Health Tips
The most important factor in preventing disease or slowing disease progression in those with Alpha-1 Antitrypsin Deficiency (Alpha-1) is avoiding risk factors.
Those with Alpha-1 are usually called just “Alphas.”
The biggest risk factor for lung disease is cigarette smoking.
Any Alpha who smokes must stop!
It is also important to avoid second-hand smoke, avoid infection, and avoid inhaling irritants at work.
While augmentation is available for those with documented lung disease due to Alpha-1, this is only one part of the total management program for Alpha-1.
The Big Fat Reference Guide or “BFRG” is the cornerstone of AlphaNet’s health management and disease prevention program for Alphas. It is considered the most comprehensive guide to living with Alpha-1 available anywhere.
The BFRG provides detailed information on testing and treatment, diet and nutrition, activity and fitness, coping with Alpha-1, insurance, disability and much more.
The Big Fat Reference Guide is quick and easy to use. On the AlphaNet web site at www.alphanet.org, click on BFRG. A simple registration allows the BFRG to be personalized to the specific needs of the user.
The following health tips can complement your physician’s plan of care. They are general guidelines, and you should discuss with your doctor how they apply in your case.
1. PERSONAL HYGIENE
Hand washing is an effective way to avoid contracting or spreading infectious diseases. Guidelines:
- Use warm water to moisten your hands.
- Apply anti-bacterial soap.
- Rub hands together for at least 20 seconds.
- Rinse your hands thoroughly.
- Dry your hands.
- Wash your hands after using the restroom, blowing your nose, changing diapers, before preparing meals, etc.
- If it is not possible to wash your hands, carry an antibacterial hand solution.
Avoid dust and smoke, including shaking rugs, vacuuming, sweeping and dusting. Stay away from smoke (second-hand tobacco, fireplace, etc.), construction or paint fumes, and any smelly cleaning products.
2. AVOIDING INFECTIOUS DISEASES
Avoid the following situations. The use of a face mask may help in particularly high-risk environments.
- Crowds—movie theaters, stadiums, public transportation, etc.
- Airplanes
- Children in daycare, school activities
- Hospitals
- Physician clinics
3. GET YOUR VACCINE SHOTS
(Pneumonia, Influenza, Hepatitis, Meningococcal, Tetanus)
Speak with your physician about immunizations. When you visit a clinic or a doctor’s office, try to schedule an appointment time that minimizes your exposure to infected patients. If you are receiving home infusions, immunizations may be administered safely by your home infusion nurse with an order from your physician.
4. NUTRITION
Diet plays a critical role in your ability to breathe. Foods low in carbon dioxide production make sense to a person who has trouble with carbon dioxide retention. Excessive carbohydrates in the diet can theoretically create more carbon dioxide than other energy sources.
Eating a number of smaller meals rather than the usual three large meals helps to reduce shortness of breath after eating.
Food Safety & Sanitation
Food-borne illness seems to be on the rise. These illnesses are highly preventable.
- Wash all fruits and vegetables before preparation.
- Use separate cutting boards for raw and cooked foods. Wash and rinse cutting boards after each use.
- Thoroughly cook meat and eggs before eating.
- Thaw meat in the refrigerator or microwave (cook immediately after thawing in the microwave). Do not thaw meats by setting them on the counter or putting in an oven.
Proteins and Amino Acids
The meat group supplies an excellent source of protein. A variety of foods are recommended: beef, pork, chicken, turkey, fish and shellfish. The meat group foods supply varying amounts of Iron, Zinc, and B Vitamins (Thiamin, Niacin, Vitamin B-6, and B-12).
Choose lean meats and skinless poultry. Include two to three servings of protein per day, equivalent to 5-7 ounces per day. (A serving is equal to 2-3 ounces of cooked lean meat, poultry or fish.)
Additional excellent sources of protein are eggs, dry beans, tofu, nuts and peanut butter. Other sources of protein that approximately equal 1 ounce of meat:
- 1/2 cup cooked lentils, peas or dry beans
- 1 egg or 1/4 cup egg substitute
- 2 tablespoons peanut butter or 1/3 cup nuts
- 4 ounces tofu
Calories
Be sure to consume sufficient calories to meet your energy demands. If you are losing weight undesirably or unexpectedly, you should increase your caloric intake. This keeps your energy level up!
Distribute your caloric intake evenly throughout the day. Four to five small meals per day are recommended.
Vitamins/Minerals
Vitamin A is available in two forms. The first is in the form of retinol (comes from foods of animal origin such as liver, fish oil, eggs, milk fortified with Vitamin A and other Vitamin A fortified foods). The second is in the form of carotenoids (such as beta carotene) that convert to Vitamin A in the body—found in red, yellow, orange, and many dark-green leafy vegetables.
Vitamin C – All citrus fruits, including oranges, grapefruit and tangerines, are good sources. Other good sources are berries, melons, peppers, dark-green leafy vegetables, potatoes and tomatoes.
Vitamin E is found most abundantly in vegetable oils, salad dressings and margarine. Vitamin E is also found in wheat germ, whole-grain products, seeds, nuts and peanut butter.
Vitamins A, B-6, C, D, and E, Copper, Folic Acid, Selenium and Zinc – These have been shown to regulate immune function. Many vitamins have antioxidant properties as well. Try to get your vitamins from food, but supplements may be necessary.
Try soy! Soybean products are excellent sources of nutrients. Some examples: soy milk, soy flour, textured soy protein (TSP), tofu, soy nuts and whole soybeans.
Check out a vegetarian cookbook and experiment. There are many soy products available in most grocery stores. If you do not find them, ask your supermarket to order them for you.
5. LIFESTYLE CHANGES
Smoking—This is a no-brainer. If you do smoke, it’s never too late to quit! You need to STOP SMOKING!
Exercise – Exercise is essential to everyone, including all Alphas. Strong muscles and a body with low body fat need less oxygen to perform everyday tasks, making breathing easier. Stronger secondary body muscles help to compensate for flattened diaphragm muscles.
But don’t make drastic changes in your activity level. Start out light and slow. Light physical activities include walking, strolling, swimming or slowly treading water, and bowling. Also remember your warm-up stretches before you exercise and cool-down stretches afterwards.
Stress Management —Find ways to manage your stress. For example, join a yoga class, practice deep relaxation or deep breathing, call a friend, play, watch a sunset, laugh or take a pottery class. Practice stress reduction daily and often. Through relaxation and breathing, stress can be effectively managed and the breathing difficulties associated with anxiety and panic can be better controlled.
Sleep Patterns—Try for 6-8 hours of sleep per night. Evaluate your mattress for comfort. Go to bed to sleep. Watching television or working while in bed may interrupt your desire to sleep. If you wake up, get out of bed and do an activity until you feel tired, then return to bed. Talk with your doctor if your sleep tends to be interrupted or not restful.
6. MEDICATIONS: STICK TO YOUR REGIMEN!
Review the correct use of your Bronchodilators with your pharmacist and/or doctor.
Inhaled Corticosteroids: Rinse your mouth thoroughly after you use your steroid inhaler, or you may be at increased risk of an infection in your mouth.
Metered Dose Inhalers (MDI): Your doctor may prescribe a spacer to maximize the benefits and reduce side effects.
Get Prompt, Aggressive Treatment of respiratory tract infections. The single most important factor in Alpha-1 disease progression is infection.
During the flu and cold season, if you begin to feel ill, it’s very important to check your temperature. If you develop any of these: increased shortness of breath, a fever, a significantly increased amount of nasal drainage, or a cough producing sputum that is any color other than clear, get medical attention as soon as possible It’s important to avoid developing pneumonia.
7. PULMONARY HYGIENE
Oxygen Saturation Monitoring: If you are on oxygen therapy and you have an oxygen saturation monitor, changes in your oxygen saturations may be an early sign of infection or allergic reaction. Get medical advice with changes in any of these.
Thanks to Janis Berend, CNP and our fellow Alphas who helped by contributing their thoughts and practices to this page. Look at this as a living document that can be added to, and revised to reflect improvements in the understanding of Alpha-1 Antitrypsin Deficiency, and those factors that promote optimal health.
