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The Day I was Diagnosed With a Rare Lung Disease

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I was unofficially diagnosed with a very rare lung disease, lymphangioleiomyomatosis (LAM) in mid-May a few years ago at a pulmonologist’s office in Atlanta. It all started with a pesky cough that just wouldn’t go away, so I visited my primary care doctor. He wasn’t available that day, but his RN on staff was and she felt that something just wasn’t right when she heard my lungs so she suggested getting a CT of my chest in order get a closer look.

Ordinarily, a persistent cough would not lead to a CT right away, but since I’d had a history of unexplained lung collapses, the RN felt it would be prudent to investigate further. The CT results concerning, so I was asked to follow up with my pulmonologist who suspected right away that I had LAM, but confessed that he had little knowledge of this rare disease.

Prior to this, my right lung had collapsed back in 2003 and 2006, both for which I had to undergo surgery. At the time, my doctors could not explain why this was happening. During the 2006 procedure, I had a lung biopsy done to test for this very same disease and the results came back negative, showing no LAM cells.

You can imagine my complete and utter shock when this doctor told me that the CT showed I had LAM and the disease had progressed.  Back in 2003 I had three cysts on my lungs, in 2006 I had a handful, and in 2012, there were too many to count.  “F***” I said out loud to him and he smiled awkwardly, offering no words of comfort — not that I would have paid attention. Is there an etiquette to how you respond to a life-altering diagnosis? If there is, then I clearly missed that lesson on conventional norms because during that visit, all my filters came undone and  I couldn’t get a thought out without inserting expletives.

So naturally, the first thing that came to mind after this doctor announced that he suspected I had LAM was how did this get missed? I unleashed my wrath on him. After reigning in my misdirected anger, I inquired about my outlook. He prefaced his response by admitting his limited experience with LAM because it’s so rare. It was his understanding that life expectancy was an average of about five to 10 years post diagnosis, but there were some promising studies out there.

He continued on about the clinical trials and research, but really, who could pay attention after his announcement of life expectancy? Besides, I was too busy working out the numbers in my head. Was it five years post diagnosis from the 2006 biopsy or 10 years from the 2003 lung collapse? What? This word problem made no sense and my computation skills failed me.

He did mention two things that stayed with me. First he said, “Don’t believe everything you read on the Internet about this disease. In fact, stay away from googling it because there’s a lot of misinformation out there.” Next he said, “Don’t think about having any more children because pregnancy is known to cause progression with LAM.” If you’re anything like me, when someone tells you not to do something, that “thing” is amplified and it’s all you think about doing, which is precisely what happened. I got on the Internet as soon as I got in the car, all the while, thinking about having a third child, which was not really even on my radar screen. It’s like being on a diet and being told not to think of ice cream. To put it this way, for a period of two weeks, until I flew out to see a specialist at the Cleveland Clinic, I binged on ice cream. All. Day. Long.

Did I mention my husband was not at this initial visit? I told my husband to skip this one. Between week-long hospital stays for surgeries, doctors appointments, follow-ups and more doctor visits, we really didn’t expect to learn anything new about my lungs that we didn’t already know.

After that doctor visit, I decided not to meet at home where the nanny was watching the kids. We didn’t want to give the kids any cause for worry, so we decided to meet at our neighborhood Panera for lunch, because where else do you share this kind of news?

We stood in the Panera parking lot while dissecting the hows and whys, and sprinting through the stages of grief, not in any particular order. He was in shock, and couldn’t believe this was happening. I was angry, and blamed all the doctors for not figuring it out sooner. Maybe we should have sought a second opinion after the lung biopsy came back negative, or continued on with investigating lung collapses, and so on. The more we talked, the more we started to become aware of the gravity of this diagnosis, until eventually the back and forth slowly died down, making way for some much needed tears for both of us.

My husband and I flew up to the Cleveland Clinic two weeks later where I received the official diagnosis. By that time, I had binged enough on Internet research to know I definitely had LAM. The game changer for me was in the numbers. It turns out life expectancy with LAM is actually an average of 20+ years post diagnosis, instead of five to 10.  I like those odds way better.

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Getty Images photo via coffeekai

Originally published: December 29, 2017
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