alphacat48

Hello. I am new to the board. I have Alpha-1 (A1AT), the genetic lung condition. I have known for a couple of years that I was at high risk for lung problems, since I took the test in order to participate in a family research project (At least two other siblings have tested positive). One of my sisters died a year ago. She had emphysema and liver complications due to Alpha-1.

I have had pneumonia several times over the last few years, and in May, I had a particularly bad case of double pneumonia. It was difficult to get out of bed to see a doctor. On the day I did get to my clinic, they were quite concerned. I began seeing a pulmonologist. My chest x-ray showed emphysema and the CT scan showed bronchiectasis. I have never smoked. I have always been pretty active, but over the last year I have been tired most of the time. My PFTs were pretty good, except for the oxygen:CO2 exchange capacity, which was 56%.

Currently, I am struggling with the reality that I have had chronic sinusitis for many years and I am pretty sure this has contributed to my condition. Every time I pursued treatment for it, I was told that antibiotics were not used for sinus infections. Yikes.

I am currently waiting to see if my insurance will approve IV augmentation therapy (with Prolastin), as recommended by my pulmonologist, even though my FEV1 was 91%.

If anyone out there has Alpha-1, or has a family history of emphysema (or early onset liver disease), I am here to help. Like others here, I have done a lot of research on these things, since two of my sisters learned they had active disease when in their thirties.

I also lost a younger brother last year to a malignant brain tumor (glioblastoma). From that first symptom (severe headache which got him to the ER 5 days later), through 9 surgical procedures, one series of radiation therapy, 3 episodes of bacterial meningitis, to losing his life, occurred over a period of 8 months. I have a lot of research on brain tumors also.

I am very appreciative of each and every day.