Pat Dooley in his country setting

Easy Rider Ain't So Easy

I am a 50 year old man, diagnosed with COPD - severe emphysema, chronic bronchitis and a moderate asthmatic component. I started smoking when I was about 14 years old. In October of '85, I started slowing down, very short of breath and major fatigue but seemingly baffling to doctors as they were not able to give me a diagnosis.  In February of '92 I was admitted to the hospital with sats of 47% and discharged 6 days later with oxygen 24/7 at 3 liters per minute, theodure, prednisone (90 mgs), Pepsid, Provental and Atrovent. I also used this hospital stay to quit smoking, and managed to be weaned off the prednisone, theodure and oxygen in about a month. Back in the Hospital again in July of '94 for a hip replacement, which proved a major turning point. I was introduced to "chair aerobics" for 6 months and then entered Pulmonary Rehab where I learned a lot from those folks, taking control of my own destiny and doing something for myself once given the information and the tools.
 

Pat Dooley and His Lady

In late 1994 I got to know someone in Better Breathers who I ended up being very close to until she died of end stage emphysema with a CO2 induced coma. We formed a Well Spouse Support Group in her honor that I co-chaired for two years until my energy level dropped to the point where I was unable to continue.  Because of my lack of diagnosis in the beginning,  I had an almost 10 year wait for SSDI which forced me to change my lifestyle completely, sell my home and live in a small cabin in Oregon, which I must admit I truly enjoy. In '98 when I first joined the COPD list, I was pretty despondent and some of the COPD List  folks suggested I look into anti-depressants. I did and it has made a tremendous difference. In Feb. of 99 I had a bad time with the flu and ended up on oxygen. In June my pulmonary doctor recommended that I go on oxygen full time. This was a shock even though I had been using oxygen at night with the Bi-pap and it had made a tremendous difference. Getting restful sleep overnight is essential to having energy for the day. Using the oxygen full time sure has been an adjustment, but I am now getting used to it. My friends say I have more energy, but the biggest improvement I have seen is the episodes of the pounding of my heart has decreased dramatically. There is something to say for oxygen therapy.

What a long, strange trip it's been! The past l4 years (and still counting) certainly has been a learning experience. I must say that after getting the diagnoses of COPD/severe emphysema, I know that this probably should have been diagnosed back  in October of 1985. I feel a certain amount of anger and resentment towards the medical community for not catching it. I knew there had to be a medical explanation and yet I was made to feel that this was "all in my head" for all those years  However, I have to be honest and ask myself, if they had diagnosed it way back when, would that have been the kick in the pants to quit smoking? To be honest, I sincerely doubt it! It took what happened in '92 to get so sick, sick enough to be hospitalized for me to finally get the message Perhaps too little too late, but enough warning for me to start to make a difference in my life. It was time to make some positive choices in my life. I think when one gets diagnosed with a chronic illness, it's just too easy to sit back and expect the doctors to diagnose and cure. The truth is we need to be responsible for our own fate and take control of our own destiny. To learn as much as we can and take that information and use it for our own benefit. Life is not over until you are dead and buried. In the meantime, live life to the fullest. Get out there and enjoy the sunrises and sunsets. Take some time to smell the roses. Life is too short to be looking down at your own feet. Look up and enjoy your surroundings. I want you to know I am doing well. I drive a motorcycle and carry my portable oxygen on my back with a spare tank and a nebulizer in the trunk. I may have slowed down considerably but I still enjoy it. There is a saying I picked up while in Pulmonary Rehab - "Test the limits, push the boundaries"  I have a few sayings that I have posted on my refrigerator: Accept: Acceptance is the first and hardest, but it is achievable. Adapt,  Adjust and Overcome.

Pat Dooley
September 1999

    Pat Dooley passed away March 27th, 2008