Raquel & Rocky’s Transplant Story: ‘Don’t Worry, Mom. I Got Your Back!’
Raquel Ramirez shared her name with her daughter, so it was only fitting that one day her daughter shared a part of herself back with her mom.
When Raquel got sick in 2021 and needed a liver transplant, her daughter Raquel Regalado, who goes by Rocky, did not hesitate to be a living donor.
“They basically said, you’re in need of a transplant. We’re going to put you on the waiting list, but somebody can be a living donor,” Raquel said. “She told me to my face: Don’t worry, Mom. I got your back.”
In fact, both Rocky and her identical twin sister, Kristen, were matches to be liver donors for their mom. “I was going to do it regardless,” said Rocky, “but we wanted to see who was a better match.”
The twins decided that whoever was not the donor was going to be the main support person — organizing doctors’ appointments, informing family, and the managerial role. That was Kristen. “She is the neat freak, she is super organized, she’s like the mom!” Rocky said.
While the donor aspect may have seemed pre-determined, getting there was its own unique journey.
Raquel had previously worked in the medical field, so she was steadfast about her annual doctor visits and having lab work done. She was aware that her liver enzymes were always a little bit high, but it was not at the point that she needed medication. So, when she got sick, it came as a shock.
In April 2021, she suddenly began having gastrointestinal issues — stomach pains, and inability to pass gas. She went to the hospital, where they performed an MRI and took a biopsy of her liver, which showed she had primary biliary cirrhosis due to non-alcoholic fatty liver disease (NAFLD). It was advanced — stage 4 — but the doctor told her they could manage her condition with medication.
However, managing the meds was difficult with Raquel’s job. Her medicine made her use the restroom much more frequently. But as Lineman Apprentice with IBEW Local 9 Electricians, she has long days in the field with infrequent restroom access.
“I was urinating more, but when I was working out on the field, I couldn’t take my meds as much. It was hard to take during work when I didn’t have easy access to a bathroom.”
By the fall, she was getting very sick — bloating, and difficulty walking.
“I had three hospital visits — back and forth between two hospitals — and each time, they just sent me back home,” she said.
Raquel continued to work. Eventually, the illness became so severe — “I was cramping up in my groin, abdomen, hands, and arms. I was in such pain that I could barely move.” — that she called an ambulance to go to the Emergency Room. During this visit, they discovered a blood clot in her leg, and she had 16 liters of fluid removed. Based on her condition, she was given a prognosis of just a few months. It was at this point that she got referred to UI Health.
“They came in like angels out of heaven! The UI Health doctors said, ‘We’re going to take care of you!’” said Raquel.
Once Raquel arrived at UI Health, she met with transplant surgeon Dr. Mario Spaggiari.
“The way he spoke to me and my daughters was so calming,” she said. “I felt his calmness and his warmth, and I knew I was in the right place. We were going to make it through this process.”
Dr. Spaggiari told Raquel and her daughters to focus on her health and stay aware of her MELD score, the severity of disease. Raquel’s MELD score wasn’t at the level that required an imminent transplant — she was on the deceased donor waiting list — but she was a great candidate for a living-donor transplant. Raquel’s daughters insisted they begin moving forward with this option.
With Rocky as a match, they had an initial transplant date in December 2022, which also worked well with Rocky’s winter break from Chamberlain College of Nursing, where she’s a student. break. However, when they went in for surgery, Rocky tested positive for COVID-19, so it was rescheduled for March. In the meantime, Raquel was continuing paracentesis (fluid drainage) — three times a week, then down to two, then back up to three.
“I was really, really sick — I really felt miserable and thought that I might die. I was very tired. It was hard to move. I could barely walk,” she said.
Said Rocky: “During the process, and when it was getting close to the actual procedure, it started becoming harder and harder. It was getting colder out and more stressful because we were trying to get everything organized on our standpoint: How our households are going to be okay. How my twin sister is going to be able to help. The money side of it, the time part of it to take off school. Getting everything organized. During that time, it was very stressful.
“We were sad and stressed out. We had so much work to do on our end, but I feel like the way that Lisa was organizing everything was so helpful!” Rocky said.
That’s Lisa Mariano, the transplant clinical coordinator in the Liver Transplant Program, who shepherds patients and families through the many pre- and post-transplant appointments and helps facilitate other support services.
“She was a big plus getting everything organized! She set the dates for us, reminded us of appointments, and she would text us and give us updates. No matter what time it was, she would respond to us and answer our questions,” Raquel said. “If she needed to get us in, she’d set us up. She made it work for us.”
Additionally, Lisa coordinated with a donor-specific program that assisted with costs related to appointment travel for Rocky throughout the process, and nearby lodging after surgery. They also helped with caregiver travel for Raquel’s other daughter, Samantha, who lives in California.
Raquel and Rocky went back in for the transplant surgery in March 2023. Rocky recovered and went home in about a week and a half. Raquel stayed in the hospital for about a month; she had a continual fever, so her transplant team wanted to ensure she was not a risk for complications before transferring her to occupational/physical therapy at the Shirly Ryan Ability Lab. She was there for a week and returned home right before Easter.
Today, Raquel is doing great. Her follow-ups are down to just once a month, and she’s back doing light exercise in the gym and going for walks.
“When I see family, friends, and neighbors, they say, ‘Oh my God, you look like a living miracle!’” she said. “My and my daughters’ faith in God brought us through this life-changing process — and my wonderful transplant team at UI Health!”