Feelings

IT always helps to vent! If you or your caregiver would like to write about how you really feel about any aspect of chronic lung disease, we will credit you with a year’s membership. Please send to: The Pulmonary Paper, PO Box 877, Ormond Beach, FL 32175.

Robert and Peg Riley of Ohio want to share their secrets of living with COPD. Bob says, “At first, I thought everything I loved was over. Then I decided I would set small goals and increase them a little every day. I realized the more I sat, the sooner I would become an invalid. I was never going to let the illness define me or my life. I was not going to just deal with the disease and survive.” In 1998, Robert’s physician told Peg if she wanted to have their dream of traveling the US come true, she should quit her job and get started. The couple visited the entire continental US, Alaska, all the Canadian provinces plus two trips to Mexico. “We enjoy an active retirement, living a life affected, but not controlled by my COPD.

Health professionals treat COPD, but it is the patient who must manage it!” commented Bob.

Peg writes, “As a COPD caregiver, one must adapt to the various physical (air conditioning so low I need a coat), emotional (short tempered, particularly when on Prednisone) and environmental (cooking different foods causes him breathing problems) needs and limitations. You must leave functions early or never get there in the first place. You must remain calm and reassuring at all times. You may feel like you are providing support, they may think you are nagging. You may feel isolated and under-appreciated. You should focus on what you can do with the person; not what they can no longer do. Be aware that the complexity of medicine requires additional support. The person with COPD must accept and respect that you are their advocate. Carry an updated medical history. Go along on office visits. Have names, addresses and phone numbers of doctors, therapists, pharmacists and your insurance card. Keep a list of current medications and know why each one is being given. Don’t be afraid to ask health care personnel if they have washed their hands! Physicians of today recognize that having another pair of ears and indeed another mouth can make a difference!

I have Alpha-1 antitrypsin genetic COPD. I am on oxygen 24/7. I have also been on the transplant list since 2003. I cope with COPD by staying positive and working out three days a week and never giving up! Faith in the Lord and a strong wife by my side keep me going. Knowing God is with me through these challenges, I’ll never give up!

James Rader