(upbeat music)
- Well good morning, good afternoon, or good evening
whatever time it is, where you are.
I'm Deya Smith-Taylor and this is "House Calls After Show."
Is the show that we have after our live show
with doctors and today also with survivors
what we're talking about CHD today,
and we'll explain to you what that is,
but this is the time where we continue to answer
your viewer questions
that are left over from our live show.
And I'm so happy today to have our guests back with us
both our doctors and our survivors.
So let me have them come on the show and welcome them
and will answer a few more of your questions.
All, thank you so much for coming back
and joining us for this after show.
- Thanks for having us.
- Thank you.
- And so we're going to get right into it.
And so we're talking--
so what I want you to do, even as before we move forward
I want to just have each of you introduce yourselves,
so the audience is reacquainted
with who we're talking to today.
So I'll start with you, Dr. Romano.
- Hi, my name is Jennifer Romano.
I'm the Herbert Sloan Collegiate Professor
of Cardiac Surgery.
And I'm a Congenital Heart Surgeon
at C.S Mott Children's Hospital.
- Dr. John.
- Hi, my name's Anitha John.
I'm the Medical Director
of the Washington Adult Congenital Heart Program,
at Children's National in Washington, DC.
- Wonderful, Jessica and then Rachel.
- I am Jessica Cowin.
I am the manager of Research and Advocacy
at the Children's Heart Foundation.
And I am a CHD survivor.
I had a transplant when I was 16
because of Hypoplastic left heart syndrome
which I only have the right side of my heart developed.
- Hi, I'm Rachel Owens
and I am a Congenital Heart Defect
two time heart surgery survivor,
and I'm also a heart mom.
My son was born with a Congenital Heart Defect
and he's also so far two time
Open Heart surgery survivor as well.
- Thanks so much everyone.
And ladies, this is actually a great place
to ask a question.
John from Chicago wants to know,
and this really goes to our survivors
any good programs to connect adult CHD survivors
with parents who have a child recently diagnosed
and who need encouragement.
- I'll go first on that.
There is a really amazing if you're on Facebook,
there's a really amazing group.
It's called heart moms,
but there are of course, heart families on there.
So the dads joining as well,
and it's heart moms and heart parents
from all around the world
and everybody just gathers there.
It's a pretty much open, safe space
where you can ask questions,
connect with other parents and survivors.
And another option I would say is to go
if you're on Instagram,
always you can look up hashtags for CHD warrior, CHD moms
and there's different pages like conquering CHD
and you could find a lot of parents that are dealing
with the same things and connect with them there as well.
- Wonderful.
You know, doctors, let me ask you this,
go ahead and just define what CHD is for us again,
we didn't do that in the beginning.
- So Congenital Heart Disease CHD stands for,
any structural heart defect that you can be born with.
So it's an abnormality in the development of the heart
in utero that can result in an abnormality
in the structure of the heart.
Congenital, meaning inborn
and then heart defect, CHD.
- Thank you for that.
And anyone can respond to this next question.
Are there any myths that families in particular have
when a child is first diagnosed
that you all want to address?
- I don't know if it's so much when a child
is first diagnosed,
but we certainly have seen many adult patients
who have come to us who were told that they were cured.
So they had heart surgery as a child
and was told that their heart defect was fixed.
And the assumption at that point was that
they did not need to maintain any follow-up afterwards
because whatever the defect was, was taken care of.
In some cases that might be true,
but more often than not
you still have to maintain some followup
with a specialized provider
to ensure that you don't have complications
that result from that Congenital Heart Defect.
So I don't know if it's so much a myth or not
but it may be a perhaps a misunderstanding.
- So is it true that once you have a heart problem,
defect, et cetera, you always do?
- Yeah, so that's something that I tell families,
even after a child's had heart surgery
that's been successful and we've quote unquote
fix the underlying defect.
All of these patients do need to be followed
for the rest of their lives
for ongoing medical needs and issues
that may come up as they get older.
And that's why having specialists like Dr. John
who really focused on,
Adult Congenital Heart Disease patients,
understanding what they went through in childhood
to better understand what their needs are going to be
in adulthood is tremendously helpful.
- Thank you for that.
Monica from YouTube wants to know,
what exactly is cardiac arrest.
- Cardiac arrest is basically,
when your heart stops functioning
to the point where you do not have enough blood flow
to keep you alive.
So this can result from a heart arrhythmia most commonly.
So you might hear people getting shocked or defibrillated
during the process of CPR,
but basically it's a process of the heart
that just doesn't allow for the blood to be circulated
in your body the way that you need to.
And this is different than heart failure
where you still have enough to be able to stay alive
but when you have cardiac arrest
the blood flow has stopped
so that you really don't have enough
to keep functioning of your organs.
- I see.
Dill from YouTube is 43 years old.
He's a male.
And he wants to know about diallistic dysfunction type one.
I hope I said that properly.
And he wants to know, is that normal?
He doesn't have any symptoms,
except for chest pains sometimes, anyone?
- I think probably what he's maybe saying is
diastolic dysfunction, which is common--
- [Deya] I see, okay.
- Which is common in patients with Congenital Heart Disease
especially if you've had surgery previously
but it also can happen as a normal process of aging
it can occur in patients who have a high blood pressure,
who have diabetes, who have other heart issues.
So I would say it's important for him to talk to his doctor
to sort of see what the underlying causes are for him
but it doesn't necessarily mean that it's going to progress
but it basically is an indication
of the level of stiffness of the heart.
- Gotcha, thank you so much.
And you know, I want to use this time to also say,
you all provided so much valuable information
and were there any burning questions
or topics that you kind of just wanted to leave us with?
I'll start with the doctors.
Just anything that maybe we didn't address on the show
that you want to just make sure everyone is aware of.
And then we'll also have our survivors share that as well.
- So I guess I would start by saying one,
just always remember that, Congenital Heart Defect
is not necessarily a death sentence.
The majority of patients who receive a diagnosis
with Congenital Heart Disease
will go on and with well into adulthood.
And so there's just so much potential, hope
and will continue to get better and better every day.
But we also don't want to forget our heart angels
those kids who did lose their lives along the way
to Congenital Heart Disease
there's still can be a very challenging diagnosis
for families out there.
And so just being aware of both of those
that continue to survive and strive
but also those that we've lost along the way.
- Thank you so much.
- I would also say that, you know
it's really important for patients and their families
to realize that they are not alone.
I think many times folks feel that they are isolated.
They don't really know other folks with defects
Congenital Heart Defects
or folks who have gone through surgery
in their childhood years.
So I would encourage folks to really reach out
and explore the various different advocacy organizations
that were mentioned in the program.
Children's Heart Foundation,
The Adult Congenital Heart Association,
conquering CHD, mended little hearts.
These are all organizations
that are focused on CHD patients,
their families and promoting research.
And to know you're not in a vacuum and you're not alone.
- Thank you so much, Dr. John.
Jessica, you got a little emotional during our live show
but we all really felt your heart, no pun intended.
Anything else you want to share from your heart today?
- I would say just because you feel good
and you know you're doing well,
don't stop taking your medication.
That's a huge shoe that I've heard along the way.
I learned to take my medication at five
and I've never missed a dose.
So I think when heart patients are really feeling good
they automatically think,
"all right I'm not going to take my medication anymore,"
but that's the reason you're feeling good.
So keep taking your medication
and yeah, the Children's Heart Foundation
like Dr. Romano and Dr. John and Rachel stated that,
it's a great place for support.
Obviously we do research
but that's where my family found the most support.
There wasn't anything around.
I was 14 when the foundation--
when we got involved in the Children's Heart Foundation.
And that was the only thing my mom knew.
To have that really nice support versus today
where there is some great resources
on Facebook and Instagram.
And yeah, I think it's just important to...
my doctors and I'm sure doctor Dr. John and Dr. Romano
will back me on this.
Keeping your heart healthy, working out,
eating the best you can, doesn't mean you can't have sweets
and all of that good stuff, but yeah,
this journey has been...
there is emotional components to it.
And thinking back, like on your journey
there are those points where
it just kind of gets you a little bit extra
and I'm just happy to be able to share my story.
- I am too.
I'm so glad you're here
and really appreciate you sharing your story.
And last but not least, Rachel.
- So I think back just to what the doctors
have kind of already reiterated
and also what we've all shared,
but just how it's so important for me,
going from CHD, a child with CHD
into an adult with the Congenital Heart Disease
making sure like when I was in college
and I had that period where, I'm from a small town
I went to college in a small town.
And when I started having issues where
I maybe couldn't walk here 20 feet away
without different pains in my stomach
or feeling completely fatigued.
And I was seeing doctors
that weren't really well-versed in my condition
or knowing how to pinpoint what might be happening
from a child going into adulthood.
And for a few years,
I have spent time just where my condition was worsening
because I wasn't getting that proper care.
And I just want to say to young adults,
especially are transitioning
maybe going off to college by yourself.
I wasn't really near family anymore.
Just make sure that you are getting the proper care
seeing a doctor that knows
about Adult Congenital Heart Disease
and making sure that you don't waste time.
There was a point where I was really close to not making it.
So just making sure that as you transition
during that period,
become an advocate for yourself
but also just make sure you're on top of everything,
taking your medications, up to date with everything.
When you're young, you kind of,
you want to enjoy life, you're in college, you're a teenager
and you kind of want to fit in
and just be a part of that community,
but make sure that you keep yourself first
and be your best advocate.
- Awesome, that's great advice really appreciate that.
Really appreciate you all just being so present
and available and helpful today.
I'm your host, Deya Smith-Taylor.
This is "The After Show."
And listen, I want to leave you on a wonderful high note
and message from our survivor, Rachel,
because in addition to it being Heart Month,
it's also Black History Month.
So please join us again next Monday
same place and time and we'll see you there.
- Hi, my name is Rachel Owens and I'm a Go Red for Women
Real Woman.
My mission is to encourage minority women
to take control of their health and to live fierce.
This is especially important in the black community
because black women are disproportionately affected
by heart disease and stroke.
My hope is that being a voice within my own community
will help to fund research and participation.
I aspire to be an innovator and a trailblazer
like Daniel Hale Williams and Myra Adele Logan.
My name is Rachel Owens and I make history every day.
(upbeat music)
- [Narrator] Learn more about House Calls:
Real Docs, Real Talk
and submit your questions at heart.org/HouseCalls.