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A rare disease escalates to heart failure

Tracy’s active lifestyle skidded to a halt when she noticed a decline in her health
Tracy Bawtinheimer

In August 2013, despite Tracy Bawtinheimer’s best efforts to live a healthy lifestyle, the busy executive and mother began a lifelong journey living with heart failure.

“Up until summer 2013, I considered myself to be a very fit, healthy active and busy person,” says the 51-year-old. “I was trying to be that super woman who had a career and a family. I was going to the gym, hiking and cycling— I had barely even caught a cold in my life! In hindsight, I was very, very lucky.”

That summer, Tracy started to notice small changes in her health– weight gain and shortness of breath when exercising. But she continued with her normal activities, completing an eight-hour hike up Mount Washington, the highest peak in the northeastern US, and regularly hiking the hills around her Victoria home. 

“I’d need more rests and I’d be a little more tired and I was getting very frustrated that I was getting dizzy and having these quick little bursts of my heart really racing,” she recalls. “I just kept chalking it up to stress, fatigue and travel and thought I needed to push myself harder. But the harder I pushed the worse I got.”

Finally in December, after a full day of baking, shopping and decorating the tree, Tracy’s symptoms of a racing heart, queasiness and shortness of breath worsened to the point where she went to the emergency department.

Tracy was in stage IV heart failure.

“I presented in emergency with life threatening arrhythmias. I was told I had less than a 1% chance of surviving.”

Doctors stopped and started her heart twice to get her stabilized. Over the next two days, her heartbeat was shocked to restore a normal rhythm four times. Because the source of her heart failure was not obvious, she underwent X-rays, CT scans, an MRI, echocardiogram, angiogram, numerous blood tests, and finally a biopsy of her heart.

“I was told by my electrophysiologist that I would not leave without a diagnosis, a treatment plan and an ICD or I would be dead sooner than later.”

In the end, Tracy was diagnosed with an autoimmune disorder called sarcoidosis, a rare disease which causes the growth of tiny collections of inflammatory cells (granulomas) in different parts of the body. In Tracy’s case, the granulomas damaged the right side of her heart, resulting in heart failure. 

The diagnosis was the start of Tracy’s long road to recovery.  She was given an implantable cardioverter-defibrillator (ICD) to regulate her heart rhythm on Christmas Eve and went home the next day with the optimistic view that life would soon be back to normal.

“I had a lack of true understanding of what chronic meant and what heart failure was, and what all these things would mean to me eventually. In my head I believed that I would just get back to work and back to life and everything would be fine.”

Tracy was prescribed a high dose of steroids to control the sarcoidosis and a range of other drugs to manage her heart and keep it as effective as possible.  

Tracy attended a cardiac rehabilitation and program and by summer 2016, could once again participate in outdoor activities, kayaking, cycling and walking up to 10 km. She was making plans to return to work that September, when once more she was back to feeling unwell.

“I underwent more testing and investigation to determine the cause. It was then that I began to understand that I had a chronic condition and would live with heart failure for the rest of my life.”

Tests showed Tracy’s sarcoidosis had come back. Without a known cause of cure for the disease, Tracy manages it through immunosuppressant therapy. 

Tracy is now focussing on how best to live her life with this chronic condition.

“Before my diagnosis I prided myself on being open to opportunities, being flexible and spontaneous. Now, I must be more thoughtful and planned in my activities. My energy levels vary from day to day which means that I can be unpredictable in my ability to meet commitments."

Tracy says she has a much greater appreciation for the smaller things in life, taking time to read and enjoy what’s going on around her rather than being constantly on the go. She and her husband recently purchased a travel trailer so they can engage in the outdoor activities that filled their leisure time before her diagnosis.  

“It’s all about the mindset– accepting that you can do the same things, just differently. That’s a big step when you’re learning to live with heart failure, but it’s a hugely important one.”

She is thankful for her large support network including her husband, family and friends. She also sees her hospital social worker and heart function clinic psychiatrist, attends a monthly women’s heart health support meeting and participates in online communities for people living with chronic illnesses, heart failure and implanted cardiac devices. 

“I find that sharing stories and hearing other people’s stories really help me to heal and gain some perspective.”

Tracy is involved with patient advocacy groups such as Patient Voices Network and the Canadian HeartLife Foundation.

“Giving back, even in small ways, helps me to heal and grow emotionally. As much as the condition has changed me in lots of ways, it hasn’t changed me either. I still need to feel like I contribute something valuable and useful.”