Saturday, July 08, 2017

20 Years Married, Living 12 With Cocci

Last week Denise & I celebrated twenty years of marriage, which started July 5, 1997. And for about the last twelve years, she's been dealing with cocci. We're grateful for another relatively healthy season with no scares of reactivation (the voriconazole continues to do a good job), though there are of course the usual issues with extreme fatigue and other goodies that go along with having Valley Fever. And since the last post, she's had a surgery to follow up on abdominal issues, and an emergency room visit-turned-hospitalization for a kidney stone (9mm, ouch!). She said the pain level was right up there with giving birth.

I and my aunt will skip attending this year's annual conference about Valley Fever. Spring is usually when the Cocci Study Group occurs. But every ten years they hold off until summer and do a much larger event. The 7th International Coccidioidomycosis Symposium at Stanford will hopefully bring good news about advancements in research and treatment.


Saturday, December 24, 2016

Happy Christmas Eve 2016

We're all smiles in this photo, partly because of the joy of attending our neighbors' wedding, and partly because of the joy of another year of life. For sure, Denise still has ups & downs as she does life with issues secondary to her Valley Fever infection and the Voriconazole that keeps the cocci that causes it in check. But still much better than her first "Christmas with Cocci" photo in 2005
One of the more amusing things we're grateful for: Denise's doctors finally were able to get it through to the our insurance company that the protocol for cocci meningitis is lifelong medication. So our insurance company approved our request for Voriconazole (they were trying to revert to the much cheaper Diflucan, which did not work for her). And the authorization is valid from 12/22/2016 to 12/31/9999 (yup, several thousand years into the future), and the number of refills is 999. So, yeah, that should probably prevent her and her doctors from having to deal with the red tape again when going through the insurance company mail-order pharmacy.

Friday, April 08, 2016

2016 Cocci Study Group - Fresno CA

I'm in Fresno for the 59th annual Cocci Study Group at the UCSF Fresno Center for Medical Education and Research. We're learning news about research, cures, and funding for Denise's disease. My aunt (the RN) and I attended all the sessions over two days, covering clinical cases, lab research, ecology, epidemiology, environmental, occupational, and other aspects of Valley Fever. Highlights:
  • Viamet is a drug that has received "Orphan Drug Status" for the treatment of cocci.
  • Sertraline (Zoloft) might be an alternative therapy that can be used in addition to fluconazole because it seems to have antifungal properties.
  • Cocci might cause sarcoidosis. This was interesting to me because Gracie recently read Edgar Allen Poe's "Masque of the Red Death" for a class assignment, and sarcoidosis was one of the possibilities for the strange disease in the story.
  • A new drug, APX001-A from Amplyx is active against cocci in vivo and in vitro with mice and warrants further study (however mice metabolize things differently than humans).
  • The very promising drug Nikkomyciz-Z is still moving frustratingly slow to get to market, but now NIH is helping. It's fungicidal in mice, and evidence of activity in mice is highly correlated with activity in human cocci. It's also had good results when used with several pet dogs. Trivia: Nikkomycin study was started up in Nikko, Japan, hence the name.
  • Cocci is on the federal Commerce Control List section 1 dealing with human pathogens AND also on the CDC list of bioterrorism agents. It can be found outside the U.S., so it's pointless to ban it. And if a lab has any students from countries on the list of states sponsoring terrorism, the lab can get into deep trouble. So the professionals attending this conference voted to recommend cocci be removed from both lists so it can be mailed to labs around the country, facilitating research.
  • Several prisons are in cocci-endemic regions, and in recent years the justice system has stopped sending certain inmates at high risk of contracting cocci to ten prisons in endemic regions (particularly Avanal State Prison and Pleasant Valley State Prison outside Coalinga). 
  • There was a study about Valley Fever among Native American Indians and Alaskan natives. Very few cases in these groups, but they are three times more likely to disseminate, four times more likely to need hospitalization, and five times more likely to die compared to whites with cocci. Might be due to environmental exposures rather than genetics. There are lots of Native Americans in endemic regions. But studies can't lump all American Indians together because they're not genetically homogeneous. A point on the hospitalization rate: IHS (Indian Health Services) doesn't take payment, unlike everyone else's hospital/insurance, so American Indians might be more likely to admit themselves since they don't have to pay.
My head is still swimming as I try to digest all the brain-numbing information.
Speaking of digesting we ate a raging-tasty dinner at Diana's Persian Armenian Cuisine. Fresno becomes FresYes when you eat there, look the place up.

Thursday, December 24, 2015

Merry Christmas 2015

Though the "new normal" that is life with Valley Fever never seems normal, Denise is much better than she was during her first "Cocci Christmas" in 2005. We got through a year without her needing a hospitalization, surgery, MRI, CT, or spinal tap. It's an odd but good Christmas gift. Merry Christmas!

Tuesday, August 11, 2015

Ten Years Ago Life Changed

It was ten years ago this summer (starting July 18, 2005) that Denise went into the hospital and our lives changed. Though her hospitalization lasted "only" eight and a half months, not a day (or an hour) goes by that we don't feel the impact of her living with primary and secondary damage done by her Valley Fever infection. There are places we'd like to go & things we'd like to do but can't include Denise. There are other places we have to go & things we have to do that we'd rather not (usually involving doctors & procedures). There are things we have to pay for... the medication, doctor visits, procedures, supplies, adaptive devices... that take away from more enjoyable things we'd rather pay for. There are invitations we have to turn down due to a combination of fatigue level, Denise not being able to drive herself or the kids under some circumstances, and our schedules. 

As frustrating as these and other things can be for me and the kids (who as they're getting older are increasingly aware of and feeling the lingering challenges), they are most difficult for Denise. She bears the scars, physically and emotionally, from having been near death for so long, having a trach, feeding tubes, having compromised function or damage of lungs, heart liver, kidneys, GI tract, brain, and other organs. The antifungal med that she's on to suppress the cocci (Voriconazole) puts her at a higher risk of skin cancer, so she usually avoids outdoor activities & events (and says she thinks she looks pale, I think she's a knockout, however). And then there's the stink-eye she sometimes gets from people when she, as a relatively healthy-looking person on the outside, parks in the handicap spot. She's said sometimes it was easier when she looked ill, still needed the wheelchair, and was tethered to a feeding tube because at least people could see something was definitely wrong. At the cocci study group I attended a few months ago, a presenter addressed the social/emotional effects of cocci, which isn't something I hear too much about. But those have been difficult for Denise more than the physical sometimes. The combo of cognitive, hearing, and vision impairment, however mild, leads to a lot of stress in social situations. Fatigue is a biggie... the levels sometimes also result in feelings of alienation because she can't often volunteer at the kids' school & church youth groups, or be present with us for many events. So between the physical & emotional/social stuff, she sometimes feels like a bad mommy/wife/friend/neighbor. 

But then we can contrast those negative things with the very good things. I got my wife back, the kids got their mom back, the parentals got their daughter back, the siblings got their sister back, the neighbors got their neighbor back, and the pattern goes on. We're grateful for the many medical professionals of all functions and specialties (one of whom is in this photo from our summer road trip) that helped save her life. I'm grateful for their hard work, dedication, skill, compassion, on and on. We've been able to experience the care, love, and support of so many people that carried us through the crisis that it amazes me (and humbles me, as I was usually the "go to" guy for things and suddenly needed to rely heavily upon others). Going through hardship has a way of helping us more authentically commiserate and minister to others that are suffering. The most recent lab titers show that the Voriconazole is suppressing the cocci effectively (protocol is that she'll be on Voriconazole for life since her case of cocci involved meningitis). We don't know if or when her cocci will recur, but we're glad to have had a long season of relative stable health. And the list of things I'm grateful for goes on and on (and should probably be much longer, now that I look at the previous two paragraphs of downer items). 

For sure, though, ten years living with a disability (and being the spouse or children of someone disabled) certainly presents many opportunities to deepen our reliance upon God. And that growth is a good thing indeed.

Tuesday, April 14, 2015

2015 Cocci Study Group - San Diego CA

Last weekend I and my aunt the nurse attended the annual Cocci Study Group, held this time at UC San Diego. Here are some of the more interesting tidbits I took away:
  • There was no presentation about the status of prospective Valley Fever cure Nikkomycin Z. I assume development is still mired by lack of funding.
  • Cocci appears to worsen the course in patients with preexisting asthma. Dr. Royce Johnson stated that he thinks cocci can cause asthma. He also thinks we all have asthma, but some get to the point of wheezing before others.
  • A soil biologist at Long Beach State said that cocci doesn't grow in watered, fertilized, churned soil, so perhaps farm workers aren't at higher risk after all. But Washington state vineyards are opening up and increasing cocci cases are being reported.
  • A Seabee operating a Caterpillar tractor on Kodiak Island in Alaska got cocci. The tractor came from Lemoore Naval Air Station in Lemorre, CA (a cocci-endemic region).
  • Erin Gaab  from UC Merced gave a moving presentation about the emotional & psychological impact of cocci on patients, families, caregivers, and children. We give lots of support to children with cancer, not children with cocci.
  • Dr. Royce Johnson commented that normal people don't have symptoms when they inhale arthrochonidia. People have cocci because they have subtle genetic predisposition. Cocci is a genetic condition with fungal implications (someone once said TB is a social condition with medical implications).
  • Per study by Dr. Janis Blair and another by Dr. Royce Johnson: Diabetics didn't get cocci more than others, didn't disseminate more than others, but if they did disseminate, they died more than others. So controlling sugar impacts survivability (there's a higher risk of contracting cocci for diabetics, as well as certain ethnic groups, and people with immune-compromised conditions).
  • If you've been infected with one strain of cocci, you'll likely be immune to the other... there seems to be cross-protection.  
  • There was a cocci outbreak 2011-2014 among workers in an eastern San Luis Obispo county solar project. Most were electricians (33%) equipment operators 26% and laborers 14%. That was surprising because it was assumed that the workers closer to the dirt would have higher rates of infection. Dust levels were reportedly high. 60% of workers said they never wore respirators on site. The recommendation was to wet soil down more during construction... during a drought. Someone said that they wonder what's going to be done about the California High Speed Rail Project that is supposed to go the length of the San Joaquin Valley, where so many cocci spores live.

    I look forward to the 2016 meeting that has been scheduled for April 9, 2016 at UCSF Fresno Center for Medical Education and Research.
     

Wednesday, December 24, 2014

Merry Christmas 2015

Merry Christmas!
Denise is recovering very nicely from the summer's surgery and is back to normal activity (as much as her energy level will allow), minus any heavy lifting. The most recent CF titers for cocci came back negative, and her liver labs are at the high end of normal. So the Voriconazole is doing a nice job of suppressing the cocci and not impacting her liver as much as in the past. And so because those two points are favorable, Denise was spared from having to undergo a spinal tap & MRI to see what the cocci might be doing to her CSF & brain. As we've come to expect, the med does make her very sun-sensitive, so Denise has had to have more precancerous spots removed. All things considered, much, much, much better shape than Christmas 2005. We are grateful.




Wednesday, August 06, 2014

A Long-Awaited Surgery & New Insurance

After struggling with insurance (the doctors & surgeons were on our side) and enduring a change of medical insurance providers at work, on July 9 Denise finally had a surgery we've been trying to get her for over a year. The new insurance company called to say the surgery had been approved 19 1/2 hours before she was scheduled to arrive for pre-op.

Intestines & muscles are finally back where they belong, issues from G & J tubes, abscesses, catabolic-weakened tissue, hernias all taken care of. So much abdominal damage secondary to her cocci infection will hopefully be a thing of the past, and she can feel more normal again. She wasn't in much pain, surgeon did a terrific job. Many thanks to my aunt for being our in-house RN for a few days after the surgery. When she left I went back into caregiver mode. I'm grateful that I'm a teacher and able to be available during summer as she recovers. Today she went for her first long-ish walk up & down our block. See that walker off to the side of the photos? She didn't even use it. Four weeks after surgery and recovering nicely.

Sunday, April 06, 2014

2014 Cocci Study Group - Phoenix AZ

The 2014 Cocci Study Group met in Phoenix AZ this year at the University of Arizona College of Medicine. Being in a cocci-prone region, Denise did not get to go and rub elbows with the superstar researchers that from afar have been keeping tabs on her case. So my uncle, aunt (the nurse that explains the medical jargon) and I drove out, holding our breath so as to not inhale spores.

As we've become used to hearing, there are not enough people that have the disease for the government nor pharmaceutical companies to throw any resources into it, the debate still goes on about whether it's better find a vaccine first or a cure for active cases first, and that the most promising prospects for either are stalled due to lack of funding. On the positive side, more publications around the country (not just in cocci-endemic regions) have been featuring articles about Valley Fever, so the awareness is being raised. 

The most interesting things we heard came from a representative from NIH (National Institute of Health) that suggest there may be a genetic predisposition to acquiring cocci. It meshed with another researcher's presentation about using Spherusol (a cocci skin test antigen) to start looking into which members in families have cocci. After the presentation we approached the presenters to get more info. Upon hearing the circumstances & extremity of Denise's case (and survival), they were both interested in following up. So Denise, I, and the kids might participate in future studies.

How's Denise doing? Well, the voriconazole still damages her liver & skin, so she's had several pre-cancerous spots removed from her (this frustrates her since she's basted in sunscreen and covered up almost head to toe). The extreme fatigue still persists, 9 years after falling ill. We've been wrangling with insurance for a LONG time to try to get her a surgery to hopefully correct damage related the multiple feeding tubes, abscesses, diastasis (from extreme swelling during the worst of her infection), digestive failures, etc. And sometimes we have funny misunderstandings resulting from impaired hearing & vision... at least I think they're funny. A while ago I found a bud vase she was looking for. She thought I told her that she had a butt face. That'll teach me to try talking to her when she doesn't have her hearing aids in.

Tuesday, December 24, 2013

Merry Christmas 2013!

Once again we're grateful as we compare this year's Christmas photo to the 2005 Christmas photo, taken not after we thought Denise would die. But she's alive and, considering the alternative, well. We've heard over & over that an infection of Valley Fever (especially when disseminated with meningitis) makes for a very slow recovery, and Denise is proof of that as she slowly progresses toward restoration of health. We mark her progress by comparing to the previous year as we evaluate & adjust for her fatigue, cardiac & neurological status, coordination, cognition, and the laundry list of organ and system functions (liver, kidney, digestive, vision, hearing, etc.). We went another year with CF titers for cocci at an undetectable level (so the voriconazole is doing a good job whereas the fluconazole wasn't effective) and therefore not need for a spinal tap, CT scan, liver biopsy, and all those other unpleasant procedures. The drawback of the voriconazole doing well at suppressing the cocci is that it does liver damage and increases likelihood of skin cancer. We've gotten used to not being alarmed when liver labs come back abnormal, but Denise had increased visits to the dermatologist this year to treat lesions that appeared precancerous (by freezing or using lotion) and get biopsies done. It's an adjustment for the family to do fun SoCal things, while trying to keep Denise out of the sun and/or covered up. I've sometimes thought that she should be a model for Coolibar and other makers of SPF clothing.
Next post probably won't be until after the 58th Annual Cocci Study Group this April in Phoenix.