My origin story: It sounds like the typical “why me”? type of story. I’d grown up on a farm in southern Ontario, the eldest of four children. Had the usual childhood diseases and a few broken bones, but nothing spectacular.

After I graduated from nursing school, we married, and soon found out there were no job opportunities for my husband, Eric, in our home province, so we moved to booming Calgary. I worked full time until 1979 when my first son was born. Taber, Alberta, was our home for the next four years, with the arrival of two more children, a daughter in 1981, and a son in 1984. Working part-time suited me and our growing family.

During this time, my 56-year-old mother had a brain stem stroke and was unable to return home or even care for herself. It was then that the decision to move back to Ontario was made. We wanted her to know her grandchildren and for them to know her, too.

After she passed away, it was decided we would return to the west and moved to Quesnel, BC, in 1990. I worked part-time in the labour and delivery room at the GR Baker Memorial Hospital and we had a very active life with our three children. Downhill and cross-country skiing, canoeing, camping, cycling, and hiking were high on our list of things to do. I also did a five-km walk, three times a week, and finished the Victoria Marathon in 2001.

My age: I’m 68 but most days I feel older.

My heart health experience

My first indication that there could be a problem happened in 2003, while preparing for a cycling trip in Europe. Tightness in my throat and shortness of breath caused me to seek medical attention. The treadmill test showed a problem and I was sent to Kelowna for an angiogram. Good news! You’re fine, no blockages were seen. Back home and back to work and regular activities, although the cycling trip had been already cancelled.

In 2007, we made the move to Nanaimo. Retiring on Vancouver Island had always been our plan. Our children were all close by in Victoria, Nanaimo, and Vancouver. I worked in Home and Community Care for a year and decided it wasn’t a good fit for me, so did some work with Nurse Next Door. By 2013, I decided that after 38 years in nursing, it was time to retire. I turned to doing volunteer work at the Nanaimo branch of the Canadian Red Cross, Health Equipment Loan Program. It has kept me busy and given me an opportunity to meet new people.

Heart symptoms dismissed

In 2014, I was starting to have trouble walking up hills. Thought I was out of shape! Had a MIBI test at Nanaimo Regional General Hospital (NRGH) and was reassured by the medical staff that there wasn’t anything wrong and, “Carry on with your life!” I wasn’t convinced but was told by the internist that I would not be referred to a cardiologist as there wasn’t any evidence of a heart problem.

2016 and I’m now at the point of being unable to walk up a single flight of stairs without shortness of breath, and throat and chest tightness. Back to the hospital for another MIBI test in September. Once again, nothing showed up on the test and was told that I would not be referred to a cardiologist. The problem continually became worse and I brought my husband to the next appointment with me and together we convinced the doctor this was highly unusual and worrisome for us both.

It was especially worrisome considering my mother’s history, along with my younger brother having had quadruple bypass surgery at the age of 45, my father having had a heart attack, and my paternal grandmother also having heart issues! After some pressure, we got the doctor to agree to refer me to a cardiologist.

Stents fix immediate problems

We were out for a walk at the downtown waterfront on New Year’s Eve day, 2016, when I suffered extreme shortness of breath, throat and chest pressure, and dizziness. I was admitted to the hospital and, a few days later, was transported to Royal Jubilee Hospital in Victoria. I had an angiogram and two stents were placed in my LAD on January 7, 2017. I’d had a mild heart attack. Everyone, including myself, thought I’d be OK now and we stopped worrying.

And how is this for irony: I received a letter from the cardiologist I’d finally been referred to while I was in the hospital following my heart attack!

I started the cardiac rehab programme at a gym in Nanaimo but after a few months I didn’t feel as though I was making much progress. It seemed like there was still restriction in my chest and throat while I was exercising. I assumed that this would slowly subside, and it certainly wasn’t as profound as it had been before the heart attack and the stents were inserted.

Heart symptoms return

In July of 2017, I was driving by myself from Kelowna to Nanaimo and the throat and chest tightness, and dizziness were getting worse again. It was unsafe to carry on, so I pulled off to the side of the road and called 911. I was transported from my vehicle on Highway 1 between Abbotsford and Langley, by ambulance, to the Langley Hospital. My EKG was erratic, showing atrial flutter with atrioventricular AV block, left bundle branch block, and my blood tests were abnormal. My husband and son came to pick me up after I was discharged, with instructions to follow up with my family doctor and cardiologist. We returned to Nanaimo the next day.

Just as we were about to drive off the ferry in Nanaimo I had the same thing happen again, so we went to NRGH ER and once again I was admitted. Back to Royal Jubilee for an angiogram – that was clear – and then an electrophysiology (EP) study was done. This time it was discovered that my electrical communication in my heart was not working properly and, a few weeks later, a three-lead pacemaker was inserted into my upper chest to control the electrical impulses that helped my heart contract properly. However, this surgery was delayed due to a severe infection at my IV site in my left arm and had to be treated with two weeks of antibiotics.

Since then, I have been getting the pacemaker checked every six months and adjusted a little each time. I’m finally able to walk up hills and stairs again, although very slowly, without becoming so short of breath.

During the pandemic, I was able to get out for a daily walk with my husband, and I took up sewing again, making doll clothes and dresses for my three granddaughters.

Neck condition surfaces

Well, the story doesn’t really end there. In 2019, I developed a problem with my neck that caused my head to spontaneously turn to the left and shake. I had severe muscle spasms and pain. I didn’t know what was happening and neither did my family doctor. He referred me to a neurologist but the appointment was months away.

It progressively got worse so that my head was twisted to the left all of the time and the spasms were unbearable. My physiotherapist suggested that I should see a movement disorders neurologist in Victoria for a better diagnosis. I was able to get a quick appointment with the specialist and he diagnosed me with cervical dystonia. It’s a rare movement disorder that occurs in the brain in the same area as Parkinson’s disease, but will never become Parkinson’s.

I am now scheduled for Botox injections into my neck muscles every three months to help relax the muscles in my neck. I’ve tried a variety of other treatments, as well, such as massage, Rolfing, physiotherapy, naturopathy, and a NUCCA chiropractor. I have spent a good many hours in bed just resting my head and sleeping from the exhaustion of this condition. I’ve had to change from wearing glasses to contact lenses as my head would twist and I couldn’t look properly through the lenses to read. Reading is one of my favourite hobbies!

I can no longer drive because my head twists and causes a blind spot on the right. This is a freedom that I really miss. We have to drive for everything because of our location in North Nanaimo. That is something that has been especially difficult to give up. My husband is retired and has been very good to take me to my appointments, and I have friends who will give me a ride, as well.

What are the benefits of belonging to the Nanaimo Heart Sisters?

I’m grateful to my family and friends for standing by me during this journey and to my Heart Sisters for understanding and giving me support and advice when I’ve needed it. I’ve learned a lot about myself and living happily and well every day.

The Heart Sisters have encouraged me to keep reminding others of my limitations, when I need help or rest or am unable to do things that I had previously been able to do easily. Each of them have a different story to share and they do so willingly. We can all gain from each other’s experiences.

The emotional toll this continues to take on us in different ways is recognised and respected. No story or problem is considered to be insignificant or undeserving of their kindness and understanding. And most of all, I enjoy laughing and telling stories with them!