She was majoring in political studies at Queen’s University in Toronto. He was a friend of a friend studying the same thing, while already working on Parliament Hill. 

After being introduced, the pair began to chat regularly online, and eventually, she went to meet him in person in Ottawa. The rest, as they say, is history. 

The couple got married three years later and soon made the move to Vancouver to begin their own real estate consulting business.

Signs of any health issues only entered the conversation in the summer of 2018 when Niilo, whose career saw him crisscrossing Canada, felt exhausted. He had a cough, flu-like symptoms, and other symptoms of what the couple assumed was burnout.

“With this in mind, we went to San Francisco to celebrate our 10-year wedding anniversary,” Rachael remembered. “On that vacation, Niilo’s ‘flu’ was getting worse, and he spent most of the trip sleeping.”

After feeling worse and worse throughout the week, Niilo visited the doctor when he returned home. It was discovered that he was suffering from an unexplainable but rapid state of kidney failure.

“Following his biopsy, Niilo was officially diagnosed with a very rare, one-in-a-million-person, autoimmune disease called anti-glomerular basement membrane disease (anti-GBM),” Rachael explained.

Niilo spent two weeks at Vancouver General Hospital (VGH) undergoing 15 rounds of plasma exchange, followed by an onslaught of other treatments. His condition stabilized, but he was told that he would need a new kidney within the next 12 to 18 months

“I knew right away that I wanted to be a part of Niilo’s transplant journey,” Rachael remarked. “From day one of his illness, I had been desperate to take on the burden of his kidney disease. Here was my opportunity to finally do something tangible and meaningful to help him.”

The couple met with the team at the VGH Transplant Pre-Assessment Clinic on Thursday, March 12, 2020, which ironically was World Kidney Day. 

The next day, Rachael went to get blood tests, and just two days after that, the world shut down. The COVID-19 pandemic lockdowns were in full swing.

“No one was allowed to move forward in the donor testing process,” Rachael said. “It was terrifying! We had no idea what COVID would mean for Niilo.”

After some anxious months spent waiting and delays completing the screening process because of the pandemic, Rachael found out she was a match for Niilo and was approved to be his donor.

It couldn’t have come a moment too soon; his kidneys were on a slow but steady decline. 

On top of work, the transplant, and her husband’s health, Rachael was also tasked with packing up all the couple’s belongings to move to a new home.

“It was a very stressful time.”

Once the date was finally set — March 3rd, 2022 — there would be no looking back. The kidney transplant was a success.

 

“Niilo is thriving,” Rachael said. “With my kidney, he is running, strength training, doing all these things, so I am now working hard to keep up! It’s amazing.”

Fast forward one year later, Rachael is now an active volunteer with BC Transplant. She has staffed the BC Transplant booth at various events and shared her story as a living donor at speaking engagements.  She also sits on the board of the Transplant Research Foundation of B.C.

“The experience of watching my husband go from a sick, muted version of himself to a thriving, healthy, energetic version has been both awe-inspiring and humbling,” Rachael said. 

Rachael stated that she will continue to volunteer while giving gratitude to every clinician, researcher, and medical professional who makes transplants happen and works to find a cure.

She concluded by saying that she is grateful for the journey, especially knowing and seeing that there was a whole community of people rooting for her and Niilo every step of the way. 

“I want every patient, family member, friend, colleague, and community member of that patient to experience the same uplifting effect of transplant that we have had.”

Written by: Ryan Uytdewilligen, BC Transplant Volunteer