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Using the Power of Story to Improve Patient-Centred Care
"I got to know the nurses in particular who always seemed to be with me when I needed them most."I consider myself the luckiest person in the world. Five years ago I was a normal, healthy woman in her late 50's. I was in my dream job, tenured professorship teaching classes that I loved and working with students that kept me feeling young. I was an avid hiker, skier and traveller.
In the fall of 2009 I got sick. A flu I thought, nothing to be alarmed about but I couldn't shake it. I finally dragged myself to the doctor and was given an antibiotic to treat a pretty severe infection. Over the course of a few days, I had gone into acute liver failure. A reaction to the antibiotics meant that my liver was failing and I was sicker than I had ever been. I was admitted to ICU and there was a real possibility that I wasn't going to live. My only hope was a liver transplant. To go from fine to near death in a matter of a week was nothing I had ever expected.
I was scared, sad, shocked and convinced I was going to die. However, the team of people who cared for me were excellent, present, honest, helpful, empathetic, kind, knowledgeable and professional. I got to know the nurses in particular who always seemed to be with me when I needed them most. I remember one nurse who was with me when I broke down on a particularly dark day. I knew things were bad and while in my head I had worst case scenarios floating around, I wanted to be as positive as I could because I knew that positive thinking was healing and quite frankly, I knew my family needed to see me thinking hopefully.
At some point I couldn't do it anymore and this nurse just listened to me as I broke down. The kind, caring and empathetic nurse who had been managing my very complex physical care simply sat down and let me tell him what I was afraid of. It wasn't going to heal me, but it helped me to articulate my fears and just have someone listen to them. He and I talked with honesty, with humour and with care. I knew he had other patients and undoubtedly something else he needed to be doing but he took the time to listen to me. I say this knowing that nurses are highly skilled health care professionals and that his depth of scientific knowledge was vast. However, in that moment I didn't want science. I wanted a person to listen to me and that was what he did.
In remarkably short order, a liver was available and I was heading to surgery. This was remarkable I was told. Surgery went well, and I recovered with the help of a health care team and my family. About a year after my transplant, I was going away with my husband. Nowhere far, just a weekend jaunt. The post-transplant team that managed my follow up care was aware of my trip and I'd done everything I could to notify everyone. I had on-call numbers, doctors in the area I was going to that could help me, the whole bit (I'm a planner!). I had become friendly with one nurse in particular over the last little while and of course it was a professional relationship, but I really felt like I could trust her. Maybe she wasn't supposed to do this, but she had given me her personal cell number. I didn't want to use it, but she knew how scared I was. While I lived my life post-transplant, I did so with much greater caution and with much less fearlessness than I had before. This nurse knew this about me. She and I had talked about this side of my recovery, this fear I had of living large out of some concern that something horrible would happen to me again and that this time I wouldn't survive. I kept this fear hidden from my family who I wanted to see the 'old me'. Yet this wonderful nurse made me feel safe enough to express this part of my recovery, and gave me her personal cell, just in case I needed her at any time.
I think about this all the time. In both cases, the nurses who helped me were working outside of their jobs. This wasn't a clinical aspect of their job, yet in seeing the whole person, me, they knew what I needed to aid in my recovery. To say thank you to them seems so insufficient.
My trip went fine and slowly, and with the help of my family, my health care team and my nurse friend, I've regained a joy for life that I was afraid to have post-transplant. It's not always easy, but the truth is, I still am the luckiest person in the world.