You Made the Waiting Game Easier

From waiting in line or in traffic to sitting by the phone for news, waiting is not something we humans tend to do well. But waiting for a kidney transplant is on a level that cannot compare to those mundane everyday waiting games. Thankfully our pediatric patients and their families now have resources and support each step along the way.

Thanks to your support, the hospital’s nephrology department has created the pediatric kidney health and transplant education resource. This comprehensive package is provided to patients awaiting kidney transplant. It includes educational materials such as age-appropriate child activity sheets, parent resources, a glossary and presentations, as well as facilitator guides and staff resources. The program addresses issues such as the pre-transplant process, criteria for transplant, tests and procedures, and risks to transplant. Introduced in April 2019, it has already received positive reviews from patients and families who are grateful for the support.

“The resource book was helpful to keep us all informed,” says Rhonda Braun, whose 17-year-old daughter Alexis will be undergoing a kidney transplant. “From the very beginning, we were informed and the team ensured we were understanding it all including Alexis.”

“Families needed to bridge the time from referral for transplant to when they were actually seen for the initial pre-transplant meeting,” says Julie Strong, pediatric kidney transplant coordinator. “Our goal was to develop comprehensive materials that would address critical steps in the transplant process, and prepare and educate children and families with realistic expectations of transplant and the rigors of the transplant assessment.”

Rhonda will be donating one of her kidneys to 17-year-old Alexis, so thankfully there was no need to wait on the transplant list, but there was still had a long road to get here – literally and figuratively. The Braun family live in Thunder Bay and travelled to Winnipeg for appointments and treatments, but the level of care received was always top-notch. The transplant coordinator updated them at every appointment and there were plenty of opportunities to ask questions. “As out-of-province clients, we were fully respected and supported throughout the entire process,” says Braun.

To aid in the creation of the resource, the nephrology department sought input from patients and families like the Brauns about what they wanted to know to help them make an informed decision about proceeding to transplant. It was a big surprise to discover that families did not want to focus on the “why” as initially thought, but rather the “how” and “what” of kidney transplants. This changed the scope of the project and ultimately, will better prepare children and parents. The focus is now on what to do to stay well and get to transplant safely and how to maintain the transplant after surgery.

This information has also had a lasting impact on how the department approaches patient care.

“There has been a continued philosophical shift in the focus of how our group talks about kidney disease to one of ‘living well with kidney disease,’” says Strong.

“Kidney transplant is not a cure for kidney disease; even after transplant you still have to ‘live well with your kidney disease’ to have a good outcome. Our entire education focus for all areas in nephrology is now directed in this fashion.”

In better preparing patients for the physical, emotional and mental demands of transplant, the overall outcomes of kidney transplants can be improved.

“We were explained the transplant is not a cure but a treatment,” says Braun. “It helped us be more well prepared for post-transplant life and what to expect. We were informed of all the risks, meds, side effects, follow ups and after care. Along with that, we were given the hope of their ability to provide the most exceptional care for our child from their professional standing.”

As mother and daughter await surgery, the Braun family knows they are in good hands. To others out there going through the process, Braun encourages them to trust in the hospital staff. “Know this team has your child’s and your best interests in mind with everything.”

Thanks to your support, this new resource will have a direct impact on each and every Manitoba child and family currently living with chronic kidney disease and progressing to kidney transplant workup.

In addition, when creating this program, the team discovered that this type of information was also lacking on a national level. Further steps are being taken to use these or similar resources at a broader level to also help patients outside Manitoba.

Together, we can make things possible.