Adjusting to My Port
I spent the last 14 months trying to figure out how to deal with seeing myself in a different way. Living with a terminal illness, like cystic fibrosis, was always easy to hide for me because no one could see that I was terminally ill from the outside. I’ve recently had to learn how to love and appreciate my new skin, with my new port. A port is a small device that is placed beneath the skin, on the upper chest area. A catheter connects the port to a vein that goes directly into your heart.
What are others thinking about my cystic fibrosis port?
I spent months thinking about how unattractive it is, and how it’s big and bulky. I felt I was too thin, which is why it seemed more bulky to me. Is this a sign that my heath will never get better? Are people going to constantly ask me what is this thing, and why do I have it? Am I going to have to explain to someone I don’t know that I have a terminal illness?
Appreciating my cystic fibrosis port
So many questions I asked myself daily.. until I realized if I didn’t have my port, my access to medication would be slim, as my body has become resistant to most oral medications. I’d require more surgeries, more time spent under anesthesia, and more time in the hospital. I’m so thankful for the advancements in medicine, like this port. My port makes it easier for me to be able to do my meds in the comfort of my own home.
As time has passed, I’ve learned that it’s the little (bulky) things that make my life easier long term. I’m thankful that at almost 26 years old, I’m still here, and decently healthy compared to others. Keep in mind that medicine is so helpful and keeps people like me alive every single day.
Have you (or a loved one) been experiencing any negative side effects from Trikafta?