What to Expect

What happens after your loved one is diagnosed with LAM?  Depending on the progression of the disease, changes in daily activities and mood may occur.

Increasing Dependence on Family/Friends for Help

A woman's ability to participate in daily activities such as going to work, running errands and exercising may not change. In other cases, there may be limited mobility and supplemental oxygen may be required to help with breathing.

We know that LAM is a progressive disease, but its progression is generally slow.  In some women, however, the disease may progress at a more rapid rate.  Doctors are working to find indicators that will help determine who will have a rapid rate of progression and who will progress more slowly.  Whether the disease progression is slow or rapid, lung function tends to decrease over time, and many LAM patients will, at some point, require supplemental oxygen.  In severe cases, lung transplantation is considered as a last resort.  While many women with LAM add several years to their lives through lung transplantation, it is not a cure.

Limitations in Travel

Travel restrictions may be recommended for some women with LAM. In particular, traveling to faraway places where medical help is not readily available may not be advisable. In addition, if a woman with LAM has recently had a lung collapse or feels she may be experiencing one near the time of travel, she should talk with her doctor before traveling by plane.

Feelings of Anger, Isolation and Despair

Women diagnosed with LAM typically experience a wide range of emotions such as anger, denial, shock, grief, helplessness, confusion, despair, sadness, or fear.  None of these feelings are uncommon and many women experience one or all of them during various stages of the disease.  To help them cope with these emotions, be sure to let your loved one know that you are there to talk to or just listen.

Problems With Intimacy

It is important to understand that LAM may decrease intimacy in a relationship. Women diagnosed with LAM often experience fatigue and increased anxiety. Don't be afraid to ask what your partner feels comfortable with and be open to exploring new ways to be intimate.