Every year, 100,000 babies don't make it to their first birthday because of CHD.
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Our Heart Warrior of the Week is Derek Ray Owens!  Derek was born on March 12th, 1991 with a bicuspid aortic valve, he also developed an aortic aneurysm later in life along with endocarditis (vegetation-like growth on the heart.  He currently has a bovine valve and a pacemaker.  Derek is unaware if he was diagnosed in utero, but his condition was discovered before or shortly after his birth.

In his 26 years of life, Derek has undergone two open-heart surgeries and a pacemaker implantation surgery, spending over 100 days in the hospital throughout his journey.  To treat his condition, he has to take daily medications, one is Metroprolol (a beta-blocker) and the other is Cefdinir (an antibiotic), which he will take leading up to his next surgery to treat his endocarditis.  He will also have to have his aortic valve replaced again at some point in the future.  Doctors recommend that Derek avoids heavy weightlifting due to his condition, but he says he doesn’t like to be limited by his CHD and does anything and everything despite what they tell him. Derek describes himself as adventurous, introverted and kind.  When asked if there are any worries or challenges he faces being a CHD Warrior, he said the following:

I worry all the time.  The trauma from all the days spent in the hospital, the pain, the uncertainty, it directly impacts how I think and how I live.  I worry about living a life without purpose, not spending enough time with my parents, not being understood.  I worry that I can never escape the stranglehold that heart disease has on my mind.  Sometimes I feel like I am running from it all, trying to live a “normal” life, until reality strikes again in the form of another heart surgery.  I have never let heart disease impact my physical life so much, I always recover and return to good health and physical shape.  I think the real battle for us Heart Warriors is the mental battle, the life between our ears, the chronic illness that people cannot see.

congenital heart disease

In his own words:

My name is Derek Owens.  I'm 25 years old, born and raised in Tempe, Arizona.  I had open-heart surgery at 16 to fix my bicuspid aortic valve and aortic aneurysm.  I almost didn't survive the surgery and was told I would never play sports again.  Two years later as the captain and starting point guard of my high school basketball team, we went on to win the state championship.  I then received a full-ride scholarship to play college basketball at the University of Hawaii-Hilo.  A month after my senior season at the age of 23, I had to fly to Los Angeles for emergency open-heart surgery again.  I awoke from surgery in complete heart block and received a pacemaker this time around as well.  Earlier this year [2017], I was diagnosed with endocarditis and barely escaped a third surgery.  I continue to fight that infection daily.  I will never let heart disease slow me down and will continue to live life to the fullest!
I think a huge part of alleviating the trauma of CHD is connecting with people who are like me.  I am forever grateful for life amidst all the pain.  I truly feel like we are living on borrowed time, but because of that, every moment feels so impactful and I mourn the moments already gone.  I can often get deeply emotional about existence.  The battle I have after having open-heart surgery is the constant feeling that every moment needs to count; that feeling of enjoying this moment I’m in, this is all that matters.  It’s such a battle between do, do, do and slowdown, slowdown, who cares.  One side of my brain tells me, “You need to make the most of these second and third chances at life,” and then the other side says, “None of that stuff really matters, just enjoy life however that may be.”  Sometimes it can be burdening to feel like I have to experience as much as possible because I never know when life will end.  It’s tricky.  I realize how precious life is after what I’ve survived, but I feel like there is pressure to make it into something impactful.  And if I don’t, I failed and will regret the wasted opportunity I’ve been given to help others.
CHD

About Derek’s Heart Conditions

The aortic valve is a one-way valve between the heart and the aorta, the main artery from the heart that distributes oxygen-rich blood to the body. Normally, the aortic valve has three small flaps or leaflets that open widely and close securely to regulate blood flow.  With bicuspid aortic valve disease (BAVD), the valve has only two leaflets. With this deformity, the valve doesn’t function perfectly, but it may function adequately for months or years without causing symptoms or obvious signs of a problem.  About 2% of those with CHD have BAVD, it is twice as common in males as in females.

bicuspid aoritc valve

Bicuspid Aortic Valve

An aortic aneurysm is a bulge in a section of the aorta.  Because the section with the aneurysm is overstretched and weak, it can burst.  Most aortic aneurysms don't cause symptoms.  Sometimes a doctor finds them during exams or tests done for other reasons.  Those who do have symptoms complain of belly, chest, or back pain and discomfort.  The symptoms may come and go or stay constant.  About 4 in 100 men and about 1 in 100 women over the age of 65 have an aortic aneurysm.  They are uncommon in children and young adults but those with CHD are more at risk.

aoritc aneurysm

Aortic Aneurysm

Endocarditis is an infection caused by bacteria that enters the bloodstream and settles in the heart lining, a heart valve or a blood vessel in the form of a vegetation-like growth.  It is twice as common in men of any age and eight times more common in elderly men than in elderly women.  It is uncommon, but people with existing heart conditions have a greater risk of developing it.  In children and young adults, about 75% of cases occur in those with CHD.

Endocarditis

Endocarditis

Sources: clevelandclinic.org, webmd.com, heart.org

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