Alpha-1 Antitrypsin Deficiency - just been diagnosed

Posted by nancyjac @nancyjac, Aug 18, 2018

We recently moved to Florida so I've had to find new doctors. I went to a new pulmonary doctor who was very thorough. After reviewing my pulmonary function tests and asking me questions about my family history etc. He suspected that I have something called Alpha 1. They did a blood test and called me ten days later and told me that I the blood work came back indicating that I have Alpha-1. They gave me a brochure with various web sites that I've gone on in an attempt to learn more about the disease. Is there a discussion group here about Alpha-1? I would really like to be able to be in a discussion group with folks who have been diagnosed with Alpha-1 to learn more about it. Thanks!

Interested in more discussions like this? Go to the Lung Health Support Group.

otterbein79 | @otterbein79 | Oct 11 12:47pm

Are you located in France?

otterbein79 | @otterbein79 | Oct 11 12:53pm

In reply to @nancyjac "@waterboy @windwalker I see my pulmonary doctor on Thursday. Does anyone have any suggestions about any..." + (show)

Alpha1 can start to affect you at varying rates.
I’d ask him how quickly you can start receiving Prolastin-C infusions.
If you can’t afford it ($130K/yr) contact these three places that offer financial assistance:
NORD
The Assistance Fund
Accessia.

otterbein79 | @otterbein79 | Oct 11 1:10pm

Do you live in France?
I assume that you have had a PFT. There are other variables on that test that affect the WAY you breathe with the lung volume you have.
If you are in the US find an Alpha 1 specialist in the state in which you live. Someone who will view your PFT in its entirety.
Alpha.1.org has a list but they won’t let me post a link because I am a new member