World Kidney Day
The Patient Family and Supporter Advisory Committee (PFSAC) Team (L to R): Chantal Fortune, Administrative Assistant in Hemodialysis; Garvin Hoo Sang, Technical Program Manager; Neena Cherian, Patient Care Coordinator; Annellie Cristoba, Patient Care Coordinator; Primrose Mharapara, Nurse Practitioner; Mar Paul, Social Worker; Risa Kim, Social Worker. Missing: Denise Williams, Manager. (Photo: UHN)

When Valgiene Adeoye was diagnosed with kidney disease in 2012, fear of the unknown took over.

She was told by her healthcare team that she would need dialysis. It's a process that cleans the blood and is typically needed at end-stage kidney failure. Valgiene was determined to survive. She opted for peritoneal dialysis, a treatment that is used to remove excess fluid, correct electrolyte problems, and remove toxins in those with kidney failure, and can be done from home.

After a few weeks, she was rushed to the hospital because she had difficulty breathing. That night, she had two cardiac arrests, and underwent a double-bypass surgery at Peter Munk Cardiac Centre.

The next day, while still recovering in the Intensive Care Unit, she began hemodialysis.

"Dialysis is not a word people wake up and think about, but when you're sick you think about it every day," says Valgiene.

"Hemodialysis is a life sustaining treatment," says Dr. James Scholey. "That being said, it's a considerable burden in terms of discomfort, exhaustion, time commitments, and can be frightening."

That is why today, the Multi-Care Kidney Clinic (MCKC) provides extensive pre-dialysis information.

"This approach improves the quality of care for patients so that when they approach dialysis, they can make the right decision for them and their families," says Dr. Scholey. "The benefits of dialysis outweigh the cons.

"Many people on dialysis have a wonderful quality of life and Valgiene is a great example of that."

March 12 is World Kidney Day. Read more information.

From Fear to Understanding

Hemodialysis immediately transformed Valgiene's treatment and quality of life. Today, she comes to UHN to receive it three days a week for four hours at a time. The dialysis unit has become a second home to her, and the patients and staff a second family.

But, the questions and fears never went away.

That's why, when in 2015 staff members, along with patients, formed the Patient Family and Supporter Advisory Committee (PFSAC), Valgiene joined. It's a forum for patients and their families to congregate and voice their feedback, concerns, and questions.

"With that, kidney disease went from a 'why me' to 'we' illness," she says of the group.

Once she joined UHN’s Patient Family and Supporter Advisory Committee, Valgiene Adeoye says “kidney disease went from a ‘why me’ to ‘we’ illness.” (Photo: Courtesy Valgiene Adeoye)

The PFSAC meetings take place every two months. For Valgiene, the information shared turned her anxieties and fears about hemodialysis and kidney failure into understanding.

Most memorably, was a session with the technical manager who gave a detailed explanation of the ins and outs of the hemodialysis machine — something which was once so foreign and terrifying became familiar.

"Once you understand what is happening to you, and how, you aren't scared anymore," Valgiene says.

Annellie Cristobal, one of the founders of the PFSAC group, says that it was created to engage patients as partners of care and improve the quality of treatment they receive.

"Kidney disease can be scary and often isolating," Annellie says. "The meetings allow patients to take control of their healthcare journey by providing an outlet for them to voice their concerns and questions face-to-face.

"That way we can implement the appropriate changes to provide the best care and experience possible."

Annellie says that the information and concerns heard at the meetings are taken into immediate consideration and wonderful changes have been made. For example, when receiving hemodialysis, the patient's body temperatures typically decrease. Concerns about being cold were voiced and the team implemented a solution – buying blanket warmers so patients can receive warm blankets during treatments.

World Kidney Day 2020 addresses women's health

Kidney disease currently affects about 850 million people worldwide. One in 10 adults has chronic kidney disease (CKD) and it is projected to become the fifth most common cause of years of life lost globally by 2040.

The campaign for this year's World Kidney Day, which is being marked today, is "From Prevention to Detection and Equitable Access to Care." Kidney disease can be prevented and progression to end-stage kidney disease can be delayed with appropriate access to basic diagnostics, early treatment, and information.

"Because of my faith and trust in God, I continue to believe that the doctors know how to treat myself and others," says Valgiene.

Today, she continues to attend every PFSAC meeting.

"Being in charge of my own care, and having my voice valued, has made all the difference," she says.

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