I Have Been Diagnosed With AAT Deficiency – What Should I Do?

If you have AAT deficiency and emphysema, your healthcare provider may decide to do several things including:

  • Prescribe an alpha1-antitrypsin (AAT) augmentation, which is designed to raise the level of AAT in the blood and the lungs
  • Order breathing tests and/or blood tests. (If your breathing is difficult, your healthcare provider may also suggest inhaled medication and/or supplemental oxygen).
  • Suggest helpful lifestyle changes

What Kinds of Lifestyle Changes Will My Healthcare Provider Suggest?

Even if you do not have symptoms of AAT deficiency now, you could have symptoms in the future. However, taking steps in managing your health may delay the symptoms from happening.1

People with AAT deficiency should follow good health practices:

  • If you are a smoker, consider stopping
  • Participate in a pulmonary rehabilitation program if breathing is difficult
  • Stick to a good nutrition and exercise program, as advised by your healthcare provider
  • Go to your regular healthcare provider appointments. Follow all your healthcare provider's advice

To stay healthy, it is also best to:

  • Avoid all forms of tobacco smoke, including second-hand smoke from other smokers
  • Minimize occupational and environmental pollutants, including dust and pollen, wood-burning stoves, fumes from household cleaning products, paints, and other toxic agents
  • Minimize exposure to people who are sick

It is very important for patients with AAT deficiency (Alphas) to do everything possible to take care of their lungs and maintain overall good health. Healthy lifestyle choices play a key role. Here are some important health tips2:

  • Avoid exposure to dust and fumes (including those from household cleaning products)
  • Stay away from second-hand tobacco smoke, air pollution, and other pollutants that may irritate your lungs or increase your risk of lung infection
  • Exercise regularly as advised by your healthcare provider
  • Eat a balanced diet

There are also some very basic things you can do during allergy season and travel.

Allergies are nothing to sneeze at, especially for patients with AAT deficiency and others with lung-related ailments such as chronic obstructive pulmonary disease (COPD). During the peak pollen counts of spring, summer, and fall, people with AAT deficiency and COPD need to take special care to limit exposure to allergens that can aggravate breathing difficulties.3

If you suspect that you have allergies, consult a physician for testing and treatment advice. In the meantime, the following survival tips also may help:

  • Be ready for allergy season. Plants and trees pollinate in reasonably predictable order every year. Allergy medications taken before exposure to allergy-causing substances can help prevent an outbreak of symptoms4
  • Air-condition your car and home and keep your windows closed to keep the pollen out4
  • Install a high-efficiency media filter with a MERV rating of 11 or 12 on your furnace and air-conditioning unit. Leave the fan on to create a "whole house" air filter that removes particles. Be sure to change the filter every three months (with the change of the seasons) to keep your air cleaner year-round5
  • Avoid windy weather. It can aggravate allergies4
  • Take a vacation at the beach. Ocean breezes can help clear away pollen and relieve allergy symptoms4

Whether you're traveling for work or for pleasure, if you require supplemental oxygen, there are a few things to consider when making your plans. Even patients with AAT deficiency and lung disease who do not usually depend on oxygen treatment may need to rely on supplemental oxygen for support when taking a trip. Planning for your oxygen needs can be particularly important if you will be flying.6

When flying:

  • Speak to your physician before traveling. This is VERY important. Even people who don't usually require supplemental oxygen may need to plan for the use of supplemental oxygen on an airplane due to the cabin's reduced pressure. Your doctor may want to offer tests to determine your in-flight oxygen needs
  • Tell your airline about your oxygen needs when booking your tickets

Important questions to ask include6:

  • What oxygen services can your airline supply?
  • Are there seating restrictions for passengers with in-flight oxygen needs?
  • If you own or will be renting a portable oxygen concentrator (POC), what documentation will you need to provide to airline and airport security personnel?

Coordinate all of your oxygen needs before you travel. Coordinating oxygen needs between flight connections can be difficult. Airlines do not supply oxygen when on the ground so you will need to arrange for your own supply for all those times that you will not be on a plane. This includes time waiting for a connecting flight, during layovers, or even if landing at an unexpected airport is required.6,7

Research healthcare services at your destination. Be sure to have the contact information and address of a doctor or hospital close to your destination. Bring a copy of your medical records with you.

Welcome help. Many airport terminals can require long walks between gates, luggage retrieval carousels, and ground transportation depots. Check into the availability of wheelchair service, baggage assistance, and mobile carts while at the airport.

Know the law. The Federal Aviation Administration's "Nondiscrimination on the Basis of Disability in Air Travel" rule requires most air carriers to allow passengers to use FAA-approved portable oxygen concentrators during flights. Permitted POCs must be approved by the FAA and must be labeled as such.

The FAA-approved POCs can be found here8:
http://www.faa.gov/news/press_releases/news_story.cfm?newsId=11083.

Other modes of public transit (train, bus, cruise) may be more flexible when it comes to traveling with supplemental oxygen, but you should still always inquire ahead of time to make sure you know what their guidelines are.

Traveling in your own car offers the most freedom, but plan your route to ensure there are plenty of places along the way to refill your oxygen prescription. Also, discuss the terrain you'll be passing through with your doctor in case your flow rate prescription needs to be adjusted for differing altitudes.

If your destination is outside of the United States, be sure to inquire about the availability of oxygen services where you will be staying. Determine the availability of oxygen refills and rentals. Also, look into the rules regarding importation of oxygen.

The Transport Security Administration (TSA) offers its guidelines for traveling with oxygen and respiratory-related equipment.

The Airline Oxygen Council of America is a good resource for learning about advocacy opportunities regarding airlines and their POC policies.

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