Episode 17

Published on:

9th May 2023

Tricuspid Atresia, Eisenmenger Syndrome, and Pulmonary Hypertension: A Personal Account

Belen Blanton was born with tricuspid atresia in Caracas, Venezuela back in 1965. When she was born, many doctors told her mom that she was not going to make it. Fortunately, her mother took her to a cardiologist that had contact with Houston Children's hospital in Texas, where she had surgery, a Potts Shunt procedure performed by Dr. Denton Cooley.

From age 15 she began to experience complications including arrhythmia. When she was 21 she moved to the US and from age 30 experienced atrial fibrillation, endocarditis, Eisenmenger Syndrome, and pulmonary hypertension. She is married with two sons and has recently started a charity to help those living in her home country of Venezuela. She believes her life has been a gift and she has felt a need to give back to others in her country by creating a nonprofit organization called ‘Estrellita de Belen Foundation.’

Belen's foundation can be found at https://fundacionestrellitadebelen.org

Or email her at belenblanton@fundacionestrellitadebelen.org



Website: The Heart Chamber (theheartchamberpodcast.com)

Transcript: Joyful Beat | The Heart Chamber (theheartchamberpodcast.com)

The Heart Chamber (@theheartchamberpodcast)

Thanks to Michael Moeri for being my right hand man. Michael Moeri - Audio Editor, Podcast Producer and Marketing Director


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I am your host, boots Knighton. Today I interview Beon Blanton, who was born with Tricuspid Atresia in Caracas, Venezuela back in 1965. When she was born, many doctors told her mom that she was not going to make it. Fortunately, her mother took her to a cardiologist that had contact with Houston Children's Hospital in Texas where she had surgery the POTS Shunt Procedure, which was performed by the famous Dr.

ndocarditis and Eisen manger [:

She is truly a miracle. Before us. It was just such a treat to speak with her even in her fifties. She is living with heart failure, but making a difference in living her life as vibrantly as she can. Anyway, I. I think you'll really enjoy this conversation. She shares a lot about a nonprofit that she has started in Venezuela to help children who have been born with congenital heart defects, and she also talks about her work with other organizations.

stagram at the Heart Chamber [:

I surely appreciate it. Let's get to it.

Suzanne Boots Knighton: You have an incredible story. There's a lot of different things I wanna touch on today. you are a heart warrior yourself, and I wanna talk about that and then, you know, where you're, where you're from, how you came to the United States. And then I want to dive into, all the incredible work you're doing now to help fellow heart warriors, not just in the United States, but globally. So you're such a force of nature. It is such a miracle. You are still with us at 57 years old. but let's, let's start back at the beginning. Welcome to the heart chamber. Let's just dive right on in.

Track 1: Okay.

Thank you for having me.

Suzanne Boots Knighton: So you were born in Venezuela.

Yes, I was born in Venezuela:

So she decided to take me to the, to the cardiologist, and they took me to a cardiologist. We're talking about the sixties, so, you know, it was, and in Venezuela it was like, what is this? So they took me there and, um, They, um, find out that I was born with Atric, you know, without the tricuspid, valve. but in that time they didn't know a lot of things about it.

stuff that it was, you know, [:

So we went to see him there in, in Venezuela. he was a cardiologist in Venezuela. We went to see him. And he just, you know, he took the case for him and he said, we're gonna save her. I don't care what other people said. they told my mom that I will never arrive to the, to the airplane And I will make it the air that I will not make it to Texas But my cardiologist I couldn't get you know like oxygen inside the plane talking about the sixties And he made like a little chamber it was like a like a bassinet but it was a chamber where he put the stuff to for me to get oxygen

Suzanne Boots Knighton: How old were


Track 1: six months old

Suzanne Boots Knighton: And [:

Track 1: that he's my well he he's no us but he's like my dad His name is Yvan Mac Illa he was the one that saved my life When everybody say no he's he took it for him you know So we went there when we arrived to you know by the way Delta Airlines were so wonderful with my parents at the beginning they didn't you know they were talking about the house I was going to get the oxygen and all that stuff and everything But then you know the captain seeing the situation you know took the risk and you know they Took me to Texas When I got to Texas they were you know the ambulance Everybody they were waiting for for my parents in the airport So I went straight to the to the hospital I got my surgery with Dr Denton Cooley uh which you know he he he was amazing I [00:06:00] remember well I don't remember but I remember my mom used to tell me that when he when Dr Kuey came out of the um surgery and say Mr Mrs Tuva you don't have to worry about anything Everything is

fixed Which

it wasn't but back then

Suzanne Boots Knighton: But

Track 1: it was

Suzanne Boots Knighton: best

Track 1: you know

w a lot of you have a lot of [:

And I went

Suzanne Boots Knighton: a little bit more about what

Track 1: I was preparing for a party like

the Sweet 16 here you know you know the whole but in but in Venezuela and in South America like in Mexico too is when you're 15 it's like a yeah it is like a an event you know the girl get dressed

like Cinderella you know and you invite all your friends

family you know

Suzanne Boots Knighton: Mm-hmm

the end and I don't know I I [:

because my name is be Bethlehem in English So he told me you will always be my little star of Bethlehem And I'm like oh my God So you know I continued to go to the high school Everything was perfect[00:10:00] did a lot of you know like a teenager A lot of crazy stuff that I shouldn't but you know I didn't know better So when I was 17 I had an AFib that almost killed me That one I remember that day like it was yesterday I couldn't breathe I couldn't do anything and I just you know I start to to feel you know when you when you just gonna pass out and I kind of pass out I will never forget that I saw my mom running to the doctor and getting down in her knees and just telling telling the doctor please save her and do whatever But please and I remember that the only thing that I could think in my mind it was I can't die Not for me It's because I don't want my mom to suffer That's the only thing that it was in my mind and then I have these weird [00:11:00] things I don't know if I die or if I didn't die but I have this weird thing that I felt like I was like flying It was like really weird And I saw my godfather that he was dead and he told me you still have a lot of things going on in your life And I remember that's when I heard that they were doing a cardioversion boom You know I heard that and I opened my eyes and I'm like oh my gosh I'm alive I'm alive The only thing and I will tell the doctors can't let me die You can let me die And the doctors told my mom we never thought that she was going to make it I think her attitude in life is so wonderful and she's such a happy lady You know young girl that She's still here Of course back then in the eighties already the Glen and the Fontan were available However in Venezuela we didn't know that And I was living there [00:12:00] and Dana started to take other uh that's when I started to take LA ing after that then when I was like 19 I went to law school after I get out of um school But I hated it


Suzanne Boots Knighton: Venezuela


Suzanne Boots Knighton: Oh

Track 1: uh

Suzanne Boots Knighton: it

use I was like kind know punk[:

eighties you know

Suzanne Boots Knighton: totally

w how I'm gonna do it but to [:

come back

Suzanne Boots Knighton: and

Track 1: and I

say okay

Suzanne Boots Knighton: I

Track 1: okay you're kidding me

Suzanne Boots Knighton: I went to NC

Track 1: See

Suzanne Boots Knighton: See

to be were meant to be heart buddies

Track 1: Yeah I went I went to to my English classes

wearing the Herson know

Suzanne Boots Knighton: gosh

: Yeah Oh my God [:

I don't know English very well I have to learn more And then I said I I've you know and then I start to take like business classes but it was too expensive because you know for foreigners it was very expensive So I was like I need to find something So guess what I found out about Wake Technical Community College in Raleigh So they had English classes and they were free the English classes back then And then I start to study computer operations That's when the whole era of computer was starting which you know I can't use my career because [00:16:00] it's R P G and all this

stuff DOS and all that That

Suzanne Boots Knighton: that that

Track 1: Oh

Suzanne Boots Knighton: doesn't date you

Track 1: no

Suzanne Boots Knighton: What years were you at Wake

n United States Then I start [:

Suzanne Boots Knighton: you just mentioned the Isenberg Isen how did we say it again I looked it up

Track 1: Manger

Suzanne Boots Knighton: manger

Track 1: Yeah

ate our listeners real quick [:

Track 1: Well the IS manger syndrome is um when a person with one single ventricle doesn't get the other repair eh you know surgeries eh it affects your lungs and then you get uh pulmonary hypertension And then the only way that it could be no cure because it will never be able to be cured is with transplant but it will have to be heart

long transplant Is the only way just you know right now medicine it has advanced a lot So in the past is manger People didn't even make it to the thirties

right now medicine is better

you know

Suzanne Boots Knighton: starting to development

Track 1: Um

Suzanne Boots Knighton: don't know it yet

Track 1: I didn't know

Suzanne Boots Knighton: okay

know I have my I I have my um[:

this is my second husband So you know we had a kid everything was

okay Um

Suzanne Boots Knighton: had carried the child to term

know was ah it will go away [:

know that medicine a MedOne Okay And it was pretty bad So but with amio run it calmed down the whole thing I moved here to Jacksonville I was in Jacksonville and I was doing okay with um Miami Amron And um suddenly I start to have fever and fever and fever And I I you know I went to the hospital and they will do like see if I have uti nothing So I called my cardiologist in Venezuela which right now is a is another it This one was my ep my electrophysiology that I call him that too So I say Hey dad you know I've been having fever for the last week for [00:21:00] you know since a a week ago it doesn't go away And they did this and they did that and nothing And he told me you need to go to a doctor and you need to demand that they do a blood culture Well I went to the doctor here nobody wanted to do it They were you know looking at me like I was crazy know how with the medicine how you have to until I went to this doctor that I I just show him my hands and I said look I have heart problems My cardiologist in Minnesota told me that I need to have a a a blood culture please And I started crying So I guess the the that doctor felt bad We got my blood culture not even an hour They call me back You need to come to the hospital right now I have endocarditis I spent in the I C U for four weeks

Suzanne Boots Knighton: were you Do you remember how old you were

: I was already [:

Suzanne Boots Knighton: Everything what all did you that pediatrician

hat I do because I don't know[:


ep great he's in the Duke Hospital

Suzanne Boots Knighton: Mm-hmm


In Jacksonville

Suzanne Boots Knighton: Yeah

ent tests that you have to go[:

someplace else

And that's when I to go to Mayo Clinic And in Mayo Clinic I met best pulmonologist in the whole world for me uh Dr Charles Berger

he saved my life

Suzanne Boots Knighton: And

go to the to the um hospital [:

he start to tell me everything I was in tears and then the lady called me and told me my son died He couldn't resist the surgery so he died I'm telling you Good For me it was like my head is like E open and I say wow I found my purpose in life Now I know why I am still alive this is what I'm going to do

Suzanne Boots Knighton: my

e were in emia they all gave [:

Suzanne Boots Knighton: that

Track 1: $400 I started my foundation

Well um

Suzanne Boots Knighton: What's the name of it

Track 1: I started uh the name of the the name of the foundation is

Little Star Bethlehem

Suzanne Boots Knighton: Oh

Track 1: because of my Doctor

Suzanne Boots Knighton: Yep That's great

government doesn't help them[:

Suzanne Boots Knighton: a month

: [:

Suzanne Boots Knighton: Wow

apital or this state No I go [:

they die

Suzanne Boots Knighton: Mm-hmm

en everything that they need [:


Suzanne Boots Knighton: Mm-hmm

Track 1: We need to send supplements like for example one of my one of my dream is to be able to send to every kid oximeter Cause they're not they local hospitals that they're you know in the area don't have oximeters So I want every mom that we we do have with our kids to have a Oximeter I just got like five and I little by little I always ask people oh how I help You can

Suzanne Boots Knighton: I'm hearing you say is you're

Track 1: So

Suzanne Boots Knighton: you may not be able to necessarily provide a surgery for these kids but you're working to improve their quality of life

extra beating in your heart [:

have to have a lot of money We just need to have the money to take them to the doctor to buy them their medicines and To be able to do Sometimes I have now I have a girl with Wall Parkinson white but since we don't receive donations I need to pay for whatever we have I need [00:41:00] to pay my other kids to go to the doctor because they need to go to the doctor I had a kid that has um like Kawasaki you know like Kawasaki It is something that I have to do with the heart and the brain I don't know But she never took her son to in in the she was in a town in the middle of nowhere that she had to even go ahead and go in a donkey and go down to the city And then I mean like And that child had the opportunity he had he went then You know we we gave him his medicine and he is doing great because he can live with the disease but he just needs to have the treatment It's like in Venezuela every year 6,000 children are born with congenital heart defect Less than 20% receive their treatments

Suzanne Boots Knighton: that's a staggering statistic

l like we are everything for [:

people that we need to you know the doctors the hospitals Cause you know you need to keep everything under the law and all that So you know we don't and I have I have mothers and right now that that's what I'm doing I'm I'm trying to teach the moms that normally they have to take care of their heart They have to take care of the kids' teeth because goes straight to their heart And I have to pay now dentist appointments but I can't say no You know how much it cost me a dentist appointment Venezuela 20 bucks

I'm gonna tell them now

Suzanne Boots Knighton: right

that I invite everybody and [:

example a little box of propanolol you know that propanolol that here is very expensive in Venezuela costs $2 how many boxes of propanolol call I can buy I have the money and take care of all my children that take that


rge it has taught me so much [:


Suzanne Boots Knighton: can't tell

ing the same thing for their [:


Suzanne Boots Knighton: Yeah They're the future And speaking of immediate futures with your current con like what is your current condition for your health and how are you managing it at the moment

ive with with with pulmonary [:

believe that Yes

Suzanne Boots Knighton: I

Track 1: Just

you know

Suzanne Boots Knighton: you're right You're right anyway

reathe I can't breathe No no [:

Suzanne Boots Knighton: Great reason to get outta


Track 1: Oh my God But you know my husband is in the military He was in the military for many years He retired from the military so he's very organized So my gosh that kitchen is always great looking My bedroom


Suzanne Boots Knighton: And your

It's like if only if only my [:

Track 1: Cute

I just think if only half of [:

Track 1: you Thank you I just think that everybody in the world

has a purpose in life, and you will find it. You will find it in your life. It took me a long time to find mine, but now that I found it, I've

never been so happy in my entire

life. And even that, I worry and I cry and I cry for them and all that,

but I

will not change my life if I have to reborn with this disease so I can go ahead and keep helping these children, do it.

I don't care cuz I think that if I won't have this disease, I will not be this and I this way. So

for me it's very important

in. The show notes and on my [:

Bellon was lucky. She con, she got healthcare. She continues to have healthcare, but there are so many people who don't have access. So thank you for considering making, making a donation. ​

Boots Knighton: And that's our episode for today. Thank you so much for spending a little bit of your day with me. If you enjoyed this podcast, I sure would appreciate if you would go to my website, the heart chamber podcast.com, and make a donation. Also, if you are a fellow heart warrior, I'd love to hear from you.

amber podcast.com or you can [:

Please be sure to come back next Tuesday to the Heart Chamber Podcast for another inspiring episode.


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Open Heart Surgery with Boots
A podcast for heart patients by a heart patient
Formerly called The Heart Chamber Podcast, Open Heart Surgery with Boots airs every Tuesday for conversations on open-heart surgery from the patient perspective. Boots Knighton explores the physical, emotional, mental, and spiritual experiences of surgery with fellow heart patients and health care providers. This podcast aims to help patients feel less overwhelmed so you can get on with living your best life after surgery. You not only deserve to survive open-heart surgery, you deserve to THRIVE!
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