Knew It Was Likely, But Thought I'd Have More Time!

Last updated: October 2017

I knew I was likely to be diagnosed with COPD because I had smoked as many as 3 packs a day for 30 years and everyone I knew and was around smoked as well. I did quit smoking in 1994 because they began to taste bad to me. Also, my mother was diagnosed with COPD at the age of 68 and died from it at 72. I am almost 69 and was diagnosed with mild/moderate COPD 2 years ago, however, unlike many of you who have shared your stories here, I was put on O2 immediately because when I went to see my primary care physician because I 'just didn't feel good', my O2 levels were in the 70s. I wasn't allowed to go home until they had arranged for me to get oxygen at home that day.

I was also diagnosed with Pulmonary Hypertension which I have as a result of my COPD. I started at 4 liters of O2, continuous flow but, when I started pulmonary rehabilitation, the therapists told me that I needed to be on 6 liters continuos whenever I am walking. My oxygen levels drop to 80-85 while walking, partly because I have to make a real effort to remember to breathe in through my nose and out through my mouth and not talk, which I like to do!

After a right heart catheterization, I was put on Letairis (generic name ambrisentan) for my Pulmonary Hypertension. After about 8 months on the Letairis, I was really feeling bad again, I couldn't even walk from my kitchen to the bathroom without having to stop to catch my breath. I tried to get into see my pulmonologist, but couldn't, so I made an appointment with my primary care physician who did an EKG to make sure I wasn't having a heart attack and told my husband to take me directly to the emergency room at the nearby hospital. After many tests it was determined that I was extremely anemic. I was admitted to the hospital for further tests to determine the cause of the anemia. I was given 3 units of blood and underwent a colonoscopy and endoscopy and more blood work. I was also put on steroids. After no obvious cause could be found for the anemia, a mention was made that my hemoglobin had been steadily dropping since the beginning of the year. My husband pointed out that that coincided with the beginning of my use of Letairis. The doctor initially thought it was an unlikely cause but my husband pursued it with the supplier and one of my nurses also questioned the hospital pharmacist. It turned out that the Letairis can cause anemia, so I was told to quit taking it immediately and I began taking an iron supplement twice a day.

I am now feeling better than I have in a very long time. Between feeling so much better and finding this website, I am feeling more hopeful than I have for a while! I am now able to get by on 5 liters of oxygen on demand when walking and I also use a scooter any time there will be more than a short walk, such as when shopping. Life is good!

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