Susan McKenzie: supporting and appreciating gifts in health care

Susan McKenzie knows how donations of all kinds can make a difference in health care. And because of that, she wants to give hope.

Susan has lived the experience of receiving a donor kidney, and supported her daughter through a similar process.

She has devoted her career to fundraising, and now works with GRH Foundation (opens in a new tab) in supporting initiatives that advance care at the hospital.

Susan also co-founded the Transplant Ambassador Program.  TAP links patients with kidney disease or failure to those who’ve undergone transplants to help provide guidance and support along the way.

Susan’s efforts with TAP were honoured when she won a 2018 Cancer Care Ontario Human Touch Award (opens in a new tab) for her tireless efforts on behalf of those living with chronic kidney disease (Cancer Care Ontario includes the Ontario Renal Network).

Susan sees her experience as a patient as an opportunity to support others who are experiencing the same vulnerability she faced, and give them the strength to see better days.

What’s your day-to-day role in GRH Foundation?

My title is senior manager, principal giving. I am a career fundraiser, and day-to-day I manage the fundraising and major gift programs for GRH Foundation.

What do you enjoy about working in healthcare?

I like the feeling of being in the centre of the action in the hospital – working amongst and alongside the patients who depend on our hospital every day.

How has the health system affected you personally?

I had a genetic kidney impairment that led to dialysis and a kidney transplant. I do understand the feelings of vulnerability, fatigue and hopelessness of being in the midst of a serious personal health crisis – and I know it is not ever easy or even describable.

Once you have lived through an experience like this, and regained a reasonably normal existence, I think it is part of the human condition to want to help others who are in that vulnerable place you were once in.

What inspired you to help create the Transplant Ambassador Program?

When I was blindly moving through the stages of kidney disease, I was fortunate enough to find a person through a club I belonged to who had had a similar experience, and was willing to meet with me and share her knowledge and experience about whatever kidney related question or issue I was struggling with at the time. She became a life line for me and I didn’t have to burden my family with questions they couldn’t answer.

When my daughter was going through kidney failure more recently, she had me to talk to and I know that made her experience less frightening, and helped lead her to the best possible outcome for a kidney patient which is a pre-emptive living donor transplant.

I worked to create the Transplant Ambassador Program (opens in a new tab) to give others hope in a dark time. We did so with the support of a peer and a transplant researcher. I knew first-hand that speaking with someone who understands, and walked a similar path, was a missing piece in the clinical kidney experience that was critically needed.

Sometimes when I speak with people I can see the relief on their face when they realized I do understand – that they don’t have to explain all the gritty details. Knowing you are not alone is a powerful salve. Knowing you might get through the health crisis you are in the middle of can not only keep you positive, it can keep you going.

Following its initial launch, what role do you have in TAP, and how has the response been so far from patients?

I have been the provincial co-lead of TAP since 2016 , and am one of 26 hospital specific co-leads serving 13 renal sites across the province.

We launched at Grand River in May 2018, but there were years of work before that. I attend regular provincial meetings (mostly by phone), and continue to assist with new ambassador recruitment and training for Grand River Hospital (and other hospitals), and regularly speak with kidney patients at Grand River Hospital who are interested in learning more about transplantation.

Very often, patients and their friends or family who are considering donating a kidney don’t know when to begin to think about transplantation, if they are eligible or even what the process is. Our message is: the earlier in your kidney journey you learn about transplantation, the better. The process of receiving a transplant or becoming a living donor for a person who wants to donate his/her kidney can take at least a year, and often much longer.

What do you hope TAP will ultimately accomplish?

The goal of the five-year patient-led research study, which is funded by the Canadian Institutes of Health Research, and implemented in partnership with the Ontario Renal Network and Trillium Gift of Life, is to increase the referral and transplant rates at the 13 Ontario hospitals with renal centres in the study compared to the 13 hospitals that are not in the study.

Unlike most research studies, kidney patients and donors developed TAP and are leading its implementation and evolution across Ontario.

Our goal as transplant ambassadors is simpler: to bring hope to fellow patients’ lives by sharing our knowledge and experience. We are empowering a large number of transplant recipients and donors along the way!

How do you feel your experience guides your day-to-day work and volunteering now?

It definitely impacts my work every day in that I understand how fragile and precious life is and how any one of us could be dependent on the quality of our health care systems, hospitals and the kindness of the people who have chosen to make health care their profession.

It’s important to me to ensure everyone has access to the best possible health care when they need it, even though most of us hope we never will. That understanding is often what fuels my work at the Foundation and I think makes me a more understanding person. None of us should take our lives or health for granted.