The New Face of COPD: Eileen
Chances are, you or someone you know has COPD (Chronic Obstructive Pulmonary Disease), an umbrella term for emphysema and chronic bronchitis). COPD is a common disease, probably much more common than you think. In fact, over 12 million U.S. adults are estimated to have COPD. But even more alarming is evidence that close to 24 million people have impaired lung function, indicating a vast under diagnosis of COPD.
Interesting facts, yes, but when it comes right down to it, when you're the one who has COPD, it's not the millions who matter most. It's just you, and the people closest to you, who must live day-by-day, night-by-night, breath-by-breath with the challenge of COPD.
In honor of COPD Awareness Month, over the next two weeks, I'm going to introduce you to four people living with COPD. Come along with me and meet them, and when you do, I think you'll be surprised that your idea of what COPD is - what you believe it looks like and what you think it has to be - isn't necessarily so.
Join me now, and meet Eileen, Tim, Dee, and Ken, and hear for yourself how we talk about living - not dying - with COPD. Learn how COPD is no longer a death sentence; and why it doesn't have to be about isolation and illness, but being part of community and living well. This is what living with COPD should be all about. Meet the new face of COPD.
Location: Greenfield, Massachusetts
Occupation: Licensed Practical Nurse, then Registered Nurse for 32 years. I have worked in various venues, from hospital nursing to home care nursing to long-term care facility nursing. I am certified in Geriatrics.
When were you diagnosed?
I was diagnosed in the winter of 1998 after the sudden onset of respiratory failure. I wound up in the hospital on a ventilator. It was there that I was first seen by a pulmonologist who came into my room and told me, "You do not have asthma. You have COPD and it is very severe. This will never happen again if you quit smoking." I don't remember anything else he said that day.
What was your reaction to the diagnosis?
First, it was anger because I had always been told I had asthma and I had never been tested by spirometry (lung function test). Because of my background in nursing, I didn't want to be a "lunger" like so many I had taken care of.
Then, it was fear because I had seen some pretty awful deaths due to lung diseases.
After that, it was denial. I had returned home and back to work, I was feeling good (I'm sure partly because of the steroids I had been given) and I didn't have time for being sick! I also didn't want to quit smoking and figured that if I admitted I had such bad lung disease, I would have to quit. I was too busy working to allow an illness to overtake my life. I did quit smoking for a few weeks but went back to it.
What was the reaction of your family and friends?
They were very concerned and afraid that I would die. I didn't tell too many friends, afraid that they would judge me. My daughter was very scared - she was 16 at the time. She begged me to quit smoking.
What is life like for you today?
I still have low endurance and fatigue (following a fractured shoulder and hip and months of inactivity) but not on the level that I did before I finally surrendered and got honest with everyone. Pulmonary rehab, good medical care, support, education and quitting smoking all helped to make this happen. It still takes me a while to get ready to go anywhere but with planning and pacing, I am able to do things better and smarter.
I used to be able to shop and walk through a mall without any problem. Now short trips to stores where I can pick something up and carry one or two bags is my limit. I used to work full time and now I do better just part time. I can no longer go places where there are a lot of people for fear of catching something that could affect my health, which means I miss some weddings and gatherings. I used to be able to dance but now I just sway (smile).
How is your health now, compared to when you were first diagnosed?
It is definitely better. I have learned so much about breathing and coping and ways to make my life better and easier. My blood pressure is under control, I eat better and am losing weight. Overall my health is good with the exception of my lungs. My last PFT (pulmonary function test) showed only a minimal decrease (FEV1 from 29% to 26%) in the past 10 years.
Do you use supplemental oxygen?
I use 2L at rest and 4L with activity.
Do you take inhaled medications?
Yes. Advair, Spiriva and Albuterol.
Do you exercise regularly?
My usual routine is to go to a Pulmonary Rehab maintenance class twice a week. After a recent fall, I try to do at least 30 minutes of exercises at home 4 -5 times a week and will continue that until I'm able to go back to rehab.
What has been most surprising in your journey with COPD?
That life is still rewarding despite my limitations. I have found a job teaching that I never would have thought of had I not had COPD. I also help others with support and information through the BreathingBetterLivingWell website. I am also surprised that I am able to accept help from other people and be gracious about it.
What has helped the most?
Finding that I can still give back and feel my life is meaningful, even with this.
If you had to give one piece of advice to somebody with COPD, what would it be?
Don't give up because life can still be good with a diagnosis of COPD; it's not a death sentence.
Do you have a personal philosophy?
I believe that keeping a positive attitude has helped me to overcome most challenges that I have had. Instead of dwelling on negatives, I will find positives even if I have to search deep some days. Things will never improve with a negative attitude.
I have always been fairly spiritual, and that helps me to keep things in focus. I know I'm not on this path alone and He will help me if I ask. It also helps to share with others what's going on with me and when I do that, I know I am not the only one dealing with chronic illness.
Being honest with myself, and knowing that there will be good days and bad days, I can get through the bad ones by looking forward to the better ones. And today I know for sure that it can always be worse!
Coming soon, the second profile in this series...
Jane M. Martin is the Director of BreathingBetterLivingWell.com