Some of Our First Thoughts

My mother was diagnosed with Chronic Obstructive Pulmonary Disease in 1997. We knew very little about the disease then, and honestly, medicine has come a long way since then as well. One of my first thoughts was that it would be something like asthma or the bronchitis that she had so much. I did not think that it would be a disease that would create such a difficult life, as it does.

I began to research the stages of COPD. It became overwhelming very quickly. I spent countless sleepless nights at the computer, reading forums and the few websites that were available then.

Some of the people spoke of having a transplant. Some talked about the depression that they were facing. Everyone talked about being short of breath. Few people talked about living through it. The common thread was grim outcomes with many people giving in to fear, not leaving their homes and counting the days to the next SOB (shortness of breath) episode.

After about a year of doing this off and on, I decided that it was time to shut down the computer and create life around my mom. She did not search the internet during the early stages, so she really stayed in the dark for a long time. I asked her how much she wanted to know, and for the most part, she did not want very much information. I respected her wishes. However, I took every chance that I could to encourage her.

Mom’s first thoughts were very similar. She felt that it was not any worse than any of the other health problems that she had. She had worked through so many other things that she felt that she could find a way to win. In some ways, it was as if she were in denial.

Something that she did not fully understand was that, short of a miracle, this disease would take over her life. There was no cure. She did not see that it would become the reason that other problems would develop, and it would become the core of most decisions, in the end stage. It would decide where she would go, how much she would eat, how well she would sleep, whether or not she could blow out birthday candles and many other normal life situations. These are the things that we would all learn to think about.

I asked mom early on if she would consider a transplant. In the early years, she continually refused, and I backed off. Mom had had two very intense surgeries in her life already that included opening her up as much as a transplant surgery would involve. She knew how difficult it would be, so she did not want to entertain the thought of another surgery so intense. (Later she would change her mind.) The point is that we really didn’t have a grasp on the severity of this disease in the early stages.

Even though you are reading this (and many other articles), and you are soaking it all in, it will be different than you think. Many factors are at play. Obviously everyone’s journey is different. We all have a different combination of strengths and weaknesses that define how our bodies will react and how we will deal with the unknown, but if there is anything that I hope you take from this article, it is this: Cherish every day. Each stage is difficult. Your body is constantly adjusting, and in each stage you will find normal as it fits you. Know what you can do, and push it to the limit. Never, ever quit.