Nowadays I'm like check it out...Hi I'm Kristy Walker and today I'm going to
tell you what it's like to live with an adult congenital heart defect. Do you
feel like you have an invisible disease, definitely because when you look at me
you would never know unless you saw this like giant scar on my chest you would
honestly never know that anything was wrong with me so if I never need to take
a break or I can't go through the metal detector at the courthouse it's because
I have a pacemaker people expect things of you sometimes that you're not able to
give just because you don't look sick all the time
How did your parents explain your condition to you? They didn't they spoke
for me growing up I didn't know anything about my condition I just would tell
people I have half a heart because I relied so much on them and they were
amazing parents and did so much for me went to every single appointment they
were on top of it so it wasn't until later in life that my doctor actually
drew out a very descriptive diagram on what my heart looked like that I really
knew much about my heart condition at all. Do you blame your parents for your
condition? Not at all there's not thing that my parents could have done to make
me a healthy baby to have me any differently do they blame themselves yes
they constantly think of what they could have done differently did they take a
medication did they live near you know powerlines there are so many things that
my parents take into account that I don't want them to feel. Does it hurt? The
surgeries hurt the procedures hurt the emotional toll that it takes hurts
physically right now I don't feel any pain but throughout my life it's
definitely caused emotional issues and trauma that does affect me on a daily
basis. What brought you to UC San Diego Health?
So I was still at the the pediatric hospital when I had gone through some
fertility things found out I had a fluid in my pelvis that could be unexplained
that was unexplained and I went to my pediatric cardiologist and said
something's wrong with my liver and that's how I ended up at UC San Diego
Health they they took me seriously I met Dr. Laith who and doctor Vodkin who's
my liver specialist and they did more testing and found out that I actually
had severe cirrhosis of the liver or I think they call it
nutmeg liver that sounds cute and I had nutmeg liver and I needed to do
something seriously in a short amount of time because it was not looking good and
so that's why I was brought here because UC San Diego for me is the future of my
condition doctor Laith is incredible and he gave me a lot of hope that I would be
able to live an adult life and that I would be able to get old and I never had
that hope before. Tell us about milestones on your CHD
journey. I would say everything that people think is normal is a milestone
for me getting married huge milestone because if you think about what
essentially someone is signing up for when they marry someone with an unknown
future that's that's tough. Are you able to give birth to a child? Technically yes
would it be wise absolutely not I went through every measure with my doctors to
check before I took that step but then I had the liver problem and my doctors
told me that it would not be wise they did not recommend it I want a family to
grow and live with my family and enjoy my family for a long time and
it's just not worth it to me to risk shortening my life at any cost. So this
is a picture of me and a two week premature cow that was born that day the
day that I met it for some reason I my parents can't tell me an explanation as
to why I loved cows but every hospital visit my mom got me a cow stuffed animal
then later in my life I found out I had some more severe medical conditions that
caused me to need a cow valve in my heart
well, let's slow down a pig or a cow valve they would find out when they got
in there. Needless to say, the cows pulled through for me and I came out of
the surgery with a cow valve when that happened it was also my 30th year of
life and on my 30th birthday November 2nd I decided to meet a cow. This, the
question is, can you use a microwave? And this is like one of I guess this is a
misconception against people to have pacemakers they assume I can't use a
microwave I don't yes yes I can use a microwave I
probably use it far too often too. After all of your surgeries what does the
future hold? That'd be awesome if you guys could tell me because I honestly
don't know I'm a guinea pig I'm the first kind of my kind to make it this
far one in 100 kids are born every year with a CHD not many of them get to make
it to 32 so it's actually pretty special that I'm here but it means I have a lot
of work to do because there's a lot of people coming behind me that I need to
live for so the future for me I look definitely more surgeries we will have
pacemaker changes I'm sure I will need a pulmonary valve replacement again
because they don't last forever at some point I might need a heart and liver
transplant that's also been in talks so but there's a lot of unknowns it's scary
because I don't know what my life holds at all even tomorrow could
be different. Has your scar caused you to have body image issues? My gosh yes my
scar looks pretty amazing today I've had a lot of plastic surgery done on it to
make it this way but before I had what was called a keloid scar and everyone
scars differently but I formed a keloid which means that the cells don't know
when to stop scarring so they just build up on each other until you have this
very thick very red inflamed scar and that's what my open-heart surgery scar
looked like from here all the way down to here it was painful it was itchy it
caused a lot of emotional pain I was so self-conscious of it I felt like this is
a very feminine part you know of a woman's body and I felt like less of a
woman because I had this scar and it was really hard to want to be normal when
literally the thing that made you so abnormal was staring everyone in the
face I would see the root of my body image issues started with my scar
started at a very young age and so many people anyone that I did show would be
like that's your badge of honor you're a warrior you should wear it proudly to
all those people I said you try I walked around showing my scar for 12 years of
my life and then after that I couldn't do it anymore
nowadays I'm like check it out. If you could tell your 12-year-old self
anything what would it be? So I would tell a 12- year-old Cristi there is so
much hope your life is gonna freakin' rock you're gonna be so cool
and everything that happens from here on or happened in the past is in the past
you're gonna be happy even though you might not feel it
and your differences are gonna make you unique and are gonna help other people
so keep fighting