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From Patient to Agent

      From Patient to Agent

      As with social media these days, amid doom-scrolling the coronavirus disease 2019 pandemic, a tweet comes into my feed from an unexpected place. It was an announcement from @robmentz that he was taking on the role of Editor in Chief of the Journal of Cardiac Failure.
      I want to preface what happened next as something out of the ordinary, which goes against my inherent breeding as a Canadian. Further, it went against the doctor–patient dynamic, which is traditionally a one-way power street.
      I put myself out there.
      I messaged @robmentz to explain why he needed me, a patient, this patient, on his editorial team. I hit send before I chickened out and waited. I put my phone down, and my stomach turned over with nervousness.
      I first met Rob Mentz, MD, at the Cardiovascular Clinical Trialist forum in Washington, DC, in 2019. What struck me about Dr Mentz was how he framed his work using the language we patients use when talking about quality of life.
      He understood. He got it. Quality of life is not just about life; it's about how we live it with quality, qualitatively as best we can.
      That was it. He was one of us. He was our people.
      To illustrate why this empathy, this innate understanding, is essential, I describe my latest and most painful experience with heart failure. The day I found out, I lost my first gift, my first donor heart.
      I was away from home, from my team when all of this happened.
      ***
      In the wheelchair, outside the Cath lab, I sit. In a cold, barren hallway with high windows glazed over, no one could see in or out. There I sit, in this hallway, in the University Hospital in the city of my birth. I wait with trepidation.
      The pain in my chest radiates like fire, up into my throat, into my jaw, across my shoulders, and down my left arm into my hand. Pain radiates and burns like a pulsating fire.
      It would not go away.
      I breathe in deeply.
      A tall man with dark hair in scrubs—his face is blurred in my memory—comes up the hallway and greets me. I think I welcome him back. He walks behind me, and my chair swivels and begins to move. Two giant steel doors open automatically with a whirring noise, and my chair rolls inside.
      I enter a large, cold, cavernous room. A greeting is echoed across the divide, originating from a masked woman in a lead gown with warm, friendly eyes. My Masked Friend, I decided.
      In the center of the cavern was a long steel table, surrounded by hovering monitors, an x-ray machine, and metal trays upon which are a plethora of un-nameable instruments. All of which make me nervous as I have seen them before. Ugh. I hate angiograms.
      The voice in my head begins to panic.
      I don't know this space. These aren't my people. These. Aren't. My. People.
      The masked woman with friendly eyes asks me if I can stand. I said that I could, I stood up, and she ushered me up onto the steel slab that, to my surprise, was warm. She may have said other things, but my memory has reduced much of what was said to me from this point on to the muffled “Wah, wah, wah…” as all adults had in the Charlie Brown cartoons.
      My gown was removed, and I was covered up, you know, for modesty. I started to shiver, despite the warm table, as the cold, wet iodine solution was painted on both sides of my groin.
      Other Masked Bandits soon joined my Masked Friend as they made their preparations. She offered me something to help me relax, and I said, “Yes, please! And have more ready as I know I will need it.” She laughed and injected her magic potion into my IV.
      Within seconds I relaxed. But I was still aware. ACUTELY aware.
      The local transplant doctor, whom I had met briefly before at a national event that, as Co-founder of the HeartLife Foundation I was involved in, came in to reintroduce himself and reassure me that he was there and was in touch with my team back home.
      I was relieved. Not that I didn't trust this transplant doctor, but knowing that my people—and my TEAM—were there on the line, ready to guide what happens. I can only imagine what that must have been like for my transplant cardiologist, my team at home. and how hard it must have been.
      I have guilt about it still.
      There was a flurry of movement and activity around me. People said things to each other. People said things to me.
      Again, the Charlie Brown voice (s).
      I am pretty sure they explained what they were going to do. Since this wasn't my first Angiogram Rodeo, I simply nodded and acquiesced to focus on my breathing. Breathing in and out, trying to relax the panic brewing in my mind.
      Continuous pain radiated, pulsated, and burned through my chest and body.
      I felt a quick stab as the needle went into my groin—the freezing. I asked for extra—I explained that I always need extra freezing. I have lots of scarring from so many procedures.
      They begin to work.
      They worked for a long time.
      And then they worked some more.
      They may have told me I had blockages or that I overheard them talking to each other, and they may have said they were going to put in a stent. I am not sure. I was busy breathing and trying not to cry.
      At this point, I ask my Masked Friend with the warm smiling eyes for more magic potion. She came up beside me only; her eyes weren't smiling. They were full of concern.
      She injected calm into my IV. She may have added a little more than last time.
      They kept working.
      I tried to be good. To be still. But I was crying.
      I was crying because I knew. I knew this wasn't good.
      They asked me to remain still. I tried. I tried so hard.
      Dear Masked Bandits, I promise I tried to be still!
      The next thing I remember, and with complete vividness and clarity as I write this now, as though it just happened. The transplant doctor came out from behind the glass window where he was watching the procedure, a phone to his ear.
      He came over to me, a stalwart expression on his face. He said he just got off the phone with my transplant cardiologist back home.
      His words remain loud and clear in my mind, even now, 4 years later.
      Jillianne. All your arteries are blocked. You are going to need another transplant.
      ***
      I didn't think I would have time. Heart failure does that to you. It makes you think you don't have time.
      I once told my husband long before, as it dawned on me that my life might end that night after my LVAD surgery as I was bleeding out—I looked over at him and told him that I loved him and would die a happy woman.
      He looked at me and said, “F— you,” and squeezed my hand.
      Knowing that he was thinking the same thing as I was, he looked Death in the face and told it where to go.
      In moments since, when I was sure that I just couldn't do it anymore, that I just didn't have the strength of character to pull through, I would think of my husband and that time, and I would continue for another hour, another day.
      As the transplant doctor said, “You are going to need another transplant,” my ears rang deaf as the world around me spun and collapsed.
      I shattered. I fractured. I broke. Into a million little pieces.
      At that moment, I thought of my husband and how I couldn't put him through this again. That I couldn't tell him we had to do this all again so soon.
      Waves of grief and shame overwhelmed me. I could not stop shaking. I could not stop crying. Grief at having to tell my husband. Shame because I had let my donor down. That my donor was dying again inside my chest because of MY body. Because of ME.
      As I cried and shook, the Masked Bandits in the room asked me again to try and stop moving and be still. With warm and now empathetic eyes, My Masked Friend gave me calm through my IV.
      And then. My Masked Friend took my hand.
      At that moment, with the touch of her hand, she brought me back to Earth.
      Even though I wasn't home, I knew with that one action; I was with my people.
      A glimmer of hope ignited.
      ***
      It has been over four years since the day I was gifted another chance at life. It has been more than seven years since my first transplant—eight since my LVAD.
      With each day that passes, I wake with gratitude in the realization that I am here to start again. Accepting the truth of my life, on a journey to rediscover what and who I know myself to be. Out of tragedy, I work to exude forgiveness primarily for myself as there is nothing I or anyone could have done differently. In gratitude, I live to bring meaning to my donors and their families for all the extra days I have been given to live, make a difference, and be with those I love.
      I used to be unable to think of the future. I stopped myself from doing that years ago to keep the darkness at bay. The person that was shattered that day will never be the same. Some pieces no longer fit, while others have a match made stronger.
      I am still Me, just different.
      I recognized in Dr Mentz, Rob, that day at CVCT—and now, with Anu and the whole team at the Journal of Cardiac Failure, they get it. They understand. And if they don't, they listen.
      The Patient Center started as the Patient Corner. As a heart failure patient and now a two-time transplant recipient, I have been backed into the proverbial corner.
      As I quote Patrick Swayze in the movie Dirty Dancing, “Nobody puts Baby in the corner.”
      The Corner is not the right word—because words matter, like heart FUNCTION as opposed to heart FAILURE, matters.
      The Patient Center is more appropriate and now more reflective of the philosophy that has emerged from the Editorial Team at this journal, that the patient is truly at the center of what this team does. Not in a paternalistic or downward-looking way, as though, as patients, we still lay in a hospital bed with doctors standing, hovering, over us.
      This editorial team has embraced me, the Patient Center, and all the contributions from people with lived experience. They have listened, learned, and understood. Speaking from my own experience as a full member of this team over the past year, they get it.
      People with lived experience are among them. I stand among them. We stand with them. They stand with us.
      In linguistics, a (grammatical) agent is the cause or initiator of an event. A (grammatical) patient is the participant who is acted upon.
      On this team, I am no longer just a patient. I am also an agent. A whole person with the agency to speak with confidence, bringing to the table ALL of who I am, not only what I have experienced. Each person on this team makes me feel like I have actual value, and I can work with them to change this field for the better (Fig. 1, Fig. 2, Fig. 3).
      Fig 1
      Fig. 1Angiogram results before initial stenting. Image credit: Jillianne Code, used with permission.
      Fig 2
      Fig. 2Angiogram results after stenting during the same procedure. Image credit: Jillianne Code, used with permission.
      Fig 3
      Fig. 3An image of me 4 days after my second heart transplant. A photo still from the forthcoming documentary My Broken Heart (MyBrokenHeart.ca), produced and directed by Nick Zap, and is used with permission.
      Because they are also my people.
      And now you, dear readers are, my people.
      I am so glad I hit send.

      Conflict of Interest

      The corresponding author states that there is no conflict of interest.

      Acknowledgments

      Jillianne Code is also a Co-Founder of the HeartLife Foundation—Canada's first and only national patient-led charity for people living with heart failure. The HeartLife Foundation can be found online at HeartLife.ca and for those looking for support through one of our closed Facebook groups at HeartLife Canada or HeartLife USA.
      A photo still used in this article is from the forthcoming documentary My Broken Heart (MyBrokenHeart.ca), produced and directed by Nick Zap and is used with permission.

      Funding

      Jillianne Code is supported in part by the Social Sciences and Humanities Research Council of Canada [grant number 430-2016-00480].