It has been a little over six months since my sister Helen passed away—a day so painful it is forever etched in our minds and hearts. While this profound loss in our family’s lives will be forever felt, we know full well Helen wouldn’t want us focused on our grief and pain. As hard as it is—and always will be—she would want us to remember the immense love and happiness she brought to our lives, the crazy, fun things we did together, and the precious moments we shared. Although our lives will never be the same without her, we’ll get there eventually; it’s just going to take some time. Although she was with us for many years and we are grateful for them all, it was nowhere near long enough.

Helen was married to my brother, Mike, for close to 45 years. When they married, she became my sister, full stop. The term “In-law” could never reflect the love and admiration I had, and will always have, for her. Coming from a family with just one brother, joining our large family gave her plenty of opportunity to practice legendary patience—especially with her new little sister, me!

I can’t count the number of times Helen and Mike stepped up to help me over the years, including providing a bed and a room whenever I needed it. I said to Mike after she passed away that she must have eventually grown tired of his little sister at some point, and his response was, “Never.” Helen was always that rock in my life. I didn’t know it at the time, but I think when she said “I do” to my brother, she said it forever to all of us, too.

Helen was brilliant and had an incredible sense of humor, but her compassion and kindness toward others were truly unparalleled. She remembered every birthday, every special occasion, and each medical appointment that was meaningful in the lives of those she cared deeply for—always sending that note of celebration or checking in afterward to make sure we were okay.

Helen lived a life of service, always focused on others. It wasn't until after she passed away that we discovered the true depth of the gentle superhero among us—someone who was quietly making a massive difference in the lives of strangers while remaining humble and fiercely private about her generosity. Six months later, we are still profoundly moved by stories that continue to surface. She wasn’t just “our Helen” as it turned out; she was everyone’s Helen.

About two weeks before she died, we went out to celebrate several family birthdays with Helen and the “other outlaw,” Andy. Helen insisted on paying, and as sick as she was, no one knew her suffering. We had a wonderful meal and went our separate ways. I saw her a couple of days later, and she pushed a significant amount of cash into my hand. Despite the medication she was on and how she was feeling, she was worried she hadn't tipped the waitress enough. She made me promise to deliver it—to someone she would never see again. She was unbelievable like that. When I got to the restaurant and shared the story of how Helen insisted she be appreciated, the server and I both cried and hugged. Even in her final days, Helen made sure that server felt important.

Helen was that once-in-a-lifetime person that one can never forget, and I am so grateful for all the years side-by-side I was able to share with her. She was my safe place to fall, my unwavering cheerleader, my best friend, and the most incredible role model I could have ever hoped for. As long as I have air in my lungs, I will be saying her name and telling her story to whomever will listen.

If I had one wish for everyone, it would be that they had the opportunity to meet her. But for those who hadn’t, my wish would be that you come across someone in your life who leaves an imprint on your heart so deep that you are never the same after meeting them. That’s what Helen did for me, and for so many others.

She is, and will always be, deeply loved and missed by Mike, Alyssa, her brother John, myself, our family, friends, and countless others whose lives she touched—some of whom she never even met.

Up until the last moments of her life, Helen wasn’t focused on herself. She was focused on her work to bring awareness to women’s heart health and how she could leave the world supporting a cause so important to her. The HeartLife community was a vital part of her journey, and she wanted to be there for others after her passing. Together with HeartLife, Helen ensured a fund was set up to help support heart patients with specific needs. She had witnessed those needs herself and wanted to ensure that long after she was gone, there would be support for future women facing heart issues.

You can help us keep Helen’s vision and spirit alive by contributing and carrying her message on to others: https://heartlife.com/donate

Check on Your Strong Friends

Today marks five years since my heart failure diagnosis: February 24th, a date etched in my memory and my heart. This anniversary brings with it a mix of emotions, gratitude, vulnerability, and reflection. When people look at me, they often see strength, resilience, and someone who’s “doing well.” But I want to share a truth: strength isn’t always what it seems. Sometimes, it’s just a mask we wear to get through the day.

We all have friends who seem to have it together, the ones who carry burdens quietly and are quick to offer help. It’s easy to overlook them, assuming their strength is unshakeable. But being strong doesn’t mean being invincible. In fact, those of us who appear strong often need support the most. Behind the mask, there can be exhaustion, anxiety, and moments of deep sadness.

As February 24th approaches each year, I feel the weight of the anniversary pressing down. Depression sometimes creeps in, making it hard to celebrate milestones or even just get through the day. I’ve learned that it’s okay to acknowledge these feelings and to let myself be vulnerable. Pretending to be fine only makes it harder. There’s power in admitting when you’re struggling, and that honesty can be healing.

My husband; he’s been my rock throughout my whole journey, always there with unwavering support and kindness. Just last week, we had a really good talk, open and honest, the kind that made me feel seen and heard. We shared our fears and hopes, reflecting on how far we’ve come since my diagnosis. That conversation brought us even closer, reminding me how important it is to nurture the bonds with those who stand by us. It reinforced that leaning on him isn’t just about getting through the tough moments, it’s also about celebrating the victories and finding strength together.

I’m deeply grateful for my community, my family, friends, and the Heartlife Foundation. Their encouragement has helped me find purpose in sharing my story and connecting with others who understand this journey. Living in the moment and investing in relationships has brought me hope and reminded me that I’m not alone.

Every day is a gift, and I try to make it count.

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