My MPA vasculitis diagnosis arrived on August 12, 2018, after treating “sinus infections,” “bronchial pneumonia,” and “heart failure,” with a variety of ineffective prescriptions for more than five years.

On August 10, 2018, St. Joseph’s Medical Center admitted me through their Emergency Department with renal failure, severe fatigue, neuropathy, 16 kg weight loss, and pulmonary hemorrhaging. I overheard one of the doctors say, “the next eight hours will determine his survival.”

That was a sobering thought, but I received a hefty dose of the stubborn gene from my father and told the admitting doctor, “We’ll see about that!”

A team of very bright and energetic medical experts met me in the ICU. They went to work immediately connecting a kidney dialysis machine, administering many blood transfusions, and attaching me to something called a therapeutic plasma exchange (TPE) machine.

Each doctor independently triaged my symptoms, conferred with colleagues, rechecked their assumptions, and within 48-hours, I was still alive, and the group concluded my “sinus infection” was something called Microscopic Polyangiitis (MPA) Vasculitis. I couldn’t pronounce “it” but was grateful “it” had a name.

The nephrologist took the lead and told me the disease was rare, and none of the doctors on the team had previously treated it. But they had all read about it in their medical school textbooks. My response, although slightly incoherent, was, “OK, let’s start fighting this critter and get your approach published in the New England Journal of Medicine!” I believe that comment endeared me to them because all of them are still caring for me.

Rituximab is my new cocktail of choice. It attaches the CD20 antigen on normal and malignant B-cells. My body’s natural immune system tracks down and kills the B-cells marked with this antigen. New cells produced in the bone marrow do not have the CD20 antigen tattoo, which allows healthy B-cells to replace the ones lost in battle. Kudos to Biogen Idec and Genentech. This drug rocks!

MPA vasculitis, in non-medical terms, involves a blood protein getting confused and mistakenly seeing healthy capillaries as infected. In other words, my immune system is perplexed—”healthy” looks “sick,” and “sick” looks “healthy.” Since the lungs, sinuses, nerve endings, heart, and kidneys contain billions of capillaries, MPA vasculitis can shut-down the human body.

I’m still on dialysis but was able to reduce that to twice a week at the beginning of 2020. Every day, I visualize oxygen flowing through my lungs to my heart, which pumps massive amounts of oxygen-rich healing blood to my kidneys.

I also engage with CAM   — complementary and alternative medicine, including meditation, visualization, massage, acupuncture, yoga, diet, exercise, and a glass-half-full attitude.

I believe living with a chronic disease should be more than a binary “sick or healthy” choice.

We can be both. This website supports those who have achieved this balance and those who wish to.

Be Healthy — Be Strong,

Scott