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Sask. residents feel sidelined as organ transplants and surgeries get cancelled

Eden Antonia Janzen has been on dialysis for the past four years, hoping to get a kidney transplant. But after Saskatchewan’s organ donation program was suspended last month due to hospitals being packed with COVID-19 patients, she is distraught. 

Janzen was 20 in 2016, when an ultrasound for presumed appendicitis revealed one of her kidneys was smaller than the other.

The Regina woman was diagnosed with chronic kidney disease. Her kidneys were only functioning at 20 per cent.

She began dialysis a year later and has remained hopeful for a kidney transplant.

“I was in the hospital listening to the radio when they said the transplant program was suspended,” Janzen said.

“I thought in 2021, I’d have a kidney, then I was like 2022 will be my year, but now I feel it can be a long time.”

Eden Antonia Janzen has been on dialysis for the past four years and said her hopes of getting a kidney transplant seem distant. (Submitted by Eden Janzen)

The 25-year-old said that in the past year, some 13 other dialysis patients she knew have died. She mentioned it in a letter she recently penned to Premier Scott Moe. 

“There was this patient who had died right in front of me across the room. Three months later, I was in the exact spot, like that exact room,” she said with tears in her eyes. 

She is worried that the strain the health-care system is experiencing might put her in a similar situation.

Janzen also has a parathyroid surgery pending, and developed Cushing-syndrome due to prolactinoma, a benign tumor of the pituitary gland, which resulted in diabetes. 

She said it is disappointing to have been taking immense care of her health to be eligible for a transplant, while also dealing with other health complications, only to get rejected.

“A kidney isn’t a cure, it’s a miracle. It’s better than winning the lottery,” she said.

The Saskatchewan Health Authority (SHA) said in an email that there has been at least five “missed opportunities” for organ donations since the program was suspended.

“Missed opportunities may not always progress to a donation, however we have lost the ability to explore this option due to deployment of donation and transplantation staff,” the SHA said in an email statement.

The SHA said that in rare cases, organ transplants from living donors or out of province deceased donors can be considered on a case-by-case basis, depending on a number of factors including suitability and matching of organs, the overall health care system’s ability to provide care (for both the recipient and the donor), safety and bed availability.

“As of September 30, 2021, the kidney transplant wait list is 51 and we have two patients waiting for a living donation organ. We have been successful in a living donation transplant in September despite slowdowns and continue to investigate urgent cases on a case-by-case basis,” the statement read.

Health care is failing 

Janzen woke up on July 27 with excruciating pain and struggled to walk. She bought crutches, but had to be wheeled in for her dialysis appointments.

“I live on the third floor with no elevators. So for days, I was climbing the stairs. I’m pretty good with pain but that was like the most pain I’ve ever felt,” she said.

Janzen said she requested an X-ray from an on-call doctor, but was denied and told “it was a pulled muscle,” even when she told the doctor about her 2019 diagnosis of osteoporosis, a condition where bones get weakened and are at risk for unexpected fractures. 

That day her neighbours found her at the bottom of the staircase and offered to carry her to her unit. 

Janzen said the health-care system is strained to a point where getting X-ray is a challenge as she recently suffered from a femoral fracture and had to be wheeled in for her dialysis appointments. (Submitted by Eden Janzen)

On Aug. 8, Janzen finally received her X-ray revealing her femoral neck was broken. A rod was put in her hip as a part of the surgery. 

Janzen said that although she received an apology letter from that doctor, the situation illustrates the present plight of health care in the province.

“It’s traumatizing. It would have been broken, that was inevitable. But if it was caught sooner, it wouldn’t have been this severe,” she said. 

“I’ve 65 years of experience in 25 years. My little joke is I won’t break a fingernail but I’ll break the femur.”

Frustration with unvaccinated

Janzen said she is infuriated with the current situation, as even after having three shots of the COVID-19 vaccine she is sidelined. 

“People are refusing the vaccine and are neglecting their health and their children’s health, but they’re still getting the top notch care and all the beds,” she said.

Jessica Edie said she is frustrated to see her surgeries get cancelled to prioritize resources for unvaccinated people. (Submitted by Jessica Edie)

Janzen’s friend Jessica Edie said she is enraged, as she has three surgeries have been postponed.

“I’m very angry as I’ve done my part. I’m fully vaccinated,” Edie said.

Edie said it took 15 months and four surgeons to finally diagnose the lump in the right leg that she first started seeing in November 2019. 

Her first specialist shrugged her off saying “it’s all in your head.” Then this July a vascular surgeon in Saskatoon said her lump is due to varicose veins, which Edie said is hereditary, and put her on an urgent list for a surgery. 

The surgery that was scheduled for September has now been postponed.

The 22-year-old is also waiting for two more potential surgeries. One is to put a stent in her valves in the leg to ensure proper blood flow and the other is for compartment syndrome, wherein muscles are unable to receive proper oxygen. 

‘I could lose my leg’

Edie has been waiting since July to get a CT scan done for her compartment syndrome testing and said feels hopeless.

“It could be another six months to a year before I get another phone call for surgery. It’s really upsetting because besides other issues in my legs, compartment syndrome is very serious. I could have permanent damage to my muscles,” she said.

“If it doesn’t get dealt with, I could lose my leg.” 

Edie said her situation is worsening by the day. Even though she consumes marijuana for medical use to alleviate her pain, she is having trouble sleeping.

“I have really bad restless leg syndrome, which means my legs constantly twitch and hurt at night when I’m trying to sleep. It is very painful,” she said.

Edie said it took 15 months for four surgeons to diagnose the lump below her right knee only to get the associated surgeries get postponed. (Submitted by Jessica Edie)

It has started to affect her academics, as her correctional studies course at Saskatchewan Polytechnic in Prince Albert requires a physical training component. 

Edie said she is struggling, and feels mentally and physically drained. 

“I’m feeling discouraged. When I saw my surgeon in July, she was flabbergasted at the fact that none of the doctors had looked into why I have this lump,” she said.

She said her father has also been waiting for a similar vein surgery since last June.

Edie too has emailed Moe.

“There has been a significant increase in acute care and ICU patients and this has put a strain on our hospital resources,” the government of Saskatchewan said in an email statement. “To maintain our standards of care and support, some programs, including the Saskatchewan Organ and Tissue Donation Program, have been suspended. The SHA is saddened as an organization to have to take this step as part of its overall service slowdown.”

“A lot of people are being neglected because of COVID. That’s not how it should be,” she said.

“Surgeries need to be a priority and no 22-year-old should be living like this.”

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