Something New to Learn Every Year at LAMposium

Author: Editor


3-Carol.jpg Every woman has a story about her path to a LAM diagnosis. My story actually began with a diagnosis of mononucleosis. In late 2011, I was feeling so tired and weak that I could barely stand up. After a series of blood tests, my doctor sent me to the hospital, but the ER sent me home after the mono diagnosis. At age 48, jokes ensued.

But my doctor was convinced something additional was wrong, and after further testing and consultation with an endocrinologist, he diagnosed me with adrenal insufficiency, aka Addison’s disease. The abdomen CT he had ordered showed some lung nodules that he wanted to re-check in three months.

Fast forward to February 2012, when I was feeling pretty well after adjusting to the daily corticosteroids, that I will take for the rest of my life. I was having some unusual pain when lying on my right side, but I brushed it off and continued on. The surprise that surfaced on my follow-up scan was a large pleural effusion on my left side.

Next up was a thoracentensis. Thankfully, my pulmonologist was familiar with LAM, so that was his working diagnosis after seeing that the fluid was chyle. One important thing he told me was to stay off the Internet. To be certain of the diagnosis, he sent me for a lung biopsy. (My surgeon said he’d seen a chylous effusion after a gunshot wound, but I was pretty confident that wasn’t the case with me.) It was during my nine-day hospital stay that I received the official LAM diagnosis on March 28, 2012. My pulmonologist was on vacation, so his partner gave me the news and the “you have ten years” line, as if that was going to make me feel better.

Within a week, I saw Dr. Dilling at the Loyola LAM Clinic. He referred me to the LAM Foundation. One of the most important phone calls I have ever made was that first call to Cincinnati. Sally Lamb (then the director of patient services) asked me if I wanted to attend a special conference known as “LAMposium” which was to be held just a few weeks later. I felt I wasn’t ready, either physically or emotionally, to face this unknown conference. But the next year I was, having had some time to process the diagnosis and meet some wonderful women through regional events. My husband Dave and I have attended three conferences since then, and have found them to be extremely worthwhile.

LAMposium is an educational conference. You learn about new research, clinical trials and studies, what test results mean, how to manage symptoms. LAM is an encouraging conference. You see so many people donating their precious time, talents, and resources to finding a cure. It is bound to happen soon! And LAM is a social conference, where you connect with dear friends and meet some of the most wonderful people, who all speak the same “LAMguage”…there is no need to have to explain “pneumothorax”, “chyle”, “PFT”, “FEV1”, etc!

My husband, Dave, finds that attending LAMposium helps him too. For him education is power, and learning about the disease, how it affects me on a daily

basis, as well as how other patients spouses and loved ones cope and live with LAM, is helpful to both of us. He loves to speak with the researches to find that they are as passionate about finding a cure as we patients and our friends and families are.

We both encourage you to attend the next LAMposium this September – looking forward to seeing you there!