Shirley (003)

Shirley is sixty-four years old and was a patient in the new Post-Transplant Rehabilitation Program at The Salvation Army Toronto Grace Health Centre (TGHC). Prior to being admitted to TGHC, Shirley was admitted to the Toronto General Hospital (TGH) on July 30, 2016 for a liver transplant.

With the current rise in the number of transplants preformed at the University Health Network (UHN), there was an increasing need for patients requiring post-transplant rehabilitation. In July 2016 the TGHC entered into an agreement with the UHN to provide post-transplant rehabilitation for patients from TGH.

In 2010, shortly after her mother and husband had passed, Shirley began to experience what she described as “an uncomfortable feeling” in her stomach, and because it persisted she had a check-up. After undergoing several scans and a biopsy on her liver, she was diagnosed with non-alcoholic steatohepatitis (NASH). NASH resembles alcoholic liver disease, but occurs in people who drink little or no alcohol. A distinguishing feature of NASH is fat in the liver, which can be found along with inflammation. The progress of the disease usually takes years, even decades. As it worsens, NASH usually causes scarring or “fibrosis” to appear and accumulate in the liver.

After Shirley received her diagnosis, she received a regularly scheduled check-up every six months to determine if her NASH had advanced. However, although she was receiving frequent medical attention outside of her home, Shirley had no one to care for her at home — she has no children and after her husband passed from cancer she continued to live alone. In the summer of 2015 Shirley received a timely visit from her nephew Skye, a nursing student. Finding Shirley unable to speak properly or move because of weakness, Skye realized that his aunt was not well and called an ambulance.

At Perth and Smiths Falls District Hospital (PSFDH), Shirley was admitted and given an MRI, the healthcare team discovered that her NASH had advanced. There was also a build-up of fluids in her lungs and stomach. After assessing and treating Shirley, the healthcare team at PSFDH told Shirley she could not live independently and that they would not allow her to return home alone.

Shirley moved in with her sister. However, unable to eat, she became more fatigued and weak. As Shirley says, “It was a struggle.”

Her condition continued to deteriorate and she was eventually admitted to Kingston General Hospital, where the healthcare team determined not only that her NASH had advanced but also that she had developed primary biliary cirrhosis (PBC), a disease in which the bile ducts in the liver are slowly destroyed. When bile ducts are damaged, as occurs with PBC, harmful substances can build up in the liver, which sometimes lead to irreversible scarring of liver tissue (cirrhosis). This results in the liver becoming permanently damaged and no longer able to work properly. This was the situation with Shirley — she had end-stage liver disease and required a liver transplant.

Toronto General Hospital’s transplant unit was contacted and an appointment was made for June 2016 for Shirley to have a pre-transplant assessment and tests to determine if she qualified for a liver transplant. Shortly after, Shirley was put on a transplant list, and four weeks later, on July 14, 2016, she was scheduled for surgery.

Shirley said after her surgery that she had never experienced so much pain. “I was in bad shape after my transplant,” said Shirley. Then she added, “Not that there were any complications with my liver transplant. I received a very healthy liver according to the transplant team, but after the surgery you need to learn how to walk and talk all over again.” The first time Shirley was allowed to stand after her surgery she recalled that her legs were like two rubber bands.

When she was admitted to the TGHC on August 30, 2016, she was just beginning to walk with a rollator walker. “The rehabilitation at the TGHC is very good,” said Shirley. Her physiotherapist at first had Shirley transitioning from the wheelchair to her walker. Fairly soon, Shirley was gradually able to do stationary biking and eventually a lot of walking. Shirley said she reached a point in her physical recovery where she was just using a cane.

“The rehabilitation team remains committed and firm about staying on schedule,” said Shirley, “but they also show compassion if you’re not feeling up to doing your exercises on a particular day. They really helped me regain my strength and endurance.”

Shirley also liked the recreational therapy programs at the TGHC. “I like to mingle and talk, and the recreational therapy programs at the TGHC keep you mentally active,” said Shirley. “Getting out of the room and interacting with staff and patients is very therapeutic; the worst thing you can do is stay in your room.”

Shirley told me she has wonderful family support, and although she is very independent, she will return and live with Sandra, her sister. Sandra has offered to convert part of her home into an apartment for Shirley.

“When I lived alone after my husband’s passing,” said Shirley, “I had no one to really talk to about my feelings about his passing, as well as my mother’s.” Then she added, “I feel I’ve been given another chance and I’m looking forward to being with my family.”

Her goal was to return home to Smiths Falls by Thanksgiving weekend, and she left TGHC on October 7, 2016. Reflecting back over her journey, she realized that she spent more time after her transplant surgery in acute care than she did at the TGHC for rehabilitation. She thought that was amazing.

By Gerry Condotta