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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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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The COPD.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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