What a roller coaster life has been.
Looking back, I first noticed symptoms of heart issues at thirteen, during a cross-country ski race in Fort Nelson, BC. I was gasping for air just to finish. I thought I’d simply pushed myself too hard and needed to get in better shape. My cheeks stayed bright red long after the race.
As a teenager, I remember being winded walking up just two flights of stairs at my high school. Again, I blamed myself—thinking I was out of shape. I told myself to try harder. Do better.
One hot summer afternoon in Fort St. John, I fainted while riding my bike. A taxi driver saw me, loaded me and my bike into his car, and took me to the hospital. I love my small town. My family doctor happened to be on call. He scolded me for not eating and drinking enough, gave me lunch, monitored me for a few hours, and sent me home with a warning to take better care of myself.
This pattern continued for years.
At twenty-two, I visited my family doctor complaining of back pain during exertion. Some tests were done, but the results were overlooked. I became pregnant while my doctor was away. The physician I saw focused only on the pregnancy and didn’t review my history. As a result, I went through a high-risk pregnancy with undiagnosed hypertrophic cardiomyopathy. I was kept in the hospital for seven days after delivering my daughter, who would later be diagnosed with the same congenital heart disease.
Two years later, I returned to the doctor with extreme fatigue and back pain. This time, he reviewed my records and saw that earlier test results had flagged a heart issue. I was referred to Dr. Kavanaugh-Grey in Vancouver, where a right heart catheterization confirmed hypertrophic cardiomyopathy.
Being diagnosed with a serious condition at such a young age was a shock. The medication made me tired at first. At that time, resources and support for patients were limited—this was before the internet. Life went on, and I settled into a routine with occasional follow-ups.
In 2000, I became pregnant again. This time, I was closely monitored and delivered my son at the Royal Alexandra Hospital in Edmonton. He was breech and had to be delivered via a high-risk caesarean. He arrived three weeks early, weighing just 4 lbs 10 oz. I didn’t put him down for a year.
I was a professional working mom with two children. Life was busy and sometimes overwhelming. It was filled with camping, sports, trips to Jasper, Hawaii, the pyramids in Mexico, and so much more.
In 2006, I called my cardiologist to ask about the risks of traveling to Machu Picchu. He advised against it due to the high altitude. I went anyway. Surprisingly, I did better than some of the super-fit travelers who relied heavily on oxygen. My body was more efficient with the oxygen it had.
A year later, I underwent open-heart surgery for a septal myectomy. The muscle between the two chambers had enlarged so much that it was obstructing the adjacent valve. Dr. Ling performed the surgery. Everything went well. I was released three days post-op after recovering from anesthesia-related vomiting—still with 67 staples in my chest. I loved my little heart pillow. We stayed near St. Paul’s Hospital in Vancouver for two more weeks to be close to care in case of complications. We returned home just in time for my son to start Grade One. I became fluid overloaded and was prescribed diuretics—losing twenty pounds in the process. The surgeon had mentioned I might need a pacemaker one day. My cardiologist encouraged me to go live my best life.
In 2008, we planned a career move to Fort McMurray. As we prepared to relocate, I noticed worsening symptoms. A Holter monitor revealed I needed a pacemaker. I didn’t tell my partner—I believed it would be fixed and all would be okay. But symptoms worsened during the move. I couldn’t cross the street before the light changed. He was shocked. I had pacemaker surgery in early September 2008 and was literally running up hills two hours after discharge.
In 2010, I moved back to Fort St. John. My longtime family doctor had retired his practice, and there was a severe physician shortage. Finding a new doctor was difficult. My new physician didn’t fully understand my heart disease. He kept praising my cholesterol levels, while I kept explaining that my condition was muscular—hypertrophic cardiomyopathy. He blamed my forty-pound weight gain on menopause. I insisted that was impossible—I ate very little. I became very ill.
By summer 2015, I couldn’t walk my dog a block. I loved that dog. I tried riding my bike with him on a leash to give him exercise. We crashed. I dislocated my shoulder. If the ER team had asked why I was biking with a dog on a leash, I would’ve told them I couldn’t walk a block. Maybe they would’ve listened to my heart or done an ECG. They didn’t. They sent me home with instructions to take Advil.
I forgot Advil was on my “do not take” list. Weeks later, I felt off at work. I canceled my appointments and went home, then began vomiting. It wasn’t flu-like. I called someone to take me to the hospital—very unlike me. I was misdiagnosed with diverticulitis and sent home with prescriptions, including Tramadol—also on my “do not take” list. I didn’t speak to the pharmacist because I was so sick. Maybe we would’ve caught the error. We didn’t.
The issues continued for weeks. It was later determined I’d had a mild stroke that went untreated. I looked like death. My doctor didn’t know what to do. I emailed my cardiologist, explaining I was in trouble. He asked for bloodwork. I had it on hand and sent it. He called immediately: I was fluid overloaded. My BNP was 4500 (normal is 100). He asked if I’d taken any diuretics. I hadn’t. He told me the dose. Over the weekend, I lost nine pounds.
Monday morning, as I got ready for work, my leg hurt and turned grey. We called an ambulance.
At the ER, I was berated for taking too much Lasix. They assumed low potassium caused cramping. As I arrived, the pain stopped and my leg pinked up. They wanted to send me home. I refused and asked them to call my cardiologist. They didn’t. I insisted on seeing a cardiologist or internist. They were dismissive, saying I’d waste an ER bed all day. I wasn’t offered food or water. Finally, at 5 p.m., the internist came. From the moment he did a full-body exam, I felt heard and safe. We reviewed my symptoms. He got excited, called the cardiologist, and they did an echo. I was in atrial fibrillation, throwing clots from my right atrial appendage. They were certain I would’ve died had I gone home. I spent seven days in ICU.
The grief and trauma of not being heard stayed with me. I wouldn’t have a transesophageal echocardiogram for another seven months to take me out of a-fib. By then, my right heart had suffered significant damage. My quality of life deteriorated. I went into a-fib again, then atrial flutter.
In 2019, I moved to Vancouver for better care. At my first pre-transplant clinic visit, I was asked why I thought I deserved a new heart. I felt judged—like I had to prove my worth. I was told it was too soon. I went home and did deep emotional work around worthiness. I deepened my yoga practice and walked the seawall daily.
By spring 2022, I couldn’t carry a grocery bag one block. Cleaning my tiny apartment exhausted me. The team said it was time. I began the exhausting process of transplant testing. The weekend of my right heart cath, I moved to a larger apartment so my partner and family could care for me post-transplant. I hired movers and pre-packed everything—I wouldn’t be able to lift after the procedure.
The doctor was alarmed by my right heart pressure. He asked if I was on the transplant list. I said I was close. That was June 27. I was listed on August 30. I got COVID the last week of July.
I waited twenty-one days for the call. It came at 11:00 a.m. on September 21. Surgery was scheduled for the next morning. I was admitted at 5:00 p.m. I called my partner in Fort St. John. He was at work but made the afternoon flight and walked with me to the hospital. I remember little after the call and walking into surgery. The last thing I said to the surgeon was that I was worried about my right heart pressure. He told me not to worry.
I became coherent twelve days later—and discovered I was blind. The transplant was difficult, with many complications. I spent 145 days in hospital.
But my story doesn’t end there.
Despite the challenges, I have so much to live for. During those long hospital days, I convinced some of my doctors to do the Grouse Grind with me. I’m now approaching my third anniversary. I’ve had setbacks, but I’m learning. last week at the gym I got on the stair master for the first time and am now actively training to do the Grouse Grind. I will make it happen for 2026! It will be a big event, and you all are invited.
I may not be able to ride my bike with no hands, but I can cross the street with my eyes closed!
💙 The Power of Being Seen, Heard, and Valued in Care.
Getting the right care at the right time isn’t just a goal—it’s a lifeline. And at the heart of that care is you, the patient. Not just a chart number or a diagnosis, but a person with insight, intuition, and lived experience. We know our bodies better than anyone else. That’s why it’s essential to speak up, ask questions, and advocate boldly for what we need. Your voice isn’t just important—it’s vital.
Health care professionals, I urge you to listen deeply. When patients are treated as partners in their care, outcomes improve, trust grows, and healing becomes a shared journey.
My own path to receiving the care I needed wasn’t easy, and I wouldn’t wish the detours on anyone. But thanks to the incredible dedication of my kidney and post-transplant team, I’m here—and thriving. I’m profoundly grateful to my donor family and to BC Transplant for the gift of life, a second chance I refuse to take for granted.
And to CNIB and Vision Loss Canada—thank you for walking beside me as I found my way back. Your support has been a beacon.
Let’s build a system where every patient feels empowered, every professional feels connected, and every story is honored. Because care isn’t just about medicine—it’s about humanity.
Copyright @ 2025 Edwina Nearhood | E-mail: Edwina.nearhood@gmail.com
