July 2, 1997. Little baby me was only 2 months old, and this was the day I was diagnosed with Cystic Fibrosis. For those that don’t know, CF is disease that affects the respiratory and digestive systems, specifically the lungs and pancreas. A child gets CF when they inherit two copies of a defective gene-one from each parent. There are different severities of CF. It all just depends on which genetic mutations you inherit.
When you have cystic fibrosis, you spend anywhere from 1 hour to 3 hours a day doing breathing treatments and physical therapy to breathe better and help prevent lung infections. When you have cystic fibrosis, your pancreas doesn’t make enough, (if any) digestive enzymes. Obviously, if you don’t have digestive enzymes, you can’t digest food properly which leads to malabsorption, extreme weight loss, anemia and a number of other problems that you can just imagine aren’t very pleasant.
When you have CF, some nights, your lungs decide to be difficult. Your night is usually filled with nebulizers, hot tea and honey, cough drops that do next to nothing, and movie marathons. When I was young, I’d spend those nights watching The Rugrats Movie like it was my job. After having a couple nights in a row where you can’t sleep because you’re coughing so bad, it usually means that something isn’t right, and that something is almost always a lung infection.
Not always, but most of the time, when someone with cystic fibrosis gets a lung infection, it results in a 2-3 week stay in the hospital receiving antibiotics through a PICC line. Which the best way to explain it is like a super long, flexible IV that runs right above the heart. To most people, the thought of this is scary and while to CFers it is a bit scary, it’s routine. After a while, you learn to bring your own pillows, comforters, DVDs, basically your whole bedroom is dropped and lifted into the hospital room. You develop friendships with the floor nurses who bring you chocolate milkshakes and come in and tell you about something dumb their friend did to distract you from the fact that you’re sick.
When you’re born with CF, you grow up knowing it’s a part of you. You don’t know how life is like without it. You’re used to the treatments and the medications, and then when you get into high school and you have a coughing fit in the middle of class and some kid says “easy on the cigarettes” all you can do is roll your eyes. But one of the other complications that can develop with CF as you get older is cystic fibrosis related diabetes. (CFRD.) This is due to the pancreas not being able to create enough insulin. CFRD isn’t type 1 diabetes, nor is type 2. It’s basically 75% type one, 25% type 2. Personally, I had been watching my blood sugars here and there ever since I was 11 years old. I had never been officially diagnosed with CFRD, until one month ago.
When I was 11, I was 60 pounds. They told me I needed a G-Tube permanently. This meant for the rest of my life, I would have a tube in my stomach giving me nutrients. I wasn’t having that. Within a month, I had started gaining weight and 2 years later, I was past the 100 pound mark. The fight between me and the G-Tube went to me. When I was 18, a series of unfortunate events led to me being in kidney failure for a month.
One month barely moving in a hospital bed, not knowing what day it was or where I was. I was basically a potato. Creatinine levels are suppose to be in the range of .6-1.1. You’re said to have severe kidney impairment at 5.0. Two weeks in and my creatinine was 14.4. They came in one morning and told me I was going to start dialysis the next day unless by some miracle, my number didn’t go up overnight. They then went on to talk to me about how kidney transplants work, “just for fun.”
Again, I wasn’t having it. That night was the first night my number didn’t go up. It stayed the same, but didn’t go up which meant no further damage had been done. After the longest 2 weeks after that, my creatinine was at 3.3, and they said I could go home. The battle between my kidneys and myself went to me. During my follow-up appointment the explained to my sugars were high and we were going to start watching them more attentively. This led to the discovery that I have developed CFRD.
Personally for me, I saw this as a defeat, like CF had won round three of the battle and was declared the winner. It isn’t my fault that I developed CFRD, all those sour patch kids and reese's cups didn’t add up suddenly to cause this. It was something I knew was bound to happen. But, for some reason, I felt like it was my fault. After struggling to make a decision on whether to accept that I have it and decide to go on insulin or to ignore it and just hope it doesn’t get worse, I decided to go on insulin starting later this month. The main reason behind my decision, I can finally go back to eating all the gummy bears, sour patch watermelons, and chocolate bars I want.
I’m not going to lie. It’s a bit difficult for me to be 100% comfortable putting this on the internet, as it’s not something I usually make public. But I’ve been reading a lot lately on Selena Gomez coming out and talking about her struggle with Lupus, Nick Jonas talking about his struggles with diabetes, Miley Cyrus talking about her “Just Breathe” tattoo and it being in remembrance of her friend with CF, and the Teen Wolf cast taking over social media to bring awareness to Cystic Fibrosis. It made me realize I have a story to tell, and I hope that my words can inspire others who deal with an illness to not be ashamed and to be proud that you’ve lived with whatever you’ve lived with and not to be afraid to share your story, And to any young CFers reading this, I know it may be a bit annoying having your mom or dad constantly ask if you’ve done all your treatments or taken all your medicine, TRUST ME, i know. But know, as you get older, you’re actually going to sometimes miss being asked that fifteen times a day. Appreciate it.
