Making An Informed Choice: Education Central In Transplant Decisions
Patient Perspective In theory, organ transplants aren’t particularly difficult things to understand.
A transplant is the removal of a non-functioning or ill-functioning organ, for one that works. In practice though, organ donation is an extremely complex undertaking, and one where the importance of patient education cannot be overemphasized.
Trying to cope with the consequences and symptoms of a failing organ is difficult enough, but attempting to do so while navigating the complexity and stress of an organ transplant is doubly difficult. Linda Mele was first diagnosed with polycystic kidneys at 17 years old; Linda was told that she could expect kidney failure later in life and while the onset of problems didn’t come as a surprise, it was still difficult to deal with. “With my condition, kidney function is affected by the growth of cysts,” says Linda. “As the cysts grow the condition gets worse. The average kidney is about 10cm in diameter, mine were the size of footballs. I wouldn’t be surprised if I cracked a couple of ribs.”
Types of donation
There are two major types of organ donation — living and deceased. Obviously, with deceased donation there is a greater variety of organs that can be transplanted; what matters isn’t so much the age of the organ, but more that it is healthy. According to the Kidney Foundation of Canada, more than “two dozen people can be helped by a single donor.” Living donation is a completely voluntary act. It usually involves immediate family members or related donors. Living unrelated donation is also possible with a suitable match.
As Linda’s kidney function decreased, her medical team made attempts to slow the disease’s progress. “I was put on a low-potassium, low-sodium diet to prolong my kidney function.” says Linda. Eventually though, Linda’s kidney function deteriorated to the point where only a transplant would save her life. “We weren’t even looking at that avenue until they brought it up. My sister was ineligible but as it turned out, after a lot of testing, Brian (her husband) was a match.” Upon hearing the news, Brian immediately took the decision to go under the knife, and not long after, was in the operating room.
“Nothing short of a miracle”
After surgery, Linda insisted on seeing Brian, who was lying in recovery from his operation earlier that morning. “They wheeled Linda into my room; I was in a lot of pain but I’ll never forget the look on her face. She had colour, rosy cheeks, colour in her eyes — I had gotten so used to seeing her dull, hazy eyes... seeing the change was nothing short of a miracle. I knew it was the right decision right there,” says Brian.
Role of education
Galo Meliton is a Renal Transplant Nurse Coordinator at St. Michael’s Hospital in Toronto, and is passionate about the role that education plays in the transplant process. “Education can make or break the transplant. You have to encourage families to get involved, because their involvement is key to success,” says Galo.
One key resource in educating patients and families is the Transplant Companions program. The program educates patients and caregivers about the process both pre- and post-transplant. Facilitated learning sessions are the program’s central focus, with organ donors and recipients giving unique insights into the transplant experience. Healthcare professionals benefit from the program too, receiving a variety of helpful resources and information to bolster their support of transplant patients.
“Patients and family need to know what’s going to happen and what is required of them, how they can help.” So, we tell them about what to expect, pre- and post-transplant, what the transplant will look like, post-surgical issues and of course, we talk about transplant drugs, like anti-rejection medications,” says Galo.
Like Galo, Brian and Linda are anxious to stress the importance of patient education and the Transplant Companions program. “In terms of making the decision to go for testing and donating my kidney... education was the first part of that. I learned that donating may actually improve my life expectancy (people who donate kidneys often live longer than those who don’t due to the necessity for improved lifestyles). Education for us was so beneficial that we feel the urge to give that back,” says Brian. For Linda, education was important in understanding what she could do for herself to improve her quality of life. “I learned about diet, exercise, and trying to live a normal life — with limitations of course. I know to take time off when I need it, and if I have something planned to rest up for that,” says Linda.
“But Brian gave me a generous gift, one that I’ll never forget for the rest of my life.”