What I wish people knew about cystic fibrosis and life after transplant. 

Before my transplant, I was known to have a little cough, well, it was more than a normal cough. As I matured my CF progressed as well. This cough of mine, became more than a minor inconvenience during my college years. One of many instances would have me become the center of off-putting stares as my little cough would disrupt the lecture multiple times. With the glares came judgment and misunderstandings.. Even the one professor that I told about my condition still had negative remarks about my coughing. Whether or not this was attributed to the forgetfulness of having hundreds of students, I often felt frustrated about this perception that people had about me and my cough that I knew wasn’t true.

During the times of me getting to class, I would need to take breather breaks on the stairs but also I would try to arrive early enough to class so I could catch my breath. My face was always so red from the struggle of trying to breathe and from coughing. This would often attract more attention and I would be asked if I was okay. I wish they knew that this was my normal.

I wish people knew that essential oils won't cure CF. Throughout my years I have received a lot ofunsolicited advice from people. I get that they were trying to help me, but they didn’t understand CF and its complexities. Essential oils, or certain teas could not cure me.Time and time again I would get suggestions on how to “cure’ myself so that I would not need to take pharmaceuticals. Certain herbs and essential oils would always be the answer. On some occasions people would recommend CBD and THC as replacements to my medications. I wish these types of people would understand that none of these “remedies” can replace any of my anti-rejection meds or my enzymes.

Another thing I wished people knew before transplant was that I wasn’t trying to be skinny. My goal was quite the opposite.People on theoutside would say I was lucky that I could eat anything I wanted and wouldn't get fat. I ate what I could to cling onto whatever pounds I would manage to gain. In fact, I would drink super high calorie shakes every day, and that I also was using my feeding tube overnight every night. The struggle to gain and maintain weight was an everyday tireless battle. Other comments I would get were, “eat a burger, you need it”, “you should eat something”, “must be nice”.

Something that I would do before COVID arrived was wearing masks in public, such as any store, indoor concert hall, public transportation, and the airport and airplane.I got used to people giving me looks but also people often would stay away, granting me not having someone sitting next to me on the plane. Wearing a mask in stores now that people are over COVID and mask mandates have gone away, people either think I’m unvaccinated or just one of those paranoid people. They don’t understand that I’m just doing what I was doing before wearing masks was “cool” to keep my new lungs safe because I’m immunocompromised.

And the last thing that I wish people knew about cystic fibrosis is that we aren’t weak and that we aren’t useless. We are stronger than most people. We have gone through so much and battle CF everyday. We don’t want your sympathy or your pity. We deal with what hand we were given and do it well. I wish people knew that us having rest days isn’t us being lazy. Our bodies need rest and time to heal especially when we are sick. We are CF warriorsand we will always put up a fight.