The lab guy's answer makes a lot of sense.
If you have been told you have "a genetic lung disease that affects the liver that is rare and has no name," it sounds like you badly need a more knowledgeable health care professional. Alpha-1 Antitrypsin Deficiency, usually called Alpha-1 or AATD for short, obviously has a name. Everything you have described except the "no name" part, fits Alpha-1. You can find out a lot more here: alphaone.org.
For Pete's sake, get knowledgeable medical help. It's available.