LAM Living With

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The outlook for people who have LAM is much better today than it was in the past. Advances in diagnosis and treatment allow many people who have LAM to live longer with fewer complications.

It is important that you follow your doctor’s instructions for your treatment and see your doctor regularly to monitor your health.

• Follow your treatment plan. 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. Talk with your doctor about getting a pneumococcal pneumonia vaccine, the COVID-19 vaccine, and a yearly flu shot.

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.

• Get counseling, particularly cognitive behavioral therapy.
• Join 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.
• Seek support from family and friends, which can help relieve stress and anxiety. Let your loved ones know how you feel and what they can do to help you.
• Take 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.

• Choose healthy foods. Eating more fruits and vegetables and whole grains, and less saturated fats and added sugars, can improve your overall health.  
• Be 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.
• Quit smoking. If you smoke, stop. Also, try to avoid other lung irritants, such as dust, chemicals, and secondhand smoke. Visit Smoking and Your Heart and 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 healthcare providers can oversee.

LAM may lead to serious and life-threatening health problems.

• Kidney or other tumors: Most kidney tumors are benign (noncancerous), but sometimes they can cause symptoms such as pain or bleeding. If this happens, you may need surgery to remove them. If the bleeding is not too severe, a doctor called a radiologist may be able to use medical imaging equipment to block the blood vessels feeding the kidney tumors. This may cause them to shrink. Women who have LAM may also develop large tumors in the lymph nodes or in other organs such as the liver.
• Osteoporosis: This condition causes bones to become weak and break easily. 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.
• Pleural effusions: These may occur if body fluids collect in the pleural space between the lung and the chest wall. The excess fluid in the chest may cause shortness of breath because the lung has less room to expand.
• A collapsed lung (pneumothorax): This condition can happen when air leaks  into the pleural space in the lungs. Reinflating the lung requires a tube that is inserted into the chest between the 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 re-expand the lung to normal size.

• Avoid air travel because it increases the risk you may develop pneumothorax that collapses the lung. Symptoms include sudden shortness of breath or severe chest pain. Talk to your doctor before air travel or before traveling to places at a higher elevation, where there is less oxygen in the air.
• Avoid scuba diving, which may increase your risk of complications.

Because hormone changes during pregnancy can worsen LAM, it is important to talk to your doctor 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. Talk to your healthcare provider about birth control options.