What is LAM?

LAM, or lymphangioleiomyomatosis (lim-FAN-je-o-LI-o-MI-o-ma-TO-sis), is a rare lung disease that mostly affects women of childbearing age.
In LAM, abnormal, muscle-like cells begin to grow out of control in certain organs or tissues, especially the lungs, lymph nodes, and kidneys.
Over time, these LAM cells can destroy the normal lung tissue. As a result, air can’t move freely in and out of the lungs. In some cases, this means the lungs can’t supply the body’s other organs with enough oxygen.

Overview

There are two forms of LAM. Sporadic LAM occurs for unknown reasons. LAM also can occur in women who have a rare disease called tuberous sclerosis complex (TSC). Women who have TSC often have a milder form of LAM.
About 50 percent of women who have LAM develop pneumothorax (noo-mo-THOR-aks), or collapsed lung. In this condition, air leaks out of the lung and into the space between the lung and chest wall (the pleural space).
A collapsed lung can cause pain and shortness of breath. Sometimes one lung will collapse over and over again. Pneumothorax is a serious condition. It usually requires treatment and might be life threatening.

Normal Lungs and Lungs With LAM

Figure A shows the location of the lungs and airways in the body. The inset image shows a cross-section of a healthy lung. Figure B shows a view of the lungs with LAM and a collapsed lung (pneumothorax). The inset image shows a cross-section of a lung with LAM.

Many women who have LAM get tumors called angiomyolipomas (AN-je-o-my-o-li-PO-mas), or AMLs, in their kidneys. Women who have LAM also may develop:

• Growths in other organs, including the liver and brain
• Large tumors in their lymph nodes
• A buildup of fluid in their chests, abdomens, or pelvic areas

Outlook

LAM has no cure, and the disease tends to worsen over time. How quickly the disease worsens varies from woman to woman. LAM may lead to death from respiratory failure. Lung transplant is a treatment option for women whose lungs have been damaged by LAM.
Not long ago, doctors thought women who had LAM wouldn't live more than 8–10 years following diagnosis. They now know that some women may survive longer (as long as 20 years following diagnosis, although this is rare).
Doctors have learned a lot about LAM in recent years. They're now able to diagnose the condition earlier. Support services also are now available to help improve the quality of life for women who have LAM.
Researchers continue to explore and test new treatments for LAM.

I have decided to start a blog about my life with a lung disease. I know I have a long road ahead of me but I also know I have A LOT more living to do! I will give a brief explanation of my health to date for those of you that want to follow me through this journey.
In 2005 I was told by my Dr that I had COPD (Chronic Obstructive Pulmonary Disease) but they didn't understand why with my age (33 at the time) and not smoking. In 2008 my local Dr sent me to Duke University to meet with the Lung transplant team only to determine after a week I was not ready (after many prayers)! This goes to show only the man upstairs knows the full plan. In 2009 I got a call from my local lung Dr that said he thought I had been misdiagnosed. He had been looking over my CT scans and thought I had a rare lung disease called Lymphangioleiomyomatosis (LAM). It affects women in there child bearing years and they think it is caused by estrogen. In October of 2011 I got really sick with a lung infection and my Dr advised me to stop working because my body was so wore down that I couldn't keep up with work, family and take the care I needed of myself. In 2012 I had a lung biopsy to try to determine if I did have LAM. The biopsy didn't show LAM cells but was told they were not ruling it out that if I had an open lung biopsy they could give me a 100% diagnosis. There are many risk that come with having an open lung biopsy because my lungs have so many cyst in them (honeycomb affect) so I have decided at this stage not to have one. In June of 2013 I went to my local lung Dr for a check up which included the normal breathing test and walking test. I was told I now need oxygen and that my Dr is reaching out to the Duke transplant team because my numbers have drop to that level required to possible be put on the transplant list after evaluation. My hopes in doing this blog are not only to keep my friends and family up to date on my journey but I hope God uses me to help other young ladies that may be going through the same issues I am.  If I have learned anything it is God is in control and he works through these awesome Dr's that are trying to make our quality of life better <3.