Yesterday, I received a call just moments before 5pm. An infectious disease doctor at a local hospital wanted to see to me. The medical assistant asked, “Can you come in tomorrow at 8am?” I did not hesitate for a moment in my response.
I arrived and the doctor asked me to go over the entire medical history. It went something like this:
The doctor questioned me for an hour before inviting in a second doctor. I immediately recognized this second doctor as the top valley fever researcher in the world, with over 30 years specializing in the study and and treatment of valley fever. I was hoping that, if I were to remain in limbo, I might eventually be referred to this leading expert, so I can’t even express how happy I was to have him review my records and assert, “You’re just puzzling everyone, aren’t you?”
The doctors figuratively passed the mic back and forth, explaining that 99.99% of cases follow one of two trajectories. Either people recover from the disease and are gifted a lifelong immunity, or the patient’s health progressively declines until they die. My infection has been piddling along its path, continually kicking over garden pots on the lawn but forgoing full-blown arson. Subtle assholeary at its finest.
I’ve been on high-dose anti-fungal medication for over four months. If I had an active valley fever infection, the titers would have dropped and the fatigue would have begun to subside. Instead, I’ve been feeling worse and my labs have remained static.
The two doctors spoke in bio-jargon for nearly two hours(!!), musing through possibilities out loud. Postinflammatory response. Autoimmune disease. Full-body PET/CT… light up like a Christmas tree. We don’t even know her peak… could have been as high as 1:256. There are a few other places I’ve found cocci to hide. Physiologic cardiorespiratory test. Low VO2peak. Abnormal VE/VCO2 slope. Cardiovascular morbidity. And, my favorite: sometimes mitochondria are just stupid.
I was able to grasp the basic ideas. If I have an active fungal infection, it will show on my upcoming full-body PET/CT scan. Based on my non-responsiveness to current treatment, it’s likely that I do not have an active infection. Instead, the extreme inflammation across the last four years might have “broken” the mitochondria, in essence shutting down my cells’ powerhouses. When the mitochondria undergo extreme stress, they sometimes “forget” how to take in oxygen and nutrients or “forget” how to convert these into energy needed to fuel the body. That would explain the fatigue, fogginess, and so much more.
The initial bout of valley fever may have caused so much trauma to my body that it’s created some permanent functional damage to my cells, increasing my all-cause risk of morbidity and mortality. Not exactly what I wanted to hear, but we’re finally digging in and getting some answers, and for that I am so grateful!
I have immunological serology labs on the calendar and (pending insurance authorization) a full-body PET/CT and a cardiorespiratory test to quantify any oxygen consumption deficits (plus an accompanying road trip!). Additionally, I have an appointment with a fourth renowned infectious disease doctor in two weeks. When I asked my father-in-law, a retired MD, whether I should cancel my upcoming appointment given today’s success, he said, “No, you build your team, and support your recovery.”
So, I’m proud to be a little selfish today. I asked for help, and I’m finally starting to reap the rewards. I’m coming to realize that my health is far more important than my pride. I’m seeing now that people want to help, and will often go above and beyond if you give them the opportunity. It seems quite timely, as I’m currently reading Amanda Palmer’s The Art of Asking.
I may have “stupid mitochondria,” but I also have an awesome team on my side: 20+ medical specialists across a dozen fields, medical researchers, family, friends, and this wonderful community of supportive little avatars (that’s you!). In this moment, I feel so grateful for everyone who has joined my “team” and is supporting me on my piddling little path to recovery.