LAM - Living With - Living With

Your doctor may recommend vaccines to prevent lung infections, lifestyle changes to improve your overall health and avoid some complications, tests or medicines to care for your bones, and pregnancy and birth control options.

• Follow your treatment plan. It is important that you follow your doctor’s instructions for your treatment. It may take several months for you to respond to treatment. If you stop taking your medicines your symptoms may return or get worse.
• Get regular vaccinations for lung health. To help prevent additional problems with your lungs, talk with your doctor about getting a pneumococcal pneumonia vaccine and a yearly influenza or flu shot.

If you have LAM, it is important for you to have routine follow-up care so your doctor can monitor your condition. In the early stages of LAM, you usually can do your normal daily activities. These may include attending school, going to work, and doing common physical activities such as walking up stairs. In the later stages of LAM, you may find it harder to be active and you may need oxygen therapy.

Serious and possibly life-threatening complications can occur if you have LAM. Women who have LAM may develop pneumothorax. LAM may cause death from respiratory failure. Read more about possible signs, symptoms, and complications of LAM.

Living with LAM may cause fear, anxiety, depression, and stress. Your doctor can evaluate how your condition is affecting your activity level and mental health. To improve your quality of life, your doctor may recommend steps you can take.

• Getting counseling, particularly cognitive behavioral therapy.
• Joining a patient support group, which may help you adjust to living with LAM. You can see how other patients manage similar symptoms and their condition. Talk with your doctor about local support groups or check with an area medical center.
• Seeking support from family and friends can help relieve stress and anxiety. Let your loved ones know how you feel and what they can do to help you.
• Taking medicines or other treatments. Your doctor may recommend medicines, such as antidepressants, or other treatments that can improve your quality of life.

If you have LAM, it is important that you take good care of your health. Your doctor may recommend that you adopt the following healthy lifestyle changes.

• Healthy eating to improve overall health.
• Being physically active. Physical activity improves bone mineral density, muscle strength, flexibility, and posture. Before starting any exercise program, ask your doctor about what level of physical activity is right for you.
• Quitting smoking. If you smoke, quit. Also, try to avoid other lung irritants, such as dust, chemicals, and secondhand smoke. Visit Smoking and Your Heart and the National Heart, Lung, and Blood Institute's Your Guide to a Healthy Heart. For free help quitting smoking, you may call the National Cancer Institute's Smoking Quitline at 1-877-44U-QUIT (1-877-448-7848).

Your doctor may recommend these lifestyle changes as part of a larger pulmonary rehabilitation program that your doctors oversee.

Your doctor may recommend taking the following steps to prevent complications from LAM.

• Avoid air travel if you have symptoms of a collapsed lung. This includes sudden shortness of breath or chest pain. Talk to your doctor before traveling to places where the amount of oxygen in the air is low.
• Avoid scuba diving, which may increase your risk of complications.
• Care for your bones. Some women who have LAM may be at risk for osteoporosis. Your doctor may order tests to measure your bone density. If you have lost bone density, your doctor may prescribe medicines or calcium and vitamin D supplements to prevent more bone loss.

Your doctor may recommend procedures to treat the following complications of LAM:

• Pleural effusion. Your doctor may recommend removal of fluid from your chest, called thoracentesis, or abdomen, called paracentesis. This may help relieve discomfort and shortness of breath. Your doctor often can remove the fluid with a needle and syringe. If large amounts of fluid buildup in your chest, your doctor may have to insert a tube into your chest to remove the fluid.
• Pneumothorax. Removing air from your chest may relieve shortness of breath and chest pain caused by a pneumothorax. Removal of air in an abnormal location in your chest usually is done with a tube. The tube is inserted into your chest between your ribs. Often, the tube is attached to a suction device. If this procedure does not work, or if your lungs repeatedly collapse, you may need surgery to prevent a pneumothorax or to assist re-expansion of your lung.
• Kidney tumors. Kidney tumors, or angiomyolipomas, often do not cause symptoms, but sometimes they can cause ongoing pain or bleeding. If this happens, you may need surgery to remove some of them. If bleeding is not too severe, a radiologist often can block the blood vessels feeding the kidney tumors. This may cause them to shrink.

Because hormone changes during pregnancy can worsen LAM, it is important to talk to your pulmonologist and obstetrician, a doctor that specializes in pregnancy and childbirth, before you get pregnant.

Most doctors do not recommend birth control pills containing estrogen to women who have LAM because estrogen is thought to contribute to or worsen LAM. If you have LAM, talk to your doctors about birth control options.

Return to Treatment to review possible treatment options for your LAM.