One of the hardest aspects of having CF is outliving the friends you make with CF. I know I fight mentally with the thought of, “When is it my turn?”
Our life isn’t sunshine and rainbows. We fight to live every day and we go through experiences that only a few can really understand. I lose sleep over it because I cannot shut my mind off; I am always thinking about cystic fibrosis and death. I don’t want to, but I do.
Death of a loved one with cystic fibrosis
I met an amazing person with CF during a CF online event. We were inseparable (virtually) for 3 years until he passed. We did treatments through webcam and talked every day. During hospital admissions we still video called. He knew my nurses and I knew his.
We talked about everything: our ports, medicines, and just how we felt. When he started getting worse, we both knew what was coming. He couldn’t have a transplant due to other health issues. We both came to the realization that he was not going to be around very long.
I remember he told me that he wished we met in person and he loved me like his sister. My heart broke each day. I didn’t sleep because I didn’t know when he would go. Before his death, he was still brave and still strong. Then, as quickly as anything, he went.
After his death, my husband and I did a memorial for him because I couldn’t attend his. I was on IVs and couldn’t travel.
Experiencing survivor's guilt
When my best friend died of cystic fibrosis, I felt guilty that I survived and I felt depressed that it wasn’t me. I would rather I go than him and I felt guilty that he had to go first. I did not understand why I was the one who lived and why he had to die. He was stronger than me and I thought we would live a long time together.
There was so much he wanted to do and I wanted so much for him to experience those things. I didn’t know what to do anymore because I was suffering inside. I wanted him to travel more with his wife and I wanted them to see Niagara Falls like he wanted.
I lost my only friend with CF--the only person who knew what I was going through. The person who I could talk to about CF and everything it does because he was going through it, too. I was alone again with CF.
I don’t know why I am still alive and he isn’t, but that’s how CF is. I hate the fact that people with CF die and I wish for a cure one day so no one loses another friend or family member.
I had to get grief counseling. While his death still hurts me, I am working on it. I am working on making sure his memory is not forgotten. I will work hard to be healthy and live as best as I can.
We made a promise to each other to always live like we were healthy. While it’s difficult because I can’t do a lot because I am sick, I do my best to make each day count now.
Have you experienced the death of a loved one with cystic fibrosis? Share their memory with us.
Have you (or a loved one) been experiencing any negative side effects from Trikafta?