Many of us like to educate ourselves on a range of subjects so we can become better informed on our chosen topic. When you are diagnosed with chronic obstructive pulmonary disease (COPD), you undergo a steep learning curve – especially if you haven’t heard of this disease before.
Being COPD educated is vital if you want to live well with this disease. In this article, I’ll summarize my experience and what I’ve learned since being diagnosed with COPD.
What Is COPD?
COPD is a disease that affects patients in a variety of ways but has a common theme of severe shortness of breath. COPD is an umbrella term for progressive lung diseases, including emphysema, chronic bronchitis, and refractory (non-reversible) asthma.
COPD is a progressive disease that has no cure. In the past, many believed it was a terminal disease. However, advances in medication, therapies, and lifestyle changes have allowed some patients to lead fulfilling lives. While researchers are still learning about COPD, we now have enough information available to learn how to improve our quality of life.
Why Do We Need COPD Education?
How you manage your COPD is a very individual choice. Some patients like to leave everything up to their healthcare professionals and take advice on managing their disease at their regular check-ups. Personally, I’ve always liked to be proactive when it comes to managing my disease.
Part of being proactive is being educated about my COPD. I have always had the belief the more you know about your disease, the better you will be at managing it. That’s not to say I don’t rely on my healthcare professionals because I absolutely do. I use their knowledge to make sure that the strategies I use are going to be beneficial and not detrimental to my health.
Your COPD education crosses many topics which include correct inhaler technique, breathing techniques, oxygen therapy, exercise, and nutrition. Each of these topics requires in-depth knowledge so you can become an expert on how they can be most effective for you.
While your own education is very important, it is also important to educate your loved ones. The people who spend the most time with you need to be a part of your support network and need to know how your disease affects you. Your loved ones also need to know what to do when you’re not at your best and need their support. Their education could one day be the difference between life and death for you.
We know there are ways to improve our quality of life, and the amount of improvement will depend on the stage in which we were diagnosed. How you manage your disease is up to you, but taking the time to become educated about your COPD will arm you to make the best choices for you.
My COPD Education
Like many patients, when I was diagnosed with COPD, it hit my family and me hard. I was 45, and my prognosis wasn’t great. All I could think of is not seeing my kids grow up and not enjoying a long life with my wife. I decided early on in my COPD journey, and I was going to fight this disease.
In the early days, it was all about taking my medication and exercise. I was determined not to have the quality of life DR Google had determined I was to have. As time went on, I become obsessed with reading as much as I could about my disease. The more I read, the more educated I become. I started finding information about my disease, which had been long forgotten by the medical profession.
As I went through this process, I would constantly contact my respiratory doctor about a new strategy I had read about and whether it would help me. Sometimes my doctor would be supportive, and sometimes he would tell me, “that is not a good idea.”
Over the years, my many hours of reading, asking questions, and attending respiratory conferences lead me to write an article for the European Medical Journal. This article was my blueprint for managing my COPD. My four pillars of living well with COPD are knowledge, medication, nutrition, and exercise.
My four pillars strategy is the reason I have such a great quality of life with severe COPD. It has allowed me to complete Ironman and marathon events around the world with very low lung function. Nowadays, I have to use oxygen to compete in these events, but my continuing education has taught me how to do this.
The Beneficiaries of My Education
The major beneficiary of my COPD education has been me. However, my family and friends have also enjoyed the benefits. With my wife by my side, I have been able to watch my kids grow up, marry, and give me my first grandchild. My wife and children have also joined me in running, triathlons, and cycling events.
I have been able to celebrate special occasions with family and friends while giving them all a little inspiration on the way. I still have the ability to lend people support – both physical and mentally. My spare time is dedicated to COPD advocacy, raising awareness, and funds for lung disease.
When I look back at the choices, I made early in my diagnosis, and I am so happy I took the direction I did. My COPD education is far from complete, and it will always be a work in progress.
I’m not an expert in managing COPD. I’m an expert in managing my COPD. If you’re not already, why don’t you become an expert in managing yours?