My origin story: I was born in Melville, Saskatchewan, and grew up in Winnipeg. I have a BA, BEd and Master of Education. I started teaching when I was 19, newly married and pregnant with my first son. I then had a daughter, divorced, remarried and had a third child, a son. I never took more than a few months off for unpaid maternity leave and completed all of my education in summers and evenings. My interests eventually took me from teaching grades 7-9 mathematics and science to teaching primary and then special education/learning assistance. In Winnipeg, I became a District Coordinator for Special Education, a School Administrator and an Assistant Superintendent. In 1995, I decided that I would search for a position on the West Coast and was fortunate to be hired by Burnaby School District – I was happy to leave the Winnipeg winters behind! I worked there until 2002. We moved to Vancouver Island in 2014, first in Mill Bay and now in Duncan.

My age: I am 74.

Occupation: I am retired and volunteering for the Red Cross Friendly Calls Program and the Volunteer Cowichan Grocery Delivery Program.

My heart health story - as of October 7, 2024

My journey with atrial fibrillation (AFib) and heart failure began in 2002 after I had chemotherapy for breast cancer. I had a treatment that included Epirubicin, “the red devil”, a drug that can result in heart damage. I was 52 at the time and working as Assistant Superintendent in the Burnaby School District. Long hours and high stress were taking their toll.

Halfway through my treatment, the chemo and supplemental steroids leached the calcium from my vertebrae and I suddenly suffered four fractured vertebrae. I lost four inches of height and 50 per cent of my lung capacity. In addition, I was diagnosed with AFib and minor heart muscle damage. Getting an accurate reading of my ejection fraction (EF) with any heart image was difficult at that time as I had had a bilateral mastectomy and reconstruction with silicon implants. However, my EF at the time was estimated to be at 50 per cent. I saw a cardiologist for the first time and began taking medication for AFib which included: Amiodarone, Metoprolol, Eliquis and others along the way that I don’t recall. In 2004, I had a procedure called “vertebroplasty” to stabilize the vertebrae and offer some pain relief. I did not return to work and tried to live as normally as possible.

In 2015, while in Puerto Vallarta, I slipped and fell on a marble floor. I spent nine torturous days in a Mexican hospital. I had “pulverized” my ribs on my left side, to quote the intensive care unit (ICU) doctor at Victoria General Hospital (VGH) and the vertebrae above my previous fractures “blew apart”, to quote the neurosurgeon. My legs were paralyzed from the pressure of either bone or swelling compressing my spinal cord. In Mexico, I was mostly unaware of things as I was so heavily medicated for pain. I do clearly remember three sudden episodes where I was gasping for breath. It was terrifying and the staff also seemed terrified and baffled. I don’t have much memory of how they got it under control, but I assume it was with medication. I now understand that it was pulmonary edema (too much fluid in the lungs), likely caused by too much IV fluid and AFib.

Getting home

I was desperate to return home but when you can’t fly commercial it is a much more complex arrangement than I had understood. There is the need for a plane and a pilot and copilot, a doctor and two nurses. There also must be a bed in an ICU close to your home. Thank goodness for travel medical insurance. The hospital stay alone in Mexico was $100,000 and the flight must have been in the tens of thousands.

Once in Victoria, (I was living in Mill Bay at the time), I needed surgery at VGH to relieve the pressure and insert a titanium rod into my back. Then I spent 2-1/2 months in hospital healing and learning to walk again. It took almost a year for me to regain my walking and be independent again. Although I lost one more inch of height from my prefractured 5’ 6” body, and have a severe kyphosis (excessive forward rounding of the upper back) and severe chronic pain, I can walk and live a limited normal life.

I am forever grateful to the neurosurgeon and all of the wonderful doctors, nurses, physiotherapist and other staff at VGH. I did return to Mexico four times after 2015.

Heart care

From 2003-2015, I was seeing cardiologists on the Lower Mainland to monitor my AFib and adjust medications. I asked my doctors if my shortness of breath could be due not just to my reduced lung capacity but also heart-related. I had two echocardiograms during this period and my EF was estimated at 50 per cent, so the answer was always “No”, without any further examination.

Then in 2015, shortly after I arrived home from my 2-1/2 month stay in VGH I experienced sudden pulmonary edema. I was admitted to ICU in Cowichan District Hospital in Duncan and spent several days there. Again, my EF was 50 per cent and there was some talk of heart failure. But no follow-up was done.

(I had moved to Vancouver Island in 2014. I lived in Mill Bay from 2014-16.)

Between 2016 and 2019 family issues took me back to the Lower Mainland. I had a good general practitioner (GP) there and saw a cardiologist there every six months to basically check that my AFib was stable. I continued to ask if I had heart failure and was told “No”. I returned to the Island from the Lower Mainland in 2019.

Life continued

From 2016 until 2021, I lived life within some limitations but didn’t think of myself as a “heart patient”. In 2021, during a difficuIt dental procedure, I experienced a serious episode of AFib, the first since 2015. I was taken by ambulance to Cowichan Hospital, given Metoprolol and observed for 24 hours. I met a wonderful internist who scheduled a cardioversion, a medical treatment that uses low-energy shocks to restore a person’s regular heart rhythm. I had the procedure a few days later but my AFib returned 24 hours later.

I had another cardioversion scheduled a week later but the night before the procedure I suddenly could not breathe. We called an ambulance which took me to Cowichan Hospital. This time my pulmonary edema could not be treated with medication alone and I lost consciousness and woke up on a BiPAP machine, which helped me breathe. My blood pH registered as critical and my BNP (BNP protein) was 11,000. I stayed in ICU for five days. An echocardiogram and subsequent heart MRI showed that my EF was 36 per cent and that I had global hypokinesis. I was told for the first time that I have congestive heart failure and that it is serious. At that time I was prescribed Eliquis, Metropolol and Ramipril.

It surprised me how long it took to recover both emotionally and physically from that incident. By the way, I did not get a second cardioversion because my doctor determined that I had a type of AFib that couldn’t be fixed by ablation or cardioversion.

In 2022, I caught a virus from my three-year-old granddaughter. I became so sick that my sodium and potassium levels became dangerously low. I went to Emergency and after the expected long wait I was diagnosed and put in a chair amongst wall-to-wall gurneys and hooked up to an IV. I spent 23 long hours in excruciating back pain praying that my sodium and potassium levels would rise so that I could go home. Unfortunately, I had to be admitted for another 24 hours.

I was only home for 24 hours when suddenly I could not breathe. I was sweating, suffering from confusion and my blood pressure was rapidly rising. I was in atrial and left ventricle flutter. We called an ambulance and I was taken to Cowichan Hospital. My CO2 level was high and I had signs of CO2 poisoning. I had no idea this was even possible. Once again, I developed pulmonary edema. I was gasping for breath and felt as if I would suffocate. I was treated with three doses of Metoprolol. There was an interval between each dose. Waiting felt like a lifetime. I was begging for the BiPaP machine. Finally, it was ordered, and immediately the emergency was resolved.

This time I spent seven days in the ICU in Cowichan Hospital. I was prescribed the cadillac of medications for heart failure: Entresto, Jardiance, Bisoprolol and Spironolactone. This incident has been even harder to recover from as my body was so weakened. These episodes of pulmonary edema have left me with high anxiety about what the future might hold as my heart failure progresses.

I have not returned to Emergency since. I have struggled with the side effects of the medications. I have chronically low blood pressure. I recently discontinued Jardiance. It was causing bladder infections, weight loss, nausea and bowel issues. I feel so much better. However, when I’ve exerted myself recently, I’ve been experiencing chest pain that travels up to my collar bone. I now have nitroglycerin and take a vasodilator. I am waiting for a CT angiogram in Victoria.

Mental health challenge

Having multiple health issues that restrict and limit my quality of life is a difficult challenge. I exercise regularly, eat fairly well and try to enjoy life within my limits. My internist is fabulous, and he encourages me to not let the diagnosis limit me.

I do struggle to keep a positive outlook, and some days are harder than others. I am fortunate that between my retirement benefits and my own financial ability I can access a psychologist, a personal trainer and a physiotherapist. I have an able-bodied husband so we are able to maintain a home and a yard. I love Vancouver Island, but my family and long-term friends do not live here. I am making new friends, but participation becomes a barrier when you have multiple handicaps. I am also terrified of becoming sick again in a COVID world so vulnerability is an added barrier.

Finding the Nanaimo Heart Sisters

Coming to the Heart Sisters’ meetings is a challenge for me as I worry about COVID or the flu. I have decided that my mental health is worth the risk, but I’ll admit my anxiety is high when I am not masked.

Thank you, Nanaimo Heart Sisters for your warm welcome into this group. I have witnessed the warmth with which you greet both old and new at the meetings and feel so at home in your company. Any medical challenge can be a lonely journey and having friends who can empathize with experience is invaluable.