The internet has a weird way of making you feel like you know someone. You follow their coffee runs, their small wins, and their massive, terrifying medical hurdles. For thousands of people on TikTok and Instagram, Amanda Jean Caruso—known to many simply as Amanda Jean—was that person. She wasn't just another "influencer." She was a 28-year-old woman with a jewelry business, a fiancé, and a medical history that would have buckled most people.
When news broke in late 2025 regarding her second lung transplant, the reaction was a mix of hope and, eventually, profound grief. Honestly, it’s one of those stories that stops you mid-scroll. It makes you realize that behind every "get ready with me" video, there might be a battle for breath that most of us can’t even fathom.
The Reality of a Second Lung Transplant
Most people don't realize that a lung transplant isn't a permanent "cure." It’s a trade. You trade a terminal illness for a lifelong commitment to immunosuppressants, constant monitoring, and the reality that those lungs have an expiration date.
Amanda’s journey started way before social media existed. She was diagnosed with a rare lung disease as a baby. In fact, she received her first double lung transplant when she was only 17 months old. Think about that for a second. While most toddlers are just learning to climb stairs, she was undergoing one of the most complex surgeries known to modern medicine.
That first set of lungs gave her 26 years. She grew up. She went to high school in Webster, New York. She became an esthetician, got a degree in Health Information Technology, and started Tiny Woman Creations, her jewelry brand. But by 2024, those donor lungs were failing.
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Why re-transplantation is so complicated
Getting a second transplant—often called a "redo"—is a whole different ballgame than the first one. Surgeons have to deal with:
- Scar tissue (Adhesions): Every time you open the chest, the internal anatomy gets "sticky" with scar tissue.
- Sensitization: The body has already been exposed to foreign tissue, so the immune system is on high alert. Finding a match is ten times harder.
- Physical frailty: By the time you need a second set, your body has usually been through years of chronic rejection or infection.
Amanda was officially put back on the transplant list in August 2024. She shared the wait with her followers with a level of transparency that was, quite frankly, jarring but necessary.
What Happened in September 2025?
The timeline is something her followers remember vividly. On September 8, 2025, Amanda posted that the call had finally come. This was the "gift of life" she had been waiting for. She went into the operating room with the same bubbly, positive energy that defined her content.
She passed away on September 9, 2025.
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It’s the outcome no one wanted to see. In the world of organ donation, we talk a lot about the success stories—the people who run marathons after surgery. We don't talk enough about the brave people who take the risk and don't make it off the table. Amanda’s decision to pursue a second transplant was incredibly courageous. She knew the risks. She chose to fight for more time with her fiancé, Matthew, and her family.
Why Her Story Went Viral
Amanda Jean’s impact didn't come from her being a "patient." It came from her being a person who happened to need a transplant. People didn't just follow her for medical updates; they followed her because she was genuinely talented at what she did.
She was a certified Oncology Data Specialist. She worked at Rochester Regional Health. She was a business owner. She proved that a chronic illness doesn't have to be your entire personality, even when it’s taking up all your physical energy.
The Logistics of Organ Donation Nobody Tells You
When you hear about the Amanda Jean lung transplant, it’s easy to focus on the tragedy. But there’s a massive, technical system behind it that we need to understand.
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- The Waitlist is Not a Line: It’s an algorithm. Factors include blood type, lung size, and the Lung Allocation Score (LAS), which measures how sick you are versus how much you’ll benefit from the transplant.
- The "Dry Run" Factor: Many patients get called to the hospital only to find out the donor lungs aren't viable. It’s an emotional rollercoaster that happens more often than you’d think.
- The Cost of Survival: Even with insurance, the costs are astronomical. From the surgery itself to the post-op housing near the transplant center, the financial burden is a secondary crisis for most families.
How We Can Actually Help (Actionable Steps)
If Amanda’s story moved you, "thoughts and prayers" aren't the only currency here. There are tangible things you can do to support the community she was a part of.
- Check Your Donor Status: Don't just assume it's on your license. Go to Register Me or your local equivalent. In the US, Donate Life America is the gold standard for this.
- Have "The Talk" With Your Family: This is the part people skip. Even if you’re a registered donor, your family often has the final say in many jurisdictions. Tell them your wishes so they aren't making that choice in a moment of trauma.
- Support Small Patient Businesses: Amanda poured her heart into Tiny Woman Creations. Many people in the transplant community start small businesses because they can't work traditional 9-to-5 jobs due to health fluctuations. Buy their art, their jewelry, or their services.
- Consider Living Donation: While you can’t exactly donate a lung while you’re alive (usually), you can donate a kidney or a portion of your liver. These "living gifts" take the pressure off the national waitlists.
Looking Forward
Amanda Jean Caruso’s legacy isn't her death—it's the 28 years of "beautiful, full life" she squeezed out of a difficult situation. She used her platform to humanize a medical process that usually feels clinical and cold.
The organ donation community is small but incredibly tight-knit. When one person loses their battle, it ripples through every other person currently waiting for "the call." It reminds us that the gift of life is exactly that—a gift. It’s not guaranteed, it’s not permanent, but it is worth fighting for every single time.
If you're currently navigating the transplant world, whether as a candidate or a caregiver, remember that being "bubbly" isn't a requirement, but being "brave" often just means showing up for the next breath. Amanda showed up. Every day.
To honor her, consider making a donation to Donate Life America or simply signing up to be a donor. It takes two minutes and, as Amanda’s life showed us, it can buy someone decades of birthdays, career milestones, and love.