LeanOnUs

At age 27, I was stabbed by my abusive ex-husband. The stabbing punctured my lung causing it to collapse and a chest tube had to be put in place. When the doctor’s were in trying to repair the lung, they thought things looked off kilter so decided to do a biopsy while they were already in there.

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The pathology dept at the hospital where I was couldn’t make heads or tails of what they were looking at. (I live in the Houston Texas area.) They then sent the biopsy tissue onto Baylor, the Mayo Clinic in Phoenix then onto Duke University. In the meantime, the doctor treating me in the hospital said it was a toss up between lymphangiomyamatosis or idiopathic pulmonary fibrosis. They started treatment for the latter which is massive amounts of steroids, oxygen and gamma interferon injections. They told me to get my affairs in order; will, child custody situation, etc and gave me a prognosis of less than 2 years.

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After 18 months(!!!), we finally got 2 different answers from the Mayo Clinic and Duke University. One was differential lung disease, the other was eosinophilic granuloma, the historic name for Langerhans’ Cell Histiocytosis (LCH). LCH is a rare cell disorder where the body makes too many histiocytes (a type of white blood cell). The cells produce in such mass quantities that they start to cause organ failure and can only be slowed with chemo. It doesn’t stop it from happening, just kills off excess cells and slows down how fast they are reproducing.

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I was hospitalized shortly after that and after having been in the hospital for a week and never once having seen my doctor, I checked myself out of the hospital, found a new doctor and got affirmative results. I immediately began being weaned off the steroids, taken off the gamma interferon injections and sent to see a paediatric oncologist at Texas Children’s Hospital as LCH is extremely rare in adults (1 in 1.5 million). It’s about 1 in 600,000 in children, most under the age of 10 and most of whom do not live to see that number.

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