Sue Levy and her family on vacation in Buenos Aires fall 2013. (Courtesy)
By Dr. Annie Brewster
What if you were suddenly diagnosed with a potentially fatal disease just when your life, work and marriage were on track and your plans to start a family were underway?
That’s what happened to Sue R. Levy.
In 2008, at age 37, she was diagnosed with Pulmonary Lymphangioleiomyomatosis, otherwise known as LAM, a rare, chronic, progressive lung disease in which the lungs fill up with cysts. The result is gradual destruction of the normal lung architecture, compromised breathing and, in many cases, an eventual lung transplant — a procedure with major risks. The LAM Foundation reports 10-year survival, following a lung transplant, at 47 percent.
Fueled by estrogen, LAM primarily affects women in their childbearing years. With only 1,300 documented cases in North America, LAM is poorly understood; currently, there are a few experimental medications in use, but no proven treatments exist.
Prior to the diagnosis, Sue, who lives in Brookline, Mass., had a successful career as a marketing executive, she was happily married, and she and her husband had decided to have kids. Though they struggled with infertility, undergoing six unsuccessful rounds of IVF, Sue still felt that this would work out eventually.
“My whole life I thought the way the world worked is that if you were a good person and you worked hard you could avoid bad things,” she said. LAM changed everything.
Suddenly, Sue was forced to redefine herself as someone with a chronic disease and squarely face her own mortality. In addition, she had to let go of some of her dreams, notably, her desire to get pregnant, as the high levels of estrogen associated with carrying a child would accelerate her lung destruction.
Initially, she was angry. But the disease helped her focus on what she really cares about: she went to school to study nutrition and became a natural foods chef. In 2011, inspired by her own healthier lifestyle changes, she quit her marketing job and started Savory Living-Healthy Eating, a nutrition and health company that provides online healthy eating and cooking classes.
In addition, Sue and her husband now have two young daughters, conceived using egg donors and a gestational carrier.
Listen to Sue’s story here:
From ‘Healthy’ To ‘Terrifying’
If you had asked me before my LAM diagnosis I would have told you that I was a healthy person, that I am living a healthy life. There isn’t a disease in my family. This is something I don’t have to worry about and I’m doing great. What was so interesting is that the signs couldn’t have been clearer that I wasn’t. I was heavier, the energy wasn’t great. I had a lot of digestive problems and I faced infertility. But I just thought that was the way life was. I had had a lot of pain and it felt almost like this boa constrictor was around my midsection squeezing my rib cage.
So I went to the doctor and he said ‘You know I’m worried that maybe you have a blood clot in your lung, I want to go get a CT scan.’ And they did the scan and on our way back to our house I got a call from the doctor and he said ‘You need to come in right away,’ and I said ‘Oh, is it a blood clot in my lung?’ And he said no. And I said ‘Oh great!’ And he said ‘No, you need to come in right away.’
We got into the office and he actually said to me because he knew we were trying to conceive, and he said, ‘Life as you know it is about to change considerably. Continue reading