Alpha-1 Antitrypsin Deficiency Support Group

My name is Heather and I was diagnosed with Alpha 1 about 12 years ago. The doctors/lab techs found it by chance. I was going through testing for Lupus and Fibromyalgia. At the time, my doctor told to not smoke and I would be fine. In the past 3 years my ability to breath and stay healthy has diminished. I ended up in the hospital last fall with an infection the doctor could not pinpoint. They said it was a whole systematic infection. Meanwhile, my liver levels were rising and I was getting weaker. About the 3rd day I mentioned to my doctor that I was once diagnosaed with Alpha !. It was like a light bulb went off. He said that explained a lot. So after 7 days on cipro IV, I was sent to a pulmonologist (sp?) who has Alpha 1 patients! I was very encouraged. I went through all the preliminary tests to confirm the diagnosis. I am SZ Alpha 1, which I'm not sure how that differs from ZZ. He talked about starting the augmentation therapy because of all the lab test results. But when he got my PFT, he said it was better than he expected and we have put-off the augmentation. I was on Advair 500 2x's a day and Spiriva once a day, which was working. It's amazing how much I wasn't breathing. Unfortunately, I developed thrush that traveled into my esophagus. My dr was surpprised how fast the thrush spread and he's never had this happen to another patient, of course. Come to find out I am more susceptible to yeast infections. I used to get them on my skin. I ended up in the hospital for 6 days with diflucan IV. I was also unable to eat or drink for about 3 days. Now, I can no longer use the inhaled steroid and the diflucan I am taking (400mg/day) is making me nauseous and very sick. I am using a nebulizer 4x's a day right now. When the esophagitis clears up, my Dr and me need to figure out what to do next for my asthma/COPD. I do have a small amount of emphysema in the lower portion of both lungs. Being in the hospital twice within 10 months has taken a toll on my body and spirit. I feel very lost and at my wits end. I think the seriousness of my situation is finally hitting home for me. My therapist told me I have anger issues. I didn't go back. I have always been able to be positive about my health. I do have fibromyalgia. But now I am lost, and that is how I ended up here.
Posted on 08/14/08, 10:08 am