Kristy

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It was a rough night. But Cody got through it. The autoimmune inflammatory process is raging in him despite significant immune modulation in the hospital. Cody's case is one of the most severe C-19 vax injury autoimmune cases. He has poly autoimmunity (5 rapid-onset autoimmune diseases) that came on as a catastrophic crisis after his shots in 2021. Staying almost the entire month of March, he was given Rituxan & IVIG in hospital. The hospital was aggressive in the IVIG course of treatment likely because he needs heart valve replacement & just had his 5th stroke (stroke & infarct in separate regions of the brain), two blood clots in the heart & DVTs and blood clots in his limbs plus pulmonary hypertension, CIDP, DAH, POTS, & extensive liver, brain, and kidney microangiopathy clotting. He was given three IVIG treatments over 7 days. Then his body had a significant hemolytic crisis reaction. The high influx of aggressive IVIG treatment foreign cells/plasma caused his body to attack his own cells—in this case, his own red blood cells -Hemolytic Anemia. To me, it seems as if it was too much IVIG for Cody’s system although infused at the very lowest setting. Still, his autoimmune involvement is likely far too aggressive & he may have done better with one round of IVIG & the Rituxan. But immune modulation from Rituxan can take months to calm the autoimmune process & the hospital was stuck in a rock and a hard place. So, for now, Cody remains in crisis mode as the steroid is only a band-aid. We have been here over & over again. He is prescribed 40 mg/six hours & was due around 2:00 a.m. last night. But at 40 mg per dose he has tachycardia, sweats, & his heart hurts (he has a moderately damaged valve & two blood clots in the heart), so his heart must be preserved at all costs. This means he can't tolerate 40 mg. I wanted the doses broken up as needed. The hematologist wanted me to taper him down—to see if his body is tackling the hemolytic anemia on its own—but he has not ordered the labs to keep an eye on the hemolytic anemia blood values yet. [These labs will be ordered Monday- finally!] So, over three days Cody’s steroid was reduced to 30 mg/every 6 hours. He had been stable-ish on this regimen a few days without significant crisis, then, last night Cody suddenly became cold, short of breath, very pale, & heart raced (at first), then his blood pressure dropped. Not a good sign—he looked deathly pale. Crisis+ This was the same issue when they tried to taper him off in the hospital. So clearly he is not tackling the hemolytic anemia on his own. With the crisis+, last night, at around 10 pm, I had to quickly give him the additional 10 mg of steroids to help him survive. To help him, for now he will be given four doses of 30 mg/6 hours & an extra 10 mg dose separated by a couple hours two times a day or when he goes into a crisis+. Recap- 1st Crisis+ dose was 10-ish. Then 3:00 am reg. 30 mg dose. Then he had a lesser crisis around 5:00 am - he had 10 mg. again. To be clear, Cody has easily tapered down from steroids many times in the past without these extreme crisis episodes. When he is in autoimmune crisis steroids are the only thing that saves him. I have been guiding his doctors in this delicate balance since 2021 when Cody first fell ill. But, this time, managing the steroid with severe hemolytic anemia has been concerning. It is clear that right now his body will not survive without high-dose steroid, but it has to be given in smaller broken-up doses. I am using timers & apps to help me with Cody's medication schedule and to remember to make calls, etc. Forgive any typos or writing errors; I am exhausted. Gary is also here to help me, & despite how seriously ill Cody is, there is a strength in him that cannot be explained. No one has lived through this many extensive multi-organ & multi-system catastrophic APS CAPS blood clotting crises ever. God, please continue to help Cody & our family. ✝️