Being Prepared With Advanced Planning
Advance directives aren’t something to be scared about doing and it’s not something to put off either. We each have preferences and, when the time comes, we can have our wishes honored. Having cystic fibrosis forced me to think about death at a young age and--while it was scary--setting up advance directives was the best decision that I have ever made for my healthcare.
Why set up advance directives?
I’ve had my advance directives since I was a teen. I have changed it probably 5 times since then because as I’ve grown older my wishes have changed. Advance directives help relieve the burden of decision making for our families in the event that we can’t make healthcare or end-of-life decisions for ourselves. When people are suffering from grief or a crisis, they don’t think straight. For me, it's important for my family to not worry about those things.
An advance directive gives you a sense of control over a situation where you don’t have any control. It involves you deciding about resuscitation, mechanical ventilation. tube feedings, dialysis, comfort care, organ and tissue donation, and/or donating your body (if you choose that route) in the event of death. You can also have a medical power of attorney or health care proxy, which is basically someone you can trust to make medical decisions for you if you can’t, like a spouse or anyone you trust a whole lot.1
A lot of states have different laws and regulations regarding these, but you can change them whenever you want and even cancel it anytime.1 I know, in my experience, it’s helped me feel more secure that I did the right thing for me.
How advance directives have comforted me
Having CF means a lot of things for many people because we are all in different stages of our CF and in different journeys. But it always hurts my heart when a person loses their life to CF.
I just want to be prepared that if I am in a moment where I can’t make decisions for myself verbally, I have my advance directive there to act as my voice. I know that everything I want will be respected and no one can bypass it or try to fight it because it is my wish.
It was scary to set up my advance directive because I felt like I was putting a bad omen on myself. Maybe it would be some sort of bad luck? But it’s actually been quite helpful and comforting to have.
How I got started
I brought advance directives up with my cystic fibrosis social worker and she brought me the paperwork and I got it done quickly. It wasn’t so bad and I am happy that my family can at least not worry about any decisions during a difficult time. I want my voice to be heard and my wishes to be followed.
I feel like I released my family of a burden, because I know a lot of families struggle with things like life support. Now my family doesn’t have to be in that position. While it was scary to think about, it was actually a huge comfort to get it over with and make sure that I get what I feel I need during a medical crisis.
Have you set up advance directives with your cystic fibrosis care team? Share your thoughts and experiences in the comments below.
Have you (or a loved one) been experiencing any negative side effects from Trikafta?