Michele's Long Recovery

In June 2022, our sister Michele was diagnosed with an extremely rare form of fungal meningitis; writing this story did not come easy, but the time has come to reach out to family, friends and the community for some help.

For several months, Michele was struggling with severe ‘headaches’ that kept getting worse. Eventually they got bad enough that she knew she needed medical aid. However she had just switched jobs so she was without insurance until July 1st and she knew she couldn’t afford to go to the hospital or see a Dr. without insurance. But the intensity of the pain was more than she could bear. She needed medical help and soon.

June 10th kicked off what felt like the longest 7 days we’d ever experienced. I dropped her off at the ER in the morning, and got a call no more than 20 minutes later that she had passed out and had a ‘seizure-like episode’. She was admitted to St. Joseph’s hospital in Eureka and discharged 2 days later with enough pain medication to be considered stable, but no answers. The next few days brought only more pain and more tears. Regardless of the number of pills taken, the pain would not go away. Six visits to three different Emergency Rooms between two states, just to be sent home with a plethora of pills that had no effect. There were 911 calls and ambulance trips, and worst of all- no answers.

Emergency room visit #6 in Eureka was the first of many, many, many spinal taps Michele suffered through, but they at least resulted in the first diagnosis. We all felt relief from having an answer, but so much grief from the horrible answer that it was. The pressure and pain she experienced was from the disease cryptococcus gattii- a variant of fungal meningitis that is so rare and so severe, not a lot of doctors have any experience treating patients with this disease. The fungus started in her left lung and is still there. It seeped into her spinal fluid, which breached the barrier and entered her brain. It was apparent that she needed to be treated by specialists, given the unknown and life-threatening nature of this disease. However, her insurance wouldn’t kick in until July 1st. UCSF had accepted her as a patient, but they wouldn’t admit her without insurance. The next several weeks felt like a blur and yet the days were dragging on at the same time. Her pain was up and her heart rate was down. The doctors and nurses did what they could, but they knew she needed to be at UCSF medical center with a team of specialists to get the care and treatment she needed.

At midnight on July 1st, Michele was life-flighted down to UCSF Medical Center, where over the next week she was observed and the doctors did what they could to treat her pain. She was in and out of consciousness and on July 7th she lost all ability to communicate and had to have emergency brain surgery. The surgeon removed a portion of her skull to allow her brain to swell- what they believed to be the main cause of her pain. In addition, a temporary drain was placed in the front of the brain to remove all excess fluid. After 21 days in the hospital at UCSF they finally transported her back home to St. Joes Hospital. She was discharged one week later on the condition that she return to the hospital daily for several hours to receive a harsh anti-fungal IV drip medication until August 18th. She also was prescribed anti-fungal pills that she had to take for 18 days. Her out-of-pocket cost for 18 days of pills was $1,000.00

She seemed to be doing so much better, but within a short time the same symptoms started creeping back. Now she sleeps all day, we’ve seen signs of speech and hearing loss again, the head pain has returned, and she has extreme nausea. We thought and hoped we were out of the woods, but my mom just took Michele back down to UCSF on August 27th and now she is scheduled to have another brain surgery to put a permanent cranial shunt in. We'd hoped she could avoid the life-long shunt at all costs, but no such luck.

Nobody enjoys asking for financial help. But based on everything Michele has been through, some bills covered by insurance, some not, we’re asking for any help anybody can provide. Her medical bills alone might clock in close to $1 million and her insurance only covers 40%. She has been out of work since June 10th and even with temporary disability, there isn’t enough to pay her day-to-day living expenses. We don’t know if this disease is going to be with her for life or if it will be gone after another year or so. She wants to be well and get back to work, even just part time so ANY amount of money that can be provided will help enormously. If anyone has questions or just wants to reach out for any reason, please don’t hesitate to DM any of us. Thank you in advance, this hasn’t been easy for anyone.