Diary of… a student living with cystic fibrosis

Rojeanna Auriel Hall, who prefers to go by Auriel, is a freshman business administration major. She believes people should live life to the fullest because you never know when it’s going to end. She also thinks people should always be courteous to others because one day those people may help you. Auriel loves taking pictures and capturing the moments in time since memories are beautiful things. She also loves drawing, painting, eating sushi, hanging out with her family and friends and watching movies. She dislikes rude people, greedy people and bugs. 

I was born with cystic fibrosis, a genetic disease that makes it harder for me to breathe and gain weight because my body overproduces mucus, which clogs ducts in my lungs, pancreas and other organs.

My day consists of doing three aerosol treatments in the morning to break up the mucus that is in my lungs. I take multiple vitamins, antibiotics and nose sprays all day to keep me from contracting infections or inflammation.

When I eat meals, I take five pills that replicate enzymes which will break down my food so my body consumes the nutrients. The mucus blocks my pancreas and keeps me from absorbing nutrients naturally and keeps me from maintaining a healthy weight.

I burn calories fast. I often snack throughout the day to consume extra calories. I think of my metabolism as two hamsters running on a wheel. At night, I do an additional three aerosols, medication and I put on a vest that literally shakes my lungs so that I can bring up the gunk from my lungs. Yes, this is all time consuming and annoying, but it keeps me healthy. If I didn’t do any of my treatments I would wind up in the hospital, which is beyond annoying.

I am, though, hospitalized once a year for 14 days to do a series of blood tests, CAT scans, MRIs, antibiotics via IV and ultrasounds. At the hospital, I also do aerosol and respiratory treatments for my lungs.

When I was younger, my doctor decided to feed me via a stomach tube called a “G-button.” A gastrostomy button was placed in my stomach through an incision in my stomach and abdominal wall and stitched into place. With the “G-button,” I could eat during the day and feed through the tube at night so I could get more nutrition. Luckily, I gained enough weight so I don’t have to do that anymore.

The hospital staff is like my second family and they still remember me. My older sister and my younger brother also have cystic fibrosis and we are each other’s support system. Sometimes we are in the hospital at the same time. My sister had a tougher tribulation, two double lung transplants, and my little brother had an intestine blockage when he was born. However, I am happy to say now that they have climbed their hill and are doing moderately OK.

I’m sometimes oblivious when I have a cold or infection. I am so used to coughing that I don’t realize when I am coughing more than usual until a family member mentions it. I go to my pulmonologist every three months for a check up on my weight and lung function. My doctor appointments aren’t short; they actually take 3-4 hours because my doctor is very thorough. I’m not complaining. I would rather he find out what is bothering me than skipping small symptoms which can lead to huge problems.

I do feel out of the loop at school because I often miss days when I am pretty much coughing up a lung at night or staying inside due to weather. But, all of this makes me who I am today. Cold weather can affect how I breathe because of the thin, crisp air; and when it’s too hot out, my lungs clog up.

I remember staying home from school when I was younger on days when there was smoke outside from fires or the cold weather. When I was younger, I was happy to get a day off from school, but when I got older, I regretted it because I wouldn’t get to hang out with my friends. I would miss an “inside” joke or event that happened at school.

However, when it came to school work, I did well for being absent 50 percent of the time. I always got my makeup assignments from my teachers and tried to do them in a timely manner. I had help from teachers and peers when it was difficult, but, nonetheless, got them done. The hospitals now have a teacher assigned to the floor to assist patients with their assignments. I was a B average student and proud.

My illness does not define me. I can do most activities like other people. I may have trouble walking or climbing a staircase but I am just as good as another peer. I had exceeded some expectations of cystic fibrosis. I made it to college. I live on my own. I am not in the hospital 24/7. I’d say I’m doing pretty darn good.

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