Patient stories

Diego Otero: Bringing Awareness to Cystic Fibrosis in Colombia

Enjoying the view at Pico del Aguila at Parque Natural Chicaque in Bogota, Colombia

Twins come into this world having to share everything with each other. This is especially true of cystic fibrosis in the case of Diego Otero and his brother. Growing up in Columbia, Diego’s brother suffered from pneumonia and respiratory issues early on in his life. The family had grown increasingly concerned over the years for health of Diego’s brother. The Otero’s uncle, who was a local doctor, had information that an American geneticist was visiting a hospital in Cali, Columbia. Their uncle encouraged them to travel to the hospital to find out exactly what was happening.

The Otero’s packed their bags and headed off to Cali. There they got the necessary tests to understand what was happening to Diego’s brother. After some tests were administered, the tests came back positive for cystic fibrosis for both boys. This came as a shock because Diego had yet to show any symptoms like his twin brother. Now the Otero’s were given the proper information to treat their boys. Unfortunately, treatment was too late for Diego’s brother. At the age of 8, he sadly passed away from complications due to cystic fibrosis. His light still lives on through his twin brother Diego.

“I know first-hand the reality of CF, but I never thought I would have it too.”

Diego began seeing symptoms appear three years later at the age of 11. This is when he was given nebulizer treatments, saline, and antibiotics every 4 months. This was to treat his cough, nasal congestion, and phlegm. Diego knew this was not going to be an easy journey, since he witnessed the complicated stages of the disorder firsthand. Diego was unsure how to feel about it.

Diego was able to live a normal life after learning how to treat and manage his cystic fibrosis. He could not have done this without the help of his parents. They made sure to keep him on track with his medications and treatments. This lead him to graduate from high school in 2008, and ultimately take on the new challenge of college. Diego was able to define himself, explore new things, and learn to manage his life on his own. He decided on attending Pontificia Universidad Javeriana (Pontifical Xavierian University) in Bogota, Columbia.

Diego and his parents at Volcan Chimborazo in Ecuador

Living on his own was a milestone. Diego efficiently managed his treatments and medications. He made sure to keep himself healthy and active whenever possible. In 2014, after living on his own for almost 6 years, Diego had almost finishing his degree. Unfortunately, he received some devastating news. He needed a lung transplant.

The surgery was scheduled for the winter. The high altitude in Bogota (8660 feet above sea level) made the already complex operation, that much more complex. After the surgery, Diego spent thirty days in the hospital with eleven of those days being under constant supervision. The other nineteen days, guests were welcome to come by and visit him. Diego was also able to have a more diverse diet, unlike earlier in his recovery. The company of family and friends, real food, and a new set of lungs made Diego feel like life was turning around for the best. Since his surgery, Diego said, “I feel 100% better than before.”

“Always stay on top of all your treatments and medications, it may not seem like a big deal, but in the long run your body will thank you.”

This new stage of his life also comes with new obstacles. Diego had to be very careful of what he put into his body. His diet consisted of low sugar content and a low carbohydrate diet, while also avoiding seafood and beef. He also got his lung capacity checked through several hours of exercise daily, and Diego also visited the hospital two to three times a week. This extra time spent on his health was more than okay with Diego because he was making sure he was “at his absolute best.”

At the Great Sphinx of Giza in Egypt

Now Diego is having the time of his life travelling all around the world. He is also spending more time with friends and family. Diego’s self-esteem is higher than ever and he is living life to its fullest. He currently works for Univercidad de los Andes in the genetics department, as a research assistant. His goal is to find a way to bring awareness of cystic fibrosis to all of Colombia. One of his many projects is to create a cystic fibrosis foundation funded by the government of Colombia to further educate the reality of cystic fibrosis. Diego’s passion and drive gives him the ability to achieve not only that goal, but all the goals he puts his sights on.

Enjoying the view at the top of Pedra Bonita in Rio de Janeiro, Brazil after a hike

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