As a person who lives with chronic kidney disease, heart failure and a rare cancer, Karen Nicole has extensive experience with the healthcare system from the patient perspective. Although her primary message is around the immeasurable benefit of exercise (and active living) to the lives of people living with chronic illnesses her health journey has given her many messages she feels inspired to share.
Using public speaking, patient experience advising, patient advocacy, writing and speaking with the media, Karen Nicole shares her messages with fellow patients, clinicians, caregivers and everyday people. Highlights of her journey (so far) would be speaking at the Canadian Society of Nephrology conference (Montreal 2013) about her “sick to fit journey”. Her essay in the Globe and Mail, “The Burden of Guilt” (http://www.theglobeandmail.com/life/facts-and-arguments/burden-of-guilt/article4328644/) and her new role as one of the faces of the Canadian Renal Rehabilitation Network.
Topics Karen Nicole has spoken on:
- Benefit of Cardiac (Chronic Illness) Rehab and Aggressive Dialysis for my life as person living with chronic kidney disease, cardiac disease and cancer
- Independent Dialysis: Thriving despite living with Home Hemodialysis (Aggressive Schedule)
- Overcoming Physical and Mental Barriers to Exercise when you live with Chronic Illnesses
- The Direct Translation of Fundraising dollars to the lives of people with Chronic Illnesses (For Heart & Stroke Foundation of Canada and Kidney Foundation of Canada)
- Patient Experience Advising: Proof that OUR voices are making a difference
- Balancing Life and Death – the Patient Perspective in Palliative Care
- Organ and Tissue Donation Advocacy (with Trillium Gift of Life (Canada) and Lifelink of Georgia (USA)
Karen Nicole’s Story
Karen Nicole was diagnosed with chronic kidney disease at age 18. Since then she’s lived the cycle of kidney disease, doing different modalities of dialysis, managing a kidney transplant for 13 years and coming back to dialysis in her late 30’s. The consequences of kidney disease lead to a near fatal cardiac arrest in at age 39. In rough shape physically and mentally, Karen Nicole, needed a plan for her life. This plan, initiated by a nephrologist and the counsel of a nurse, brought her from a place of discussing palliative care (end of life decisions) to a healthy fit life. In her case the “plan” involved an aggressive schedule of home hemodialysis (no less than 20 hours a week) and the exercise and lifestyle shift initiated at the Cardiac Rehabilitation Clinic.
Now Karen Nicole is in the 85th fitness percentile for women her age. Not women with renal failure but “healthy women”! She does no less than 4 classes a week at the gym leaving “healthy” people in the dust. Karen Nicole’s gym regiment also includes free weights, core work and flexibility training. Outside of the gym, Karen Nicole enjoys horseback riding, yoga and walks out in the fresh air – and recently ice skating.
In 2016, Karen Nicole was diagnosed with a rare cancer after open-heart surgery. With the support of dear friends, family and amazing medical teams, she’s rebounded to living her life with deep enthusiasm and hope again.
Speaker, Patient Experience Advisor, Advocate and Writer
With positive traction, Karen Nicole continues to share her messages to better the lives of others living with chronic illnesses. This journey began at Kingston General Hospital in 2012 where she was asked to share her experience with hospital committees to contribute the patient’s voice. At the present time, Karen Nicole sits on as many as 11 committees where she contributes her experience to issues ranging from point of care resolution, access to independent dialysis and vascular access blueprint building to name a few. She now sits on regional and provincial committees in addition to local KGH groups.
Karen Nicole is also committed to sharing her perspective with the media. She believes that the patient perspective has the transformative power to educate and through education improve lives . . . including her own.
“Being a patient experience advisor changed the way I feel about having lived with chronic illnesses. The challenges I experienced became positive and constructive in this new light. Now my experiences help doctors, nurses, executives and caregivers understand what patients go through and contributes to patient-centred policy and practices.”
Karen Nicole is proud to be part of the Kingston General Hospital team. A team that’s working consciously to better incorporate the patient perspective into all aspects and levels of the institutions structure and practice. In 2012 KGH won the NRC Picker Innovation Best Practice Award for is commitment to patient-centred care. Karen Nicole was also proud to be a recipient of the KGH Team Award for Leadership as part of the group of Patient Experience Advisors.
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