Sydney McFall   |   July 5, 2018

Kimberly’s Story

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5 surgeries by age 5

Kimberly Hall was born on November 20, 1990 with a congenital heart defect called Tricuspid Atresia. This means that her tricuspid valve did not form, leaving her with half a heart. She had her first surgery when she was three weeks old and four more open heart surgeries, along with four heart caths, under the age of five. “I was lucky not to have any horrible memories from the hospital. My parents made sure that it was fun by playing games, coloring with me and even polka dotting my entire hospital room.” After her surgeries she was thriving and stayed that way until she was 16.

She started to get sick and was diagnosed with Celiac Disease. With a new diet, she was healthy again. That is, until she turned 18. She became extremely sick and was diagnosed with Protein Losing Enteropathy (PLE). This is a side effect from the Fontan surgery that can occur and means that the body does not absorb or make protein well. “Here was a disease that no one, not even the doctors, knew what it was or how to fix it.” After an emergency IV to keep her organs from shutting down, she finally found the right specialized PLE doctors at Mayo Clinic.

“It was a scary time for me. I had no idea how much my life would change after that day. My invisible illness became visible. Kids stared, pointed and asked questions. I didn’t want to go out of the house. And while some days are still awkward for me, I have learned to love myself again.”

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They helped find the right medication and diet to stabilize her protein. Though there are months of protein level drops, she is healthier and has a better quality of life. It seemed like everything was looking up but on November 9th, two years ago her oxygen level dropped. Because of the severity, she has been on oxygen 24/7 ever since. “It was a scary time for me. I had no idea how much my life would change after that day,” she said. “My invisible illness became visible. Kids stared, pointed and asked questions. I didn’t want to go out of the house. And while some days are still awkward for me, I have learned to love myself again.”

Life with a chronic illness can be challenging. There are days where I am exhausted of having to fight every day, but life is worth fighting for.

 

Challenging but Worth it

Kimberly is now 27 and has since started a blog, o2isbeautiful, and an Instagram, @adventures_zanna, for her oxygen machine to inspire others and show that oxygen does not have to stop you from living your life to the fullest. “Life with a chronic illness can be challenging. There are days where I am exhausted from having to fight every day, but life is worth fighting for,” Kimberly said. “I can only hope that my life will help someone else. Know that you are not alone. You are strong and beautiful. You are a CHD warrior.”

Kimberly is one of the lucky people with congenital heart disease that has made it to adulthood. 40 years ago this would have be impossible. “Without the Fontan and all these surgeries, I would not be here today,” Kimberly said. These life-saving surgeries were able to be discovered through research but research needs more funding — that’s where you come in. Join the fight to defeat CHD for these superhero heart warriors and donate today!

 

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