 Madelyn Powers, 1999 recipient of the SBHCS Transplant Ambassador Award, has given thousands of volunteer hours as a patient advocate with the Renal and Pancreas Transplant Centers. She began sharing her story with others considering the transplant alternative in 1981. Since then, she has organized fellow kidney transplant recipients. Together, they provide support to others with end stage renal disease.
“When I had my first transplant in 1976, there were no pre-transplant educational programs like the ones Saint Barnabas provides. I didn’t even know what questions to ask,” recalls Ms. Powers. Soon, however, it became clear that she could help to make a difference for others by contributing her time: listening carefully, answering questions, and sharing her own story.
“Having transplant recipients available to share their experiences with people considering a kidney transplant offers more information and a different perspective than physicians and nurses can give,” she explains.
Ms. Powers draws from a wealth of personal experiences with both dialysis and transplantation. She has received five kidney transplants. “With each transplant, the kidney lasted longer than the one before, ” she points out. Organ transplant was a relatively new treatment when Ms. Power’s kidneys failed from chronic glomerulonephritis when she was 27 years old. Surgical techniques and medications have advanced dramatically since then. “With my last transplant in 1995 the doctor told me this organ could last up to 30 years,” she says.
In addition to organizing a patient advocate group, Ms. Powers has been instrumental in compiling a package of current comprehensive written materials that pre-transplant educational program participants can bring home, including resources from pharmaceutical companies, support groups and the Medic Alert program.
She spends three days each week at the Saint Barnabas Transplant Center serving as a resource for program participants and helping to guide them through their first visit to the Transplant Center. “My rewards are in the responses I get from the people I meet. I remember reassuring a woman with end stage renal disease that she would feel a lot better once she started dialysis. She called me later to say that it was true, she was feeling better.”
Besides making herself available almost around the clock to people with renal disease, and their family members, she is a member and volunteer of both the Transplant Recipients International Organization, the American Association of Kidney Patients and the National Kidney Foundation’s Patient and Family Council.
Ms. Powers adds, “I have been fortunate enough to have been given the gift of life by five families. Offering my time is my way of extending those gifts and thanking those families for their generosity.”
Proactive in Preventing Problems
Under the direction of Dr. Jacobs at SBMC, Melvin Goldblat, M.D., at NBIMC, and other transplant nephrologists, a nurse practitioner and six outpatient nurse coordinators monitor the recipients’ kidney function and watch for any signs of rejection or infection. All waiting rooms and exam rooms are adorned with bulletin boards and leaflets reminding patients to consume a proper diet, when to resume various levels of activity, and how to contend with the temporary side effects of their medications. “With a multidisciplinary team I can put patients in direct contact with someone who can help them through any difficulties or stress before it affects their ability to maintain their kidney,” says Melissa Dowd, R.N., B.S.N., C.C.T.C., outpatient nurse coordinator.
Making Healthy Choices
Immunosuppressive medications stimulate the appetite and cause a redistribution of body fat. Combined with the temptation to indulge in foods that were taboo on the highly restricted diet required during dialysis, weight gain is a common occurrence after transplant. A registered dietitian assists patients in maintaining a healthy diet and an appropriate exercise program. “Like all Americans who want to stay healthy, transplant recipients should make good choices in their diet and include exercise as part of their daily routine, says Ann Murtha, R.D. “I meet with patients shortly after surgery and motivate them to get into good eating patterns right from the start.”
In addition, the Center for Health and Wellness at the Saint Barnabas Ambulatory Care Center offers personalized fitness programs and group exercise classes to help patients exercise regularly.
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