‘You are different and always will be.’ I carried that fear with me into adulthood.’: Woman openly shares journey with Cystic Fibrosis, kidney transplant, and diabetes

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“Hello, my name is Jillian Monitello. I am 31 years old, and I am from Staten Island, New York. Growing up was not the easiest for me, and still, things feel a bit crazy at times. I was born with a genetic, terminal disease called Cystic Fibrosis. Cystic Fibrosis (CF) causes the body to produce abnormal, thick, and sticky mucus throughout the body. CF primarily impacts the lungs, causing a buildup of mucus, which leads to frequent lung infections and primarily loss of lung function over time. At thirteen months old, I was diagnosed with CF. My parents knew something wasn’t right. I was a very fussy baby, and I was not thriving. I was underweight, was a picky eater, and I wound up with bronchitis twice back to back.

The first pediatrician I went to overlooked the symptoms that my parents would describe to him. The biggest symptom I was having was rectal prolapse from being malnourished. People with CF have a hard time gaining weight because most of us are pancreatic insufficient, meaning our digestive enzymes can’t do their job since the mucus is blocking the pancreatic enzyme duct. Without digestive enzymes, whatever we eat will just go right through us. I struggled with digestive issues quite a bit as a young girl and still do once in a while. When my parents weren’t happy with my health, they took me to another pediatrician, who sent me to a pulmonologist to have a sweat test done. A sweat test is used to measure the amount of salt in a person’s sweat. If the salt content is high, then you will usually be given a diagnosis of CF.

It took two tries before the test was done properly, and on June 11, 1991, I was diagnosed. From there on, things were not easy, but we knew what we were dealing with at least. This is where my real CF journey began. My parents took me to a CF specialist, but they were not happy with the quality of care he provided, so they took me to another CF center recommended by a friend who had CF. The new CF center taught my parents how to do proper chest PT on my chest, back, and sides to loosen the mucus in my lungs. Each day they would do two chest PTs and nebulizer treatments. The chest PTs consisted of my parents clapping their hands on my back, chest, and sides totaling eight positions. It also consisted of them using their hands to vibrate those areas and make me cough. I didn’t always cough on my own, so they would have to use a catheter to tickle my throat and make me cough. It wasn’t a comfortable feeling at all. I would feel like I was going to gag each time. They would also push on my trachea to get me to cough. They also taught them how to administer digestive enzymes.

A young girl with Cystic Fibrosis sits with toys
Courtesy of Jillian Monitello

You could imagine that giving a thirteen-month-old baby some pills to swallow was not the easiest. So my parents used baby food applesauce. They would open up the capsules, and inside were the enzymes, which looked like small round sprinkles. I would swallow them with the baby food, and at times, they would not all make it down my throat. I would then spit the tiny enzymes all over the kitchen floor. When my mom would vacuum, you would hear them getting sucked up, making me laugh. While going to the new center in Manhattan, we were blessed with an amazing doctor who had CF himself.

baby with Cystic Fibrosis being held by her mother
Courtesy of Susan Cameron Photography

He truly was one of a kind and an angel on earth. We also learned that when I was sick, meaning I had a lung infection, chest PTs would increase to three per day and at times four. Each therapy would take my parents two hours to complete. We also learned that I would need frequent oral, inhaled, and IV antibiotics throughout my life to help clear up the infections and keep the bacteria in my lungs at bay. From here, things started looking up for me. It wasn’t until two years later that my CF doctor said to my parents, ‘You brought me a very sick baby, and I was scared for her.’ What is funny about this is that the first specialist told my parents I was healthy during the same time that my new doctor said I was sick. I am beyond blessed that my parents followed their instincts and were able to get my health in the right doctor’s hands.

From here, my health started thriving. I was gaining weight and growing. I was able to breathe better. I was a normal girl, enjoying life and making the best of things. I started preschool at the age of four, and I absolutely loved it. That is where I began being responsible for my own health for a few hours at a time, and I made my first bunch of friends on my own. The first time my friends saw the baby food jar, they laughed a bit and asked why I was eating baby food. I explained to them that it helps my pills go down easier and that regular applesauce is too chunky. They were all accepting of it, but that was my first time explaining a tiny bit about CF to those my age. I stayed in the same school until the fifth grade.

As the years went on, I ran into a few bullies in this school, and they would make fun of how I took my pills. One of my classmates told me, ‘You are different and always will be.’ Obviously, I knew I was different in terms of my health and daily schedule, but being told that wasn’t the nicest feeling. I learned kids can be cruel, but so can adults. If good things exist, then so does evil. I learned you can’t fight evil with evil, so it has to be combated with good. I saw how my life was different from my brothers’, and I knew my friends’ lives were similar to my brothers.

A young girl with Cystic Fibrosis riding a bike
Courtesy of Jillian Monitello

However, when it came to making friends, keeping up in the classroom, and stepping foot on the basketball court, I was equivalent to everyone else. CF is pretty much an invisible disease, and on the basketball court, I felt like CF had disappeared. Some of the kids would also bring up my life expectancy. I didn’t think too much about that until it was brought up to me by a classmate. No one wants to think about dying, but that is reality, and I am glad I didn’t let that thought linger too long. I did tell my mom, and she was not happy and even spoke with my teacher. This is not what made me switch schools. I just wanted a change. The biggest obstacle I faced was how CF was so time-consuming. I never felt like there was enough time in a day. Each year my family and friends would raise funds with our letter campaign and walk under my team, Jillian’s Team, at the Great Strides Cystic Fibrosis Walk. This was a time where my family and friends would come out to support our mission to find a cure, and it felt great knowing so many loved ones were in my corner.

child wearing overalls standing next to a sign
Courtesy of Jillian Monitello

Those who supported me definitely outweighed the few that didn’t. Contributing to CF research gave us hope that one day there would be a cure. The walks also reminded me of those we lost to CF along the way and how continuing our mission for a cure had to be continued. Over the years, we would find out that new medications and studies were going on. After watching my older brother join different sports teams, I also got into sports, which really helped my health a lot. Exercise is a crucial part of CF care, and it helps the mucus in the lungs come up and out easier. After playing soccer for two years, basketball became my newfound love. I played at the competitive level all the way into my first year of college. Running up and down the basketball court was my sweet escape from my reality. When I played sports, I would lose track of the score and time, and I would continue running and chasing the ball until the whistle was blown.

Woman in a jersey holding a basketball
Courtesy of Jillian Monitello

My brother was always shocked that I didn’t know if my team won or lost. Winning or losing wasn’t important to me. As I got more competitive and played travel basketball, I started to care more about winning and losing, but I still didn’t let that ruin the fun I had. I could never really understand why everyone would be so upset about losing, but I guess maybe that was because in my life, I was fighting the biggest battle, or rather I was playing in the biggest game called life. At age eleven, I developed Cystic Fibrosis Related Diabetes. I was put on insulin, and this was a huge adjustment for me. As the years went on, I would say to my parents, ‘CF isn’t going to kill me, but diabetes will.’ When it came to diabetes, my biggest fear was going too low and passing out. Ever since I pretty much passed out from pretty low blood sugar in the eighth grade. I carried that fear with me into adulthood until I finally switched to a diabetes center. They introduced me to all of the new technology that helped me overcome my fear and understand how diabetes works.

Young girl with Cystic Fibrosis dressed in sports uniform
Courtesy of Jillian Monitello

Over the years throughout high school, I developed many lung infections, which led to many IV antibiotic courses, steroids, hospitalizations, and loss of lung function. Being sick with lung infections also didn’t help my diabetes. At age 16, I was pretty sick. I was out of school for two and a half months on IV antibiotics and was also hospitalized for a couple of weeks. After doing all my doctor could, she wanted me to be off of IVs and to just go back to my normal health routine. I couldn’t figure out how this would make things better, but I realized she was right. There is only so much that can be done. I left her office with sixty-five percent lung function, and my normal was around seventy-eight at the time. My doctor told me to pray, which is what I always did anyway. I always put my trust in God. Fast forward to three months later, my prayers were answered, and my lung function returned to its normal baseline.

Sometimes when we don’t think God is listening, we need to be patient and understand everything is in His timing. Talking to God is what has kept me calm during some of the scariest times in my life. God has also answered many prayers that didn’t have to do with worrisome times. I remember praying to God right before starting college. I wanted to meet a good man, one who was respectful, fun, and loving. On August 26, 2008, at college orientation, I met my husband, Rosario Azzarelli. We were in the same honors program.

Woman in front of metlife building with others
Courtesy of Jillian Monitello

After getting to know him better, we went on our first date in November, and here is where I had to break the news about having CF to him. As I took out my pills and applesauce jar, I briefly told him that I was okay and that I had Cystic Fibrosis. He said, ‘I think I heard of that before.’ I was surprised and realized he probably mixed it up with something else. CF isn’t too well known, but in recent years it is becoming more known. After researching it, he had tons of questions, and I can tell he was a bit upset about hearing all of the gruesome things that came along with one having CF. However, Rosario chose to stay for the great times and the bad times, but his support meant the world to me and still does each and every day. He has shown me what unconditional love really is and just how important having a support system is. My family has always been my support system as well. Fast forward five years later, on December 25, 2013, Rosario and I got engaged, and on May 30, 2015, we got married with our family and friends surrounding us. Our wedding day was the best day of our lives, but also one of the scariest ever.

Before our reception, I had a huge lung bleed that lasted two hours, which I had never experienced before. Nothing like this had ever happened before. My pediatric CF doctor took care of me since she was attending the wedding. Seeing the way our bridal party and family came together as one that night was so touching. That really showed us the love and support we were surrounded by, and it meant the world to us. In 2017, Rosario and I started a YouTube channel called The Azzarelli CF Life to help spread awareness about CF. We show daily videos of what our life with CF looked like as well as normal everyday life. During this time, my health was deteriorating, and I was on and off IV antibiotics and steroids frequently. I was also in the hospital often, and there wasn’t much that helped with the lung bleeding episodes. I was bleeding four to five times per week.

Bride and groom on their wedding day in a car
Courtesy of Jillian Monitello

I would carry around tons of paper towels and keep an ice pack close by to help with the bleeding. The ice pack was more of a mental thing to help keep me calm so that my blood pressure didn’t go too high. This made life so unpredictable. We couldn’t even go out to dinner without having to worry about the bleeding. It was a vicious cycle. On November 16, 2019, just two months before entering into kidney failure, I took my first dose of a new medication called Trikafta, which treats CF’s underlying cause. I didn’t get my hopes up because I figured it would be similar to the last two medications I was on that treat the underlying cause of CF. Long story short, this medication changed my life, and I feel as if all the years of damaged lungs were reversed. Two years ago was the last time I coughed up a lot of mucus and the last time I coughed on a daily basis. Since then, I have gained a healthy amount of weight, and the lung bleeding has pretty much subsided as well as the mucus production.

A woman and her kidney donor hold up t-shirts
Courtesy of Jillian Monitello

Life is much more predictable from a lung standpoint, and I can actually breathe. My lung function has also increased by over thirty percent, giving me normal lung function. I have been able to cut back on my therapies, and instead of fourteen or more chest therapies per week, I now do three therapies per week. I also have not been on antibiotics for CF in over two years. I am forever blessed that this medication changed my trajectory. As far as kidney failure goes, on January 20, 2021, I received a life-saving living kidney donor transplant from my amazing and selfless friend Liz. The kidney transplant came with a few obstacles, but overall I am doing great and am so blessed by my donor choice to give me life. She is my superhero. I am also listed for a pancreas transplant and as much as I am not looking forward to that, it may be in my future sooner rather than later. Receiving the gift of life has been one of the most humbling and impactful experiences ever and one of the most beautiful.

The amount of support I was shown during this time and throughout my life has been what has kept me motivated. God willing, my goal for the future is to continue honoring my Liz and live life to the fullest. Another huge dream of mine since I was eighteen was to become a published author, and in May 2021, I found out that my manuscript was accepted by a publishing company. My first book about my life, ‘Moments of Impact,’ will be coming out at the beginning of 2022. I plan on writing another one to two books to continue my story where it leaves off. I am excited to share my story about perseverance, love, family, friendship, and my faith in God with the world. I hope it inspires others going through trying times to not give up and give it their all. I enjoy relating to others, and I hope many can relate to my story.”

A woman with CF and her husband on a beach
Courtesy of Emerald Studios Photography

This story was submitted to Love What Matters by Jillian Monitello of Staten Island, New York. You can follow her journey on Instagram, Youtube, and their Book Page. Submit your own story here, and be sure to subscribeto our free email newsletter for our best stories, and YouTube for our best videos.

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