I wasn't sure which message board section to put this under but here goes: My daughter was diagnosed with HIV in February. The hospital released her and the health dept was supposed to pick up her care. They dragged their feet and put off appts for a month and a half. She woke up with a severe headache then started having seizures. In the emergency room, she had a CAT scan and found she had hydrocephalus. Three surgeries later and many ups and downs we were all hopeful-the West Coast AIDS Foundation was ready to help her the minute she was released and she was set with the Ryan White Waiver her in FL. The morning of April 25th, she again woke with a headache in the hospital and while the nurse was telling her they were sending her for another CAT scan, she again started seizing. Her airway became compromised and they had to put her on a vent. Once stable they sent her for a CAT scan. While on the CAT table her stats dropped and the CAT scan told the whole story-her ventricles had herniated causing brain death. We turned off the vent just after nidnight on April 26th. I held her while she slipped away. If only she had been diagnosed earlier. We don't know where or when she contracted it but have been told her stomach problems she had had for a while may have been early signs that were never picked up on by emergency rooms. She leaves behind a 9 year old son, 3 sisters, and 4 nieces and nephews-not to mention a Mom(me), a stepdad who loved her so very much, and a Dad who have already lost our only son 3 and a half years ago. I get through one day at a time and keep very busy. I wish you all the best for continued health and hopefully one day a cure! Lots of love and hugs, Patti
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