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Preparing for her final year of nursing school at St. Lawrence College through Laurentian University, Rachael took a vacation out to British Columbia. Rachael lead an active and healthy life, and she was excited to go hiking on the west coast. She managed the hikes and enjoyed her trip, but, returning home, she had to admit that she felt tired and quite unwell; unlike her usual self. Before going back to school, Rachael repeatedly found herself in the emergency room in Kingston as she began feeling more and more unwell. Each time, however, she was sent home as bloodwork came back normal, and doctors told her that she was fine.

Due to her condition worsening, Rachael’s mother brought her back to the hospital and she soon began retaining the IV fluids given to her. Soon after, all of Rachael’s bloodwork came back from the lab and indicated that Rachael’s body had experienced severe multi-organ clotting and was told that her kidneys had failed.
“It’s all a blur. I remember them telling me that my kidneys were failing and then they transported me to a room to put a hemodialysis line in my chest, took biopsies of my kidneys, and put in a picc line...they tried many plasmapheresis treatments, and nothing was working to treat the breakdown and clotting of cells. It was confusing. No one in my family has any form of kidney disease. I’ve always taken care of myself. I didn’t know how [kidney failure] was possible.”

Physicians at the hospital were also perplexed by Rachael’s condition. While dialysis was keeping Rachael alive, no one could give her or her family definite answers.

“At one point they were telling my family ‘we don’t know what is going on and we can’t guarantee anything,’ and when you hear all of these well-educated physicians so unsure, it is terrifying.”

Eventually, Dr. Jocelyn Garland (nephrologist at Kingston Health Sciences Centre) who had spent many hours working on Rachael’s case, seemed to believe that Rachael was experiencing a rare disease called atypical hemolytic uremic syndrome (aHus), and started Rachael on a only medication used to treat aHUS- and soon after beginning this medication for the first time, Rachael’s situation began to look up.

Despite the medication showing evidence of healing damaged kidneys in many other patients diagnosed with aHUS and the few other diseases that this medication is prescribed to treat; Rachael’s kidneys showed no signs of possible recovery as the damage was far too severe. After many months of doing dialysis in the renal unit, Rachael began home hemodialysis in order to allow her the freedom to go back to finish her final year of nursing school. With doing dialysis treatments 4 days a week, Rachael finished her final year of nursing studies and began working at Kingston General Hospital.

After coming home from working at the hospital, and then finishing her 4-hour dialysis treatment, Rachael received a call that would send her packing for Toronto. On August 20, 2017, Rachael received a kidney transplant and now, is excited to have her life back and to return to the Kidney Walk in Kingston this fall.

“I feel amazing and my energy is phenomenal. When I was first diagnosed, I lost a lot of my physical strength, and when ill, it was initially quite difficult to get my strength back. With a lot of hard work- I was able to continue to live an active lifestyle, and it was so nice to be able to participate in the 2016 Kidney Walk in Kingston. A lot of my family and friends joined me, and to be surrounded by such positive people, seeing the amazing support and hearing the stories of other people and families who have experienced similar health setbacks and have strived to overcome them as well- was so positive and inspiring! It means a lot to me to join again this year as the ambassador...It is a lot to be diagnosed with a rare disease and to live with kidney disease and I think that it is having the support of others and maintaining a positive mindset while you are going through that, which makes a big difference.”

Rachael encourages other families in the area to join her at this year’s Kingston Kidney Walk to take a giant step in the fight against kidney disease. On Sunday, September 30, walk with your kidney community. To join, register online today www.kidneywalk.ca

Learn more about Atypical Hemolytic Uremic Syndrome (aHUS)