We previously talked about patient Cheryl Stagg. Now we look at the story of her sister Glenda’s kidney donation.
Manitoba Renal Program staff member Glenda Peebles is used to dealing with kidney disease through her work. As an Aboriginal Liaison Coordinator, Glenda supports patients living with all stages of kidney disease, but the disease suddenly hit close to home.
Glenda’s sister Cheryl was diagnosed with renal failure. “I think she was three months into the renal clinic,” Glenda recalls when her sister broke the news. Glenda immediately started attending appointments with her sister, to help her sister understand and cope with all the new information about her health. While doctors were trying to prep Cheryl for dialysis, Glenda says Cheryl wasn’t quite ready. “She kept putting it off.”
Glenda wasn’t aware when Cheryl was urgently started on hemodialysis one day. “I wanted to be there for her, but I didn’t know.” Glenda said Cheryl struggled with the experience and initially didn’t want to return for more treatments. “Even though she knew she was going to start dialysis eventually, it was still all foreign for her.”
Soon after beginning regular treatments, discussions started about the possibility of a kidney transplant. Glenda says Cheryl needed time to get comfortable with the idea but soon agreed. Glenda’s immediate reaction was a yes, and she never faltered. “I never did, not through the whole process. They give you every opportunity to say no.” Glenda laughs remembering how tired she grew of being asked if she still wanted to move forward.
It was a six-week process for Glenda, Cheryl and their other sister to be tested to see if they were matches. “My other sister was a better match for her. They were going to choose her.” But the testing process revealed some health problems for Glenda and Cheryl’s sister. “Her path took her into a different direction.”
The donor focus then became on Glenda who didn’t match as well, which meant a higher risk of Cheryl’s body rejecting the organ. They continued until further testing revealed antibodies in Cheryl’s system that made Glenda an unsuitable donor for her, which was disappointing.
The next step was being put into the Living Donor Paired Exchange (LDPE) Program which meant they could be paired with another recipient/donor combo. “I would be donating to someone else’s pair and their pair would donate to her.”
A year later, with no pair matches yet to surface, Glenda received a life-changing phone call from the Transplant Manitoba living donor coordinator. “I didn’t understand why she was calling me. I thought it was work related because we work together some times. She told me I could directly donate to my sister. I was in shock.”
Cheryl’s monthly blood work revealed the antibodies were gone making Glenda a suitable donor for Cheryl after all. A few months later it was time for the surgery and, suddenly, Glenda’s nerves crept in.
“I was waiting for the other shoe to drop,” she recalls. She was worried that after all the testing and all this time, something would stop the surgery from happening. “I wasn’t sure I could deal with the disappointment.”
Glenda had thought herself prepared, ensuring the health-care team gave her all relevant information – good and bad. Being someone who worked in the field, or close to it, she thought she knew what to expect but, she says, nothing prepared her for how she felt in the days and months following the surgery.
Her first surprise was the pain. “Nobody told me what kind of excruciating pain I was going to be in.” She struggled in the first few weeks, particularly right after the surgery. “Morphine makes me feel awful,” she says about trying to avoid the painkiller, feeling it compounded the problem. Despite being in pain, she was discharged and said dealing with her recovery at home became even more challenging. She had not counted on being so immobile and couldn’t sleep due to pain, all the while still trying to manage a household.
She also found herself still needing to take on the role as her sister’s main support and advocate, helping ensure her sister vocalized any issues with her recovery, while trying to recover herself. “She would tell me things and not tell the nurse,” she explains. She also felt like suddenly she had no one to talk to and work through the recovery with. This was the second surprise.
“You go through a sense of loss. I had phantom pain where my kidney was, I felt like there was a hole there,” she explains. “It’s a lot of feelings. You are overwhelmed. You are glad it’s over, glad it’s working for her, worried for her because she had some complications.”
While she hadn’t chatted with a donor beforehand, chatting with one after helped her realize that her feelings were normal and part of the process. “We helped each other recognize where the gaps are.” Her unique position of being in the field of kidney health and being a kidney donor has Glenda involved in initiatives and discussions that aim to evaluate and improve service delivery in the donor process. While she understands the need for focus being on the recipient after surgery, she felt like she could have used more support and a health-care team follow up sooner.
In hindsight, she recommends potential donors chat with those who have been through the process, not underestimate the surgery recovery and have supports lined up at home. After two months off work, Glenda went back and is approaching the one-year mark post-surgery while living life normally with her one kidney. Glenda says her sister is also doing well. They will both continue to be monitored to ensure their kidneys stay healthy. While the experience was hard at time, Glenda says she still has no regrets.