Continuing the Fight: Hope, Healing, and Life Beyond Japan

If you're reading this, thank you.

Whether you've donated, shared my story, prayed for me, or simply taken a few moments to learn about my journey, I am deeply grateful. Your kindness has carried me through some of the darkest days of my life.

My name is April. I spent more than two decades serving others—first as a firefighter/paramedic and later as a Physician Assistant caring for first responders and emergency medicine patients. Today, I am the patient.

For the past five years, spike injury and Long COVID and has profoundly changed my life. Combined with hypermobile Ehlers-Danlos syndrome and other medical conditions, I now live with severe fatigue, dysautonomia, chronic pain, neuropathy, cognitive impairment, immune dysfunction, bone weakness and instability and profound exercise intolerance. Simple things like washing my hair, cooking a meal, making coffee, or going to the store have become incredibly difficult.

After years of searching for answers, I traveled to Japan to undergo double filtration plasmapheresis (DFPP) and stem cell growth factor infusions. I used my retirement savings, and through the incredible generosity of family, friends, colleagues, and strangers, I was able to complete two filtration treatments and sixteen stem cell growth factor infusions.

Unfortunately, my treatment did not unfold as hoped.

Following my second filtration, I developed a partially collapsed lung that required hospitalization and a chest tube for five days. Because of my fragile connective tissue from Ehlers-Danlos syndrome, vascular access became increasingly difficult. The team could not safely access my left internal jugular vein, and after the pneumothorax only one possible access site remained. At that point, it became unclear whether continuing treatment could be done safely, and I ultimately completed only two filtration treatments.

While in Japan, I also learned that outcomes were more variable than I had understood before making such a significant medical and financial commitment. Many patients experienced meaningful improvements, while others did not respond or later relapsed. Looking back, I wish I had appreciated that broader range of experiences before making such a significant medical and financial commitment.

Although I have not experienced the improvement I hoped for, I do not regret continuing to search for answers. I returned home with valuable medical data, new questions, and a renewed commitment to helping physicians better understand why patients respond so differently.

My journey is far from over.

My physicians have ordered follow-up laboratory testing to compare my health before and after treatment in Japan. Unfortunately, only a few days after returning home, my husband tested positive for COVID-19. After everything COVID has already taken from me, the possibility of another infection may complicate those results and add yet another layer of uncertainty. Regardless of what those results show, I remain committed to sharing my data with my physicians and continuing to advocate for research that helps future patients.

I continue to receive care from Dr. Jordan Vaughn, my local medical team in Oregon, and specialists at the University of Utah. I am also exploring a possible clinical trial through the Institute for Neuro-Immune Medicine in Florida involving COVID-specific monoclonal antibodies. After seven insurance appeals, I was recently approved for IVIG (after 7 attempts and 4 appeals with insurance)—a treatment that offers hope but, like many therapies for Long COVID, carries both risks and uncertain outcomes.

In the meantime, I continue pacing, anticoagulation, medications, and hundreds of dollars in supplements each month that are not covered by insurance. My journey also includes ongoing travel for specialist care, laboratory testing, rehabilitation, and adaptive equipment.

One of the hardest lessons I am learning is that fighting and acceptance can coexist. For months I resisted the idea of a power wheelchair because it felt like admitting defeat. I'm beginning to realize it may actually give me pieces of my life back. If it allows me to take Brew on a paved trail, enjoy a farmer's market with my husband, or simply spend time outdoors without paying for it for days afterward, then perhaps it isn't a symbol of giving up—perhaps it's a tool that gives me freedom.

I won't pretend this journey hasn't changed me.

I'm tired—physically, emotionally, financially, and spiritually.

But I am not finished fighting.

I'm learning that acceptance isn't the absence of hope. Sometimes it's simply making room for joy while continuing to fight.

Today, hope looks like continuing to work with physicians who refuse to give up on me. It looks like participating in research when I can, sharing my medical journey honestly, and helping move Long COVID research forward. If my experience helps another patient, helps a physician ask a different question, or contributes even one small piece to solving this illness, then every step of this journey will have meaning beyond my own.

Your generosity has already changed my life. It allowed me to pursue treatment I otherwise never could have accessed, and it continues to make ongoing medical care possible.

As this fundraiser continues, your support will help with specialist travel, follow-up testing, medications, supplements, rehabilitation, adaptive equipment, and participation in future treatment and research opportunities.

Thank you for believing in me.

Thank you for believing that people with Long COVID deserve answers.

And thank you for walking beside me as I continue searching not only for better health, but also for moments of joy along the way.

With gratitude,

April