Living With

Not long ago, doctors thought women who had LAM wouldn't live more than 10 years after diagnosis. With earlier diagnosis and newer treatment, patients with LAM are living longer, with some living more than 20 years after diagnosis.

For your follow-up care, you may want to see a pulmonologist, a doctor who specializes in lung diseases and conditions, and who has experience providing care to patients with LAM. Your doctor will monitor your condition to see if it is stable or getting worse and causing serious complications. Also, your doctor may recommend other medical care, including vaccines, lifestyle changes, and pregnancy and birth control planning.

Monitor your condition

If you have LAM, it is important for you to have routine follow-up care so your doctor can monitor your condition to see if it is stable or worsening. LAM has no cure, and the disease tends to worsen over time. How quickly the disease worsens varies between patients.

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. More than half of women who have LAM develop pneumothorax, or collapsed lung. LAM may cause death from respiratory failure. Read more about possible signs, symptoms and complications of LAM.

Lung Transplant is a treatment option for patients whose lungs have been damaged by LAM. Return to Treatment for more information about lung transplants for LAM.

Receive other medical care

In addition to monitoring your condition, your doctor may recommend emotional support to improve your quality of life, 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.

Emotional support

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 medicines to treat pain, fatigue, or mental health concerns or serious depression that you may have.

Other steps you can take that may help include:

  • Seeking support from family and friends to help relieve stress and anxiety. Let your loved ones know how you feel and what they can do to help you.
  • Talking with your doctors or a professional counselor about how you feel.
  • Joining a patient support group to help you adjust to living with LAM.
  • Contacting the NHLBI Health Information Center for resources or help identifying patient support groups.
  • Obtaining more information about your condition.

Vaccines for lung health

Take steps to care for your lungs. For example, talk with your doctor about getting a pneumococcal pneumonia vaccine and a yearly influenza or flu shot. Visit the Centers for Disease Control and Prevention (CDC) Web pages for more information about:

Lifestyle changes

If you have LAM, taking good care of your health is important. Your doctor may recommend you adopt the following healthy lifestyle changes, many of which are also heart-healthy.

  • Make healthy eating choices.
  • Be physically active.
  • Get plenty of rest.
  • Quit smoking. Talk to your doctor about programs and products that can help you quit smoking. If you have trouble quitting smoking on your own, consider joining a support group. Many hospitals, workplaces, and community groups offer classes to help people quit smoking. Ask your family members and friends to support you in your efforts to quit.

Also, check with your doctor before traveling by air or traveling to areas where medical attention isn't readily available. Also, talk to your doctor before traveling to places where the amount of oxygen in the air is low.

Care for your bones

Some women who have LAM may be at risk forosteoporosis if they have undergone permanent hormonal therapy such as oophorectomy or are receiving certain hormone therapy medicines. This is in part because many hormone therapies affect estrogen, and estrogen is important for keeping bones strong. While newer clinical guidelines do not recommend hormone therapies for the treatment of LAM, your doctor may order tests to measure your bone density if you have previously had an oophorectomy or are still on hormone therapies for other conditions. If you have lost bone density, your doctor may prescribe medicines or calcium and vitamin D supplements to prevent more bone loss.

Pregnancy and birth control planning

Because hormone changes during pregnancy can worsen LAM, it is important to talk to your pulmonologist and obstetrician before you get pregnant.

Most doctors don't 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.