Monday, October 14, 2013

Who's Talking COPD Here?

Nothing makes an impression like a death sentence. When I heard the words, “You have Chronic Obstructive Pulmonary Disease (COPD),” and was handed a pamphlet to explain what that meant, I couldn’t believe it. I was complaining to my doctor because I had quit smoking and I wasn’t feeling much better than before I quit. I had quit coughing, and hacking up phlegm daily, but that was the only benefit I could see. I was still short of breath with any exertion; still got bronchitis and was sick on the couch for days with predictable regularity.  

“But,” I had explained: “I saw a chart! 20 minutes after you quit smoking your blood pressure returns to normal and twenty days later you can taste food again and twenty months later you have reduced your chances of heart attack and stroke by 50 percent, and twenty years later…” I had friends for whom this scenario was playing out in just that fashion. But not me. With COPD, all bets are off.  I was not going to get better. I was pretty sure I wouldn’t live anywhere near twenty years after this diagnosis.

My GP had broken the news to me and suggested I see a specialist. He had prescribed a Combivent inhaler for me with instructions to use it as much as four times a day, as needed.  This was when I quit smoking in 2005, about two years before I finally saw a specialist.  Chasing the story was out of the question any more so I had had to give up working as a journalist; then, two years later I couldn’t keep up as the executive director of a local arts council, either.  I was just 55, unemployable and in trouble.

I qualified for Social Security Disability in December 2007 with the benefit of an Ohio Medicaid spend-down so I finally could be treated by a pulmonary specialist  beginning in  February, 2008. That is the way it played out for me. Once I was out of work, I found out real quick that medical treatment is not really an option if you have no financial assistance through an insurance company or the state. It was the quest for medical assistance  because I had lost my insurance with my employment, that led me to Social Security Disability, Ohio Medicaid and two years later, Medicare. I will be forever grateful.

Diseases are often discussed in numerical values. In COPD, breathing out is measured; how much air you exhale, how fast you do it, how much air your lungs retain after you exhale and most importantly, perhaps, how much oxygen is in your blood at any given moment. I had dismal numbers when I had my first pulmonary function test before meeting with a Pulmonologist in February, 2008. My FEV1% (forced expiration volume as a percentage of normal during the first second) was about 23 percent of what was expected for my age, height and weight. That indicates really, really severe breathing impairment. There were other numerical indications of the severity of my condition, as well. And I simply couldn’t breathe when I did anything. I had to sit and breathe quietly to ease panic many times a day. I was scared all the time.

My pulmonary doctor gave me the right medications and after a sleep study, ordered O2 at night to keep my oxygen levels normal while I sleep. He also suggested I talk to the pulmonary experts at Ohio State University about surgery. I was dismayed but I was willing to do anything, even have surgery, to push back that death sentence. 

I began participating in the pulmonary rehabilitation program at St. Rita’s Medical Center in Lima, Ohio, also on the recommendation of my pulmonary doc.  By June, 2008, my FEV1% had improved to 27 percent during the testing at OSU and I could go a little farther during my six minute walk (another test). I was told I could wait and see about LVRS surgery. The improvement was due to getting the right medication and in no small part to the exercise and education I received by going to pulmonary rehab.  PR is a great program. Technicians are always present while we work out to encourage us and check our vital signs regularly, so we can push ourselves as hard as they want us to with no worries. 

Walking on a treadmill, using an exercise bike and lifting weights, as well as stair-step exercises were prescribed for me.  We took it slow, at first. I began with stretches and five minutes on a treadmill. I went to the hospital gym two days a week to begin with and then three days. As well as building my strength to exercise more and more, I was given instruction in how to breathe to reduce SOB (shortness of breath) and how to live better with COPD. That information included important dietary tips, suggestions to get around depression, ways to live more easily with reduced lung function, and how to avoid the bronchial infections that cause COPD to get worse quick.

I ended up graduating from the rehab program, and Medicaid quit paying for my exercise at the hospital, but I continued to work out there on my own dime.  It gives me more stamina, and more confidence when I am working to stay strong, pace myself, and breathe correctly.  Today, five years later, I still participate in a PR program; now at Firelands Hospital in Sandusky, OH, where I moved a couple of years ago. I have topped out with an FEV1 %  around 35 percent and holding. I don’t want to give the impression that one can keep improving indefinitely or  be cured of COPD. At this time there is no cure. But management is key to living as well as possible with this disease. I sought out the PR program in my new town, because there I can work out in the company of folks with similar stories (and abilities), and it’s a safe place to push myself.  The structure of going to a gym three days a week, keeps me honest about exercising.  It’s hard work to exercise when short of breath.  It’s easier to take a nap. The trainers in local gyms aimed at weight loss and physical training for athletes, probably don’t know much about COPD limitations and there will be no O2 available., or hospital staff in case of an emergency, God forbid. 

Earlier this year I was evaluated to take part in a clinical trial for a procedure that mimics LVRS without surgery. The company that makes the compound being tested eventually disqualified me because I didn’t retain quite enough air.   I was disappointed to be turned down for a procedure that I still believe might have made me feel better,  but it was inspiring to have such a comprehensive physical exam at the Cleveland Clinic and come out of it knowing I am holding my own through medication, education and exercise. 

Pulmonary Rehab has given me back a future.  Medication alone can’t make us stronger. Strong muscles use oxygen more efficiently. Everything we can do to give ourselves an edge, matters.  It becomes easier and easier to do less and less when one can’t breathe, and the situation spirals downward. Setting foot in a Pulmonary Rehab gym could be the step that turns YOUR spiral of increasing breathlessness and inactivity around.