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Since she was very small, Nahir Amin grew up knowing that she had to take medication. Her parents gave her a small suitcase that she loved and used to store her medications. As she got older and understood her situation a little better, they taught her to recognize due dates using large numbers so she could get organized.
In 1996, when he was barely a month old, after numerous studies, he was diagnosed with biliary atresia (a blockage of the ducts that carry bile from the liver to the gallbladder), and from that moment doctors already recognized the need for biliary atresia a liver transplant.
“My parents noticed I complained, without knowing why, that I slept a lot and my stomach was swollen.. my whole body turned yellow and my chair was white. At first they thought she was just a very quiet and well-behaved girl until she developed a fever and a swollen lymph node in her neck, which they misdiagnosed as angina. At the suggestion of my grandmother “Kily”, we changed doctors and reached excellent professionals from Santiago (doctors Carlos Marrodan and Darío Alonso (H)) who performed a Japanese technique, a palliative operation, before the transplant, when I was barely old two months and 25 days. After six months, they referred me to Garrahan Hospital because they felt we needed to contact those who would do the transplant,” Nahir recalls.
Since then, he began regular check-ups with the team before the transplant. The hepatologist Mirta Ciocca and the nutritionist Esteban Carmuega recommended him treatment so that he could since then reach a minimum weight of 10 kg suffered from first degree malnutrition due to metabolic problems. After he achieved this goal, and despite the delicate nature of his situation, the studies showed a positive development, although they informed him that he could receive the transplant if he maintained this rhythm. only at the age of five.
“I have always felt accompanied and supported by my parents. My brothers and my grandmother are still pillars in my life. In the good times and in the difficult times, I tried to move forward, improve myself day by day and promote organ donation, because “Without my donor, my reality would be different.”
At the age of nine, Dr. Verónica Aguerre from the liver transplant team at Garrahan Hospital had difficult news: Nahir was suffering Hepato-pulmonary syndromea complication caused by dilation of pulmonary blood vessels, leading to a reduction in the amount of oxygen in the blood. This situation required a liver transplant as soon as possible. The specialist used the word “urgent.”
Nahir and his mother moved to the city of Buenos Aires to wait for this organ.
“It was hard being away from Santiago del Estero, from my brothers, friends, cousins and home. While waiting, I attended Garrahan Hospital School and attended fifth and sixth grades. I used Backpack with oxygen and at night I connected an oxygen tube. I had great difficulty breathing and couldn’t even walk 100 meters without being exhausted. Since then, my check-ups have been regular, especially in pulmonology It was important to take care of my lungs. “I always took medication and had a low-sodium diet,” he remembers.
In the early hours of Sunday, June 17, 2007, Nahir’s mother received the call she had been waiting for: after two years of waiting, a possible transplant was pending. Nahir was admitted that morning and at 4 p.m. The operation began, which lasted until 2 a.m. Monday.
After the operation, Nahir required intensive care. A nurse taught her parents to organize the arsenal of medications she had to take consistently between 5 a.m. and 1 a.m.
“It was a second chance to live. Being able to breathe well changed everything.” “So it was a challenge to play the saxophone, an instrument that requires a lot of air to sound, and also to do physical activity, such as athletics, considering that I previously had to rely on a backpack and an oxygen tube,” he enthuses.
One afternoon, while walking down Florida Street in Buenos Aires, he heard a street group called Pollera-Pantalón in which two girls played the saxophone, and from that moment on he wanted to learn. After a long time, thanks to a television interview, one of the saxophonists contacted her through social networks and she was her teacher for several years.
“The saxophone is a childhood dream. People are surprised by all the songs I know, because in my house we always listen to all kinds of music, including songs from other generations.”
Nahir not only has a passion for the saxophone, he also loves athletics. Inspired by her father, she joined the Gustavo Reimundi group in Santiago del Estero and took part in two editions of the Argentine and Latin American Games for transplant patients, where she took first place in the 200-meter dash and javelin throw. In addition, he took part in several figure skating tournaments and won medals in La Rioja and Santiago del Estero.
A few months ago he returned to Santiago del Estero after living in Buenos Aires for more than seven years. He has been running a baking business since graduating with a degree in gastronomy. As a supplier to the National University, he receives more and more orders.
He has recently experienced moments of fear. She felt listless and unmotivated. At the suggestion of his cousin, he decided to practice acrobatics.
“At first I was scared because I don’t like heights or mechanical rides. Hanging scared me, but gradually I gained confidence and strength in my upper body. Today I’m no longer afraid of heights, I feel more confident and powerful.”
Nahir has found a deep meaning in all his passions (saxophone, athletics, gastronomy and acrobatics), which allows him to nourish every day with facts the precious second chance that life has given him. His story is an example of struggle, hope and the strength to never stop dreaming.
As she approaches her 30th birthday, what would you say to the 11-year-old girl who was still waiting for the transplant?
“Hello, nice to meet you. I’m proud of you: you’re a great patient and you’ll do very well. Wait for the liver, always take care of it.” Life has a lot to teach you and will surprise you day after day. I kept dancing and dreaming that everything would come true if you were okay.”
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