What I Would Like Doctors to Know
When we are diagnosed with COPD, it can feel like receiving a swift blow to the head. We rarely see it coming and often don’t know what it means.
The information we are given to prepare for the future is often inadequate. It's not uncommon for us to be unsure of what to do next.
The importance of education when diagnosing
Education is the key, and diagnosis time is crucial for getting as much education and information as possible. We need a better understanding of what happens as our disease progresses and understanding of the things we can do to control it and gain a better understanding.
Most of us know nothing of lung disease. Doctors need to educate themselves on how to help us understand this diagnosis, and some should increase their bedside manner to teach us how to have a better attitude and understanding of this disease. We can only stop the stress and anxiety when we understand how to breathe and take that power away.
Exercise and pulmonary rehabilitation in lung disease management
Most of us stopped exercising long before we were diagnosed. It just becomes too hard on us and causes confusing shortness of breath.
We have no idea the damage our sedentary lives are causing us. Most of us try to push harder and longer to no avail and then give up. That was what caused my heart failure.
Learning how to exercise is crucial to our success, and having access to pulmonary rehabilitation is the missing step. Having virtual online exercise groups eliminates the worry over germs and colds. This is where we will learn how far to push and when to stop and catch our breath.
Having an action plan
We are entitled to always have an action plan on hand and in our possession when we go to the doctor. Most doctors know it is the gold standard, but some don’t agree and withhold access to the very drugs that can help us.
However, while an action plan is a great idea, it serves no purpose if people are confused about when and how to act. Again, we need education and understanding to avoid jumping in too fast or waiting too long.
Maximizing available resources
Having an HMO means more resources in one area. Our providers must thoroughly understand COPD; this can only happen if they are dedicated to lung health resources.
The more people on our team, the more understanding to help us. Having a telemed system set up gives us better and increased resources. There is a more likely chance that we can contact a knowledgeable person sooner.
Doctors have a vast knowledge and understanding of our disease that we will never have. They can make judgments quickly based on the information that nurses chart.
We need to be taught to journal our symptoms daily, weekly, and monthly. Keeping track will give us a better understanding of our symptoms' ups and downs and a fighting chance to overcome them.
Is there any information that you wish your doctor would share more of? Please share in the comments below.
Editor’s Note: We are extremely saddened to say that on January 7th, 2024, Barbara Moore passed away. Barbara’s advocacy efforts and writing continue to reach many. She will be deeply missed.
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