Things I've Learned Living With a COPD Diagnosis

My diagnosis is mild COPD. However, in 2007, I was diagnosed as Stage 3; they said I likely have 5 years to live. At that time, we discussed disability, pursed lip breathing, and medications. That was a lot to take in and bewildering.

Over time, I have had my spirometry tests, six-minute walk test, night oximetry, CT scans, and all the normal tests. I have these done about every 6 months, depending on my results, how I do day to day, and how often I get sick. How strange it seems to start poorly and now to be tested the last few times at the Mayo, with the last appointment at 81% and Stage 1.

Contending with more than COPD

My comorbid conditions include: Asthma, Pulmonary Hypertension, GERD, Barrette’s Esophagus, sleep apnea, severe allergies, sinus infections, osteoarthritis with numerous surgeries, fibromyalgia, constant pain, cataracts removed from both eyes, hypoxemia, potassium, chronic fatigue, confusion, depression, fuzzy vision when O2 is low, decreased oxygen at night, gastritis, obesity, dizziness, falling, edema, dry mouth raspy voice, hoarseness and frequent yeast infections. Vocal cord dysfunction and reactive airway disease. Also periodic bronchitis and/or pneumonia. These health conditions I call a domino effect and with such associations of diseases, it’s difficult to separate the health issues at times. Kind of like “The knee bone’s connected to the leg bone”.

Learning to manage my COPD in all ways

To treat my COPD, I take Spiriva, Singulair, Mucinex, Oxygen, Pro-Air, and Albuterol. I quit Advair because of constant yeast infections.

My biggest COPD trigger is allergies. My doctors have said that allergies are a big contributor to my COPD exacerbations, and that dust is a major factor.

My most challenging COPD symptoms are dizziness, falling, confusion, shortness of breath and dysfunction. In actuality, it’s trying to figure out what's causing my symptoms. As I tell my healthcare team, it seems to be easier to exclude what is okay than pick out what is wrong.

The most frustrating part about having COPD is accepting that there are limitations, that things that have been so important have to be given up. Also, people's attitudes when I have to say sorry I won’t be able to come. Sometimes too, leaving the doctor’s office feeling empty, like nothing was accomplished, and like the doctor wasn’t able to make sense of what’s going on. Every doc I have seen says that I am complicated because there are too many health issues all the time.

What have I learned since being diagnosed?

• Going out can be scary. Finding a place where I can lie down if I’m not home, wishing I were in a place where I have oxygen available if I’m away from home and can get my breathing under control, and being able to get to a safe place or off the floor if I have dizziness.
• One thing I took for granted before my diagnosis is thinking that I was infallible, nothing could happen to me. That I could be active in the lives and events of my family, active working ambulance, active hunting, fishing, hiking, and camping. That I could feel whole.
• When I tell someone I have COPD, the response is usually "Do you smoke?" "If you have COPD, why don’t you have oxygen?" Not everyone's COPD is the same, whether that be what caused it or how they treat it.
• When someone tells me they have COPD, I think it’s important they know that they aren’t alone, so I make sure they have my contact information. We will visit about it if they want to do so at that time and if I have time as well.
• My best coping tools are pursed lip breathing, oxygen, water to drink, inhaler, and nebulizer. Sitting or standing with my back and neck stretched, where it seems to open up my airway, adjust my diaphragm, and helps me to relax emotionally as well as physically.
• I find comfort in quiet time. When my hubby is home, with my Shih Tzus, watching reruns and my adjustable bed. (I did get an ok from my allergist before getting the first dog and now have three).
• I'm often asked how to help during a flare. Something kind someone can do for me during a COPD attack is help me to a better and quieter place, get me a glass of room temperature water, and encourage others, especially children, to go into another room. Most of the time, a gentle back rub feels good (unless I have spasms).
• COPD has taught me to “never take anything for granted” and “never say never”.
• If I could go back to the early days of my diagnosis, I would tell myself to live, to enjoy, and to grab all the quality time with family that I can.
• The thing I most wish people understood about COPD is that it isn’t going to go away. That no one has a crystal ball, so no one, including the doctor, knows how long a person has to live. It’s important to take care of self, stay away from smoke, exercise, live to the best of your ability.
• One more thing I’d like to say about life with COPD is don’t throw your day away worrying about when you will die, thinking that this is a death sentence. It isn’t a death sentence, because no one knows when something will happen. We don’t know what our future holds, and worrying about this strips us of our days.