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Jaime’s Story About LCH

Jaime Stelly - Jaime’s Story about LCH

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.

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.

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.

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.

The treatment for LCH is mild combinations of different chemo drugs depending on which parts of the body are affected and if it is only a single system (such as mine) or if multiple systems and organs are involved. I have been on chemo twice now. The first time was for 30 straight months and this last time was for 14 months. I have been chemo free for 6 months now but do have to have regular check-ups and testing done. I was told at the age of 27 to get my affairs in order. I am now 35, the mother of a 15 year old hormonal teenage girl and a 10 year old Asperger’s (a functioning autistic) son. I am Cajun, I am stubborn and I don’t give a DAMN about numbers! Everyday I keep pushing forward, taking names and kicking ass.

 

Just because they have a medical degree doesn’t always make them right!

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