As part of the Patients as Partners Webinar, Caroline Gainer and I talked about her experience with the My COPD Action Plan.COPD Foundation Educational Materials Caroline has COPD, she is a COPD Foundation State Captain, and lives in West Virginia.
Jane: It can be hard to tell if you’re having just a bad day or feeling tired, or if you have an oncoming exacerbation. Can the My COPD Action Plan help with that?
Caroline: Yes, it certainly can. My doctor noticed that the precursor to my being ill is usually that I’m tired more than one day in a row. So that’s written in on my action plan: if I’m tired more than one day in a row, I should contact my doctor.
Action Plan tip: If a specific symptom is a “red flag” for you, you should write it in on your COPD action plan.
Jane: How does the action plan work when you have more than one doctor?
Caroline: Both of my doctors have a copy of the plan. Sometimes there will be a question about an item on it, and my general practitioner will say, “Your pulmonologist is taking care of that,” so he can check that off as something he doesn’t have to worry about.
Also, it changes the perspective of your role in respect to the doctor. It changes the whole relationship. For example, when I was teaching, at first it was that the teacher had total control of the classroom, dispensing information—being the authoritarian. As a result, this could sometimes make for a bit of an adverse relationship between a student and teacher. But once computers came into the picture, when both student and teacher were getting information from the computer, they became more like a team. There was a cooperation there that didn’t exist before. I think the action plan does the same thing with the doctor and the patient.
Action plan tip: Make sure all your doctors have a copy of your action plan and that they are in touch with each other, if necessary.
Jane: A person with COPD may tend to get sicker more quickly than many of a health care provider’s other patients. During flu season, for example, your doctor’s office staff may get a lot of calls from patients reporting the same symptoms. How do you get the staff to understand that your situation is probably more urgent than many of their other patients?
Caroline: When I call in, there is a specific person in the office I ask to speak with, a nurse. She knows right away that I have COPD, and she has a copy of my action plan. Usually, the two of us can decide whether or not I have to come into the office, or if I just need to start taking medications. I always have an antibiotic and a corticosteroid dose pack on hand at home. So, if we determine that I’m getting an exacerbation, I can start the medication immediately. Then we go from there about when I need to see the doctor.
Action Plan tip: Ask your doctor how you can both (you and your doctor’s office staff) do better at making sure you get help as quickly as possible when calling the office.
Jane: Does the My COPD Action Plan actually help you avoid exacerbations?
Caroline: Yes, it does. I used to wake up in the morning, run to make coffee, and start my day. I didn’t take stock in how I felt. But now, in light of my COPD, every morning I assess how I feel. I ask myself, “Am I in the green or yellow zone? Am I short of breath? Do I feel tired?” I check my pulse oximetry to get my oxygen level and heart rate. If all these things are fine, then okay, I’m good for the day. But if I feel a little bit breathless, I wonder if the weather could be causing it. If I my pulse oximetry showed that my heart rate was up, I think that maybe it’s not just the weather. Maybe I should take it easy today.
I know now that my body was always talking to me, telling me how it was doing—but sometimes I just ignored it. Now, whenever my body is talking, I try to listen.
Action Plan tip: First thing in the morning, take a few minutes to look at yourself -- your breathing, cough, pulse oximetry, and your action plan zones, etc.
Do you use a My COPD Action Plan? If so, what are your tips for using it to help you stay well?
Let’s talk! I look forward to hearing from you!
What is an Exacerbation or Flare Up | COPD Foundation
Demonstration of the My COPD Action Plan on app: The COPD PCG App: My COPD Action Plan - YouTube
My COPD Action Plan Quiz: Check in - How much do you know about the My COPD Action Plan? (copdfoundation.org) .
Check in – Have you seen the COPD patient-track mobile app…? (copdfoundation.org)
Check in - How can I involve my family in my COPD management? (copdfoundation.org)
Download the My COPD Action Plan: COPD Foundation Educational Materials .