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[00:00:00] Welcome to another episode of The Heart Chamber.
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.
Denton Cooley. From age 15, she began to experience complications including arrhythmia. When she was 21 years old, she immigrated to the United States And from age 30, she began to experience atrial fibrillation, endocarditis and Eisen manger [00:01:00] syndrome, as well as pulmonary hypertension.
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.
I sure do appreciate you spending a moment of your time with me today. You can find me at the heart chamber podcast.com. There you can leave me a note in the contact form or you can leave me a voicemail. I'd love to hear from you. If you have a story you would like to share on this podcast. You can also find me on Instagram at the Heart Chamber [00:02:00] Podcast, and thank you so much for your support.
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.
Track 1: Yes, I was born in Venezuela 1965. I was born in a very, you know, small hospital. then [00:03:00] I went home, everything was okay when my mom, she was a nurse, she started to notice that, you know, my, my lips will get purple in my hands. So for her, it was like something very strange until I have my first, crisis that, you know, I start to, I couldn't breathe and my mom performed, you know, cpr.
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.
So we went, my mom went with me, doctor to doctor, doctor to doctor. in the, at the same time I was having a lot of crisis and a lot of bad stuff that it was, you know, [00:04:00] really, killing me, you know, little by little, until we met a doctor because our neighbors told us, told my parents about a doctor that just arrived from, the Texas Children's Hospital.
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
flight
Track 1: six months old
Suzanne Boots Knighton: And [00:05:00] your cardiologist here
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
yeah just a simple shunt So I went back to Venezuela my family Treat me a little doll do anything I couldn't you know I couldn't uh I couldn't run I couldn't do this and be careful with the leg All my family my aunts my uncles everybody I was like the spoil one careful Don't scare her you know But in a lot of love I never felt overwhelmed or anything I had a normal childhood Of course you know a lot of you have a lot of [00:07:00] um things that you can do But uh my family was so wonderful So when I was like 14 years old I was I was preparing to do my qui and I had my first crisis I mean it was like almost a heart attack
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
Track 1: I got before that I got really sick and they thought that that was the end and I don't know I I [00:08:00] remember I was 14 and I have this thing you know I was having like a terrible AFib I pass out and everything and everybody was screaming and you know I didn't understand what it was happening because my parents never told me everything about my condition because they didn't want me to live my life fear You know in a way sometimes I feel like why didn't you tell me Maybe you know I will have found something else but now I understand they now I see the girls that they're 15 and they have c h d congenital heart disease how they are and I wasn't that way at all I was like oh yeah my my heart is weird but it's okay Everything is fine you know I was like So I was in the hospital for like two two or three weeks and that's when I started to take Quintin you know the old pill is for arrhythmias and I start to take that was the first time [00:09:00] that I started to take medicine so you know when I was like 15 well the day of my birthday my 15th birthday party everybody every you know that you have to dance with your dad and then with the people that you love and all that stuff remember that everybody was sobbing crying looking at me and I'm like why Everybody's crying It's because they were so excited that you know that I made it So Yeah I remember that my my cardiologist was there in the party and he danced with me and I will never forget that he told me in my ear you always always will be my little star of Bethlehem
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
like
Suzanne Boots Knighton: Venezuela
Track 1: 1987
Suzanne Boots Knighton: Oh
Track 1: uh
Suzanne Boots Knighton: it
Track 1: So when I was in Venezuela when I got outta uh high school I went to uh law school and I hated because I just wanted to be I wanted to be an artist I wanted to be a singer I wanted to you know do crazy things So I got out of the college I didn't want to study Then my dad I don't care what you do but you gotta study because you know for me it's very important I said dad I wanna go to England because I wanna learn English but I wanted to go to England and my dad yeah are you crazy You in England just look at the way that you put your hair Because I was like kind know punk[00:13:00]
eighties you know
Suzanne Boots Knighton: totally
Track 1: And then my dad I just can see you in Car Street with all these crazy people And I'm like I said well you know whatever But I I need to one of the main things that I wanted to do I wanted to leave my house Because I wanted to do things for me you know I always was so spoiled that I didn't even know how to fry an egg I mean I didn't know anything Everything was done for me was like I wanted to be independent when all my brothers my brother and my sisters they were 18 all of them They got a car I didn't get a car Are you crazy with a car You know she came and whatever her heart something happened and then you know I was like I gotta get outta here I don't know how I'm gonna do it but to [00:14:00] Well so lucky yes but Suffocated but loved So you know I couldn't get upset with them because you know and I I have a I had a bond with my mom that we didn't even have to talk cuz you know we knew each other so well So when my mom got sick well that's later on so finally my dad told me I have a business partner that is a very good friend of the family that his dau his daughter lives in in in Raleigh North Carolina You can go to NC State and you can learn English
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
Track 1: Yeah Oh my God [00:15:00] remember So my dad say okay but it's gonna be just six it's gonna be four months And then you come back Mm-hmm was yeah okay So So you know I study English It was four months and I told my dad that you're gonna lose your money because you know I still don't know
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
Track 1: uh I was in WA Tech from 88 to 91 and oh my God created a community of people all over the world But the the good thing about it and that I love it was like I didn't wanna have any Latin friends I wanted to have American because I wanted to learn English I even went out with a guy I don't know what a guy told me I don't know He could have told me you know a lot of stuff But I didn't understand I didn't I was like just you know like whatever but I will travel to Venezuela to go and see my cardiologist I never saw a cardiologist here in United States Then I start [00:17:00] to stay stay Then I got a job Then they asked me if I can work in the bank industry So I start to work for Wacovia it used to be first Union You remember North Carolina Okay I work for a lot you know many years there And oh my heart was doing okay Sometimes I will have like a little but I was ah everything's okay I will take my pills And I'm telling you I didn't know what I had in the meantime you know this is syndrome was developing but it's because I didn't know I didn't have a clue
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
Suzanne Boots Knighton: is the first I had ever heard of that um when you initially told me about this So You're starting to develop it You don't know it yet but let's just educate our listeners real quick [00:18:00] about what that is
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
Track 1: eh I got married I you know I have my I I have my um[00:19:00] I was with my that was my first husband because
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
Track 1: yeah So we then you know I got divorced and then uh Things happen I I moved from Raleigh I moved to Charlotte and they offered me to work for Bank of America So I was working there and everything And one time I had a a cousin that live here in Jacksonville Florida and it was the only family that I had and I felt so lonely in Charlotte because I didn't have a family anymore So I decided to move here to Jacksonville One of the days that I moved to that I came here to fight down an apartment and all that stuff I start to develop AFib but I mean days with AFib and I you know was ah it will go away [00:20:00] Nothing So that was the first time that I went to a cardiologist here in United States Of course when the cardiologist saw me almost pass out it was like wow that's when I started to take a MedOne
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
Track 1: I was already [00:22:00] yeah 30 34 that's when my health started to decline you know So I start to go to uh they told me that I needed to go to a to a cardiologist but I needed to go to a cardiologist that it was um a congenital And back then that was 20 years ago they didn't have congenital for adults I had to go to uh pediatrician When I went to a pediatrician is when they found out everything And I was like
Suzanne Boots Knighton: Everything what all did you that pediatrician
Track 1: Well the pediatrician he time that he saw me I mean I could see his face It was like you know how this lady still alive You know what I mean I was like and then I said You gotta explain to me what I do because I don't know[00:23:00] When the guy told me everything that I had and he gave me all the explanation and all that stuff I was like you know why I didn't know this He say well you know you you are now too old to have you know the glen and the fountain and that was a surgery that could have prevent for you to have what you having back then He didn't tell me that I have is manger just you know he was trying to be uh he's in the University of Florida
great
ep great he's in the Duke Hospital
Suzanne Boots Knighton: Mm-hmm
Track 1: and he told me you start to need to take care of yourself and And you need to and I went there for like couple years until they have the first adult congenital heart Um doctor name is is her last and she was my doctor for like 13 years[00:24:00] she taught me so many things and then she involved me with the Adult Congenital Heart Association when they were I I think it was like almost 10 years ago And never thought that anybody had you know the same thing that I do have in my heart And I start to meet so many people that they are like you know that they are they're hard warriors And I remember that I went to the first conference that it was in um in Chicago and I never felt so you know like wow this is this is what I wanna do I wanna I I don't want people I don't want other kid to go through for what I went through but didn't know her body I didn't know my body I didn't didn't know what I had So Dr Sayid he moved and for me was very difficult because I had to go all the way to Gainesville and it's like two hours you know I started to go to the Mayo Clinic[00:25:00] but we had a doctor imagine back then there were an adult cogenic heart doctor that came once a month So eh that was
In Jacksonville
Suzanne Boots Knighton: Yeah
Track 1: So he was the one his name is Dr Amash He was in uh Mayo Clinic in know the one in Rochester But he will travel to Jacksonville to see patients And he was the one who showed me about is and manger He gave me the you know all the information I mean everything well after that but before I went to the Mayo Clinic when they told me that I needed to have a transplant you need to have a heart and long transplant And I'm like you know I was so afraid And I went through the whole session Of transplant you know all the different tests that you have to go[00:26:00] I did a calf in that Calf I almost die because you know the anesthesia my SATs are low My saturation usually my saturation is in the sixties and seventies So when they put me under an anesthesia is very dangerous So you know they did the whole test which was the most painful thing in my head was all the time My God the only thing that I'm gonna ask you if it's some if it is for me let it it's okay I will do it but give me a sign I always tell God give me a sign Because I I need to have a sign from you I remember that after they did all that they laid they they one of the doctor No the doc My doctor but the doctor that he's the one the transplant called me over the phone didn't even tell me come to the office No On the phone Hello [00:27:00] I just to let you know that you don't qualify I just started cry and cry and cry and cry And I told my doctor Dr Sadi and she was so embarrassed because you know that was a terrible thing to do So that's when I that I needed to move on 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
Track 1: the IS was killing me Yes But the is manger was killing me I mean yeah And I remember that after they told me that I couldn't have the the um transplant and I start to get sick I used to go every other week I will go to the to the um hospital [00:28:00] just got very depressed I stayed home I didn't wanna go out I didn't wanna do anything I just you know it was very bad I just I I was just like Well you know if if I don't wanna suffer anymore I just wanna die I I mean I was thinking that which I never and then my husband was tell was telling me you know my husband 23 years what is that woman that I met 20 years you know 15 years ago That was back then 15 years ago That fought all the time And I said I don't know I just but it I think it was because the way that this doctor threw that to me he said oh because you gonna have you we need to go ahead and replace your liver too I'm like you you talking to a human being you're not talking to a you know to an animal So I didn't know what to do I didn't know what to do until one day I don't know why I just woke up and I said [00:29:00] Elaine you're wasting your life Whatever whatever More or less you have to live You just you are not living You gotta do something So I start to you know my husband told me we're gonna move to another house a smaller house I'm gonna make you a closet that this is your dream And me thinking yeah but what about if I don't make it to the always thinking because you know what it happened when I started to go to the Mayo Clinic it was amazing Then I met this electrophysiologist that he moved from Rochester to here he wanted to get me out of a uterine because that's how a medicine that is very toxic I had an ablation They could take the the the flutter the atrial flutter for the atrial fibrillation They I mean AFib all the time I'm all the time You know my AFib is all the time there It didn't work But you know I trust him so much [00:30:00] when he told me I wanna do an ablation I was like okay let's do it And I did pretty good I did pretty good And then you know I start to gain trust and you know that I wanted to do stuff and I wanted to help And then I start to get like very involved with the A C H A with the Adult Congenital Heart Association I opened a channel in uh in Instagram called you don't Have to Look Sick I used to put you know like tell them okay you know you have when you have a heart disease your lips are purple Let me tell you about this This lipstick will help you I made my channel you know but everything was about you know heart disease Then the pandemic got here and I'm doing I keep doing my channel and then I receive a uh I receive a message from a lady from my country uh Venezuela [00:31:00] and she say Hey I'm looking at your channel It's amazing my boy was born with the same thing that you do have and in Venezuela I don't know where to take him I say okay let me go ahead and I call and find out and then I help you And then you know you can course my life no clue what was happening in my country and all over the world So you know I called my electrophysiologist and then what I did I called the son of the doctors say my life that he's a professor in the you know university in Venezuela of congenital heart disease So we used to but I knew him He was we are almost the same age for me was my like my little brother I haven't seen him since he was little like me so I'm like oh I can't believe He's like oh you calling me everything And then I said you know his name is Dr [00:32:00] Mao too but it's Eva Mao Hernandez because he like the son So I call him and I say ah you know she said well she can go to this and this hospital And then I call him back and I said can you tell me what's going on in Venezuela with uh heart being busy
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
Track 1: and I start my I started the foundation and all my friends from the Adult Congenital Heart Association Mo the ones that I were my closest friends that we were in emia they all gave [00:33:00] me money so I can pay for the papers and start the whole thing
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
Track 1: so we started in the EMIA year and at the beginning it was like well you know it's so hard Still very hard But I'm the term and I that day that I knew you know the the reality of in the uh undeveloped countries how these children are dying and they don't have any kind of opportunity There is no insurance there is not you know the government doesn't help them[00:34:00] It's just I said this is what I'm going to do So I start to ask for money on Facebook like crazy Please help me help me help me help me All my friends From the from from you know the the congenital heart uh association many of them helped me and little by little it's just I start to make then in Venezuela when they found out Oh there is a there is a foundation organization in United States that is helping I have over 400 children right now which what we do with these children is like right now we don't have the money to be able to pay for surgeries because they're like $40,000 And you know and I prefer to save the lives of of many that take one just one and just you know you don't know what is gonna happen So [00:35:00] what we do with these children we pay for them all their medical Expense that they need Everything that it has to do with cardiology Like for example they get their appointments her their cardiologist's appointments they get lab work they get sometimes I even people donate me formula I have some doctors that sometimes they donate me you know like medical supplies I just keep sending boxes and stuff And but the most important thing is that we we can help these children to at least receive care Because in Venezuela if you don't have if you don't have the money um medical appointment especially a cardiologist is a hundred dollars and which is cheap here the minimum wage in Venezuela is $4 a month
Suzanne Boots Knighton: a month
Track 1: [00:36:00] $4 a month the minimum wage
Suzanne Boots Knighton: Wow
Track 1: So these children there is just two local hospitals that they are from the government they can give away surgery problem is because of the situation in Venezuela all the doctors has em immigrate You know they have gone you know they um we need a cat Oh no the machine of the cat is bad So they need to go to private a ca a catheterization in Venezuela it costs $5,000 nothing for here but for a person that made four bucks an hour month you know Yeah So what we do we have like a doctors that they have become you know affiliated with us for all over the country I just don't do like many foundations They concentrate either the capital or this state No I go [00:37:00] all over Venezuela So the doctors give us good prices and we can send the children to be seen but we have the problem that after they they've been diagnosed you know diagnosed If it's a if it's a complex congenital heart disease this child either if they cannot find out how to leave the country to have you know the surgery in another country
they die
Suzanne Boots Knighton: Mm-hmm
Track 1: We have uh since I started we already have like 12 or 13 of our children are already dead And if we just like I was telling you on the phone that we just had a ba a 12 year old that had a sudden death She had carpathy which is impossible in They are not transplant But nobody gave her the opportunity for nothing And we just we're just trying to be able to give these children everything that they need [00:38:00] Sometimes you know they For Christmas you know the parents I don't have the money not even to give them gifts because you know they need to buy medicine and all that stuff So you know here in my community I try to get you know toys so I can send it to them I know that it doesn't have anything to do with you know heart disease don't know how long these babies are gonna be alive because they don't have treatment So the only thing that we want is that with a very small donation we can do so many things We can you know the medicines in Venezuelas are very very cheap more cheaper than here And as long as we have a you know a medical you know Recipe It is It is Okay They can go and and we can go and buy the medicine for them I need to send a lot of right now like vitamins and stuff that for the [00:39:00] kids because
supplements
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
Track 1: exactly And another thing if a child has like for example the wolf Parkinson White which is you know that little it's a congenital heart uh defect that is just that you have an extra beating in your heart [00:40:00] that you just have to do an ablation have a hospital in Venezuela It's a private hospital that we have an alliance with them and they're very good And uh that's you know that's their specialty Everything that it have to do with electrophysiology And they give us like for example that's uh an ablation in a in a hospital in a private hospital is around $10,000 This hospital because we have with alliance with them and everything is they're amazing people I can pay $2,500 and save our life So you know
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
Track 1: So for us we feel like we are everything for [00:42:00] them Like for example the moms I have a lot of contact with the mothers It's not like you know this typical foundation that oh I sent you $10 but I don't even know who you are Or you know Well first of all we don't send money We just pay straight to the
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
Track 1: So the only thing that I want and that I invite everybody and [00:43:00] now that I have this way that I can say what we need It's just that if you go to our page and make any donation you helping those children you saving those children and you know it's so little but it can do so much
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
medicine
but it's the best thing that I ever done in my life And now that I'm with global large We went to the the acc c two three in the American College of Cardiology We went to that conference It was amazing amazing And now working with global large it has taught me so much [00:44:00] about how congenital heart defect is not important Like everybody talks about cancer everybody talks about something else but we are invisibles then So you know we always I always say we wanna make visible the invisible You see I mean you see me in the street can you tell that I have congenital heart disease and and you know that I'm dying or you know that I have a syndrome that it can kill me
No
Suzanne Boots Knighton: can't tell
Track 1: Everything Well my my kids are the same You see them you know walking or trying to do and you know it's amazing But people if they don't see the children you know with the tubes and stuff and whatever it is like and it's not that these childrens are suffering all over the world They don't have anything And many people in other countries just like me are doing the same thing for their [00:45:00] children And it's really hard but even that it's very hard And this time it has been very hard because of the situation that we are right now the economy and all that But I'm not giving up because I know I'm gonna find a company or somebody that it will become my sponsor I know that it's gonna happen because what we doing is something good is to help people and to help children That they are the they are the of our country
So
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
Track 1: right now I'm taking my medicines I'm taking two medicines that they are for my lungs That is Stan Inala field I'm gonna tell you something live with this is really hard to live with with with pulmonary [00:46:00] hypertension I think is worse than having than having uh AFib Cuz I'm in AFib all the time know I'm very used to it's like I I feel my heart all the time When I don't feel it I don't hear it I get scared So they let me I get you know many times you know right now I have to do like iron infusions I need to take care of myself I have to eat very low in salt I take A lot of uh like Bumex I'd take like maybe like 20 pills a day But always I think the most important thing that you can have when you have a disease a chronic disease like that an attitude You need to have a good attitude and just keep going Keep going Don't let and and this is what it worries me when I see some people from the uh hard [00:47:00] you know from the heart disease community you know attached and so worried about What they have They know every minute every second every it's like their lives are involved that don't let that your disease to get to wining you you fight a disease and you will go ahead and succeed because you are stronger than c h d Ibel I totally
believe that Yes
Suzanne Boots Knighton: I
Track 1: Just
you know
Suzanne Boots Knighton: you're right You're right anyway
Track 1: let you can't let that uh you know that disease to get your body because you know a lot is here in your mind like for example I'm in constant heart failure Do you thi do you think that I the whole day I can't breathe I can't breathe No no [00:48:00] I know I can't but I'm gonna try to I take my pace I al if I'm if I feel you know like tired I lay down I just take my time I easy easy And I you know my thank God I have a great husband that has to learn that you know that I have my own pace you know he respect that That's why I don't wash and don't clean
Suzanne Boots Knighton: Great reason to get outta
cleaning
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
everything
Suzanne Boots Knighton: And your
Bella is recording in her closet right now and it looks amazing It's like if only if only my [00:49:00] closet could look that way Wow Well know I I feel like I say this every interview um I I know I've made a a new heart friend You are a shining light You are so appropriately named
Track 1: Cute
Suzanne Boots Knighton: Um I I just am thinking about all the kids in Venezuela and around the world that are so lucky that you are still with us you are defying all odds This this is why I do this podcast It's to tell stories like this where I have the chills right now It's like are living anyway You are living despite your And not only are you living you are thriving and you are living on purpose the benefit of others And I just think if only half of [00:50:00] mankind could do what you're doing for others this world would be a such much more peaceful loving place So thank you for being who you are and shining your light anyway
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
Suzanne Boots Knighton: and um, listeners, I'll put all the ways you can find, be in. The show notes and on my [00:51:00] webpage, and I encourage you to, to go find her, to make a donation. it, it's just so important. And as a fellow heart warrior, you know, I'm one of the lucky ones where I was able to get healthcare.
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.
Would you like to share your story on this podcast? You can either send me an email at boots the heart chamber podcast.com or you can [00:52:00] go to my website and go to the contact link and leave me a message there. There's also a way to leave via voicemail on my website. I'm so glad you joined me for today.
Please be sure to come back next Tuesday to the Heart Chamber Podcast for another inspiring episode.