CF Happens

If the topic of death and dying is triggering for you, I suggest you don’t continue reading.

A fellow CFer (in a CF women’s group I started) asked about end of life decisions as far as a living will and a DPOA (durable power of attorney) and what she should have in place. Her father is dying (not from CF) and as she’s by his side she realized she needs something in place for her wishes but didn’t know where to start.

I wrote some thoughts in my notes app on my phone regarding death and dying a few days ago after watching a documentary on medical aid in dying (MAID). The point of this post is not the topic of medical aid in dying. I don’t feel the need to tell you my point of view on that subject because that is a personal thing and the way I feel is the way I feel. Anyway, that documentary got me thinking about end of life, in regard to my life with CF.

My mom and I talked about end of life and death often because it’s my reality with an incurable genetic disease. Our family has never shied away from the topic. My mom had COPD. When she was visiting me in Tennessee the week before she passed away the topic of what she and I wanted at the end of our lives came up. Who would have thought that conversation would come into play a week later. She didn’t have anything in writing like a living will or a DPOA. My family listened to me when I shared what my mom told me her wishes were.

I have a living will stating what my wishes are along with a DPOA stating who can make my healthcare decisions if I’m unable to make them. My CF hospital and my transplant hospital have a copy of both.

POSSIBLY TRIGGERING PART: Now onto my feelings on dying in regard to my own life. Am I afraid of dying?? That’s a weighted question. Obviously I don’t want to leave this world where my people are and I don’t want them to have to live without me. I don’t want my loved ones to hurt when I die and they have to continue on without me.

The fear comes in with not being able to breathe. I already get anxiety when I can’t catch my breath “easily.” It’s scary when I feel like I can’t get enough air in. This is the reason I take LOTS of breaks when doing basically anything physical. I usually push myself too far because I’m stubborn and don’t want to need breaks. When I have to catch my breath I concentrate on my breathing to focus on getting the air in slowly and not in a panic. This is my life with 30% lung function.

I don’t swim anymore (aka go underwater). I either stand or sit on the stairs on the pool. haha The thought of being trapped” underwater and not being able to get to the top to breathe kinda freaks me out.

Randomly I also have a little fear of throwing up and aspirating into my lungs (vomit going into my lungs). I feel like my body would try to instinctually breathe as I was throwing up because I am already hyper aware of my breathing. I’ve thrown up twice in my life that I can remember and that was when I was a kid. I hated every second of it! I will do everything in my power NOT to throw up. I lamaze breathe my way through feeling nauseous. I also have anti-nausea meds if I need them. I know that most people say “if I just throw up I know I’ll feel better,” I am NOT one of those people. haha

I say all that to say, talking about death shouldn’t be a taboo subject. Talking about death doesn’t mean you are speaking it into existence. Death is going to happen to everyone. For those of us with chronic diseases, death due to complications from that disease is a reality. It’s not a fun reality but you can have a say how it goes. You can be in charge of it.

I speak from experience when I say talking with your loved ones about how you want your end of life to look is worth it. Knowing what my mom wanted helped to make those decisions. If you have a hard time talking about your wishes with someone, you need to have a living will in place so you can put in writing what you want. Also you should have at least one person you can trust to fulfill your wishes if you are not able to with a DPOA.

Losing loved ones isn’t fair. Living life without our loved ones isn’t fair. Death isn’t fair.

Until next time…