I’ve always believed that I had a story to share — this is the time to do so. I was born in 1984 to a set of parents with different lifestyles, not knowing how my life would turn out. I’d love to tell you that my CF diagnosis was as easy as taking a sweat test, however, that’s not the case in this story. 

Months after I was born, my mom made multiple visits to the ER in Miami because I spent days unable to breathe well, with diarrhea and vomiting. Every month was the same — my symptoms would not change, and I would not get any better. Finally, the ER doctor advised my mom that if I ended up at the hospital one more time, they would have to test me for cystic fibrosis. 

Sure enough, in April 1985, I was admitted once again and was tested for CF. The results came back positive, and I was diagnosed with cystic fibrosis. My parents were informed about the disease and were told that the life expectancy was no more than 20 years. However, the doctors were hopeful that, with time, medical science would advance and give us a greater chance of beating the disease. My parents were heartbroken but had faith in God that their son would be healed. I was sent home with a strict diet including enzymes, vitamin K, and vitamin E.

Months later, my mom took my brother and me to Puerto Rico, where she was born. When my condition did not get any better, my mom took me to the Centro Medico de Rio Piedras, the best hospital during that time for treatments and specialists. They were given all of my records from Miami and repeated a sweat test to see where I was standing. The results came back with borderline CF. 

This is where the mystery comes into play. For three months before this sweat test in Puerto Rico, I had uncontrollable diarrhea and shortness of breath — all possible symptoms of cystic fibrosis. But at the moment I was tested, and the results had come back inconclusive, the diarrhea ceased, and I was able to breathe well without any limitations. Coming from a strong faith background, this seemed like a miracle in effect — an answered prayer.
Centro Medico transferred my care to a more local hospital in Manatí, Puerto Rico. Though my lung function wasn’t at its best, we believed CF was no longer a threat, and so I did not get treated for it. At this hospital, I was treated for pneumonia and was officially diagnosed with asthma.

At 6 years old, my family and I travelled back to Miami, where I was once again sent to a lung specialist to get treatment. A sweat test was performed at The Mailman Center in Miami. I remember vividly how they strapped some coils on my arms, and I had to walk outside in the heat to get the sweat to come out. Sure enough, the results did not come back with a positive result. Not presenting any more symptoms, I was removed from my strict diet including the vitamin supplements, and the doctors told me I had never had CF. At one point, a bronchoscopy was done, and the doctor said that I “had something, but it wasn’t asthma or CF.”

Throughout the rest of my childhood, I was treated for asthma and nothing else. No CF regimens, medications, visits, or treatments. No one really knew what I had.

Fast forward to my 20s, when I had to care for myself. I got married and — as many people do when they get married — my wife and I started trying to bring an addition to the family. But there was nothing we could do that would get my wife pregnant, and I started to worry. 

At age 28, I started experiencing sharp pains in my abdominal area; my wife had to rush me to the ER. When I was seen at the hospital, I was diagnosed with pancreatitis and stayed overnight until the levels came back to normal. 

The following year, three years after my wedding, I told my primary care provider (PCP) that I was having a hard time getting my wife pregnant. I told him that when I was younger, I had been diagnosed with CF, and I was concerned it was still present. My PCP ordered some labs and tests. The sperm count was at zero, and my sweat test came out at 100 mmol/L. I was tested for 32 CF mutations, but all came back negative. My PCP said that I had what was considered “borderline CF.” Despite strong evidence that I had CF, the PCP said they were inconclusive results that could not officially diagnose me with CF. I asked to be sent to a CF clinic, however the referral was unable to proceed as my insurance would not cover it.

With my lung condition worsening, having constant flare-ups and visits to the ER, I asked my PCP to refer me to a pulmonologist. I started receiving care for asthma, and in the meantime, I started doing my own research. I searched for possible symptoms and complications you would find in a patient with cystic fibrosis. 

This was the first time my eyes landed on the CF Foundation website. I always knew that the disease affected every major organ in the body. But what, exactly, outside of the lungs? I noticed a long list of problems and I started checking them one after the other: lung restrictions, pancreatitis, male infertility, bone issues (I have osteoarthritis), and vitamin D deficiency. 

I said to myself, I’m either the unluckiest person in the world or there’s really something going on. I brought my findings to my pulmonologist and requested to be sent to a CF specialist. My pulmonologist agreed and sent me to the University of Florida Health Shands Hospital in Gainesville, Fla. 

I discussed 30-something years of my life with my new providers. Labs and exams were ordered. The sweat test came back about 56 mmol/L. The doctor explained that the “borderline” results had to be treated like a positive result, and I was sent to do genetic testing through John Hopkins University. Earlier this year, we received the results, and CF-causing mutations were found.

Since then, I have been placed on Pulmozyme and Trikafta and was approved to wear the Vest. All of this was only possible because I understood that something was wrong and needed to advocate for myself, even when all the other medical professionals had said there was nothing wrong with me. Many doctors had blamed my condition and symptoms on being overweight. But many of the symptoms I was complaining of I had when I was slimmer, so weight could only be a factor, not the cause. There had to been something more. 

It is said that patients always know what they have. I went through too many specialists and none of them saw what the ER doctor in Miami saw in 1985, until now.

I can honestly say that my faith had a lot to do with living with CF, because how else could I explain living 38 years with no CF medication or treatment? I am now at peace knowing that I have the right people working with me as I enter a new phase in my life with CF. I believe in God, but I also believe in medicine and getting the proper treatment for any type of disease. The doctors told my parents that I would not live past my 20s and this past November, I turned 40 years of age. For anyone reading this blog, I urge you to advocate for yourself, your children, and your family, as no one really knows you better than you.

Interested in sharing your story? The CF Community Blog wants to hear from you.