Alpha-1 Antitrypsin Deficiency Support Group

Hi Lisa! No one seems to ever come to this section of Daily Strength. Maybe you and I are the only two. ;)
I was diagnosed back in June/July of this year. I am an SZ which is considered mild/moderate. I do not have severe lung problems at this time. I am able to walk one mile daily with no breathing problems. I am going to get kits so my adult kids can be tested too.
Are you under the care of a pulmonologist? He/she should be able to direct you in the right place to get these kits so your kids can be tested. Do you smoke? I did smoke for probably 30 years but have been quit for ten. I am 67 and other than rheumatoid arthritis I am very healthy. There are organizations that can help answer some of your questions. Alpha1.org is one. I'll have to go check and I'll come back and post those for you.
Linda

Lisa I have found two organizations: alphanet.org and alpha1.org.
Here are two email addresses of people that can point you in the right direction for all your questions:
Larry Tipper eastcoastalphas@yahoo.com
Cathy Horsak horsak@alpha1.org

I am not going to begin the weekly infusions until I can get answers from Mediare and my secondary insurance.
Linda

Thanks Linda
I did reach the genetics lady who said that they don't really know much about the SS types because they haven't studied them compaired to the SZ or other ones. So no one is really sure what the risk level is because they don't have much information on SS long terms. I am having my daughters and my son in law test- since SS is a carrier and sadly both my daughters smoke, think its better for them to know what the risks are early.
Yea- I smoked also 35 years till the sudden COPD issue. Waiting to see new pulmonologist since my last one has been a joke.

I'll try and email those folks and see what else I get. Hope insurance gives you the go ahead.
Thanks again so very much!!
Hugs, Lisa

I'm sorry that you are a carrier. I am one too. Although they say that carriers aren't at any greater risks than the general population, I have been dealing with moderate/severe asthma and vocal cord disfunction so I don't know.
I guess because not too many know of alpha 1 so that's probably why there isn't much activity on this site.
T-forTexas gave you 2 great sites. There is also pamphlets that you are able to print out there and references to studies that you can participate in if you choose.
Tom

After being told the annual expense of the infusions I am scared to pieces that my insurances would eventually say "Okay you've met your maximum amount in a lifetime".
My meds for RA are very expensive and I have very good coverage by my insurance companies for those. I was told the infusions could run anywhere from $80,000 to $100,000 dollars a year. That expense is scary.

Linda

That's terrible when we have to worry about what insurance will cover instead of how to get better. I hope that things work out. I'm afraid that my insurance would say that some of those procedures are "experimental" and try to weasel out entirely.
And I worry for my adult children. If they do test and are positive for alpha would they be able to acquire insurance.
Linda, I sure hope that you are able to get the help that you need. Maybe all this health care reform will help...I don't know.
Lisa, welcome to the site. Feel better,
Tom

Tom,
Yes that is the Big Question, will our children be able to get medical insurance if they are found to have alpha1. As things stand today they would not be able to get the insurance due to pre-existing conditions. If we ever get medical reform that disposes of the word pre-existing then we would all be better off.
I am going to do lots of research before I say 'yes' to the infusions. I'm lucky right now in that I don't have asthma, chronic bronchitis, or any cough etc. I can walk a mile a day without getting breathless. I think that's pretty good. ;)
Linda