Alpha affects everyone differently. There are infants sicker with it than I've ever been who have obviously not been exposed to smoke or alcohol, and I've lived for 22 years being smoked on by all my relatives and am mostly "okay." So try to relax. If you don't have lung issues now, there's no real reason why you /have/ to get them. I'm not saying you definitely won't. Just saying that it isn't a definite possibility, as we all have different struggles. My aunt had Alpha. Although she drank, it was a lung condition that killed her - her liver was more or less fine.
The idea of a "normal life" is complicated. There is no cure for Alpha, of course. All you can really do is try to stay healthy. For a liver-affected person, that means no alcohol, avoidance of medicines or herbal supplements unless absolutely necessary (ie don't take 4 tylenols just because you have a minor headache - not worth doing more damage). I don't know that, without lung conditions, you would even be considered immunocompromised. I'm not all that "sick" right now - mostly just have trouble catching my breath when I do a lot of walking and have trouble at work and in humidity. However, because I get bronchitis or pneumonia almost every time I get a cold, I avoid doing normal things like going shopping at crowded stores in the winter if I think it'll put me at risk. It's a personal choice. But no, the easy answer is that you're probably not doomed to a wheelchair or destined to die a slow and painful death. Liver transplants are an option. Yes, you have a severe form of Alpha. But augmentation therapy will help.

If you've never known anyone with Alpha, I will just share this example. My aunt was lung-affected. She absolutely refused to quit smoking. She smoked hard, at that, because she had nothing better to do. I would say 5 years maybe after her diagnosis (probably closer to 4), she was dead. Her decline was pretty steady downward. She took the augmentation therapy (though I don't know why, if she intended to keep smoking). The last few years of her life, she was on oxygen. She stayed home a lot because she didn't have the air to get out and do anything.
Then there are people in their 60s who have Alpha, quit smoking, take their therapies, try to stay healthy, and are more or less well. It is what you make it.
I know this is rough. Diagnosis was so hard for me. I still (a year later) spend a lot of nights crying and thinking "why bother, I'm dying anyway." It's very depressing to be in your 20s (I'm 22) and have to think about your death. It's a bizarre kind of terminal illness, because it may not kill you for decades if it ends up being what takes you out. (Like I said, it isn't a promise. Science is moving forward. Liver transplants usually have a good amount of success. You'll be okay. :) ) It's much different than, say, cancer or something. And yet, it's so similar.

Allow yourself to be sad for awhile. Just try to find some happiness too. You are allowed to be happy. And well. For what it's worth, I'm very sorry. I wouldn't wish this on anyone. It's rough. And people who don't have it don't understand. Everyone's view in my family is "oh, please - we're ALL dying." I wish there were more groups like this. The resources are so scarce.

Hello, I'm so sorry you have this, I think it's good to learn as much as you can, I am only just beginning to learn, I knew I probably had something wrong in my 20's but had two young kids and just carried on living as you do, then in my 30's I knew for sure I had lung issues but couldn't give up smoking as my life was so stressful at the time, finaly managed to stop smoking and went to the doctors, was tested and found out I had severe lung damage, Emphysema ( my Mum died of the same ) I asked the doctor if it could be genetic but was told not to be 'silly' as I'd be dead already!!! well I'm still alive and kicking 9 years later, I have oxygen whenever I'm doing anything physical, The consultant said NUTRITION and EXERCISE are the best things that you can do for yourself, the worst part of it for me was telling my kids, nephews and nieces to get tested and I have 4 grandkids and 1 more on the way this coming January ( I'm so excited about that!) my best advice to you is.....''If you live your life , you lose your fear of death'' I'm 58 and I have everything to live for and so do you so live it ,take care of yourself and be happy, love to you and yours Cazz :)

Julie all your feelings right now are very normal. I do think you will feel better once you've seen your Dr. Have you been treated for Hep C? If you have no medical tests revealing any lung or liver (other than H-C) problems count yourself lucky!! You have a head start. Everybodies case is so different. My advice is do all you can to stay healthy. Exercise!! Keep those lungs active. When I got sick with shortness of breath and entered the hosp. in 09 I talked with the Dr. about the fact my Gfather died of lung disease and I knew my Dad would die of lung disease and now here I am with lung disease. I simply said what's up with that?? He immediately said he wanted to run the genetic test and it was positive for Alpha. Genotype SZ which they say is supposed to be moderate. I was 66 at time of diagnosis. I had smoked for several years but have been quit for 15 yrs. I am 71 now and true I am on full time oxygen. I am on full time augmentation which I am so thankful for. You are so young and have such a head start on this disease. Try not to be too frightened. Find a good Pulmonologist. Educate yourself about the disease. The Alpha foundation is an excellent source and they are on Facebook too. Just learning more about it has made me determined to fight even harder! Take one day at a time and enjoy your baby and your life. I have Great Grandbabies that give me much joy! :) I would like to hear from you.
Linda