Written by Zoe Engels, Contributing Writer and Editor
During the 4th of July weekend in 2003, Sheila Advento suddenly felt very sick. She chalked it up to some sort of flu, though she thought it was odd that she’d gotten the flu in the summer. The turning point came on July 6th, when her health deteriorated significantly. As she rushed in and out of the bathroom vomiting, and kept a garbage bag by her bedside, she had no idea that the worst was yet to come—a quadruple amputation that would ultimately lead her to become the first woman in the United States to receive a double hand transplant.
As she grew sicker, she lost her strength and, for the first time, felt unable to help herself. Her mother would check on her, but she tried her best to take care of herself until she fainted in the bathroom. She has been told that her boyfriend at the time alerted her family, and her mother found her lying naked on the bathroom floor, her lips and fingertips a shade of blue-purple. As everyone rushed to help her, dress her, and get her onto the couch, she noticed that her vision was changing and blurring; she could only see shadows on the TV.
Her former brother-in-law carried her to the car. During the short drive to the hospital, she began gasping for air and struggling to breathe. As doctors and nurses swarmed around her, she passed out.
Sheila was comatose for approximately eight days. She had meningococcemia, a bloodstream infection. Though she is uncertain if this happened while she was still in a coma, she recalls hallucinating and opening her eyes frequently. She had a vision, she said in an email to SODA, that she was in an open air market in Calcutta, India, but she’d never been there before.
“It was so bright,” she said. “Suddenly, I heard music. The louder it got, the more fearful I became. And, I ran. Then, I opened my eyes fully.”
When Sheila awoke, she found that her hands were lifeless and had taken on a dark purple, nearly black, hue. As soon as she saw them, she explained, she knew they would be amputated. Later, when she would see her feet for the first time, she noticed that they, too, had developed gangrene. While she originally tried physical therapy and hyperbaric oxygen therapy, which is designed to increase the amount of oxygen in the blood, nothing helped, and she would go on to have all four limbs amputated.
“It was definitely difficult for me to lose my hands and feet, but losing independence was what broke me,” she said. “No matter how much I walked with my head up high, the inability to care for myself, and needing to depend on others, was mentally and spiritually debilitating. No matter what I [managed] to regain—even the slightest independence—I could not ignore the reality that I wasn’t the same, and probably never will be. So, throughout the years of being a quadruple amputee, I always said, ‘If only I [could] have one real hand; I [would] be able to do so much more for myself.’ That became my motivation to pursue hand transplantation.”
After going to the University of Pittsburgh Medical Center (UPMC) and learning more about hand transplantation, Sheila decided to proceed with the process.
While at UPMC, Sheila met Dr. Gorantla, who was not her primary doctor at the time but was part of the same department. Check out our last blog, an interview about hand transplantation with Dr. Gorantla himself.
Sheila was approved for the double hand transplant but had to wait for a match—hands that would be a good fit in terms of factors like dimensions and skin tone. She packed a bag so that she could go at a moment’s notice, if she was to receive a call for the procedure, but Sheila did not want to get her hopes up.
“I told myself, ‘The transplant will happen if it’s meant to be.’”
Then, she received the call. A volunteer pilot from the Angel Wings Foundation met Sheila and her mother at the airport and flew them to the hospital in a small plane. Sheila was both “numb and nervous.” At the hospital, Sheila was prepped and taken to the operating room. On September 18, 2010, she became the first female in the United States to receive a double hand transplant.
Upon waking up post-op, Sheila was groggy and exhausted but ready for this new, arduous journey.
“When I first opened my eyes and saw the transplanted hands, I accepted them as my own,” she said.
Art created by Sheila
She was swollen after the surgery and needed to get another set of prosthetic legs. She also began occupational and physical therapy. Though the prescribed immunosuppressants made her ill, she eventually adjusted to them.
“Physically, the healing and recovery process were both exciting and nerve-wracking,” she said. “When I started to gain some sensations, I was definitely on cloud nine. I remember being confused if I felt the water coming out of the faucet or [noticed] the temperature. Nonetheless, I excitedly texted my family and doctors.”
Over the course of that first year of rehabilitation, Sheila got lab work done monthly to check her vitals and traveled back and forth from Pittsburgh for follow-ups. She had to get treatment for several rejection episodes. Her occupational therapy was daily, Monday through Friday, all day long, until the transplant doctors would decrease the hours.
These days, Sheila is more independent than she was before the double hand transplant. Because the muscles haven’t fully developed yet, she still faces some restrictions, particularly with her fine motor skills, which lead her to ask for help or come up with other resourceful ways to complete tasks.
But the journey hasn’t been smooth-sailing.
Years after the transplant, Sheila was diagnosed with kidney failure from the immunosuppressants. The type of kidney failure is known as secondary focal segmental glomerulosclerosis (FSGS), which is when scar tissue forms on the parts of the kidneys that filter out waste from the blood.
Sheila hadn’t realized that one of the risks of the transplant would be kidney failure from the medication. As her blood work showed constant spikes in her creatinine levels, her local nephrologist sent her for a kidney biopsy. She traveled to Maryland, where her primary transplant doctors had transferred, for the biopsy. That’s when she learned that she was experiencing kidney failure.
Her body again weakened, she resigned from work, she had surgeries to get port access for her dialysis treatments, and began dialysis. She went to a few hospitals to seek approval for a kidney transplant and, fortunately, was approved at Wake Forest Baptist in North Carolina, where she would receive her kidney transplant.
Since experiencing kidney failure, Sheila said she has been on a constant and ongoing journey of fighting off almost daily fatigue, even after her kidney transplant. A couple years ago, as her body underwent changes and the fatigue persisted, she sought help from an endocrinologist, who performed an ultrasound and biopsy.
Sheila learned that she had papillary thyroid cancer with nodules on both sides of her thyroid. She underwent an additional surgery, known as a partial thyroidectomy, to remove the right side of her thyroid, which was the more concerning side.
“MY BODY IS EXHAUSTED!” Sheila told SODA via email, emphasized with all capital letters. “All these surgeries since I was in my twenties have taken a huge toll on me—not just physically, but mentally and emotionally. It’s almost embarrassing for me to admit that I AM TIRED.”
The endocrinologist and surgeon discussed the possibility of removing the left side, too, for a total thyroidectomy, but drained physically and emotionally, Sheila said she opted against it for now and is being closely monitored by her doctors. As of her last ultrasound, there fortunately haven’t been any significant changes to the left side.
Learn More About Sheila
She said students, and everyone, should know that organ, eye, and tissue donation are life-changing, but transparency is key.
“There’s never a guarantee for any donor organ to work, but it gives hope for greater things, such as the possibility for independence,” she said.
Organ donation education, she emphasized, is essential alongside advocacy; education helps create transparency in advocacy. She encourages students to have conversations with any donor family members and friends because those firsthand accounts are essential in organ donation education. She added, “With transparency, you [can] provide clear and concise information to the potential recipients.”
If you’d like to help educate your peers about organ donation as an advocate, apply to start a SODA chapter at https://www.sodanational.org/students.
As for what’s next for Sheila, she’s ready to continue working with her transplanted hands and see how they evolve.
“Although I am grateful to have real hands, I am hoping to eventually develop all the muscles needed as well as full sensations,” she said of her goals.