Reflecting on My COPD Journey

It’s been a little over two years since I first started to write for our online health community.

The first article that I did was on rare diseases. With Alpha-1 being a rare disease and February 29 being Rare Disease Day, I made that my first article.

Now, with it being November, I figured I would write about Alpha-1 Awareness Month again. November is also COPD Awareness Month as well.

My diagnosis journey

One of the reasons that I have COPD is because of having Alpha-1. There is no cure for Alpha-1, but some symptoms can be managed with treatment.

Here is a little about my Alpha-1 journey.

They diagnosed me in June 2010 after many years of being short of breath, and many bouts with bronchitis, asthma (so I thought), colds, cases of flu, sinus infections, etc. Over the years, I had been sick many times, and I did smoke, so before they diagnosed me, I thought for sure that they were going to tell me that I had lung cancer or COPD.

I had worked in the medical field for years as a CNA and had taken care of many people over the years who had had COPD but this seemed a little different, though. I was so young, at 39 with having symptoms even ten years earlier than thinking that it was from being overweight from being pregnant. I knew that normally, most people with COPD were older.

Seeking help

I stopped smoking in March of 2010 because of my breathing and then I continued to get worse. One night after clearing off the supper table I was wiping it down, and I was so short of breath that I had to sit down and catch my breath before I could continue on. I knew at that point that I needed to go to the doctor and asked to be referred to a pulmonologist.

At that appointment, my doctor asked me why I thought that I needed a lung doctor. I explained everything to her and she took me for a walk and my oxygen dropped very low.

At that time I didn’t realize how bad that was. She gave me a breathing treatment and proceeded to walk me again with no improvement. At that visit, my doctor made me the first available appointment with a local pulmonologist.

One of the first tests that the lung doctor performed was an Alpha-1 blood test that I was unaware of. She did some other tests and told me to come back in a couple of weeks for my results.

When the results came in I was speechless and shocked. I had never heard of Alpha-1 and had a lot to learn.

Thankful for stability

I have learned a lot over the years and have done a lot since my diagnosis, including becoming an Alpha-1 Support Group Leader and writing here for COPD.net. I’m not the best writer as I’m sure you can tell and did terribly in school but what you can get from my articles is my experience with my Alpha-1 and COPD journey and hope by sharing it I can help others as I was helped when I was first diagnosed.

As far as my health goes, I have had a few setbacks over the years with some lung infections, pneumonia a few times, other non-lung health issues, and of course the dreaded COVID. I am happy to say that despite things that some doctors have told me, I have stayed stable and have not lost any lung function over these past 13 years. I am so blessed.

For more information on some of the things that I do during COPD and Alpha-1 awareness month, you can read that in this article here.

Have they tested you for Alpha-1?

Do you have any questions or comments? Please feel free to share them in the comments below.