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Every patient has a story.

The "I'm Not Average" campaign features fellow Americans whose lives have been impacted by treatments and cures for debilitating, chronic, or rare diseases.

< View All Stories


I'm Not Average: Jacob B.

Condition:
Coarctation of the Aorta


Age:
14


Location:
Eugene, Oregon


Jacob used his diagnosis to advocate for heart health and to share his story with the hope that it will inspire others who are affected by Congenital Heart Defects to find strength and persevere through the rough times.


Jacob was born a healthy baby boy thirteen years ago. He has grown up to be a great student, a dedicated athlete, and an all-around great person. In May of 2014 during a routine well-child/immunization visit to the pediatrician it was discovered that our son, Jacob had high blood pressure and a heart murmur that had never before been detected. After follow up tests were performed, Jacob was diagnosed with a heart condition known as a coarctation of the aorta. Jacob's aorta had a pinch in it much like a kink in a hose. The kink was causing very high blood pressure above the kink in his upper body, and simultaneously causing very low blood pressure below the kink leaving his lower extremities in a state that is comparable to dehydration. In fact, the only way Jacob was getting any blood flow beyond his kink, is that he had developed a bunch of small compensatory vessels beginning above the kink and ending below. It was his body's way of adapting to his specific situation in order to get blood flow to the lower portion of his body for 12 years until this point.

Two months later, Jacob’s doctors attempted to open up this kink by adding a stent. At this time, the intervention team discovered that what had been previously considered to be a kink, was virtually disconnected and it would require heart surgery to repair. On September 5, 2014, Jacob underwent heart surgery. The pediatric cardiac surgical team successfully grafted a carbon based tube in place of the disconnected portion of his aorta. The surgery itself took about 7 hours and his recovery went well. Jacob has since had two subsequent hospitalizations. Both were to remove fluid from his pericardium, which is the lining around the heart.

He is doing great now and has since gotten all caught up in school with his peers and just finished up playing spring and summer baseball. Although his aorta is now functioning normally because the structure was repaired, Jacob continues to have high blood pressure and will likely have to work with a cardiologist for his entire life in order to keep his blood pressure within a healthy range.

Had Jacob's condition continued to go on undiscovered/ untreated, he could have been lost. Jacob really wants to help others who may be in danger of having a heart condition by reminding everyone to check their blood pressure regularly. A change in blood pressure is often the first indication something may be wrong with your heart. Detecting high blood pressure saved Jacob's life and it could save the life of someone you love as well.

At home in Eugene, Oregon, Jacob passes out pins that remind people in our community to ‘Check Your BP.’ His disconnected aorta was repaired surgically last year. The medical care he received was amazing. Thanks to an incredible partnership between our hospital and Nike, Jacob is one of six patients out of hundreds of thousands that were given the opportunity to design a one-of-a-kind pair of shoes & apparel that will benefit the hospital that saves children’s lives on a daily basis. Jacob took this opportunity to advocate for heart health and also, to share his story with the hope that it will inspire others who are affected by Congenital Heart Defects to find strength and persevere through the rough times.

Condition:
Coarctation of the Aorta


Age:
14


Location:
Eugene, Oregon

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Make your voice heard. Join the important discussion on the value and economic impact of new medicines.


connect with PhRMA...

Make your voice heard. Join the important discussion on the value and economic impact of new medicines.


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