Monday, August 27, 2012

Finding out about Alpha-1 antitrypsin deficiency

August 27th, 2012

Well, this is my first time with blogging. So, here we go.

I was getting really short of breath a lot. I didn't want to go to the doctor about it. I was quite sure they would tell me to quit smoking. I did so love to smoke. My shortness of breath kept getting worse. To the point that I had to stop halfway down the hall to catch my breath. Ugh. Finally Bob said we needed to know what was going on. He went with me (practically dragging me) to see my primary doctor. She did a few tests, added some more junk for me to take (Spiriva, on top of current medicines Advair and Albuterol) and set me up with a pulmonologist. So, a month later (June 26th) we go off to see the pulmonary specialist. I had very little clue about what to expect. I figured he would give me the pulmonary function tests, which he did. And I filled out a questionnaire regarding smoking and family history and other medical issues. I have to say that I really like this doctor's office. It's a one-doctor, one-nurse office. They are both personable people and put you at ease to start. Even in the waiting room the nurse, was joking with people and had us all laughing.

The pulmonologist looked me over - listened to my heart and lungs, felt my thyroid, checked my throat. Then I went into a room where the x-ray I had brought with me was hanging up. The letter that came with the x-ray said my lungs were hyperinflated, indicating some sort of issue. The pulomonologist said that my lungs did not look very hyperinflated to him. But his nurse would run some tests.

So the nurse came in and had me blow into a spirometer that was hooked up to a computer. The monitor had several candles on the screen and I was supposed to blow them out. Fun visual. And boy did I try to blow them out. Twice I tried. Then she had me inhale some Albuterol and try again. I was able to blow out a few more candles with the Albuterol. This indicated I have an asthma component to my shortness of breath.

Back in came the doctor. He showed me a chart of COPD life expectancies. When we followed the trajectory I was on it showed I have 5 years. He explained that he was quite surprised that I was so far along in the disease. He said I didn't smoke that much (about 8 cigs a day) and I started smoking at 32 years old, so hadn't smoked my whole life. He wanted to test me for Alpha-1 antitrypsin deficiency. This is an hereditary (never know whether that's an or a) component of emphysema. So the nurse came back in and poked me with a needle and put some blood from my finger on a card and sent it off. They would know in about 2 weeks. Prior to this I had never heard of alpha-1 antitrypsin deficiency. When I got home I began researching it. More about what it is in later posts.

We set up an appointment for a month later. He changed my Advair to Dulera and gave me a month's worth of samples. Without insurance (we don't have insurance) this visit cost $250, plus the $50 to my primary healthcare provider. The medicine is outrageous. Advair is around $250/month, as is Spiriva. Don't know what Albuterol costs.

We went home to await results and the next visit. 

1 comment:

  1. Dee, you did a wonderful job, thank you for sharing this aspect of your life. Please don't get hung up on the 5 year prognosis, my Doctor gave me that same prognosis 4 1/2 yrs ago, and I am still moving along pretty good. Your on the right track, just hang in there. -- Bill

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