20 Years Ago Today Denise's Cocci Journey Started

20 years ago today, July 18, 2005, Denise started 8 1/2 months in hospitals struggling for life with an extreme case of disseminated coccidioidomycosis (Valley Fever) with meningitis. There were several times we expected her to die. Just about every organ system in her body was affected, and she's disabled with the lifelong secondary effects of the cocci infection. Not a day (a waking hour?) has gone by that we haven't made some decision with regard to her condition and all she's been through. Yet here she is still, and we're grateful for all of you. Thank you, medical professionals, family, neighbors, church siblings, PCS coworkers, school families, friends and strangers that, through your work, knowledge, expertise, meals, childcare, errand-running, words, prayers and all other expressions of caring, got me, Denise, Gracie, and Jacob through the crisis then and these 20 years since. 

 Merry Christmas Eve from the Williams household! We wish you blessings in the coming year! Denise had another year of thriving and stayed out of the hospital. She loves being involved with the women’s ministry events and art/craft events at our local church. Being local is a good thing, because as has been the trend for years, the fatigue level and other issues secondary to the disseminated Valley Fever she started with in 2005 keep her from being too active. There are lots of other issues, too, with the skin lesions still being pesky. It's disheartening to be several years off of voriconazole and a few years on fluconazole, but still experiencing all the skin issues. I missed yet another Cocci Study Group (this time in San Antonio TX) due to chaperoning my school's 8th grade East Coast trip.

 

 Merry Christmas Eve-Eve! Though the Valley Fever infection started July 2005, Denise still has significant fatigue and a laundry list of issues secondary to the disseminated cocci. In particular, fatigue and lots of skin lesions even though she switched in 2020 from voriconazole (puts her at increased risk of skin cancers) to fluconazole. The PDT (photodynamic treatment) she started last year continued this year, but doesn't seem to be helping much. Several sites frozen off, several biopsied (all benign, so, yay!). I did not attend this year's Cocci Study Group in Tucson AZ, and haven't been for several years. But reading the agenda & abstracts, doesn't seem to be much going on with a cure nor a vaccine. 

Christmas 2022

  We couldn’t get a “Christmasy” family photo and get cards printed on time. So here's a poinsettia that Denise painted, and the rest is our poor excuse for a Christmas card. We celebrated our 25th wedding anniversary this year. I thought I'd become a widower in 2005-2006 during Denise's marathon hospitalization from Valley Fever. So at this milestone I've got to express gratitude to all the family, friends, neighbors, church siblings, coworkers, medical professionals, and strangers that carried, prayed, and worked us through the crisis. You're part of why we could celebrate that anniversary! Denise is grateful for life, even with the lifelong secondary effects of coccidioidomycosis (the fatigue is real, as are the skin issues, probably from the years of voriconazole use before switching to fluconazole in 2020). Her dermatologist prescribed a course of PDT (photodynamic treatment). We hope that it starts to heal all the skin lesions. I did not attend the Cocci Study Group in Bakersfield so do not have a pulse on the latest developments. 

Christmas 2021 Update

 Merry Day-After Christmas! Denise stayed out of the hospital again this year & is living life with Valley Fever, having a big heart for and visiting with people that are physically suffering. The fatigue still persists, as do the skin issues, seemingly carried over from the long-term on voriconazole (she switched to fluconazole partway through 2020). This year's Cocci Study Group was done via webinar "from" Tucson AZ. A vaccine study in dogs was encouraging, no dissemination that they could detect. The prime dose and booster both need to be live (killed vaccine doesn't do anything). The possibility of a valley fever breath test is being studied, researchers are confident they can find biomarkers of cocci in breath. And researchers are trying to determine if there's a genetic predisposition to dissemination, based on a case of three generations of a Tucson family that had disseminated cocci with meningitis. A mouse study indicates there may be a genetic predisposition. I look forward to hearing about more on these in future study group meetings.

Merry Christmas 2020

 We wish you a merry, contactless, socially distanced, fashionably masked Christmas! Denise enjoyed a season of relative good health coping with valley fever. She started switched from voriconazole to fluconazole. We'd hoped this would correspond with the end of the skin issues, but she has a large growth on her calf that had to biopsied. This year's Cocci Study Group was cancelled due to COVID. Hopefully next year there will be a double-dose of good info to share.

 

Switch from Voriconazole to Fluconazole, COVID-19 & Cocci Study Group

Denise switched from voriconazole back to fluconazole February 27, 2020. The change is a result of increasing precancerous skin issues associated with voriconazole and her titers being undetectable for cocci for quite some time. The infectious disease doctor heard Denise's frustrations with the skin issues, the sun sensitivity that keeps her from participating in many outdoor activities, and they thought perhaps she could try the switch to something with fewer issues. We are a little nervous, as the cocci seemed to progress years ago when Denise was on fluconazole and so she was bumped up the ladder to voriconazole. But the ID doctor is ordering frequent labs early on, and if titers continue to be undetectable, the labs will be spaced out more. 

We received word today that the annual Cocci Study Group is being postponed from April until August due to COVID-19. Given Denise's change in meds, I'm very eager to attend and find out the latest in research, treatment, and possibly even vaccines & cures.

Christmas 2019

Merry Christmas! As I looked through the year's medical records & receipts I was again grateful that Denise continued her streak of no hospitalizations. Things were stable enough that I didn't feel the need to attend the 63rd Cocci Study Group at UC Davis (research seems to move at a snail's pace anyway). There are the usual frustrations and limitations that aren't going to go away until/unless there's a cure for Valley Fever. But the voriconazole is keeping the cocci under control and the doctor visits and labs have been an encouragement. We hope the trend continues in the coming year. And as always, we're grateful that Denise's health this Christmas is much better than back in Christmas 2005.

Merry Christmas 2018

Merry Christmas! We hope you’re enjoying a time of good health, happiness, and significance!

Denise got through another year, living life with Valley Fever, some limitations and much fatigue, but grateful for a season of relative stable health and being alive. Cocci titers look good, so no cause for alarm. No hospitalizations, just the usual meds and frequent doctor/specialist visits to keep her health as good as can be expected.

Merry Christmas 2017

As the year winds down, we're grateful for another year of life (especially compared to Christmas 2005). Denise's struggles continue, but we're grateful that she got through 2017 without a hospital stay. The Voriconazole is doing the job of keeping the cocci infection suppressed and keeping her alive, upright, and ambulatory. Merry Christmas!