“Literally A Ticking Time Bomb” - 5 Rare Heart Conditions | BORN DIFFERENT - video Dailymotion

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00:00 - Introduction 00:39 - Virsaviya & Living With 'Pentalogy of Cantrell' 04:31 - Jessica & Her Six Heart Defects 11:20 - Gerry & Idiopathic Pulmonary Arterial Hypertension  15:55 - Grace & Marfan Syndrome 23:33 - Bella & Wolff-Parkinson-White syndrome

Transcript

00:00I was born with my heart outside of my chest.

00:02I think a big misunderstanding is that I'm really, really fragile or that I'm always

00:07in pain.

00:08I recently had a heart transplant.

00:10I now show people my old heart and they say it looks like cookie dough.

00:15I'm wearing my heart on my sleeve because this keeps me alive.

00:18Without it, I can go back into heart failure.

00:20If I'm not on this medication, I die.

00:22My heart could explode at any time.

00:25When I was 15, my heart rate got to 225 laying down.

00:30They found something wrong with my heart and diagnosed me with Wolf-Barnke's and White

00:34syndrome.

00:35I was cured and paralyzed by the same surgery.

00:40Do you remember this picture?

00:42Do you remember this?

00:43Yeah?

00:44My condition is called Pantology of Control.

00:47It basically means that my heart is outside of my rib cage, so it's not protected by my

00:51rib cage anymore.

00:54There is no known reason why Versavia's heart is outside of her chest.

00:58We don't know what caused this condition.

01:01This one, this one is very, you was about like a week old.

01:07They just pulled out the feeding tube of your nose.

01:10I remember I was crying so much about that because you, you was crying a lot.

01:17And that was, I don't know, hard times really.

01:21I'm sorry.

01:25I found out that Versavia had a condition with her open heart when I was 26 weeks pregnant.

01:34And it was, it was a shock for me.

01:36I remember I fell on the floor right in the hospital screaming that because I thought she's

01:43going to die because this is what they thought they told me.

01:46They told me she will die and will not survive.

01:50They told me that I need to get an abortion and they called to not force me, but recommend it.

01:56And of course I, I kept her because I loved her.

02:00People often think that, um, since my heart is outside of my body that I feel pain there, but I don't.

02:07Seeing my heart outside of my body does not necessarily feel like anything because I'm used to it,

02:15except it might feel like something to other people, but not to me.

02:19So this is my room. This is where I draw and do all my hobbies and do my homework.

02:32School is nice, but sometimes it can be hard because the people that know about my condition

02:37try to use it against me or make jokes about it in a mean way.

02:41So sometimes it could be more difficult. Other times, it's still okay.

02:47And other times it's okay. Yeah.

02:49My condition affects my daily life because I can't do some normal things like I can't run

02:56or I can't walk too fast and I can't go up and down the stairs because my oxygen drops really,

03:01really low. I have to use this when my oxygen levels go really low because sometimes they do go

03:09under 50 or when I'm having an asthma attack.

03:13I think a big misunderstanding is that I'm really, really fragile or that I'm always in pain,

03:21but I'm generally really happy in life. My mom and I decided to start posting on Instagram about my

03:28condition. It's important for me to spread awareness because there are a few others out there that also

03:34have similar conditions to me. And if they want help from like doctors on it, people should know

03:41more about it so that they would learn how to help it or treat it or something along those lines.

03:46She's a really good friend. She is so beautiful. She is cool. She never gave up.

03:54I'm very proud of her. I'm proud of her strength and I love her the way she is.

04:10I'm grateful for proving the doctors wrong, that I can still eat and walk and be alive. I would like

04:16to push my limits on what I can and cannot do because I want to inspire other people and because I want

04:22people to know that I am more than just my heart and I am beautiful just the way I am and so are you.

04:32I was born with six different heart defects, which basically means I was born with half a heart

04:37and multiple holes in my heart and leaky valves. Throughout my life, I have had a total of

04:43five open heart surgeries, two pacemaker surgeries, one emergency lung surgery and a combined

04:49double heart and liver transplant with over 200 minor surgeries. When I was 18, I enjoyed multiple

04:56surgeries all at once, which resulted in me going into heart failure at age 19. When I was 22,

05:03I was diagnosed with liver disease. A lot of people think that I just got bad luck and developed liver

05:09disease on its own, but liver disease was actually caused by my heart disease over time,

05:14so it is a secondary effect due to my heart disease. When I was 22, I got the flu and that

05:20actually deteriorated my heart. They were going to go down the transplant route, it's the only thing

05:25that could have saved my life. So although the heart and liver has never been performed in New Zealand

05:31on someone born with heart disease, they decided to take the risk because the liver can deteriorate quite

05:37fast. In my case, I was waiting for both organs, heart and liver, which had to come from the same donor,

05:43which is why I waited about two to three times longer than a normal person. I received my call

05:49at 6 30 in the morning. I just knew my gut feeling that call was the call and I was super excited.

05:57This was my only chance of survival. I knew that a transplant is a pretty big surgery considering

06:02I was having both organs done. At one point there is just a machine in the middle of my chest,

06:08you know, keeping all the rest of my vital organs pumping while they take out my heart and they

06:15insert my donor's heart. They replaced my heart first before they got to my liver. I can finally talk

06:22and I ate for the first time today. I was in hospital for a total of 53 days in ICU, 14 days in ward,

06:30and I was in cardiac rehabilitation centre for 21 days. Good girl! Although I had like a transplant,

06:39I do honestly live a normal life of being able to breathe, do everything that a normal person could

06:46do. So now I just have no limitations and I'm able to study and continue on with my career and my future.

06:54My heart scar goes from the top of my chest down here. Due to all the surgeries that I have had I

07:02actually have a whole chest and stomach full of scars which I absolutely adore and love. I show them to

07:10everyone. This scar here is from my liver transplant. Here in New Zealand due to religious and cultural

07:16beliefs we actually get the option unlike any other country to keep our organs so we can bury it with us

07:22when we pass away. What I was initially going to do was to bury it on behalf of my donor. However,

07:29I recently found out that I can use it to educate people, educate them on the importance of organ

07:34donation and spread the awareness of heart disease. So I'm going to show you my heart. I store it up here

07:41in my wardrobe and this is it. So one of the most main questions I get asked is why is it so large or if

07:49a human heart is this size. Now your heart is the size of your fist but your heart is actually a muscle

07:56so when it is damaged or overworked it increases in size and it swells. Also my opinion I think it

08:03looks like cookie dough. Most people are surprised that I actually keep it in my wardrobe because

08:09everyone assumes that organs or body parts actually belong in the freezer but in my case it doesn't.

08:19Growing up with heart disease I thought it was super important to educate people on a disease known

08:24as the invisible disease. I was hoping by sharing my complete story the good the bad the raw that it

08:32will spread the awareness out on heart disease and actually how serious it is and how much it can impact

08:39someone's life. My heart is one of the biggest things to show because of how large it is. It

08:45obviously shows how damaged the heart was and just what heart disease can do to somebody.

08:52There's been quite a few negative comments. They'll comment or tag their friends and be like

08:57oh yuck that's disgusting what type of person would keep their organs and stuff but they say that without

09:04looking at my other videos without actually knowing what I have gone through and the reason behind

09:10why I am showing my heart and without understanding the work that I'm actually trying to do. The

09:16positive things it's really nice to see it really warms my heart are with all these parents who have

09:24children with heart disease and that my story gives them somewhat sort of hope and it's one of the main

09:30reasons why I do it. I am just preparing some snacks for when Shard comes over and then we're going to

09:38sit down and look through old photos and video of my journey. Shard supports me in a really big way

09:45because when I'm sick with the flu and all that stuff he'll make sure that he is there catering to

09:52you know all the little things big things I need. It's a sensitive topic for him but because it's such a

09:57large part of my life I think it's super important for him to see what I have gone through. How do you

10:04feel like when I show you these type of photos obviously stuff that you were never able to see?

10:09It's like unexplainable like pretty like abnormal but it's also like always a reminder just to be

10:15like gotta be careful. Gotta be careful yeah life can change in any second right? And that's the thing

10:22though like you have to be healthy now. I try. Anything we do there's nothing bad and just like

10:28that can change always have to be like ready to go. Well it's important for me to actually share

10:33these photos with you because it lets you know and it tells you a bit obviously about my journey

10:41and the importance of heart disease and how it actually affected my life before I met you.

10:47Make sure that it's possible to actually survive things like this. Look how far you've come

10:55and still going. For anyone going through transplant the way that I got through it was a positive

11:03mindset. I know it's a super daunting and scary time but find every little bit of positivity you can

11:11because going into it with a positive mindset will end up bringing a positive outcome. That's something

11:18that I've kind of like lived by. I'm going to change out my medication. I change out my cartridge,

11:25my tubing and my pump every three days. This is where all of my stuff lives, day-to-day stuff.

11:31I'm Jerry. I was diagnosed with idiopathic pulmonary arterial hypertension and congestive heart failure.

11:37Pulmonary arterial hypertension means that the artery that goes from the lungs to the heart is

11:43really plodded. The right side of the heart gets enlarged because it's working too hard and then it

11:50starts to fail. So I am technically in right heart failure. Now it's pretty secure. I have secured it.

11:57There's nothing lifting. I get my medication out. This is still a pretty full bottle. I clean it

12:04before I insert anything into it. I twist this off. This is what goes in my pump and that's loading

12:14while I am opening my tubing. This is what it looks like before it goes in my arm. There's a needle

12:22right there. So then I hook it up like this, turn it, lock it in, and then I hit done. It's kind of crazy

12:31that I am reliant on something that is on the exterior of my body. You rely on your organs, but

12:37my medication keeps me alive. Having my heart essentially on the outside of my body gives me a

12:44lot of anxiety. My condition is not curable. There's no explanation for it. We just have to manage it the

12:51best we can. I've always been really healthy. I would say that I was pretty average up until I was

12:56diagnosed. When I was diagnosed they told me if I started medication immediately then I could

13:01probably get three to five years to live. So I'm standing when he's telling me this and he's like

13:06you shouldn't even be able to stand with how severe your heart is. You need to start treatment immediately

13:12or you're going to die. I get pretty choked up thinking about this, finding out about my wife's

13:17condition that she was diagnosed with. I just didn't want to believe it and I couldn't be there for her

13:23because we have the two boys at home. It just felt completely helpless.

13:29From the day I checked myself into the ER to the day I was hooked up to my pump, we're talking three

13:35weeks. Look up, close your eyes. Close your eyes please. It was really hard to adjust especially

13:41because the line was coming out of my chest and the boys aren't old enough at this point to understand

13:47anything. So I was so nervous about them pulling it out. I was scared it was going to fall out. I had

13:53never been sick and now I'm like super sick. I'm wearing my heart on my sleeve because this keeps me

13:58alive. Without it, after four hours I can go back into heart failure. I'm on medication 24 hours, seven

14:07days a week. I started sharing on social media because when I was diagnosed I was looking for somebody like

14:13me and I couldn't find a lot of them. So I wanted to be that person for other people. When I was diagnosed

14:21I was told that if I didn't start treatment immediately I was going to die. After 10 months

14:24on the pump and being in the hospital six times because of infection I started with this subcutaneous

14:30pump. It's been working really well. I also started a clinical trial and it's been really exciting so far.

14:38I wanted to be the person that showed them they could still go out and live their own lives and

14:42be normal people even with a condition as serious as the one I'm dealing with.

14:47I'm going to take my pump off and I'm going to detach for a little bit. The benefit of doing

14:53this really is just because I hate being attached to a pump. I like not having to wear a pump all the

14:58time. I like the freedom that I feel. I feel normal again. It's like Cinderella's slipper. I only get

15:05like a couple hours before I turn back into a pumpkin. Now it's waterproof. I'm pump free, ready to go.

15:12I feel like I have come such a long way from that day in the hospital. I would have never thought

15:18that I was going to put my toes back in the sand after being diagnosed and being told that I could

15:22die. We love the beach and I'm glad that we made it back here. I feel like it made me a lot stronger

15:29and I feel like it's really molded and shaped my personality going forward. With the clinical trial

15:34on now, the future hope is that it'll be a cure, that it's going to give me a lot of years. We've seen

15:41a lot of miracles that have happened in my body. I've survived a lot. My joke is I am a cat with nine

15:48lives and I think I'm probably on my sixth life at this point.

15:56Marfan syndrome is a rare genetic connective tissue disorder that affects multiple aspects of the body.

16:01It mainly affects the heart, eyes, skeletal system. I deal with an enlarged aorta. For me personally,

16:09it gives me a lot of chronic fatigue every day. Marfan syndrome is an invisible illness for the

16:17most part, but it is also life-threatening. The connective tissue in your body that holds everything

16:23together inside is weaker. With my heart, that is the most dangerous area. I am on medication to help

16:36my heart rate go down. Knowing that I am taller than everyone and have long limbs has been a huge

16:44confidence issue. I feel that I am viewed differently than other people. I am six foot three. Growing up,

16:54I was always the tallest in my class. I also have scoliosis, so kids would just see that and think,

17:04you look weird. Remember this? Oh yeah. Little baby Grace. Look at how tall you are. And I just figured,

17:15because we had a tall family, but when Dr. Howard diagnosed you, it all made sense.

17:20I was at my pediatrician checkup and he was looking at my long arms and limbs and fingers

17:29and he gave my mom a weird look. She is an echocardiogram technician, so she just kind of

17:39knew. I thought, I know how to take care of this girl and we can do this together. As far as the

17:45hurt, of course I was worried every day, all day, because I knew too much. A common occurrence in

17:51Marfan syndrome is aortic aneurysms. The aorta pumps the majority of the blood from your heart.

17:59Because it is made up of connective tissue, it is more likely to tear. So that is the most stressful

18:08and anxiety inducing part. Just having that impending doom of, my heart could explode at any time.

18:16It's literally a ticking time bomb. For my parents, it has been hard to wrap our heads around it and

18:24accept. I have already gone through so much because of Marfan syndrome, but there is more to come.

18:33It's always in the back of my head. Even now, you know, I still worry. I like to still be in the background,

18:39kind of making sure I know what's going on in case something really bad happens. I know there's some

18:45internal feelings and hard paths that we have been through and I'm sure there's more ahead. But we'll

18:52get through them because I know she's strong. I decided to start sharing my journey on social media

18:59because I know that the best that I can do is talk about the condition and spread awareness. A lot of

19:07people comment that they have Marfan syndrome and they have never met another person with it and

19:14realizing that they are not alone. Today, my friend Ting is joining me at our local bar as I go on a blind

19:22date for the first time. Ting is 4'11". Of course, my best friend is very short and I am very tall.

19:36I think I want to wear this sweater. Oh my goodness, that's so cute. It will match like my sweater.

19:43Yeah. Cute. How are you feeling about the date? I'm excited. I'm a little nervous, but

19:49I'm excited. I hope it goes well. I would say that my dating life has been affected by my condition because

19:57I didn't want to be seen as different or weird or complicated. Ting has been very supportive along

20:06with all of my other friends. Do you have any ideas of what you'll talk about and have you

20:10thought about maybe how you'll bring up your Marfan syndrome? Maybe when we're talking about like

20:16hobbies, I can mention my advocacy work. Oh, okay. Yep, that's it. And then kind of go from there and

20:22explain. I'm gonna go get dressed. Okay, nice. I'm always, um, I guess protective. I hope that her blind

20:30date sees her for who she is and not just for her syndrome that she has. I just hope that she

20:37comes out happy and has a great experience. Oh my goodness, you look so cute. I love the fit.

20:42Thank you. Are you ready to go? Yes. Okay, let's go. I'm always nervous to tell a date how serious

20:50my condition is. I just hope it doesn't put her off. I don't know very much about my blind date

20:56today. I don't know anything about what they look like, where they're from, anything like that.

21:01I'm feeling a little nervous, but I'm mostly just excited to meet somebody new, hopefully have a good

21:05conversation. Hi. Hi. How are you doing today? I'm good. How are you? Good. Are you used to the

21:16situation? Have you been on camera a lot before? Yeah. Yeah? Um, I kind of do like social media, like

21:24content creation. Nice. And some advocacy work with like, it's called the Marfan Foundation. Uh-huh.

21:30For Marfan syndrome. Okay. Just like what I have. I'm not sure if I've heard of that before,

21:35to be honest. Yeah. Most people don't know what it is. Yeah. Usually when I tell people that I have

21:42Marfan syndrome, people often do not understand what I am saying or what it entails. It is important to me

21:54for especially a partner to know about what I may experience and what I have experienced in the past.

22:03It affects like the connective tissue. So everything that like your body is held together by

22:09um, is kind of loose. Okay. Which is why I'm like so tall and like my long fingers and limbs and stuff.

22:15Okay. Creating connections can be really hard because I just kind of want other people to like look past

22:22it and realize that there's like more to me, you know. At the end of the day, like the people that

22:28talk to you and get to know you as a person are like, no matter what, those are going to be the best

22:32people for you. Definitely. Yep. All right, you want to knock off with me into the sunset?

22:39I hope that my story inspires people to take a good out of bad situations and to look on the positive

22:47side of things while also normalizing chronic illness and disability in our society. Hey Grace,

22:54how did your day go? Hey Jane, it went really well. Oh, did you tell your day about your muffins,

22:59central? Yeah, it came up really naturally and I think she took it really well. Oh, that's awesome.

23:06I would say that my confidence has definitely improved, especially within the past few years. I have

23:13accepted that this is my life and this is something that I was given. I hope that sharing my story can

23:21help people realize that people with invisible illnesses have a life worth living.

23:28This is my formula. I have this condition called gastroparesis, which makes me unable to really digest

23:44food. So this is a feeding tube and the tube goes into my small intestine. Because I was paralyzed

23:51before getting diagnosed with this, I was already like more used to that routine and so this has just

23:58been added on to it. I wake up an hour earlier now just with all my other medical stuff too.

24:08Tell us a little about the heart symptoms you started experiencing when you were younger.

24:12When I was 15, my heart rate got to 225 laying down and my whole body was just feeling so weird.

24:21They did an EKG and they found something wrong with my heart and diagnosed me with Wolf-Parkinson-White

24:27syndrome. So it was basically an issue with like the electrical system in your heart. It's episodes

24:32of really rapid heart rate and a normal heart beats like this and mine was beating like this and like

24:39kind of like all over the place. A few years after my diagnosis, I was going back to boarding school and

24:45I really wasn't feeling good and I knew an episode was coming. I woke up in the back of the airplane

24:51getting CPR and oxygen. I was terrified. I was rushed to the hospital and I just remember like the beeping

24:59was non-stop. The surgery I had, what they did was they had like wires and they went in through my neck

25:07and like my groin. I had like an extra pathway in my heart and they kind of just like got rid of it.

25:14The surgery cured my heart. I don't have Wolf-Parkinson-White anymore.

25:17When I woke up from surgery, I realized something was wrong. My legs were in excruciating pain

25:26and within the span of three days, I was paralyzed from the waist down.

25:31Basically what happened while I was in surgery, I had an allergic reaction to the anesthesia

25:36and it caused my brain to disconnect with the pathways in my legs. I think hearing that news at

25:44first, I didn't want to believe it. I was like there's no way this could be happening. I was going

25:50in to get something fixed and I come out and I've lost so much. I can't move my legs. I'm in pain 24-7

26:00and I think hearing that was just like I'm not going to let that happen. I'm going to walk again.

26:08So this is my standing frame. I use this every day and basically this gets me into a standing position.

26:22So I started going to this paralysis gym and they have machines there and one was called an exoskeleton

26:30and with the exoskeleton it's basically this like robot that kind of like walks for you. Here are some

26:37videos of me in the exoskeleton machine. Once I had more core strength I was able to start using that

26:44and honestly it was the best feeling in the world. I wasn't doing it on my own and the machine was

26:49doing it but I was still getting that walking movement. So I started this GoFundMe to help me

26:55get the tools I need to walk again and support myself. I'm going to be using the money for an exoskeleton

27:02and then hand controls for a car. The exoskeleton is so important because that gets my legs in the

27:06walking motion. Some say with that that I'll be walking and then others have just said you're not

27:11going to walk again. When they said that I was like that's not true. I know I'm going to walk again.

27:17I know I can do this and I'm going to prove them wrong. Let's do some standing. I was like you know

27:24what I'm going to just start standing and maybe post some videos about it and see where it goes and

27:29then I started getting views on it and encouragement and that really helped me a lot. I put a lot of energy

27:35into my social media accounts. I post a lot on there on my recovery and journey and walking again.

27:41When I was at the gym they had this walker with actually a piece of wood that blocked so I was

27:46able to use it and I was like oh my gosh I want to make my own and work on standing. I do like daily

27:54kind of things on my Instagram. I just kind of see how long I can to go. My friend Enrique is coming

27:59over and I'm going to try and break my record for standing time. Hi. How have you been? I'm good.

28:05How are you? Good. Good. Just been yeah going all over the place. Been in Seattle for a few days.

28:14So I'm trying to set a new standing record. Would you be down to film it? Yeah of course. We can

28:19definitely give it a go. My current record is four minutes. I am hoping to break it and do five minutes.

28:25I think it'll be challenging but I think I'll be able to do it. All right let me know when you're

28:32ready. I'm ready. Three, two, one. All right and we're up. I met Enrique through Instagram. He

28:43slid into my DMs and was like hey I'm also from Washington. I was like oh my gosh

28:48and yeah we started talking. All right we're at 25 seconds. I saw she was playing for the

28:54Kraken sled hockey team and I thought that was super cool and interesting and I went to a few

29:00practices with her and we've just kind of been friends since. We are coming up on the two minute

29:06mark. Just kind of seeing the strength that she has to keep pushing forward and just live her life

29:13regardless of any situation that's been thrown at her definitely is inspiring. You're doing so good Bella.

29:19Three, two, one. Five minutes. Oh my gosh. Today Bella set out to break her record with uh standing.

29:35She absolutely crushed it. How does that make you feel? Tired. Tired. Very tired. I can't believe I did it.

29:42I'm very proud of myself. There's nothing holding her back from walking again. It's okay.

29:48Oh yes. Let's go. For so long I had such black and white thinking and just like oh I'm never gonna

29:59get better and then I was like I only get this life once why do I want to live it just thinking like

30:06I'm never gonna walk again when I could get up and try. Three years ago if I saw where I was today I

30:12would not believe it. I have come so far I did not think I would be able to stand five minutes on my

30:20walker. Bella's done an amazing job overcoming just every circumstance life has thrown at her. She

30:27finds a way to make it work and I look forward to seeing the progress she makes going forward.

30:34If anyone watching this is going through what I'm going through just remember

30:38even on the hard days look for the light and that it does get better. You only get this life once

30:45and it's precious. It may seem like times are so hard and you just want to give up and you don't see a

30:50point. Just got to keep going. You decide how you want to see a situation and move forward. I know I'll walk again.

31:08you

“Literally A Ticking Time Bomb” - 5 Rare Heart Conditions | BORN DIFFERENT

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