My name is Nelson Soto and I am originally from Quito Ecuador, a beautiful South American city that is home to my friends and family. At 10 years old I was diagnosed with Cystic Fibrosis, news that changed my family’s life in a minute. The statistics were against me and the situation got worse when we realized that in my country, there were no doctors, treatments or medicines to treat my illness. My mom was determined to not sit down and do nothing … she had to fight. Thanks to friends and acquaintances we managed to bring basic medicines from the Unites States, such as pancreatic enzymes. We began to be our own specialist by reading and talking with doctors in different countries like Brazil, France and Unites States. With the help of other mothers with CF children, my mother founded the Ecuadorian Cystic Fibrosis foundation. A huge step for my health because now she was able to bring all these doctors to examine us every now and then.
The years went by and the basic treatments I had were already wreaking havoc on my general health. The disease was progressing faster and faster. After finishing high school I was very affected with pneumonias and infections. Once again my mother and family decided to fight back. After much researching and calling, we found a CF center in NYC in which the main specialist spoke Spanish. Since we arrived everything has been different. Finally someone understood our problems. There were hospitals with the necessary equipment to treat me and the most wonderful thing of all…we could buy my medicine at any drugstore.
After spending 15 days in the hospital, I left feeling like a different person. It was more than obvious, my life was now in New York. So my parents sold their house and I began studying at the university so I can stay legally and continue with my treatment. The first years were very good, but as for my last two years of college, I was going to classes with oxygen tanks instead of books in my backpack. Until the day came when I could no longer go to study and I had to stay in the hospital unable to breathe or move. My lungs had given up. At this time, I was admitted into Columbia Presbyterian Lung Transplant Center. Since the day of my activation, I was called to be transplanted 5 times. One time, I was in the operation room ready for surgery, about to be induced with anesthesia, when doctors cancelled the transplant. The fifth time was the charm. On January 13, 2008 and just when I had no more strength, I got my life-saving transplant.
I was never a healthy person, never knew the sensation of breathing fine, but when the doctors removed the tubes and I start breathing with my new lungs, the feeling was indescribable. After finishing my recovery, thanks to my doctors and people of the transplant team, I graduated from college with honors. I live a healthy life in the company of my mother, who has never left me alone –even though it meant leaving her life in Ecuador.
Ironically my heart was in my country and after almost 6 years of not traveling, I decided to go back and see my family, especially my two little nephews. I asked permission from my doctors at the Transplant Center and returned to Ecuador with the commitment to return every year for my annual checkup. In Ecuador it was like starting over again. It was very hard but with the support of good friends and my family, I built a new full life – a happy life.
In January 2016 I was diagnosed with kidney disease and a year later, two weeks after I got married, I had to travel back to the US to do all the tests and necessary preparations to be on the kidney transplant list. My family, always present in my struggles and now my sister will donate her kidney to help me. And so, I hope to pass this new test that life gives me. I trust that my life will be better than before, not just because of my health, but because once again, my family, friends and incredible people like my doctor and transplant team personnel are by my side.