LAM Living With

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The outlook for people who have LAM is much better today than it was in the past. Diagnosis and treatments have advanced. Many people who have LAM are living longer and with fewer complications.

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

• Follow your treatment plan. It may take several months for your body 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 provider about getting a pneumonia vaccine, the COVID-19 vaccine, and a yearly flu shot.

Living with LAM may cause fear, anxiety, depression, and stress. Your healthcare provider can evaluate how your condition is affecting your activity level and your mental health. To help improve your quality of life, your provider 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 provider 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 provider may recommend medicines, such as antidepressants, or other treatments that can help improve your quality of life.

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

• Choose healthy foods. Eating more fruits, vegetables, and whole grains and fewer saturated fats and added sugars can improve your overall health. A healthy diet can promote weight loss or help you maintain a healthy weight.
• Get physical activity. Physical activity improves bone mineral density, muscle strength, flexibility, and posture. You may also benefit from rehabilitation and aerobic exercise, or training to raise the amount of oxygen in your blood. Before starting any exercise program, ask your provider 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 to quit smoking, call the National Cancer Institute’s Smoking Quitline at 1-877-44U-QUIT (1-877-448-7848).

Your provider may recommend these lifestyle changes as part of a larger pulmonary rehabilitation program, which they can oversee.

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

• Collapsed lung: This condition, also known as a pneumothorax, 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. Your provider may recommend a surgical procedure called pleurodesis to help the lungs and chest cavity stick together and prevent future lung collapses.
• 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 healthcare provider 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 provider may order tests to measure your bone density. If you have lost bone density, your provider 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. One form of pleural effusion is known as a chylothorax, which is caused when a certain type of lymphatic fluid (chyle) accumulates in the pleural space.

• Avoid air travel because it increases your risk of developing pneumothorax that collapses the lung. Symptoms include sudden shortness of breath or severe chest pain. Talk to your provider 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 raise your risk of complications.
• See your provider regularly so they can keep track of any side effects you report and monitor the long-term use of LAM medications.

Women with LAM can become pregnant, but hormone changes during pregnancy can worsen LAM. Also, women with LAM may be less fertile and have a harder time becoming pregnant. Pregnancy with LAM increases the risk for pneumothorax and chylothorax, may lead to more lung function decline, and raises the chance of preterm delivery. The long-term effects of the medicine sirolimus on mother and child also needs additional study. While many women with LAM have full-term pregnancies, it is important to talk to your healthcare provider if you are thinking of becoming pregnant.

Most providers 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 and are interested in birth control, talk to your healthcare provider about your options.