arresting vs slowing seems to differ from individual to individual. the more active and fit the patient is, the better the results appear to be.


Ohio by any chance?

I was recently diagnosed in October. I was denied the augmentation by my insurance, but I understand why. I am not experiencing any serious lung issues at this time, I was diagnosed due to abnormal liver function. I will continue to monitor my tests and lab work for any changes. I contacted www.alpha1.org for information and was also able to talk with someone who answered many of my questions.

My understanding of the augmentation therapy is that it can slow the progression, but I understand what the other poster said, too.

I suggest you gather more information and have some of the baseline testing done by a pulmonologist and go from there. I definitely believe that knowledge is power and that she is active and fit is a great positive for her. I am working on that part : )
There are support groups in alot of cities and an educational conference in DC in June.

My best to you and your fiance
Take Care, K

I should clarify my reply.

Many who are on the healthy side when starting augmentation therapy and who continue to strive towards a healthy lifestyle can often see little to no deterioration in their annual pulmonary function tests. This shouldn't be construed as "stopping" the disease --- rather slowing it greatly.

The other replier is absolutely on target - knowledge is key. Contact alphanet.org or alpha1.org - or both -- they both have massive amounts of resources available.

Great replies, much appreciated. Yes we are in Ohio...assume you are in Dayton?

yes - i'm in dayton --- and infuse 9 patient's a week --- including one whose sister was just diagnosed as ZZ --- which i thought was a strong coincidence

ps...i typed these on my iphone and apparently it does not like "fiance" and changed it to "finance". How annoying

There is hope and treatment. In my family of 8 brothers and one sister, only 3 of us were ZZ. My two brother's died back in the '70's before there was any real treatment. I am a ZZ and for some strange reason didn't develop symptoms until I was in my mid 50's. I am currently 64yo and have been on replacement therapy for 7 years. My lung function tests have stayed stable, around 55% of normal which is enough to give me a good quality of life. I have found that you have to practice good health and stay ACTIVE! The less you do, the less you can do. My mom and dad were both MZ, and the rest of my siblings are healthy. My daughters are both MZ as well. Find a pulmonologist and get started on the meds you need. It takes a while and some trial and error to find the one that help you clear your lungs the best. Never give up.