April

I wanted to share an update because quite a bit has changed. Unfortunately, I continue to lose ground physically. My neuropathy is worsening and spreading, with increasing burning pain and numbness. My joint and musculoskeletal pain remain significant, and my headaches, brain fog, and pulsating visual and hearing symptoms have become much more severe. Ordinary things are now difficult or impossible. I can no longer walk to our mailbox or through a grocery store, and standing for even a few minutes takes an enormous amount out of me. Recent testing continues to show significant immune and inflammatory abnormalities. For those following the medical side: • IL-12: 4.7 → 9.9 • IL-5: <2.1 → 3.3 • IL-17: <1.4 → 1.7 • TNF-alpha: 6.0 → 16.0 • TGF-β1: 12,367 → 33,676 • MMP-9: 1,283 → 1,519 Most importantly, we have learned that my immunodeficiency is more significant than originally understood. Despite pneumococcal vaccination, I did not mount adequate protective antibody responses. After nine months and an incredible 10 insurance appeals, my medical team finally succeeded in getting IVIG approved. I will soon begin IVIG under close medical monitoring. It is being used primarily to treat the antibody deficiency, with hope that it may also help some of the immune-mediated inflammation and worsening neuropathy. This feels like an important new opportunity, and I am cautiously hopeful. I have connected with others in the React19 community who have experienced meaningful improvement with IVIG. I know every patient is different, but after so many setbacks, having another medically supported path forward means a great deal. Another major change has been accepting that I need a motorized wheelchair. Going from running, hiking, triathlons, working as a firefighter/paramedic, and spending my PA career on my feet—to not being able to walk to my mailbox or walk our son to school—has been incredibly difficult. But the wheelchair has also given something back. It lets me get outside with my husband, son and furr-baby, and it allowed me to accompany our son on his first day of middle school and to visit with extended family. ❤️ It represents loss, but it also gives me a way to participate in my family's life again. I remain grateful for everyone who helped make my treatment in Japan possible. While I did not experience the improvement we had hoped for, my physicians intentionally collected extensive testing before and afterward, and that information continues to help guide the next steps in my care. My goal remains the same: to heal, to follow the data, and to share what I learn in hopes that it may someday help others facing Long COVID and related immune dysfunction. Right now, our biggest challenge is continuing to access that care. Greg is still looking for work following the layoffs that affected him and his team. He continues to be my rock and carries so much of what I can no longer physically do. His layoff also means we now have to take on the cost of COBRA to maintain the health insurance that, after 10 appeals, finally approved IVIG. And insurance only covers part of this illness. Supplements, compounded medications, visits with Long COVID specialists, portions of my immunology care, and ongoing travel for specialty medical care remain out-of-pocket expenses. There is an irony in finally winning approval for a treatment we have fought nine months to access while simultaneously facing the added cost of keeping the insurance that makes that treatment possible. Thankfully, some medical trips allow us to stay with family, which helps tremendously. I know these are difficult economic times, and I never want anyone to experience hardship because of me. Every donation, share, message, prayer, ride, meal and check-in has mattered more than I can express. If anyone has airline miles that would otherwise go unused, or travel points they would be willing to contribute toward future medical travel, that would also be an enormous help. I'm nervous. I'm hopeful. I'm tired. But for the first time in a while, there is a new treatment in front of me that directly addresses something we now know is wrong. So I am holding onto that hope. My goal is still to get as much of my life back as possible, be present for my family, and continue paying forward everything we learn along the way. Thank you for continuing to stand beside our family. ❤️

I wanted to share an update because quite a bit has changed. Unfortunately, I continue to lose ground physically. My neuropathy is worsening and spreading, with increasing burning pain and numbness. My joint and musculoskeletal pain remain significant, and my headaches, brain fog, and pulsating visual and hearing symptoms have become much more severe. Ordinary things are now difficult or impossible. I can no longer walk to our mailbox or through a grocery store, and standing for even a few minutes takes an enormous amount out of me. Recent testing continues to show significant immune and inflammatory abnormalities. For those following the medical side: • IL-12: 4.7 → 9.9 • IL-5: <2.1 → 3.3 • IL-17: <1.4 → 1.7 • TNF-alpha: 6.0 → 16.0 • TGF-β1: 12,367 → 33,676 • MMP-9: 1,283 → 1,519 Most importantly, we have learned that my immunodeficiency is more significant than originally understood. Despite pneumococcal vaccination, I did not mount adequate protective antibody responses. After nine months and an incredible 10 insurance appeals, my medical team finally succeeded in getting IVIG approved. I will soon begin IVIG under close medical monitoring. It is being used primarily to treat the antibody deficiency, with hope that it may also help some of the immune-mediated inflammation and worsening neuropathy. This feels like an important new opportunity, and I am cautiously hopeful. I have connected with others in the React19 community who have experienced meaningful improvement with IVIG. I know every patient is different, but after so many setbacks, having another medically supported path forward means a great deal. Another major change has been accepting that I need a motorized wheelchair. Going from running, hiking, triathlons, working as a firefighter/paramedic, and spending my PA career on my feet—to not being able to walk to my mailbox or walk our son to school—has been incredibly difficult. But the wheelchair has also given something back. It lets me get outside with my husband, son and furr-baby, and it allowed me to accompany our son on his first day of middle school and to visit with extended family. ❤️ It represents loss, but it also gives me a way to participate in my family's life again. I remain grateful for everyone who helped make my treatment in Japan possible. While I did not experience the improvement we had hoped for, my physicians intentionally collected extensive testing before and afterward, and that information continues to help guide the next steps in my care. My goal remains the same: to heal, to follow the data, and to share what I learn in hopes that it may someday help others facing Long COVID and related immune dysfunction. Right now, our biggest challenge is continuing to access that care. Greg is still looking for work following the layoffs that affected him and his team. He continues to be my rock and carries so much of what I can no longer physically do. His layoff also means we now have to take on the cost of COBRA to maintain the health insurance that, after 10 appeals, finally approved IVIG. And insurance only covers part of this illness. Supplements, compounded medications, visits with Long COVID specialists, portions of my immunology care, and ongoing travel for specialty medical care remain out-of-pocket expenses. There is an irony in finally winning approval for a treatment we have fought nine months to access while simultaneously facing the added cost of keeping the insurance that makes that treatment possible. Thankfully, some medical trips allow us to stay with family, which helps tremendously. I know these are difficult economic times, and I never want anyone to experience hardship because of me. Every donation, share, message, prayer, ride, meal and check-in has mattered more than I can express. If anyone has airline miles that would otherwise go unused, or travel points they would be willing to contribute toward future medical travel, that would also be an enormous help. I'm nervous. I'm hopeful. I'm tired. But for the first time in a while, there is a new treatment in front of me that directly addresses something we now know is wrong. So I am holding onto that hope. My goal is still to get as much of my life back as possible, be present for my family, and continue paying forward everything we learn along the way. Thank you for continuing to stand beside our family. ❤️