Questions to Ask Your Doctor about Alpha-1 Antitrypsin Deficiency
How is AAT deficiency diagnosed?
In individuals who are suspected to have AAT, your doctor will perform a screening blood test to check AAT levels in your body. If levels are found to be low, further testing of lung and liver function will be performed.
Can patients with AAT deficiency have a normal life span?
Yes, it is possible that some individuals with AAT deficiency may have a normal life span. Those who are non-smokers are more likely to retain normal lung function long term.
What lifestyle changes should I make if I am diagnosed with AAT deficiency?
- Stop smoking and avoid second-hand smoke exposure.
- Avoid exposure to dust or fumes.
- Eat well and exercise regularly
- Limit alcohol consumption.
- Avoid herbal supplements or unlabeled medicines without consulting your doctor.
Who should be given AAT replacement therapy?
If your doctor determines that your lung function is declining, you may be offered AAT replacement therapy. AAT therapy can cause side effects, is expensive, and usually requires prior authorization from your insurance company. The manufacturer may offer programs to provide therapy at little or no cost to you.
How do I manage my breathing symptoms?
Your shortness of breath may be a result of emphysema. If you are a smoker, you should stop smoking. Your doctor may prescribe inhalers for emphysema or check you for other conditions that can affect your breathing, such as heart disease. Your oxygen levels will also be checked and if found to be low, you may benefit from oxygen therapy.
Is it safe to exercise if I have AAT-related emphysema?
Your doctor will recommend an exercise plan that is good for you. You may also be referred to a pulmonary rehabilitation program. In general, it is good for patients with emphysema to remain as active as possible and perform regular exercises.
Will I need a lung transplant or advanced therapies to control my symptoms?
If your doctor determines that your lung function is declining quickly and you have breathing problems that are not controlled with currently approved therapies, you may be referred for evaluation for lung volume reduction surgery or lung transplantation.
Do I have to get any special vaccinations if I have been diagnosed with AAT?
Based on your lung function and age, your doctor may prescribe the pneumonia vaccines (Prevnar 13 and Pneumovax). However, you should always get the annual flu vaccine.
This content was developed in partnership with the CHEST Foundation, the philanthropic arm of the American College of Chest Physicians.
Approved by Scientific and Medical Editorial Review Panel. Last reviewed August 4, 2016.