It’s just after three in the morning, and the hulking machine next to my bed just nudged me awake with some elevator music, telling me to change positions. I’m wide awake now, and thirsty. But I’m also stuck: I won’t be able to easily leave my bed for another three hours and 42 minutes.
Not that long ago, I could get up and get another glass of water or use the bathroom whenever I wanted. Now I’m a prisoner to my bed, and to my glowing dialysis machine—which I’m hooked up to for nine hours every night.
This isn’t how I pictured I’d be spending my mid-thirties.
In January 2018, I had just returned from an epic two-week trip to Thailand. After years of hard work—waking up at 3 a.m. to deliver traffic reports from a helicopter, and moving several times across Ontario to work in smaller markets as a political affairs reporter, I had finally landed my dream job on the television station I grew up watching, in my hometown of Toronto. I had a great relationship, a great dog and plans to travel more and then expand our little family. I was happy. My life was rolling along, but then my genetics caught up with me.
I was still tanned and battling jetlag when I started to feel even more exhausted. I would often fall asleep within an hour of getting home from work. Some days, I couldn’t muster the energy to blow-dry my hair, and the two-block walk to the bus stop felt impossible. I started spending entire weekends in bed.
And there were more alarming symptoms: I was suddenly so itchy that I would scratch myself until I bled. I was cranky and couldn’t sleep: leg spasms would jolt me awake and so I would spend my nights wandering from my bed to the couch. I was nauseous and dizzy and cold all the time. Seemingly random bruises started to appear all over my legs and arms and would stay for weeks.
My condition wasn’t ideal for somebody who works 10- to 12-hour days chasing local news. My under-eye bags and exhaustion were visible to anybody who tuned in. One of my friends, in a kind but not-so-subtle gesture, bought me designer under-eye cream to help. I felt like I had aged five years in just a few short months.
I chalked it up to winter: I was tired because it was so dark outside. I was itchy because I had dry, winter skin. I was rundown because I was stressed from work. It didn’t seem like a trip to the doctor’s office would help because I wasn’t “sick”—instead, I had a list of seemingly disconnected ailments and I told myself that I was tough enough to combat on my own.
In March, I was at the grocery store, pushing around a cart filled with pre-made salads and pre-cut fruits, when I decided to sit down at the blood pressure machine. (Maybe the idea of sitting down for a minute is what convinced me to stop.) The reading was alarming: my blood pressure was so high, it was in what medical experts call the “stroke zone.” I didn’t really buy it—I figured the machine wasn’t accurate, but I called my physician and booked an appointment just in case. My doctor ran six blood pressure checks and as it turns out, the grocery store machine wasn’t far off. My doctor was surprised too. I was in good shape and ate well; there was no clear reason why my blood pressure should have been so high. She ordered blood work and sent me on my way.
A few days later, I had just left a press conference where I had to crouch on the floor in heels and a dress because I couldn’t handle standing for longer than five minutes. My cameraman Tony and I were driving to our next interview when my doctor’s office called and ordered me to go to the nearest emergency room. They said my kidneys were failing. I remember arguing with Tony that we could just finish the story; I was lucky he didn’t listen to me.
We hightailed it to the hospital. The triage nurse criticized my physician for scaring me, until she received my blood work. Then I was whisked into the treatment area and immediately seen by doctors. I was more confused than alarmed at this point—I didn’t understand why I was being given such high priority. I figured they’d realize there was an error soon and send me home. Instead, the physicians kept ordering more blood work. They gauged my kidney function to be somewhere between six and eight per cent. My levels of creatinine—a toxic waste product—were over 800; for someone of my age, sex, size and race, it should be around 85. I shouldn’t have been walking around, let alone working. The first physician told me I should plan on spending a few days or longer in the hospital. The second physician echoed that, and said I’d likely start emergency dialysis—a life-saving therapy that acts as a kidney—immediately.
Everything felt hazy.
I was admitted to hospital, but there were no rooms, so I was in a makeshift ward—a dozen beds crammed into a space formerly used as a clinic. My partner left work and hurried to the hospital, uncertain with what to do with this new information. I called my sister. I was hooked up to an IV, separated from the world by flimsy curtains as I explained what was happening. She called me back several times in disbelief. We agreed we would hold off on telling my mom until I had a better sense of what was going on—I didn’t want her showing up at the hospital in a panic.
We had seen this before. My father and uncle suffered from kidney disease and both were successful transplant recipients. But I remembered the lead-up to my father’s surgery. For years he was in and out of the hospital. He would spend his days in his dark bedroom, too sick and tired to go to work. It was the early 1990s, so his office got him a home fax machine and he often worked from bed. Three nights a week he’d go to the hospital to get hemodialysis. He tried his best, but he was essentially gone from our lives for four years, until he got his transplant.
Because of my family’s history of kidney disease, I had been monitored by a kidney specialist at the Hospital for Sick Children in Toronto until I turned 18. I had inherited a rare condition from my dad, Alport syndrome, but doctors didn’t think it would be an issue. Most women who have it are carriers, but don’t have symptoms. But in some cases, it can cause kidney failure.
Now here I was.
Within 24 hours of that press conference, I went from being on-air to being hooked up to an IV, bound to a hospital bed, my cobalt blue dress, blazer and heels tucked in a plastic bag. I had camera-ready hair and makeup… and I was in a generic blue hospital gown. I called my boss and apologized for not finishing my story.
Nurses fed me a constant stream of vitamins and pills to try to lower my toxin levels. My specialist was frank about my situation, but optimistic. He told me I would need dialysis; that with end stage-kidney failure I was essentially sterile and unlikely to be able to have children until I received a transplant, and that 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, prescriptions, dietary changes and a very quick transplant.
My mom was the obvious donor choice, but she was 63 and overweight, and transplant coordinators, who organize medical tests and look after the logistics of a transplant, wouldn’t even look at her file until she shed 50 pounds. So my mom got on the treadmill, and in three months she lost around 30 pounds. Progress, but in the meantime my body was giving out. Many people start dialysis when their kidneys are at about 10 percent, although there are a variety of other factors—like the levels of toxins in your blood—that contribute to the decision. Because I’m younger, I was able to hold out for another five months. But then the exhaustion and daily nausea became overwhelming. My toxin levels were getting worse and my kidney function had dipped down to six percent. I couldn’t wait any longer.
I had the option of choosing between peritoneal dialysis and hemodialysis. Although hemodialysis is generally more effective and takes less time per treatment than peritoneal dialysis, it involves a more complicated surgery as well as visits to a clinic three times a week. I chose peritoneal dialysis because it’s a less invasive surgery, a transplant seemed close and because I could easily do it from home—easy being a relative term. And so, last August, a catheter was installed in my stomach.
Now, every night, for about nine hours, a solution of sugar, salt and other minerals goes into my peritoneal cavity— which is located around the stomach—and my peritoneal membrane filters our some of the toxins that aren’t being cleaned out by my kidneys. After about an hour or so, the solution drains out and the process starts all over again. I haven’t slept properly in seven months, because inevitably an alarm will go off and I have to troubleshoot error messages at 3 a.m. I’m fortunate that my partner is a deep sleeper, but the machine has impacted our relationship in other ways. It’s hard to feel attractive when you have a foot-long catheter hanging out of your stomach.
I’ve started getting used to my new reality, but it still isn’t easy. Most of my clothes don’t fit because of the water retention or my catheter. I’ve resorted to wearing blouses and looser sweaters most days, or throwing blazers over nearly everything I own. I have to test drive outfits as simple as jeans and a top to make sure that my tube doesn’t make an unexpected appearance, like when I reach for an item at a store or shake somebody’s hand.
My home office is now my dialysis room, stacked with cardboard boxes of supplies, which are delivered monthly in a big truck. I had to start tracking my blood pressure four times a day. Even when I’m bloated with fluids, I need to weigh myself twice a day—not exactly an ego boost—and determine how much of each solution I’ll need that night. I take a battery of vitamins and pills and shots to keep my hemoglobin, iron and protein levels high enough and my phosphorous levels down. I’ve become part nurse, part warehouse manager.
I’ve had to change my diet, too. No more diet cola, whole-grain breads, chocolate or ice cream. My kidneys simply can’t handle them. I could live without salt, but losing cheese—because my body can’t filter phosphorus, which can harden muscles and soft tissue and interfere with nutrient absorption—is the real challenge.
Experiencing kidney failure as a woman in her thirties is somewhat rare and I haven’t met anyone in else in the same situation to compare notes on how they’re coping in their relationship, or with all the superficial but still annoying stuff like the eczema I’ve developed on my eyelids. I also have never seen a character deal with kidney failure in TV or in the movies. We all have some idea of what to expect when somebody is diagnosed with cancer or diabetes, but to my knowledge, there isn’t a show where a character has had to squeeze in dialysis between antics. There’s no kidney-patient equivalent of Laura Linney in The Big C or Walter White going to chemo while cooking meth in Breaking Bad. One of my favourite movies, Steel Magnolias, mentions a mother-daughter kidney transplant, but you don’t see the lead-up, surgery or aftermath.
It’s now been seven months since I’ve started dialysis, and it has boosted my energy, but I’m still drained every day. I typically unplug from my machine by 6:00 a.m., then spend then next 20 minutes cleaning up, recording my vitals and re-sanitizing the equipment. I research the news for a few hours and make a few calls to line up stories before I head to my 10 a.m. pitch meeting. Then I spend my days with a cameraman driving through the city to conduct interviews, chasing politicians down hallways and writing anywhere there’s wifi and a plug. I typically have to file a new story each day, and ideally have a digital version written by 4 p.m., and two different broadcast versions shot and edited for the 5 and 6 p.m. newscasts. It’s a fast-paced, stressful job and I’m always on the go. I used to do research and meet with sources after I finished work around 7 p.m., often not getting home until 10 or 11; now I’m asleep well before the 11 o’clock news, sometimes within an hour of getting home. I barely see my partner, because when I’m at home, I’m not awake all that much.
I still go to bed thinking about news stories and data gathering, but now my mind is also swirling with medical appointments and tests, concerns about when I may be able to stop this cycle and when my life can return to “normal.” Every semi-long range plan—even as basic as taking a week-long vacation—comes with the caveat “if I have a kidney by then.”
My mom went on to lose 60 pounds in just six months. But in November she got a crushing phone call: her kidney functionality wasn’t high enough for donation. The news nearly broke her; she couldn’t find the words to tell me. Instead, my sister did.
I’m lucky that a few other family members as well as my partner have offered to donate their kidneys. Familial 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 our cousin Christine. Christine had initially offered to undergo tests, but I didn’t want to put her in a difficult position by reaching out to her directly.
It’s not exactly an easy ask. You’re not borrowing a dress or even a few thousand dollars, you’re asking somebody to undergo massive surgery and modify their way of life. People can easily live with one kidney, but they’re at greater risk of high blood pressure and in some rare cases, even kidney failure. There’s also the chance that the recipient’s body will reject the kidney—making the entire process, which includes a recommended six-week recovery time—futile.
Despite the sacrifices, Christine was quick to say yes. She completed the initial tests, but the co-ordinators will still take three-to-six months to decide if she’s a suitable donor for me. There is a myriad of additional tests to undergo, and the system also has enough time built in for the donor to fully consider the risks of the procedure. I’m grateful but it’s awkward. I want to call her every day to tell her how thankful I am that she’s going through this, but it feels like I’m adding extra pressure. Every time I comment on her Facebook posts, I worry that she’ll think I’m only doing so because I want her kidney.
I’m back in the newsroom now, after taking eight weeks off to recover from the catheter surgery and for the dialysis to start working. Well-meaning coworkers and sources will often say they’re glad to see I’m better, but I’m not. I won’t be until I get a transplant. Until then, my life is dictated by organs that don’t work: 56 hours of weekly therapy, my dizziness and nausea, my exhaustion.
Kidney disease isn’t mainstream, but given the number of people affected by it, it should be. The Kidney Foundation of Canada says one in 10 Canadians suffer some form of it, and the number of Canadians being treated for kidney failure has grown by 36 percent since 2007. Canada’s organ transplant waiting list has about 4,500 people on it, and more than three-quarters of them are looking for a kidney.
With so many lives affected, you’d think Canadians would be personally motivated to sign up as donors, but that’s not the case: less than 20 percent of eligible donors have done so. In Ontario, where I live, about 33 percent of residents have registered. Some of those people who haven’t registered likely have good reasons—religious beliefs, for example—but it amazes me that millions of other people don’t really have any excuse for not doing so.
The wait for a kidney from a donor who has died is between about three to five years, and if I don’t match with one of my loved ones, odds are I’ll be languishing on that list. This doesn’t just mean years of dialysis—it means years of exhaustion and the difference between living as a couple with a dog, or a family with children. Post-transplant, patients have to wait at least a year before trying for kids, and the medicine I’ll have to take will hurt our odds of having a healthy child. That said, progress is being made. Some women receiving hemodialysis are now delivering healthy babies, although their pregnancies are still extremely high risk.
I decided to share my journey through my diagnosis and dialysis because that’s what journalists do—share stories—and sometimes, they are our own. I thought it was important to shine a light on the disease and to be honest with our audience about why they didn’t see me on-air for a few months. I’ve been floored by the generous spirits of strangers who have reached out and offered to be tested to see if they’re a potential match. That’s kind, but it’s not why I’m speaking out. I really believe that if everybody simply signed their organ donor cards, most of us living with this disease wouldn’t have to struggle for so long. There’s no cure, and there isn’t anything I could’ve done to prevent it. But there is a cure for the years of waiting and uncertainty, and it’s so easy: most provinces, like Ontario, allow you to register to be an organ donor online. And earlier this month, Nova Scotia tabled legislation that would require adults to opt-out of organ donation—essentially making most people potential donors.
My cousin Christine messaged me the other day; she’s passed her colonoscopy, mammogram and other cancer screenings. She’s moved on to phase three of the process, and just needs to complete a few more steps: CT scans, cardiovascular tests and a psychological examination.
She’s excited. I’m cautiously optimistic. It will still take several months before she gets final approval—and from there, another several months before the potential transplant. If all works out, I could have a new kidney and be able to reclaim my life by Christmas. If not, I’ll continue to be tied to a machine every night, switching positions every hour, dreaming of freedom and the possibility of my life getting back on track.