Happily married for just a year, Yvonne Maffei and her husband had bought a house with hopes of starting a family. Then she heard the words that would turn her life upside down.
“You have kidney disease.”
Yvonne admits hearing the diagnosis was a blur. She recalls being told she would be on dialysis, but that she thought this meant being on a medication.
“It was incredibly hard to accept. I was angry. But I had to accept it. I changed my mindset”.
Yvonne began a rigorous course of dialysis, three times a week, four hours at a time. The new regime had a huge impact on Yvonne’s life; she was unable to keep a job that involved daytime hours and the financial strain took a toll. But the hardest part was to hear, at only 27 years old, that she would likely never have children.
When a woman has kidney disease, it can impact her fertility, says Dr. Michelle Hladunewich, Director of the Division of Nephrology and Obstetric Medicine at Sunnybrook. Kidney disease can decrease the ability to produce healthy eggs, in addition to the fact that women may not menstruate, or may have irregular periods.
Yvonne’s life changed when her care team, at that time at University Health Network, suggested nocturnal dialysis. Nocturnal dialysis or takes place while you sleep, typically six to eight hour sessions for up to seven times a week.
“My blood work is now as good as someone with working kidneys,” says Yvonne. “Before nocturnal dialysis, or while-you-sleep dialysis, I had irregular periods. Now I’m off blood pressure medication, I’m just on vitamins and an iron supplement.”
That’s not the only thing that’s changed since nighttime home dialysis. Yvonne and her husband now have three children: Matthew, 14 years old; Nicholas, 12 years old and Daniel, two years old.
“I’m the first woman in Canada to have carried three babies to term while on nocturnal dialysis,” says Yvonne, beaming. “Sunnybrook’s approach, which provides a one-stop shop for pregnant women requiring dialysis, has made a huge difference. I was able to combine my nephology, or kidney care, with my obstetrical care. All of my care team were connected with each other; it gave me such peace of mind.”
“Patients like Yvonne are why we do what we do,” adds Dr. Dini Hui, a maternal fetal medicine specialist who has a special interest in caring for pregnant women with kidney disease. “Yvonne was diagnosed with kidney disease at exactly the same time all of her friends were beginning to start families. A diagnosis at that time of life is incredibly difficult for young women.”
Now, Yvonne is a stay-at-home mom and says she’s never been happier. When asked about her advice for other young women, she doesn’t hesitate.
“When you hear ‘kidney disease,’ your future may seem insurmountable. Don’t give up. Talk to your health care team, ask questions. Ask about nocturnal dialysis, especially if you want to have children,” encourages Yvonne. “There is hope and you can find strength; I’m proof.”
When Clementine Sibanda started to feel really tired, she chalked it up to normal fatigue caring for a six-month old. When the exhaustion caused her to sleep much more than normal, she visited her family doctor. The results of her blood work were a shock.
“I was 26 years old and in end-stage renal failure,” says Clementine, who was rushed immediately to the hospital. “The diagnosis was life-altering.”
Clementine’s new reality involved balancing receiving dialysis with caring for her newborn, Michelle, and her eldest child, Mbongeni, who was seven years at the time. Her husband, Raymond, who she calls her rock, became a huge support as they found their footing with the new home dynamic.
After being placed on a wait list for a new kidney, which she eventually received in 2015, Clementine’s health team told her she wouldn’t be able to have more children. With two children already, Clementine didn’t give it another thought.
Then, six years after having her daughter, Clementine felt off. “I just felt different. I know my body on dialysis, and this was a different feeling.”
An ultrasound was ordered, and the technician delivered two surprises. “I was told I was pregnant, which was a definite surprise. Then, moments later, ‘I see two heartbeats’. I thought it was a joke!”
In 2011, Clementine began to visit Sunnybrook, where obstetrical and nephrology teams work together to ensure seamless care for pregnant patients on dialysis. Her twins, Thabo and Mandisa, were born the same year. During her pregnancy, Clementine continued with her dialysis regime, Monday to Saturday, from eight in the morning until around three o’clock in the afternoon.
When asked how she has held everything together, and keeps so positive, Clementine’s answer is simple. “If I tell myself I’m sick, I will be sick. If I tell myself I’m just in a situation that will pass, and this is temporary, I can get through each day.”
Clementine says mind over matter is incredibly powerful, and she constantly reminds herself there are people in worse situations.
“I have my four wonderful kids and an incredibly supportive husband,” she smiles. “I’m happy.”