Vicki's journey with HLH as told by her daughter.
"In June of 2015 she started with a simple cough and a swollen ankle. She was admitted into the hospital and doctors thought it was a heart issue. She was discharged and sent home with a heart monitor. Unfortunately the next day she was let go from her job of 48 years. She continued with a cough and was treated with antibiotics. All heart testing came back normal. She still continued with a cough. On August 9 2015 she called asking me to take her to the ER. They did a CT of her chest and found she had nodules on her lungs. They did a biopsy of the nodule and basically came back inconclusive. Doctors thought it could be from her having tuberculosis in her teen years. They finally brought a pulmonologist in to see her. She had fluid on her lungs that needed to be drained. This happened several times. She had 2 bronchoscopes done. A bone marrow biopsy was also done. Every single test came back as “inflamed”. Then they did an open lung biopsy. That also came back as “inflamed”. During all this testing, she was in and out of the hospital and on several different medications and had several doctors. Her ferritin was 50,000. Her platelets were low. She was intubated due to an oxygen level being in the high 70s. Her blood pressure at one point was 70/30. She was in and out of ICU. Finally a resident locked himself in a room with his medical books and finally figured out my mom had HLH. Started chemo and steroids. She did get a bit better. All of her blood levels were basically zero so they started neupogen shots which caused her blood levels to return to where they should be but the disease also refueled and on November 9, 2015 at 6:30 pm my best friend, my beautiful mom passed away. She was only 67.
The doctors taking care of her told me she was only the 2nd person they had seen with HLH as an adult. They never did find an underlying cause. "
