A Journey With COPD

As stated in Springhouse patient teaching, Chronic Obstructive Pulmonary Disease is the second leading cause of disability in the United States. It is these patients that we, as nurses, see on a regular or semi-regular basis; and as one gentleman told me, he thought he should be getting “frequent flyer miles” for his medical visits. It is not a curable disease process, but thorough teaching can make a big difference in the quality of life of our patients.

I had taken care of one particular person, Ellen, and two other of her family members. In the early stages of her disease she was as always “bubbly and full of life.” She held down the tough position of being a waitress to help her family make ends meet, and even away from her job she stayed on the go.

Her mother had never smoked, her dad smoked but then quit for 10 years before he was diagnosed with cancer and passed. Ellen herself had started smoking at the age of 26. Her husband, Michael, had smoked but quit 10 years prior to being diagnosed with cancer. Not only did he smoke three packs per day but also worked in the coal mining industry. They sought help for his “black lung” but were turned down because of his heavy smoking history. I had also had the privilege of taking care of him…he was so kind. Ellen stopped smoking in 2014 but had already started showing signs of COPD.

She explained to me how lonely and tough life had been when Michael had passed. I saw her once and she looked like a “stick figure,” she had gotten so thin. She told me at that time they were doing cardiac studies because she had been having chest pain, pressure in her chest and shortness of breath. The doctors told her it was cardiac related, and although she suspected it was something more, she prayed it wasn’t COPD for her.

It was during this time that she met and married Robert. She introduced us, and you could see the great love they shared for each other through the “twinkle” in both of their eyes. She was fighting to keep her life as normal as possible; but let’s face it,  her and Robert’s life was not normal.

Ellen talked to me about her job and how hard it was to make it through a shift. I was shocked when she told me that she got up at 3 a.m. just so she could very slowly get ready for work and clock in by 7 a.m. Her whole life was being compromised, and she told me what a burden she felt on her family. Eventually she had to give up her job and accept that she could no longer work. “I was always the strong one, and it is so hard for me to let them take care of me.”

“You know,” she said, “you really take for granted being able to breathe. My life has become a roller coaster, and we can never really ever plan anything. One day I feel pretty good and the next I can barely get my breath. It’s hard to have someone help you get bathed, dressed and cook your meals…I am only in my early 50’s…look at me” as the tears started slipping down her face. “I’m doing all I can, but it still feels like that is not good enough. My oxygen that I used to use only at night is now 24 hours a day. It’s my “ball and chain, and everywhere I go I have to lug it with me. I do go to Pulmonary Rehab and that has helped.”

Curious, I asked Ellen to tell me what breathing felt like to her, and she gave me one of the best descriptions I have ever heard in my career. “It feels like someone has put a clothes pin on my nose and no air flowing there and also that someone has put a mask on my face and the only air I am getting is through a tiny little straw. You know, those little straws they use to stir coffee.” I couldn’t even imagine how difficult her life must be 24 hours a day.

Ellen has passed all tests and is waiting on the transplant list for two lungs. Even in this she is sad, “You know you’re waiting, and with that comes a certain amount of anxiety.  You wait for another person to die so you can benefit.”

Reader, if you do pray…..pray that she gets her lungs in time and they are a perfect match. Ellen wants to live!!!

written by Linda Dawson

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