2012 was full of waiting... Waiting to get into the new Pulmonologist. Waiting to get into pulmonary rehab. Waiting for my insurance o cover nicotine patches. Waiting to get results from my Alpha-1 test. Waiting just to wait more. Last year, I filed for social security disability. WAITING to hear from them. Waiting and wanting this to all go away.
Nothing eventful happened, just more appointments, some medication changes. I feel like I am cheating on the readers of this post! There was just a lot of waiting. Of course, I sat down and googled COPD. I watched videos about COPD. I joined many online support groups, and learned each persons COPD journey is very different, yet very similar as well. There is not clear setting or situation with COPD. There is no definitive reason one gets COPD. Sure, the majority are or were smokers. Although pretty rare in my experience, Alpha-1 is a genetic defect that causes COPD. There are people that are not Alpha-1 and never smoked and have no heavy environmental exposure that could cause it.
This disease is perplexing. There are more people with it at and older ages than myself, being 41, most into their 60's and older. A very rare few are younger than myself. Mostly younger women, in their 20's... Mostly? All of about 2 or 3 out of hundreds of people in the groups I belong too. The way COPD presents in people is varied, the way it decreases ones ability varies a little. I have found that most people breathe better in warm, humid air... Mine lungs would rather be breathing icy cold, dry air. Some, have a very low oxygen level that means they have to be on oxygen at all times. Others, need oxygen only for sleeping, like myself. Some, use it only when exercising. My FEV1 level is low, but my oxygen stays pretty high unless I am sick with a respiratory infection.
There needs to be much more research on this disease, and illnesses it encompasses. I hope you will support group efforts and donate when you see the opportunity.