot shot. There was a potshot and something called the Waterston shunt. And those were some really, really, really early things down his pal E ations For our patients, those two procedures aren't done anymore. The first Blaylock Kosik shot you had talked about was in 1944 and then the first open repair for tetralogy of Hello by Dr Lily. Hi was in 1954 but it really wasn't until the mid 19 seventies that they got into more of the inter cardiac repair for younger Children. That's what Echo became big and then prostaglandins, which are the medicine they give to keep some of the pieces parts open in the heart so that the blood flow can get through. So we saw kids younger kids in 45 typically, but it's his birthday. But now, since the 19 nineties and on which really is not that long ago, we've been doing earlier and earlier breed hairs, sometimes less than one year old. These are still not a cure. These air still repairs, but they are really, really good repairs. But things, of course, aren't always gonna stay as we would want them. So even though we're doing earlier repairs and we have better medicines and treatments, we still need to watch quite a few things for our tetralogy of locations.

spk_3:   3:30
It's funny that you should mention the other shan't because first she had the pot sent and then she got the isn't Waterston

spk_4:   3:38
Waterson front.

spk_3:   3:39
Then she got a Waterston shut later and I thought, I never ever hear about those sense anymore. So why

spk_4:   3:45
don't we do not be

spk_3:   3:47
Oh yeah,

spk_4:   3:48
we're the best at the time. But now we don't use those apple

spk_3:   3:52
right? And I think it's pretty amazing how they are able to operate on these tetralogy patients younger and younger. Then what they were a long time ago. Of course, they couldn't do it before she was 10 just because they weren't do week surgery on Children.

spk_4:   4:07
No, now they weren't doing surgery, really until the fifties. Nobody really knew how to do anything. And then the more complex repairs, of course, in the seventies, in the newer repairs in the nineties and they're good repairs But again, patients still need long term follow up on their becomes issues with pulmonary valve, which is always a problem and tetralogy of slow. Sometimes it's missing. Sometimes it's really, really narrow. It'll sometimes it's narrow below the valve, so we watch the pulmonary valve competency, and then we need to watch all of our patients for arrhythmia issues. Anytime you do surgery on a heart there, scarring and scarring can disrupt the normal electrical pattern. So we watch for those. I think probably the biggest thing that's coming out right now is when do you replace the pulmonary valve being studied by many, many different centers? And are we doing it too soon? Are we doing it too late? What's the ideal timing? Because every time you replace that valve, you start the clock ticking again,

spk_3:   4:57
right? It's

spk_4:   4:58
only a matter of time before that valve needs to be replaced, so you don't want to do it too early. But you don't want to wait too late till it's the right side of the heart is damaged and can't recover from that.

spk_3:   5:06
Right? Right. Okay, well, that's tetralogy of below. Another CHD that has seen some major changes over the last 30 years or so is that of transposition of the great arteries, or transposition of the great vessels. It's also TGV, but we'll just call T g A. I have friends who have had the mustard procedure done, but you never hear about that anymore. So can you tell us what's new with T G. A.

spk_4:   5:31
Yes, and I want to say that we were specifically talking about D p. G A. There's also lt d A. But we're specifically talking at this point about D T g. A. This is the cyanotic lesion that's life threatening. Very, very young. It's the whole, and the bridge between two of the major vessels are not kept open. When a baby is born, it is almost a death sentence. So we've learned to identify it very, very early, and we've learned to use medications to keep the hole in the bridge between the vessels open. In 1964 there was a position by the name of Dr Mustard, and he did what's known as an atrial switch right around that same time, there was a physician by the name of Dr Sending, so sometimes you'll hear people who had a sending or a mustard, at least the patients I care for. These are called E trail switches. The patient has two separate circulations, so circulation goes to the lungs but never gets to. The body of circulation goes to the body but never gets oxygenated blood. So in the sixties, they figured out something in the cath lab that had to have been done earlier. In the surgical procedure, they were able to create an artificial hole so these two separate circulations could mix, and that helps patients survive until they could have the mustard procedure. But that left the right sided pump going to the body instead of to the lungs. The right ventricle wasn't made to pump to the body. It was made to pump to the lungs, and we know that it gets tired over the years. So and I think the 1991 doctor's 18 started something called the arterial switch, so the mustard is known as the atrial switch. But the guillotine is known as the arterial switch, and that's what I see now that these patients are in their early twenties and they're now coming to us and they have what we believe is gonna end up being very, very good long term care because the right ventricle stays the pump for the lungs and they're left calm for the left ventricle stays the pump to the body and those two pumps, that's what they were made to do. So they actually cut the aorta and the pulmonary artery. They detach them, they re attach him to the opposite route, and then the coronary arteries have to be transplanted. And then the patient is left with what is basically a regular. If I could use the word normal circulation. So this is new. This is just in the nineties, and we are just now starting to see the patients in their early to mid twenties now with this arterial switch. So this has been a huge change and care for our transposition patients.

spk_3:   7:52
Yes, and like you said, it used to be a death sentence if it wasn't caught early enough. It's really a scary congenital heart defect.

spk_4:   8:00
Very, very.

spk_2:   8:03
Thank you for sharing information about changes in T O F and T g A. We're going to take a quick break, but don't leave yet listeners, because when we come back. We're going to talk to you about some new procedures standing up. Those with other CH D's will be back after this brief break.

spk_1:   8:19
When I saw somebody of the sea extreme groups growing, I found family just ridden to join May. Anyone who is a member of the adult congenital heart defect community can be a guest on our show way. Have a great year plan that we look forward to sharing other interesting topics. Heart to heart With Poland David Serving a C H T community, Wednesday's at Noon Eastern.

spk_0:   8:52
You

spk_1:   8:55
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 Gorski at Anna at heart to heart with anna dot com. That's Ana at heart to heart with anna dot com Now back to heart to heart with Anna

spk_2:   9:16
Welcome back to our show. Heart to Heart with Vienna, A show for the congenital heart defect community Today Show is a nurse's perspective. Changes a care over the last 30 years, Part two and our guest, this Akron Children's Hospital nurse program coordinator for the adult congenital heart

spk_3:   9:31
service, Dina Barber and Reba Toki to Dina about the changes she's witnessed to care for those born with T O F and T G. A. Do you know one of the big problems that many people face is that they have a leaky aortic valve or they have a bicuspid aortic valve and replace the aortic valve with a pig valve or a mechanical valve? Doesn't seem like the best option because they were out after a while and they need to be replaced. So can you tell us what's new with replacing the aortic valve?

spk_5:   9:59
We've not made a tremendous amount of strides. We still use Homa graphs, which are human donors. We still use tissue valves, which are either pig or cow, and we still use mechanical valves. The nice thing about the home, a graft and the tissue 1000. They don't require Coumadin or anti coagulation, but they only last 10 maybe 20 years if we're lucky. Mechanical valves last longer 20 to 30 plus years, but they require a fairly significant amount of anti coagulation. I think one of the newest things is there something called the Onyx, its capital O Capital n Dash Capital X, and it is a mechanical valve. It can be used in the aortic or mitral position, and what we like about it is the requirements for anti coagulation are less, so you don't have a higher risk for bleeding. You still need to take humid in, but instead of the number being 2.5 to 3.5, we can drop that down closer to the two level. So I think that's really quite a big change for aortic valve replacement. We still do the Ross procedure, and that's where you take the patient's own pulmonary valve. You move it to the aortic position, and then you give him a tissue pulmonary valve, and that's still a very, very common procedure also. But I would have to say the Onyx valve is one of the newest things for aortic valve replacement.

spk_3:   11:15
It's exciting to me to hear that there might be an option that doesn't require quite a CZ much anti coagulation, because I know that's a real problem trying to get those I in ours the right number, especially for kids who are going through puberty when all of their chemicals in our bodies seem to be kind of out of Iraq

spk_5:   11:33
growth spurt. Toddlers and Children are notorious and teenagers for not wanting to have, ah, routine diet, so it is quite a challenge. So, yes, we are very happy with the onyx valve so far.

spk_3:   11:43
Okay, well, another new procedure that I've heard about is the maze procedure, which helps people with arrhythmias. Can you talk to us about this procedure and what treatments or drugs this procedure might possibly prevent?

spk_5:   11:56
The maze procedure has been around a while, especially an acquired heart disease community. It is where there is a surgical scarring made in the typically the right atrium. It can also be the left, depending on the patient's anatomy, and it is for atrial tachycardia, especially atrial fibrillation. If you had any right sided heart surgery or atrial dilation for any reason, you're prone to atrial fibrillation and natural flutter. Then usually you have to use anti arrhythmic medications, and you typically have to have anti coagulation if it's chronic. So doing the maze procedure, especially if you have to have something done anyway, is a very common thing, and surgeons are being very good about asking us to look at the arrhythmia burden. Make sure the patient is not a candidate for the maze before they go in there. Because if you're already in the chest, let's do everything we can to help our patient at the same time.

spk_3:   12:49
Wow, that makes a lot of sense. That's great. My son actually had a partial maze procedures what they told us, and it's just like you said he was having his third open heart surgery and he was having a lot of major stuff done. One of the things that they decided to do was try to limit some of the arrhythmias that they were seeing. And how come it's so far, so good. It's really been great.

spk_5:   13:13
Good, good. That's good to hear

spk_3:   13:15
what we have. Another segment coming up that's gonna be

spk_2:   13:17
huge. So I take a quick break now, but when we come back, we're going to talk to do about the changes. She has care of babies with hypoplastic left heart syndrome and there have been a lot, so don't go far. We'll be right back.

spk_5:   13:35
Here is

spk_2:   13:36
why she always needed a lot of attention. She had strokes, even though it's a natural inclination to withdraw from the CHD community. I think being a part of it, help me be part of the solution. Heart to heart With Michael Please join us every Thursday at noon. Eastern. I'm Michael even on, I'll be your host. As we talked with people from around the world who have experienced the most difficult moments,

spk_1:   14:08
you 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 Gorski 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 Anna

spk_2:   14:28
Welcome back to our show. Heart to Heart with Vienna, a show for their congenital heart defect community. We've been talking to Dina about changes that she has seen it too charged with hello to GH out procedures. Now we're going to talk to her about have a classic left heart syndrome and

spk_3:   14:44
those of you who have been listening to my show for a while now. This is what I'm most passionate about because this is what my son was identified with. And this is what really drew me into the ch D world as a mom and a CZ researcher. So over 20 years ago, when my son was born, there were four options for care. Dina. There was abortion. If you found out in utero, which many of us did not know until after the child was born, said then they offered us compassionate care, which is where you would just take the baby home toe, let him die. Then there was the Norwood procedure and then transplantation. So can you talk to us about the options for care for parents today who find out that their baby is going to be born with a chili? Jess?

spk_5:   15:28
Well, we still have basically the same options, but I think there's been more detail added to each 11 of the biggest things that we have now is early fetal diagnosis. It doesn't change the outcome for the baby. The baby's still going to have the ventricle hydrologic left heart, but the parents are much more prepared. The care team is much more prepared, and all of that leads to better outcomes for the baby. You can talk about where to deliver. Where is the baby gonna go? Where is the mom gonna go? We talked about prostaglandins that keep the blood circulation flowing. Will the baby need prostaglandins? And if so, where is the best place for the baby to receive that? So we still have if the parents want to terminate if the outcome is dismal, and I do hate to talk about that. But if the outcome is dismal because there are other compounding issues, compassionate care is still an option. We still have the Norwood or the interventional Norwood, depending on your center and what your baby's diagnosis actually would be. And transplantation remains an option. It is saved for the sickest babies that might not tolerate a surgery of another type. So really, we still have those same four. But I think the other big thing that's new is something called NPC. Q. I see. You know. Have you ever heard of that before?

spk_3:   16:45
A little bit. I could use a primer on it.

spk_5:   16:48
Okay, this is just a fascinating thing. It almost gets me a little teary eyed when I think about it. N p. C Q. I see is a collaborative. I'll give you what it stands for. National pediatric cardiology Quality Improvement Collaborative, And this is specifically started for hyper plastic left heart patients. And it is a unique collaborative between parents and caregivers, and it has made some incredible strides in the care of infants with hypoplastic left heart syndrome. There are stages between each of the surgeries, and this address is many of those issues with growth and feeding and weight gain and home monitoring. And the inter stage package that they have developed is it's just unbelievable. And what is so wonderful is that yes, there are caregivers, but the parents have justice big of a say in what is happening. Research is coming out of it, and more and more centers are getting on board, so standardization of care is also huge. And I think this is between the early fetal diagnosis and this collaborative. I think we're really changing the face of the outcomes for our single ventricle patients.

spk_3:   18:04
Well, it's interesting what you said about the standardization of care because later this season, Dr Gil Ra Noski is going to come on my show and talk about trying to create a roadmap for success for Children with a variety, not just a chilly just but with a variety of congenital heart defects. Then I think the standardization of care is really critical. But one of the things that is interesting Dina, is the very first episode of this season. I had a mom come on and talk to us about stem cell therapy for her child, who was born with Rachel adjusts. Have you heard of that before?

spk_5:   18:39
I have again the disclaimer being that I'm a congenital. So what is happening with the infant is not as clear to me. I do know that there have been a few adult patients that have received stem cell treatment, and that's a fascinating topic. Also, I know it exists, but I can't say that I am very well versed in it.

spk_3:   18:59
Dina, do you remember for a while there I remember there was a lot of talk about a bi ventricular repair for a chili. Just kids. I never hear about that anymore, but for a while that was kind of all the rage. I think that was like in how one to say it was in the late nineties. Maybe the early two thousands.

spk_5:   19:18
Yeah, always better to have two pumping chambers in one, but most of the time, obviously, that is not an option for our patients. It's still discussed. Every baby is born pretty much throughout the United States. It's gonna be a bigger center, will be discussed multiple times by cardiologists, surgeons, patient conferences. We call them and we go over the options. Look at the anatomy. If there's any way to make somebody a bi ventricular repair, that would be the goal that, unfortunately, most of these Children are not. It's just not an option for them, at least at this point in time with our technology that we have now is just not an option,

spk_3:   19:53
right? But there are some programs that I know there's one here in Texas, and of course, there's one in Boston, which is where it was developed to begin with, where babies air having surgery in utero. And I actually did a show about that when one of my previous seasons is that something that you're seeing catching on toe have surgery in utero because that, to me, is kind of scary, because it really puts the baby at risk and possibly the moment risk. I would imagine

spk_5:   20:18
again, not something that I would say I'm well versed in it is out there. Cincinnati does some in utero interventions. Philadelphia, Boston. But it is definitely what we would consider cutting edge and definitely only at certain centers that have developed some of the expertise in something like that, is it? It's actually quite exciting if you think about it, but yeah, scary. Also, I'd have to agree.

spk_3:   20:40
This is what I mean about Oh my God, sure, because so many changes. I can't imagine now having to think about Oh, should I save my cord blood? Oh, should my baby have surgery in utero? It maybe possibly having to fly to another state. Of course, we're talking about the United States, but I have listeners all over the world. Some of these procedures are not even considered in other parts of the world, I imagine

spk_5:   21:07
No, no, I have to agree. Some of the areas of the world would have this as an option. It's exciting and it's scary and it's new, and I think there's more to come. As the years go by, they'll be much, much more come.

spk_3:   21:18
I think so, too. And I'm really, really excited about the stem cell studies that are being done because they seem to be having such an outstanding outcome. And I'm hopeful, like you said, if they're started to use it with adults, too. I know that you can get stem cells in places other than cord blood. So I'm really curious to see what is going to happen with that in the future. I think that is really the cutting edge that and things that you can do genetically to help people. I'm not a doctor. I'm just, um All s o. My understanding of all of this is very rudimentary. But I love having guests like you who are very well first. Come on and teach me because I feel like there's so much to learn right now.

spk_5:   21:58
There is. There's a There's a lot for caregivers and you're not just a mommy or your son's mom, and it's never just a mom, because if it weren't for the moms, we wouldn't have our patients and they won't do as well. So just just something I wanted to say.

spk_3:   22:10
My son had his surgeries in the nineties. He actually had something really radical done. He didn't have a bi directional Glenn Instead, they gave him a thinnest rated fun Tien. So he just had two instead of three procedures, which is typically run. But he wasn't aggressive, a chilly Jess, so it's not surprising that he would have something different. But we have seen some changes in the surgeries that air done because it was cutting edge at that time from I said to have the Fenice straight Avanti another talking about extra cardiac Franti and said, Can you tell us a little bit more about some of the different surgeries that are done? Either Stage two or Stage three?

spk_5:   22:48
Well, I think the biggest changes have been in the type of Fontane that is done. In the early seventies, it was called on a trio pulmonary connection. So on 80 connection, And that was really the only way to save a baby's life at that particular point in time. When we got into the late seventies and then into 1980 they did something called a lateral tunnel fund hand, which is a lot like it sounds. It's done in the middle of the heart, and it's a tunnel to connect the parts that are not connected by the anatomy of the patient. And then in the late eighties, they started doing what's called the extra cardiac Fontane, which is exactly what that sounds. It runs along the outside of the heart, and it connects the parts that were not able to be connected, and a bypasses the pump on the right side of the body so that the blood passively gets to the lungs, which is the classic diagnosis of the Fontane procedure. So those air the big changes as faras the third stage were doing earlier diagnosis, fetal diagnosis and that prepares us to do typically a three stage repair the Norwood or interventional Norwood, which is done in the first days of life. And patients still go on to either have a Hemi Fontana, a bi directional Glenn, typically, which is the second stage. And that's done about 5 to 6 months of age. And then the fund Han, which would in most cases be an extra cardiac Fontane, would be done 345 years old, depending on the center that you're in

spk_3:   24:12
well, one problem that has cropped up now more and more with Dante and patients surviving to adulthood is the development of aortic aneurysms and my son ended up developing an aortic aneurysm. I did not realize that was a possible quote unquote common complication until he started to develop it and we watched it grow for six years. Dina, it was really, really scary. And then finally they said, Well, we need to take care of this aneurysm And so what? We're going there. Let's convert his Fonti and Thio and Extra Cardiac Bronte and do it maze procedure. Boom! They just did a ton of things to him. It was really, really scary. But can you tell us about some of these long term consequences we're seeing of the Fontane? Like the development of aortic aneurysms?

spk_5:   25:00
Well, I think your son had quite a few of them kind of uncomfortable discussion. But 30 years ago, we really didn't know what to expect. Even 20 years ago, we didn't really know what to expect because we didn't have many people that were in their twenties. So when you get into the early two thousands and now into the 2017 era, the 2000 teen, I guess you would say we're now having much larger population of young adults to be able to recognized what some of the issues are. That's how medicine usually goes. You know, we don't like to talk about when we didn't have very many survivors. But the sad fact is we didn't so we didn't know what to expect. Now that we have a larger cohort of patients, were able to watch them and understand again, this is a repair. It's not a cure. And we do know that we're lacking one of the pumping chambers of the heart. So we watch for the function of the heart. We watch for a radius of the heart, and we watch for aneurysm of the aorta. We watch for leaking of the aortic, what's called a Neil aortic valve, and we watch for all the same things we typically watching for another patient's exercise. Tolerance, functioning. How are they doing in their regular daily activities? So I think those are some of the things, but I think the most important part to remember is we just didn't know what to watch for. So somebody like your son is at the right time for us to realize Oh, we're going to end up with some atrial over there is Let's see if we can do amaze. The lateral tunnel is not holding up a cz well and not doing as well for patients. Can we convert him to the extra cardiac, which they were able to do, and then they were also able to address that aneurysm. I think it's scary for parents, especially because they lived through those first couple of years with their child having those operations. And you're hopeful there's a very quiet period it seems to be, and then about 10 years or so after the completion of the Fontane, maybe a little bit longer than that. We start seeing some other problems. And I think that's hard because you're hopeful you've gone through all of this poor child has had all of these operations and done all of these things. And is there a chance that now we're done? And unfortunately we're not. But fortunately, we realize that, and we're able to look for these things and catch these things earlier and earlier.

spk_3:   27:07
Yeah, I like everything that you said, because I totally agree with you. You are very hopeful after you have these surgeries and you see your kids do well. It's funny that you said what you did. We had exactly 10 years before we started to see some problems. It was 10 years post for Auntie End that we started to notice that he just wasn't as pink as we would like him to be. He was starting to have exercised issues, Everything you just said that's exactly what happened with us and took him back into the cath lab after 10 years not having had a cat. And that's when we started to see that there were some problems with Hiss Fontanne. And at that point, it was a case of just monitoring him, hoping he could grow to adult size before they had Thio actually go in and try and do a more definitive repair. But like you said, this is not a cure, and there are lifelong issues, and this is why it's so scary to me that some people are lost to follow up care because it's a condition that needs to be taken care of on a regular basis for the rest of their lives.

spk_5:   28:10
It sure is, and that's about the best way to state that is that it's not the cure, but we remain hopeful and we're not looking for a man. Things happen. We just know there's a natural progression and we want to address that as soon as possible. We want our patients to be informed. We don't want you to be blindsided by things that may come up. We don't want to scare you, but you deserve to know. You deserve to know what potentially could be an issue. What are we watching for? Why do we do those soldiers? Why is it important for me to get on the treadmill? What are you trying to accomplish by the tests that you're ordering in the exams that you're doing?

spk_3:   28:40
Talking about not wanting to be blindsided? To me? It's Gary. Every single time Alex had a cardiology appointment, I would be filled with dread because I was always waiting for that other shoe to drop Dina and and I was just terrified that might seemingly healthy child had something invisible going on invisible to me and that they were going to tell May. Okay, now we need to do, I don't know, something that I wasn't prepared for, and I think that's one of the reasons I've done so much research over the years, and I put books together and I've started this podcast because I'm just craving information all the time. I don't want to be caught unawares. I don't want to be caught flat footed. And not that I'm looking for things to be wrong with my son that if there is going to be something wrong, I want to know about it as soon as possible so we can have the best outcome for care and my son's 22 years old now. He were simple time job. He's writing books. He has a great quality of life. He loves to travel and does all kinds of fabulous things that I think if I had it been as on top of things, we might not have had such a good outcome.

spk_5:   29:53
I agree who lives with the patient every day, who see their loved one every day. The mom, the dad, the husband's lives, the girlfriends, You know, these are the people that we have to rely on because patients live with these defects and they live with their limitations and they don't necessarily realize that things are going on because this is how they live every day. but you'll

spk_3:   30:12
hear the

spk_5:   30:12
mom say, No, no, you know, helping me with the laundry. And now I ask company, You know, you just get short of breath and said, Okay, mama, because I rest a little bit and you pick up on things because family members can tell you what they see.

spk_3:   30:24
Oh, you are so right. I think the changes that happen to the patients have been so gradually that they just become accustomed to it, and they really can't see it as objectively as the parents. And yet, sometimes the parents can't see it as objectively as the doctor who only sees a child or a patient every six months, or the nurse who hasn't seen a kid in a year. And the nurses, especially a really quick to pick up and how you won't remember all of your different people as well as you do and keep everybody straight is beyond me

spk_5:   30:56
because they're people. They're not just patients or people, and we know they have lives and they have jobs and they have hobbies, and they have pets. The more I can find out about a patient that better. My day is these air people there entrusting their lives to us. And the more I know them. And the more I understand them, the more we can help them.

spk_3:   31:14
Well, I love that. And I love all the information that you sure today. I think this is a treasure trove for the tough

spk_5:   31:21
one. Anna, that was a really

spk_3:   31:22
I know we covered Ah lot. It's amazing to be all the changes that are happening. I'm very hopeful for the future. I think that the new procedures and the drugs that were coming out I actually had a show last season where I talked. Thio A pharmacist about some of the new anti coagulation Oh, yeah, the no act coming out. Oh, they're animals.

spk_5:   31:46
I hope we can

spk_3:   31:47
do them eventually.

spk_5:   31:47
Yeah, Yes, they

spk_3:   31:48
are criminals.

spk_5:   31:49
They might have a place for a congenital patients In general, it is kind of a fascinating thing, but slow low for congenital the south of volume And everybody's so different on. But it's there, it's

spk_3:   32:01
coming. It is coming. And so I think where we live in a fascinating time to watch medical technology, Just zoom.

spk_5:   32:09
Yeah, explode explode.

spk_3:   32:12
It is exploding and we have great mediums. Just like this podcast where even the everyday person can get This kind of information can be kept aware. And hopefully that I don't have great outcomes for everybody because people are becoming more autonomous regarding your own care.

spk_5:   32:30
Yes, I agree. And I think that's why nurses air commoner. So I'm gonna plug the nurses. But that's why nurses air

spk_3:   32:35
great patients

spk_5:   32:36
to be autonomous and reach out and read good sites and listen to good podcasts and go to good resource is and the question us and challenge us. No one person, physician, nurse, patient parent can know everything. And

spk_3:   32:48
that's why things

spk_5:   32:49
like that. NPC Q. I see you should look into that. I mean, they are so transparent and they take the parent and the caregivers. Word is strong and as important as any medical person, and it is it's going to reach out to the adult community also, because Piper Blaster, now living hey to adulthood. So things like that I think, will change the face of care. I really d'oh,

spk_3:   33:10
I just love it. Well, thank you so much for coming on, Dina. And for doing a two parter with me,

spk_5:   33:15
you're welcome.

spk_3:   33:15
A proud of us. We got a lot of inspiration in a short period of time. But that does conclude this episode of heart to heart with Anna. Thanks for listening today. Come back next week to hear what doctors have learned at that liver involvement and Fontanne patients. You could join us now in our new talk back session immediately following the show on PAL talk. Just look for the hug podcast chat room. And remember, my friends, you are not alone.

spk_0:   33:41
Thank

spk_1:   33:46
you again for joining us this week. We hope you've been inspired and empowered to become an advocate for the congenital heart defect community. Heart to Heart With Anna with your host, Anna Gorsky can be heard every Tuesday at 12 noon Eastern time. We'll talk again next week.