My parents always let me take an active role in learning about my cystic fibrosis and medical care. My mom would teach me how to hook up my nebulizers and let me help plan my snacks. They even let me make my own decision about whether to get a gastrostomy tube (G-tube) when I was 13 years old. My parents explained how important the G-tube would be and how it would help me. They told me the negatives along with the positives -- never hiding anything -- but stressing all the good it could do. I made the right choice and got my G-tube shortly after. By letting me start making my own choices earlier in my life, my parents helped me find my own voice as I got older.
It wasn't until college that I had to make all the decisions by myself. Sure, I'd call my mom and get her opinion. But she wasn't on campus with me. I had to step up my efforts in college to maintain my lung function and weight by myself. But that was only the beginning.
Here a few times where advocating for myself is really important:
- I'm deathly allergic to morphine. I go into anaphylactic shock if I am administered it. Therefore, I always check what medication they are giving me (I usually always refuse any pain medication, just to be safe).
- My mediport was placed when I was 12 years old and it still works … whew. It takes saline to lock it, not heparin. Also, we do not draw any blood off of it or do blood returns (due to another medical problem I have). However, drawing blood out of ports is a routine type procedure. Almost every time I'm admitted, the lab tech comes and I have to explain they can't draw off my port.
- I had an admission doctor one time (who was unfamiliar with my history) prescribe a heparin shot. When the nurse came in to give it I asked her, “Why was that ordered?” They said it was routine. I refused it and said, “I have never gotten a heparin shot in my life because I have blood clotting troubles to begin with, and thinning my blood more would be a horrible idea.” My CF doctor came in the next day and said he was glad I refused it and couldn't believe the other doctor ordered it. Mistakes happen.
I'm a strong believer in advocating for yourself and here are some simple ways you can do that:
- Be aware of all your medications (I keep a pre-written list on the computer to print off if I need it).
- Keep track of lung function, weight, glucose, etc. I put my information into an excel spreadsheet after every clinic and make a graph to see how my health is doing.
- Ask about new treatments and medications and do your own research. I don't say this because you know better than your CF doctor. It is just nice to know what to expect and understand everything.
- While on IVs or in the hospital, I question everything. Some nurses may get annoyed, but most don't mind. Hospital staff are human, too. They do make mistakes. (See number three above.)
- Keeping up with current CF news, research and equipment can help you get the best care, too. Asking about new research trials or how to get the latest nebulizer machine are important.
- Make sure your school or work are accommodating your needs. For example, I carried my enzymes on me at school as a kid. Since they are harmless to other kids and I need them exactly whenever I eat, we wanted me to have easy access. At work, all my office mates know I have CF. They know I do therapies in my cubicle and that I need to eat constantly. They avoid me when they are sick and keep hand sanitizer available. Don't let any teacher, boss or co-worker make you feel bad for coughing. I share about my CF to inform, advocate and spread awareness all at the same time.
While I do believe that our doctors have our best interest at heart, they have a lot of patients. Remembering everything about every patient is very difficult. I come into clinic every time with a list of topics and questions. I'm very vocal about my thoughts and healthcare. Advocating for myself has helped me stay as healthy as I am today.