COPD & Emphysema Support Group
COPD is a progressive disease characterized by airflow obstruction or limitation. Emphysema is characterized by loss of elasticity of the lung tissue, destruction of structures supporting the alveoli and of capillaries feeding the alveoli. Both have symptoms that include shortness of breath, among other respiratory troubles. If you are a COPD or Emphysema sufferer, join...
Hi All,
Went to the pulmonologist yesterday and my results were back. I have alpha A antitrypsin deficiency. I am relieved at least to know what I have. Now I get to start a regimen of once a week IV infusions of the protein I am deficient in. Ugh. That is supposed to stop or slow down the progression. We shall see. I will need to do these for the rest of my life. Super expensive, but the company that does the infusions is working with us via our pulmonologist. 100,000 people in the US have this. My doctor has only seen 5 with it in his 25 years of practicing. I feel like I'm an experiment of sorts. None of my siblings smoke (just me) so they likely won't have the lung deterioration I have had even if they have the bad genetics. Pretty interesting stuff. Glad you all are here to share this information with. Thanks.
http://alpha-1foundation.org/alphas/?c=03-Alpha-1-Lung-Disease
Link with good information if you are interested.
DeeDee
Went to the pulmonologist yesterday and my results were back. I have alpha A antitrypsin deficiency. I am relieved at least to know what I have. Now I get to start a regimen of once a week IV infusions of the protein I am deficient in. Ugh. That is supposed to stop or slow down the progression. We shall see. I will need to do these for the rest of my life. Super expensive, but the company that does the infusions is working with us via our pulmonologist. 100,000 people in the US have this. My doctor has only seen 5 with it in his 25 years of practicing. I feel like I'm an experiment of sorts. None of my siblings smoke (just me) so they likely won't have the lung deterioration I have had even if they have the bad genetics. Pretty interesting stuff. Glad you all are here to share this information with. Thanks.
http://alpha-1foundation.org/alphas/?c=03-Alpha-1-Lung-Disease
Link with good information if you are interested.
DeeDee
Take care,
Dennis
From there on; I have been treated just like anyone else with COPD; with the exception of being shown the damage to my lungs: Lower part; and it is Emphysema; not bronchitis. I was diagnosed at age 43; but know I had many symptoms before then. Everyone thought that was quite young to get COPD--------maybe not-----If I have the Genetic form? (alpha A Defciency)?