The subject heading on the email was surprisingly mundane: “Final pre-op appointment letter.” It sat in my inbox for hours before I finally opened it, believing it was just another pre-screening for the kidney transplant that I desperately needed. There was a list of appointments and test dates, and at the bottom—almost as an afterthought—it said: “Your kidney transplant surgery has been scheduled for Thursday, June 13, 2019.”
I stopped cold. I had to reread that line several times before I could start to grasp what it really meant: My cousin Christine was willing to risk her life in order to save mine.
In January 2018, I started feeling exhausted and extremely itchy and cold all the time, but I chalked it up to working too hard and dry, winter skin. Another two months passed before I tested my blood pressure at the grocery store and the shockingly high reading prompted me to make a doctor’s appointment.
My doctor ran a few tests, and I continued on with my life. I’m a television reporter at CityNews Toronto, and I was leaving a press conference for another interview when I got the call: My kidneys were failing. On my doctor’s advice, my cameraman hightailed it to the nearest emergency room and I was admitted. There I was, decked out in a hospital gown, with an IV in my arm, in camera-ready hair and makeup. I couldn’t believe what was happening—even though kidney disease runs in my family. My father had spent four years on dialysis before receiving a transplant; he passed away at 50 from a complication of the disease. I knew that I had inherited a rare kidney condition, Alport syndrome, from my dad, but I had been regularly monitored until I was 18 and my doctors didn’t think it would be an issue. Most women who have it are carriers, but don’t have symptoms. I was supposed to be in the clear.
My mother immediately started the process for becoming a living donor. But she had to lose 50 pounds before her application would be considered. She got on the treadmill, while my kidney specialist and his team tried to help me stave off complete failure. He was frank about my situation, but optimistic. He told me I would need dialysis and that with end-stage kidney failure I was essentially sterile and unlikely to be able to have children until I received a transplant. And if I didn’t get a transplant, I would eventually die. Many doctors would have rolled me straight to surgery to install the equipment needed for dialysis, but he thought I might be able to avoid it with the right combination of vitamins, prescription drugs and dietary changes, and if I didn’t have to wait too long for a transplant.
After three days, I was released from the hospital but returned for countless appointments. I had to do biweekly blood tests, see a series of other specialists and attend a kidney clinic at least once a month. The latter was a one-stop shop of sorts, where I would meet with my nephrologist, dietitian, nurses and social worker to track my health and get support on navigating the complicated world of a sudden end-stage disease.
I also had to go through a transplant workup: ultrasounds, cardiovascular tests and even vascular tests to see if I was able to undergo hemodialysis (having blood removed and cleaned through a machine, then pumped back in).
My diet changed dramatically, too; no more Diet Cokes, no more pickles and no more cheese, because my body couldn’t filter out all the phosphorus and sodium. I had to limit my liquid intake to less than 1.5 litres a day, and chewed gum to quench my thirst. I also had to take a battery of pills—vitamins, minerals and prescription drugs—and get weekly shots to keep my hemoglobin levels high.
After five months, my kidney function dropped further and my symptoms got worse. I had restless leg syndrome and could barely sleep; I was so exhausted that some days I couldn’t get out of bed. Seemingly easy tasks, like putting away laundry, became monumental. Though the process to determine if my mother could be a donor was still under way, I couldn’t wait much longer. In August 2018, a catheter was inserted into my stomach and, by September, I was doing peritoneal dialysis every night, for nine to 10 hours, at home. I became a prisoner to my dialysis machine.
During this time, my mother lost the weight, but she was ultimately deemed an unsuitable candidate. I was put on the wait-list for a deceased donor, but I was advised that, given my blood type, I wasn’t likely to be called for seven years—if I could survive that long. And then Christine stepped up.
Christine and I didn’t grow up together. My extended family is fairly close, but she’s 17 years older than me so she wasn’t a playmate; she was someone I looked up to. I remember being eight or nine and asking her if I would get her high cheekbones and beautiful eyes when I grew up. Little did I know that I would end up getting so much more.
Christine had already gone through the process to be a living donor when her father-in-law needed a transplant several years before. She was a match, but a blood relative was ultimately a better option. For some reason, she was willing to go through it all again. Familial organ donations are often best, and live donor transplant recipients typically have better outcomes and much shorter wait times. But transplant coordinators will only look at one candidate at a time, so once my mother was off the list, my sister—who isn’t eligible to donate because she shares the same genetic variant as me—immediately called Christine, who had offered to be tested when I was first diagnosed.
I didn’t want to put Christine in a difficult position by reaching out to her directly. It’s not exactly an easy ask. You aren’t borrowing a dress or even a couple thousand dollars—you are asking somebody to undergo massive surgery. The procedure for a living donor can actually be longer and riskier than the recipient’s. Kidneys are protected by a variety of other organs, which means there’s a chance that those organs and their surrounding tissue could be injured during the removal process.
Despite the sacrifices, Christine was quick to say yes. She completed the initial tests, but the coordinators then took five months to confirm that she was a suitable match. There were myriad additional tests to go through, and the system builds in time for the donor to fully consider the risks of the procedure. Despite being a mother of five in her mid-50s who was also helping to care for her seriously ill father, Christine regularly made the 90-minute drive from her Keswick, Ont., home to downtown Toronto for testing. Sometimes the tests were scheduled so early that she’d leave home before dawn or stay in a hotel the night before. I was incredibly grateful to Christine, but this period was awkward. I wanted to call her every day to tell her how thankful I was that she was going through this for me, but I didn’t want to add any extra pressure. Every time I commented on her Facebook posts, I was worried that she would think I was only doing so because I wanted her kidney.
Christine found out we were a match before I did, and immediately called to tell me. We cried and laughed together, but she seemed more excited than I was. I still hadn’t wrapped my head around the fact that she was willing to risk so much of her life for mine. She was assuming the potential for future high blood pressure or kidney problems, among other issues, so I wouldn’t be tied up to a dialysis machine every night.
Christine and I had our final pre-op appointments on the same day, and that’s when it truly sunk in. I was petrified about what could happen to Christine and to me. What if the transplant didn’t work?
Two days later, I called Christine to see if she would be okay with postponing the surgery for a few weeks. I felt like I needed more time to process what was happening. She talked me off the ledge, reassuring me that she knew the risks and was willing to take them. Then we joked about how horrible our hair would look after spending days in the hospital. By the end of our call, I felt reassured that Christine truly wanted to do this—and so did I.
Christine and I didn’t get to see each other the morning of the transplant. She went into surgery hours before me, while I was surrounded by family in the waiting area. Surgeons removed her kidney, staff cleaned the operating room and then that same team transplanted her kidney into my body—close to my groin, attached to the femoral artery, leaving my non-functioning kidneys in place, because removing them could harm my other organs.
I had imagined passing Christine in the hall or even being wheeled in together holding hands. I wanted the reassurance that she was going to be okay—and one last chance to tell her how grateful I was. It didn’t happen. Instead, I woke up hours after the surgery to cheers from the street: The Toronto Raptors had just won their first NBA championship. Those hoots and hollers weren’t for Christine or me, but they may as well have been. For the first night in 10 months, I wasn’t plugged into a dialysis machine.
I spent the next few days in a drug-induced haze in the equivalent of a transplant-only ICU, while Christine recovered on another floor. When we finally saw each other, the newly formed bond between us was remarkable. I felt completely linked, like sisters. She would never again be a cousin who I only saw at holidays and weddings.
When Christine walked into my room, a wave of relief swept over me. I had a girlfriend visiting at the time, and Christine put her phone in camera mode, handed it over to my friend and then gave me a giant hug. That photo is now an iconic one in our family.
Christine was discharged a few days later and spent the summer recovering with seemingly no setbacks. My recovery was more gradual, but I felt the impact of her kidney almost immediately. After I sobered up from the pain meds, I felt years younger. I didn’t have to drag myself out of bed or deal with 11 hours of dialysis every night.
I could last an entire day without needing a nap. If I wasn’t recovering from the surgery itself, I would’ve been back in a yoga studio or hitting the beach. It was tough to feel so good when my body wasn’t quite ready to let me take advantage of my newfound vitality.
I knew it would take some time before I could regain my formerly active life, but I wasn’t prepared for the post-surgery body-image issues. Before the transplant, I had scoured the internet for pictures of women around my age, post-surgery. I couldn’t find any, which made me even more nervous about what I’d wake up to.
In the days after the transplant, I gained 25 pounds in water weight as a result of the steroids and other medications I was on. I didn’t have any clothes that would fit around my belly and I was resigned to wearing pyjamas all day. I felt so horrible about myself—which made me feel even more horrible. Here I was, alive and feeling better, but I was wallowing in self-doubt.
After one week in the hospital, I was able to go home. Two and a half months after surgery, I finally made it to the beach—and it felt as though all eyes were on my scars. I had a diagonal incision about the length of my hand across my stomach from the transplant, smaller horizontal dashes from the laparoscopic surgeries to insert and remove my dialysis tube, a small hole from the dialysis tube itself and a kidney bump on the lower right side of my abdomen from where the new kidney now sat. In my bikini, all of this was on full display.
I tried to ignore the stares, because I didn’t want to hide in oversized T-shirts all summer. I also didn’t want other people going through kidney surgery to feel self-conscious about their bodies. So I enlisted the help of a photographer friend to shoot some pictures of my scars. I shared them on social media and with my television viewers, in hopes that someone else on this journey would stumble upon them and feel reassured that the scarring isn’t really that bad. I received lots of feedback, but what touched me most were the messages from people about to undergo a transplant or waiting for one, who were happy I could give them an idea of what life would look like post-surgery. Some even told me they couldn’t wait to get those same scars. It reminded me how fortunate I am to have them.
I’m on the other side of my surgery now, but I will always have kidney disease. I need to take certain medications for the rest of my life; the immunosuppressants I’m on—to ensure my body doesn’t reject Christine’s kidney—make me vulnerable to every illness, disease and viral infection. They also have radically increased my risk of skin cancer, so I can’t go outside without lathering up in sunblock. I go for blood work every week and if my levels of creatinine (a toxic waste product) are too high, I’ll be readmitted to hospital.
That’s what happened last Labour Day weekend. I was ready to go away with my partner on our first overnight trip in years—or at least the first one where we didn’t have to bring boxes and boxes of dialysis solution, a 50-pound dialysis machine and enough supplies to be mistaken for an exhibitor at a medical trade show. We were about to leave the house when I got the call.
My creatinine levels were rising: They were more than double a healthy person’s and my nephrologist wanted to admit me to the hospital. He was concerned that my body was rejecting Christine’s kidney. For the first time, what I’d been through fully hit me. I sat on the floor of my bedroom, next to my suitcase, and sobbed—about the potential loss of the kidney, what that would mean for my gradual return to normalcy and also the horrible possibility that all of Christine’s heroic efforts might have been in vain.
I told just a handful of people I was back in the hospital; I decided only to let Christine know if things escalated. My doctors weren’t sure what caused the spike, but after two days on an IV, my creatinine levels started returning to normal.
I was waiting to be discharged when Christine sent me a text. “Hey there. How are you feeling? Hope everything is still going well.” We hadn’t spoken in about a week, so I was shocked she would send this message while I was lying in a hospital bed. I told her about the false alarm. She’d later tell me that she felt something was wrong all weekend.
In late September, Christine told me that her single kidney had grown (which is common for solo kidneys as they pick up a bigger workload) and she now had 70 percent functionality. That was the first night in months where I slept soundly. She was going to be all right and so would I.
I returned to work in October 2019 and feel even more invigorated than before my diagnosis. I’m able to fully enjoy life, whether it’s going to our annual girls’ Christmas party without falling asleep on the couch or taking long walks with my partner. A year ago, I was tied to a machine every night, dreaming of better days. Now they’re here.