I'm Still Here After 13 Years Battling COPD and Alpha-1
It's been over 13 years since I was first diagnosed with COPD. I wasn't just diagnosed with COPD that day, but also with Alpha-1 Antitrypsin Deficiency (Alpha-1).
Alpha-1 is a genetic condition that can cause damage to the lungs and/or the liver. There is no cure for Alpha-1, but some symptoms can be managed with treatment. You can find more information about Alpha-1 in this article.
Emotions and uncertainty
13 years ago, I was told by one of my doctors that I probably wouldn't be here or that I would get a transplant within two years. A lot has happened over those years.
I have been through so many emotions: feeling scared, angry, thankful, blessed, confused, grateful. Those emotions ebb and flow, just like my days with COPD.
When my doctor told me about the Alpha-1, I had my 10-year-old son with me. I remember wondering if I be scared. I didn't know if I should be scared. I didn't want my son to be worried.
Here I was at 39 years old. I had a 21-year-old son who had just moved out and started his own life, but I had an 18-year-old daughter who was getting ready to graduate, and I had my 10-year-old.
I had things to do. Plan a graduation party, finish raising my kids, plan my daughter's freshman year of college, the birthdays, graduations, and weddings.
Would I make any of them? I had no clue.
Setting goals
In the beginning, all I wanted to do was learn all I could and do anything that I could to help myself be healthier. Then, I made my first goal. My first goal was to live long enough to see my youngest graduate.
I had been there so far for my oldest two and wanted to make it to graduation for my youngest at least. Of course, I wanted to do all the things that may come in between that, including birthdays, grandchildren, weddings, and many more events that I was thankful to make, but that graduation was my main goal that I made.
I wanted to share a bit of that history with you all before I shared I had my PFT last week. Because of Covid-19, it has been a few years since I have had one. They suggest Alpha-1 patients get one every year.
I thought for sure that I had lost some lung function because I had been struggling a bit the last couple of months with my breathing. I seemed to be short of breath and unable to do as much as I could normally.
Celebrating stability
I am so proud and excited to say that I have not lost any lung function in the past 13 years. I have put on some weight since my parathyroid surgery in January, and I think this is why I have been short of breath.
I am going to make my diet more of a priority to get that weight off because I know what a difference that can make. I saw that when I lost nearly 50 lbs a few years ago. It just goes to show you how important diet and exercise is for us.
I feel so thankful and blessed to still be here. I have lost so many Alpha-1/COPD friends or many who have had transplants. I often wonder why I am still here and have stayed stable all of these years, and many have not.
Yes, I have had pneumonia a few times, a few lung infections, and a few other health issues, but I am so thankful to still be where I am at. It may sound funny to others, but I would be happy to stay at this point for the rest of my life.
I still have hard times and have used oxygen for almost 13 years now, but for the most, I'm still able to get out and about. I still struggle daily with certain tasks, but I will continue to do as much as I can for as long as I can.
Advocating for awareness
I will also continue to advocate and spread awareness for Alpha-1 and COPD. I am happy to say that I got to watch my youngest son graduate, witness my two oldest get married, and have enjoyed having five grandchildren join our family.
I have added many goals to that list now. There are too many to name, but a few are to watch all of my grandkids graduate, get married, and have my great-grandchildren. I am so blessed.
Have you received a prognosis from a doctor that turned out to be incorrect, or would you like to update us on your current status? Please share in the comments below.
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