Having endured the life-saving but terrifying experience of a double lung transplant, 39-year-old Karen Murray is deeply committed to do whatever it takes to make the most of a precious gift.
After several years of severe breathing problems caused by pulmonary fibrosis, Karen considered herself fortunate to have only waited four months for two healthy lungs to become available. In late November, 2001, she underwent eight hours of surgery and an unusually long five weeks in intensive care due to medical complications. When specialists at Toronto General Hospital took her off oxygen in late January, she learned that she was being transferred to St. John’s Rehabilitation Hospital to take part in the new growing field of Organ Transplant Rehabilitation.
“The transplant process is a miracle but it is terrifying and recovery is very difficult. It takes its toll physically and emotionally,” Karen notes. “Sure, physical rehabilitation is important but you need spiritual rehabilitation as well.”
St. John’s Rehabilitation Hospital is the only teaching hospital in Canada that has developed a comprehensive, interdisciplinary rehabilitation service for people who have undergone lung, liver or heart transplants. Created in 1999, the hospital’s organ transplant rehabilitation program is the result of a partnership with the Multi Organ Transplant Program at Toronto General Hospital, a part of the University Health Network.
“It was clear then and even more so today, that there is a growing need for organ transplant rehabilitation services. Transplant rehabilitation programs can work in support of acute care hospitals as they expand and advance the transplantation process while improving care to transplant patients,” says Rose Edwards, Vice-President of Programs at St. John’s Rehab. Organ transplants are expected to rise significantly over the next few years as Organ Donation Ontario, a recently established provincial agency, works to increase public awareness about the significant need for organ donations. The province has also promised to increase funding for transplants to more than $120 million by 2005.
“We are fully committed to take leadership and establish a dedicated organ transplant rehabilitation program to serve all of the acute care centres across the province,” Ms. Edwards says. To that end, the hospital has developed a funding proposal for consideration by the Ministry of Health and Long-Term Care that would include a 6-bed inpatient rehabilitation program, a comprehensive range of outpatient services and support for future research.
So far, the hospital has absorbed the cost of creating the transplant rehabilitation program and treatment for a small number of patients. From April 2001 to March 2002, 14 transplant patients from the Toronto General Hospital successfully completed rehabilitation at St. John’s Rehab, representing only about three per cent of the total transplants in Ontario each year.
“There is tremendous dedication from the rehabilitation team to expand transplant services,” says Program Director Vicki Faulkner. “With dedicated annual operating funding, we have the potential to treat up to 52 patients a year.”
Ms. Faulkner credits strong commitment from her staff and Toronto Hospital’s Multi Organ Transplant Program team in building the initial phase of an integrated transplant program. “In a short period of time, we developed a seamless admission process, shared clinical protocols, education programming and information that led to the introduction of our transplant rehabilitation services,” Ms. Faulkner explained.
Karen Murray believes the rehabilitation environment is one that promotes “true healing”. “I am only now fully comprehending the enormity of what I have gone through and understanding what it is I need to do to change my life so I can stay as healthy as possible and avoid returning to acute care.”
During her recovery at St. John’s Rehab, Karen has physicians and continuous nursing care to carefully monitor her progress through the post-transplantation period and maintain regular contact with specialists at Toronto General Hospital. Karen’s weekly visits to acute care hospital for follow-up care are coordinated by staff in the rehabilitation program.
To maintain a complex, daily regimen of medications, Karen met with the pharmacist on the rehabilitation team to develop a self-medication program that meets her personal needs. “Immediately after the transplant, it is hard to absorb all that there is to know about your medications because emotions are running high,” she recalls. “But they are so important to your survival. As you begin to feel better, you can focus on learning how the anti-rejection and other drugs interact with everything else in your life.”
In occupational and physical therapy, Karen was shocked to discover how far her physical condition had deteriorated during her stay in intensive care. In the early stage of her therapy, physical conditioning to exert a half calorie of energy was her goal. “It’s a new reality. I am learning to pace myself, slowly build my tolerance for physical activity and know what I can do safely without putting my health at risk”.
One of the biggest surprises of recreational therapy was rediscovering her appreciation for the piano. “It gives me personal satisfaction and it’s great for the fingers.”
During her rehabilitation, Karen consulted with a dietitian to develop a low-fat diet to maintain her weight and control her high blood pressure, a side effect of prescribed transplantation medication. Massage therapy will also help her with relaxation.
“While I believe my physical rehabilitation is a priority, spiritual healing is also important, it’s nourishment for the soul,” Karen explained. “Dealing with the death of another so that you can live is a lot to get your head around.” Throughout the transplantation process, her large family has been a major source of support and inspiration. “Even the family dog comes to visit,” Karen notes wryly.
A popular aspect of the rehabilitation program is the multi-faith services coordinated by the Sisters of St. John the Divine, who founded the hospital and continue to play an active role in the organization. “The first thing I saw when I arrived here in the ambulance was the beautiful chapel. I had this overwhelming feeling that I was home.”
Life after her transplant will be different for Karen. She is focusing on family and sees herself as an advocate for organ transplant patients. As an accomplished filmmaker, Karen made the decision to document her experience on film when her name was added to Ontario’s organ donor list in June 2001. “Adventures in Breathing” will be completed in the summer of 2002 and will eventually be viewed on Discovery Health Canada, the Life Network and Canadian Learning Television.
“I believe the story needs to be told. I hope that other transplant recipients and their families will realize how their own stories are an inspiration and I hope my own story will represent their experience. I also hope the film will create greater public awareness about organ transplantation and the incredible teams of people who make this possible.”