Bobbie’s mom and her courageous battle with HLH.
“We lost my mom to HLH on august 3 at 2 am. She got sick in April, after months of begging drs to look into her case, she was admitted to the hospital end of May. They noticed that she was immunocompromised and they did a bone marrow biopsy that showed myelofibrosis, also her CMV count was high they started her on antibiotics. Her fevers and chills and sweats were happening 3 times a day. After another BM biopsy dr ruled out cancer but still couldn’t diagnose her with anything and couldn’t figure out why she was so sick.
After she collapsed ( heart rate over 160 ) we begged them to test her for HLH, after doing our research and noticing that all her numbers are meeting this criteria. The dr agreed and after 1 day they diagnosed her with HLH. But didn’t know what was triggering it. So they started her on chop chemo and dexa, because she was so weak, this was in July. She got better a lot better after that. Then on July 22 she was sent home( but dr didn’t send her meds to the pharmacy ) so the next day she got fevers again. We took her straight to UW ( a different hospital as per her drs request) however the new hospital didn’t have her medical records from the previous hospital. So they wanted to start her on all new tests . We told them she had HLH but that wasn’t enough they wouldn’t give her the routine treatment she was on until they got her results from the other dr. 3 days later her condition deteriorated ( her ferritin was at 45000. On august 2 the dr decided to aggressively attack HLH with chemo. But she was 2 weak. He gave her 3 doses of chemo that night. Her heart stopped at 1 am.
We miss her every day.”
