Getting Your Healthcare Provider to Listen to You!
COPD is a chronic disease that will get progressively worse over time. As of now, there is no cure. Upon being diagnosed with COPD, I was clueless, and because the major cause of COPD is cigarette smoking, most people who have it tend to be ashamed. They hide their disease. Considering that COPD is the 3rd largest killer in North America after cancer and heart disease, you would think that you would know more people with it.
Shortly after my diagnosis, I had a sudden cardiac arrest that landed me in ICU for over a month. Initially placed into a medically induced coma and on a ventilator, I was weaned off to face the first of many struggles to get myself back to where I began.
My teaching experience
Having been in the education field for many years, I knew enough to know what I didn’t know. I talked to everyone from the cleaners and nurses to the specialists and asked lots and lots of questions. I made the effort to listen hard to what they were saying. Hearing many opinions and then making my own mind up was always my way of learning.
Learning to write
I learned to write things in a book. I always have a book and a pen with me. The date goes at the top of the page, information follows. The only way to keep things straight and remember what was said is to write it in an organized manner. When I went to respiratory rehab, I learned the fine art of journaling. This is when I learned to communicate with my doctor.
My doctor's suggesions
I learned that doctors like to read the notes that the nurses write up for them. It's really what they are used to. So, I began writing my own notes just like the nurses did for me when I was in the hospital. I asked the doctor what I should track in my journal, and he suggested:
- Morning weight
- Weather Temperatures
- Borg or overall breathing
- Exercise, steps, and distance
- Sleep patterns
I began to track my days closely and I found that a pattern began to emerge. I learned that by tracking my days I could predict what triggers lead to my bad breathing days and what lead to my best breathing days. I began to realize that there were some things I could do to stave off flare-ups. I learned that I needed to take advantage of the good days and be willing to pamper myself on the bad days. I also learned when to use my action pack and when to wait.
I read all I could find on COPD and asked the community on Facebook groups what they knew. I listened and I listened hard. I did the best I could to make sense of what I learned and then I took the rest of my questions to my specialist.
He was impressed with the information that I presented to him. I flagged the days I wanted most to discuss with him and asked his advice on how to handle them.
Overall, I learned most of what I need to know about my COPD, and I remain very independent and proactive with my health care provider. He appreciates my daily journal and the information it provides him.
Do you live with any sleep disorders (eg. insomnia, RLS, sleep apnea) in addition to COPD?