April

❤️ Another Piece of the Puzzle — An Unexpected Opportunity at Mayo Clinic! I have some hopeful news to share! I've been accepted into the Mayo Clinic Long COVID program, with an appointment coming up in the next few weeks. This opportunity came unexpectedly, and I'm incredibly grateful. After so many setbacks, having another team willing to look at my illness through a different lens means more than I can express. ❤️ Where Things Stand Since returning from treatment overseas, my health has continued to decline. My post-exertional malaise (PEM), profound fatigue, neuropathy, and neurological symptoms have worsened significantly. Even simple daily activities can leave me exhausted and struggling to recover. As I've shared previously, my laboratory trends have also demonstrated increasing inflammatory and immune abnormalities. These findings, combined with my worsening symptoms, reinforce the need for continued investigation. I'm deeply grateful to Dr. Jordan Vaughn, who continues investigating possible neuroinflammation, increased intracranial venous pressure, and venous compression potentially complicated by my previous internal jugular injury. We're pursuing additional neuroimmune testing while awaiting neurosurgical consultation and feedback on imaging submitted for review. One encouraging development: the medications Dr. Vaughn started are helping my headaches! After so many setbacks, even small improvements mean everything. I'm also incredibly thankful for Dr. Douglas Jones, who has helped make continued IVIG treatment possible despite complications with my initial infusions. We're transitioning toward home infusions with lower doses and slower infusion rates, carefully searching for the right balance between treatment benefit and tolerability. His compassion, persistence, and willingness to continue caring for patients with complex illness mean so much. ❤️ Why Mayo Clinic? What particularly interests me, both as a patient and clinician, is their approach to respiratory physiology, ventilation, and carbon dioxide regulation. I frequently experience profound shortness of breath, especially during severe PEM crashes and MCAS flares. Despite requesting arterial blood gas (ABG) testing during several ER visits, this has never been evaluated as thoroughly as I'd hoped. The Mayo team has discussed comprehensive respiratory testing, including ABG analysis. Could this reveal another piece of the puzzle? I don't know, but I'm excited to learn. I'm cautiously optimistic, grateful, and hopeful that this evaluation may provide new direction. ❤️ The Financial Challenge With Greg's layoff, the ongoing cost of COBRA health insurance(IVIG was approved through current insurance after 10 appeals), medications, compounded treatments, and specialist care, our resources remain stretched incredibly thin. This unexpected Mayo opportunity adds airfare, lodging, and other medical travel expenses that we hadn't budgeted for. To help, we are holding a fundraiser garage sale this Saturday, selling clothing, makeup, jewelry, skincare, and personal belongings I can no longer wear or use because of my declining health. Letting go of these things is bittersweet, but knowing they can help fund the next step toward answers makes it easier. If you're able to donate, purchase something, or simply share our fundraiser, we would be incredibly grateful. Every bit of support helps us continue moving forward. ❤️ Why I Keep Going My journey has never been solely about finding answers for myself. I want to learn, and help others navigating this devastating illness. I promise to share what I learn from Mayo. No gatekeeping. There are too many people suffering, struggling to access good care, or losing hope. We need compassionate clinicians, open minds, and collaboration. Most importantly, we need each other. I'm deeply grateful to our healthcare team, our family and friends, and this incredible community that continues supporting us. Greg, Kai, and the little moments of joy we find together keep me grounded and remind me why I continue fighting for recovery. To everyone suffering: Please don't give up. You are not alone. Thank you for helping me continue this journey, with the hope of someday paying it forward and helping others find answers, too. Love one another. Gentle hugs. ❤️

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. ❤️