“How Scleroderma has changed my life”

Scleroderma has been a part of my life since the day I was born. My dad was diagnosed with diffuse cutaneous systemic sclerosis in 1997. By the time I was born in 2002, my mom and dad were leading typical lives of first time parents.

Around 2006, it became clear that the scleroderma was impacting my dad’s lungs and his lung capacity was rapidly decreasing. He began using oxygen just to complete everyday tasks. A row of oxygen tanks and an oxygen concentrator were introduced into our dining room, right where the typical family might keep a houseplant or china cabinet. As a 4 year old, seeing my dad wear an oxygen tube up his nose seemed normal. I was too young to remember life before he had this device. Although I was used to my dad’s oxygen tube, my friends were often scared or confused when they would meet him. When other children asked, “What is that thing on your dad’s face?”, I would enthusiastically reply, “My dad runs on oxygen!”, as if he was living an alternate version of the classic Dunkin Donuts slogan, America runs on Dunkin.

The oxygen concentrator became the center of many childhood memories. It was my job to increase the flow of oxygen while my dad was going up the stairs and turn it down once he was ready to sleep. This task was important enough to cause grown adults to be nervous, but as a 4 year old kid, it was just another everyday activity. Assisting with my dad’s medical needs taught me responsibility in a way that school can’t. I wasn’t just doing these things for a grade or to earn a trip to the prize box, I was doing it to keep my dad healthy.

Having a dad that requires oxygen also comes with some unusual fun.

My dad and I would play hide and seek, but when I would follow the hose to his presumed location, he would not be there. After calling out, “Dad I found the end of the hose!”, he would respond from a nearby location, asking me to bring it to him. My dad could not run due to his limited lung capacity, so we would also have “slow” races which involved walking a short distance in tiny, prolonged steps. Now, when I share these stories, adults are often shocked and find parts of my childhood to be strange, but just as I was not phased by the tube up my dad’s nose, these unique activities were completely normal for me. I had not known anything else.

As the scleroderma continued to impact my dad’s lungs, he realized a double lung transplant would be necessary if there was going to be any chance at improving his quality of life. One day, as I was walking into my kindergarten classroom, my dad was being admitted into the hospital to have a life changing surgery. When the bus dropped me off at home that day, I was pleasantly surprised to see my grandma waiting to pick me up. This usually means an overnight sleepover at my grandparents house which was always a fun treat. I don’t quite remember how my grandma explained the situation to me, but it was something along the lines of, “Doctors are trying to make your dad better and he will be home soon”. This was the beginning of my dad’s dreadful month-long hospital stay which left me at my grandparent’s house, eagerly waiting to see my dad again.

After the transplant and eventual recovery, all of the things I had mastered were replaced with new challenges. I quickly learned how to help with his feeding tube, split pills, and change bandages. Being actively involved helped me feel comfortable with the organ transplant process.

When my dad recovered, he became active in the organ donation community and a volunteer for the Rhode Island Blood Center. I was interested in this volunteer work and began attending blood drives and organ donation advocacy events with him. My involvement with the blood center increased over time as I went from being a greeter, to handling paperwork, and finally to escorting the donor and blood collection bags to the donation area. This involved the daunting task of carrying a mess of tubes, needles, and bags while leading strangers towards phlebotomists eager to take their blood. When my responsibilities grew, so did my sense of accomplishment. As I took on more involved roles, I was increasing my impact on the organ donation community.

Although I enjoyed being a volunteer, I also wanted to contribute directly to the cause. Despite my success assisting in my dad’s recovery and my personal involvement with a blood center, I still had an extreme fear of needles, but that was not going to stop me. I was determined to help someone who was relying on blood donations. My dad needed blood during his transplant, so I understood the benefits of a blood donation. This was enough motivation for me to put my fear aside and donate at my high school blood drive. This was a special opportunity because the club that I founded, Student Organ Donation Advocates (SODA), was volunteering at this drive. I brought SODA to my school during my sophomore year and started the first ever high school chapter of SODA. I was able to see the club that I created in action. Everything had come full circle.

Through these experiences I have felt the passion that comes with being devoted to a cause.

I have been dedicated to organ and blood donation advocacy for the past twelve years. It has been the focus of many projects, papers, and discussions. I am lucky to have found this passion early on in life because it has given me the opportunity to work on something I believe benefits society. Organ and blood donation advocacy has been a part of my life and identity since that day my dad was in the operating room and I was sitting in my kindergarten classroom.

Scleroderma has impacted nearly every aspect of my life from my childhood and memories to my volunteer work and passions. I would not have been involved in the organ and blood donation community had it not been for my dad’s reduced lung capacity and eventual transplant. Although scleroderma is not something to celebrate, it has been at the center of many amazing parts of my life.

–Katie