Habits of COPD “Veterans’”

I’ve had COPD for over 16 years. People call me a “COPD veteran,” but the truth is, I still learn something new almost every day.

When you first hear “you have COPD,” your world shifts. Mine sure did. I’ve gone through a lot of changes in how I think and feel. You might go through them too. Maybe you already have.

Moving from grief to acceptance

For me, it started with grief. Grief isn’t just for losing a person. You can grieve the life you had before COPD.

I think I lived in denial even before my diagnosis. I was short of breath. My lungs hurt. But I kept putting off the doctor. I didn’t want to know.

After I was diagnosed, anger hit fast. I was mad at myself for smoking all those years. I have a genetic form of COPD called Alpha-1 Antitrypsin Deficiency, plus damage from smoking. I was angry that I might pass Alpha-1 on to my kids and grandkids. I tried to bargain with God. I said, “Please, let this just be on me. Spare them.”

Then came depression. I used to work two jobs to help my family. When I couldn’t work anymore, I felt worthless. I was mourning my old life.

I didn’t stay in that dark place. I found people online who had COPD too. I went to education events. I asked questions. I learned. I became an advocate and a support group leader. The more I helped others, the more I started to accept my COPD.

I’m not scared anymore. I’m empowered. Do bad thoughts still creep in? Sure. I let myself have a “pity party” for one day. Then I get up the next day and keep going. I keep learning. I keep fighting for myself and for others.

Acceptance is a good place to be.

I wish I had listened better

Before COPD, I worked as a CNA for over 20 years. I worked in nursing homes, hospitals, and home care. I took care of many patients with COPD. Many were on oxygen. I thought I knew everything about it.

I was wrong.

When the oxygen company came to my house, they gave me a lot of instructions. Do this. Don’t do that. I just nodded my head. In my mind I thought, “I know, I know. I’ve done this for years.”

I wish I had paid attention. There was so much I didn’t know about using oxygen safely. Over the years, I’ve learned to listen more. Read more. Ask more questions.

3 Things that make living with COPD easier

1. Move Your Body

If I could tell a new COPD patient one thing, it would be this: exercise. Move as much as you can. When you move, your lungs move. That is the best medicine for them.

When I was first diagnosed, the doctor told me to exercise. I thought, “Exercise? I can’t walk 10 feet some days!” I didn’t take it seriously for about 5 to 8 years. I wish I had. I wonder how much stronger I would have been.

I learned from Noah Greenspan, a COPD expert, that you can start small. Walk for 30 seconds. Rest. Walk 30 seconds more. Do that a few times a day. Add a little more each day. I have recently added strength training. I can’t believe the difference that has made.

Exercise didn’t improve my lung function numbers. But it did improve my exercise tolerance. I can do more now, and for longer. I can play with my grandkids. I can go to the store. Keep moving!

2. Be Prepared

With COPD, you have to plan ahead. Be ready for anything.

• For Travel: Keep a bag packed. It doesn’t matter if it’s a 20-minute trip to the store or a week-long vacation. Pack your meds, extra oxygen, inhalers, and a list of your doctors. You never know when you might end up in the hospital.
• For Bad Weather: Power goes out. Storms happen. Keep extras in each room. Think batteries, flashlights, bottled water, snacks, and backup inhalers. If you use a concentrator, ask your oxygen company about a backup tank.
• For Emergencies: I don’t remember phone numbers like I used to. Write them down. Keep a list of emergency contacts, family, doctors, and your pharmacy. Put it on your fridge. Put it in your wallet. Put it in your phone.

Find Your Support People

You don’t have to do this alone. I found friends online who understood what I was going through. I met another Alpha, and we started a support group. Talking to others helped me accept my COPD. Teaching others helped me feel strong again. COPD is hard. But you can still have a good life. Learn everything you can. Ask questions. Move your body. Be prepared. Find your people.

I still have bad days. But I have more good days now. I’m living my life — not just surviving it.

And you can too.