They range in age from teens to seniors, a mix of men and women. Some are students. Others are professionals. They come from all walks of life – united by a common thread – all have been affected by serious lung disease. They are either waiting for, or considering undergoing a lung transplant. A few have already had the procedure. Some are caregivers.
Led by the Manitoba Lung Association’s patient educator Judy Riedel, the Lung Transplant Support Group is a lifeline for its members. Once a month the members meet to share information and offer each other emotional support. Their stories are powerful and at times heartbreaking. Their courage is inspiring. “I wasn’t sure what to expect when I started the group,” says Riedel, a registered nurse. “Lung transplant is a complex journey, but I quickly learned that the need for emotional support is overwhelming for these patients.”
Riedel started the group almost a year ago. Members must be referred from the Lung Transplant Team at Winnipeg’s Health Sciences Centre hospital. For those too sick to attend in person, telephone support is available. The group also has an active online community via Facebook – this forum is limited to Lung Transplant Support Group members to ensure a comfortable forum for sharing.
The assessment for lung transplant is a long process with many steps. Candidates must be assessed by a team of health professionals to determine whether lung transplant is a viable option. “You have to be sick enough to qualify, but well enough to undergo the transplant,” explains Riedel. This paradox is frustrating and draining for both the patient and their families. Once the complex approval process is completed the heart wrenching waiting game begins. Some group members have died waiting for new lungs. “That’s incredibly hard. It’s like losing a family member.” The average wait time is about two years.
Post-transplant patients and their families also benefit from the support group. The road to recovery following a lung transplant is often difficult. Anti-rejection medications can cause serious side effects and rehabilitation for some can be very slow. The support group forum offers the chance to ask questions based on current medical information, problem solve and adjust day-to-day activities to improve quality of life. The information also helps those on the wait-list to better understand what to expect post-operation.
Riedel is passionate about patient education. She has been with the Manitoba Lung Association since 2003 and prior to that worked in a hospital as a patient educator. She is a natural fit for this role. Her warmth and gentle spirit are complimented by a depth of professional skill and knowledge. Riedel says the support group has taught her to never underestimate the power of hope and human connection. “It’s just so easy to love these people.”