ROCHESTER, N.Y. (WROC) — Amanda Caruso from Webster got her first double lung transplant at just 17 months old. Now, after beating the odds of multiple doctors’ predictions, she is getting ready for the same surgery, 25 years later.
While Caruso doesn’t remember much about the journey of her first surgery, she’s been told that her lung issues began when she was six months old. After multiple trips to multiple doctors throughout the country, it was determined that she needed a double lung transplant.
“My parents drove 14 hours from here in New York, to St. Louis, Missouri,” Caruso said. “At that time, that was the best pediatric lung transplant program. I waited six months to get my lungs, got them, stayed in the hospital for another six months. We were there for a total of a year.”
Doctors told Caruso’s parents that around 50 percent of lung transplant patients only make it past six years, give or take.
“Here I am now, 25 years later,” Caruso said. “It’s an amazing feat. So, the fact that I have more than doubled or quadrupled that is incredible.”
Seven years after her first transplant, Caruso said she was diagnosed with interstitial lung disease, as well as a genetic mutation called ABCA3 surfactant gene mutation.
“Basically, my lungs can’t create the liquid that coats them to keep them open and not stick together.”
At the age of 10, Caruso faced an episode of acute rejection and went into respiratory failure.
“That really knocked my lung function down a lot,” Caruso said. “But for the most part, I recovered well. It was never the same as it was before.”
Despite these challenges, Caruso said she was able to keep up with a “normal” life during her middle school years. She participated in drama club, the dance team, and the gymnastics team.
“Once I got to high school, at age 14, and 13 years post-transplant, I started noticing that I couldn’t keep up at dance practices anymore. I just couldn’t do it.” Caruso said.
After many ups and downs, medication changes, and trial and error, Caruso was able to keep her numbers “relatively stable” for a number of years throughout high school.
When a chronic rejection came into the picture at age 19, Caruso tried a new form of treatment.
“It’s actually a radiation treatment, that’s meant for a specific kind of leukemia, but for some reason, it also works to pause chronic rejection,” Caruso explained. “And I was doing that for a while. I felt amazing. I was going to the gym and lifting weights five times a week, I was working my job and going to school full time. I was perfectly the best I’ve felt in a long time was when I was having that medication.”
After health insurance presented an issue of high medical costs, that “perfect solution” became more challenging to maintain.
“So that stopped,” Caruso said. “And after that, COVID hit. Within the past three years, I’ve gone from pretty much being able to keep up and do everything, to now where I can’t keep up with anyone. I’m on oxygen [as of the beginning of 2023.]
It was Caruso’s appointment back in March with her long-term doctor that gave her the push to start using oxygen again. This appointment was also when she got the news that she knew one day would come, but still was not expecting so soon.
“During that appointment is when he asked me if I would ever consider a second transplant,” Caruso said. “When the doctor pointed this out to me, he said ‘Well, technically you don’t have to. You can continue living life at the quality you have now, or you can get a transplant and have an improved quality of life and live even longer.'”
And so, after having a hard time accepting that the option of surgery was on the table, she decided to move forward with the process.
After a number of tests and fluctuating level numbers, along with doubt about whether or not she’ll be approved for a second transplant surgery, Caruso currently is anticipating to be listed at her next appointment in November.
“The first word that comes to mind is anxious,” Caruso said. “In both a good way and a bad way. For me, it’s not ‘If I get, If it’s successful.’ It’s ‘It will be successful.’ You have to speak it into existence and stay positive about that.’
While worrying about the surgery itself can be stressful, Caruso also has to plan out her six-month recovery period, since the surgery will take place in Ohio.
To help relieve some of that worry, Amanda’s sister, Karli has organized a GoFundMe with hopes to raise money for expenses.
“I cannot express into words how thankful and blown away I am that so many people have donated and shared my GoFundMe,” Caruso said. “It almost feels like I don’t deserve it. It’s really encouraging to see what people are saying when they share, the kind words. It really does make a difference in my mental state.”
Caruso thanks her sisters, her fiancé, and her mom and dad for their support in her journey. She also thanks the child who donated their lungs when she needed them for her transplant.
“I wouldn’t even be here right now if it weren’t for someone who made that decision,” Caruso said. “Unfortunately, they had a child who passed away, and they chose to donate their children’s organs. You can save multiple lives. It’s not just one.”
For more information on organ donors and how to become one, click here.