Patient Story: Joanna Holland
“Jeanette, [my organ donor,] is the greatest human being on earth. She’s my angel.”
It started in 2016, with flu-like symptoms – migraines, nausea, chronic fatigue, a puffy face. The 37-year-old aesthetician put it down to too many late nights and the stress and physical strain of running her own spa. She started popping pain killers and muscle relaxants “like they were potato chips,” says Joanna Holland.
Then, on a girls’ winter getaway to Mexico, her condition worsened. “I thought my head was going to explode. After we landed, I went to the hotel room and spent the rest of the trip throwing up. I told my friends, ‘I feel like I’m dying.’ Since I’m young, no one thought much of it, that it was just a bug I’d picked up,” Joanna recalls.
Back at work in Toronto, she discovered her stomach was covered in bruises. A client said to her, “You don’t look good. You haven’t for a long time. I’m sending you to my family doctor. Today.”
After taking her blood pressure, the doctor told her to get to emergency. He was concerned she was going to have a stroke. She was still in denial that anything was seriously wrong, but her mom, Maureen, insisted they go. Within hours she was transferred to intensive care. By the time she was diagnosed with atypical hemolytic uremic syndrome, or aHUS, a rare blood disorder in which the red blood and platelets are destroyed within the inner lining of blood vessels, leading to organ damage. Her kidneys were functioning at nine per cent.
Joanna spent the next 20 days in the ICU. She got approved for Soliris, an expensive drug that put her aHUS into remission. She underwent a course of hemodialysis before switching to peritoneal dialysis, which she could administer herself at home. But she needed a new kidney.
Then in December 2018, while at dinner one evening at a local restaurant, she overheard someone at the next table talking about a kidney transplant. She introduced herself. The woman asked Joanna if she was being treated at St. Michael’s. She wasn’t. The woman said, “Get transferred there. They’re the best.”
The transplant team at St. Michael’s accepted her right away, and has cared for her since. Joanna says it was the best move she made.
In the meantime, her search for a compatible kidney donor was ongoing. Friends set up a website to get the word out. Family, friends and complete strangers got tested. No one was a match. Then one day, Jeanette Hughes, a woman in Maureen’s book club, dropped by, with a jar of pickled beets, but really to talk about a decision she’d made. She had spoken to her own two daughters about donating her kidney to Joanna, and they’d given their blessing. If something had ever happened to her own girls, she hoped that someone would come forward. Jeanette got tested and was a match.
“Testing is such a roller coaster of emotion,” says Joanna. “I couldn’t believe how many people were coming forward for me; and then there’s the inevitable disappointment when there’s no match. I was floored when Jeanette came forward. I’d never met her before, and she and my mom had really only seen each other at book club. Now they’re inseparable and Jeanette’s part of the family. She is the greatest human being on earth. She’s my angel,” says Joanna.
The transplant, performed by Dr. Michael Ordon, took place in June 2019.
Joanna was disappointed she didn’t wake up ready to take on the world. She had pain. There were setbacks. She experienced hair loss from the antirejection drug tacrolimus that she’s on for life. And because she is immunosuppressed, COVID-19 has exacerbated her stress by keeping her apart from loved ones. But at every turn, St. Michael’s kidney transplant and care team was there for her, she says.
“I am alive. My kidney is working well. There was no flare up of aHUS, which could have happened. And I found an Instagram transplant group where we chat about hair loss and commiserate.”
“I tell everyone, ‘Don’t take your health for granted.’ I ignored it for so long. I didn’t advocate for myself strongly enough early on. And I admit, I still sometimes think, why me? But I keep in mind what other patients told me. ‘There is light at the end of the tunnel.’”
“I felt respected and heard”
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