In the Eyes of a Recipient: Transplant Patient Summit

On October 23-24, 2017, the AST held its inaugural Transplant Patient Summit in Washington, DC. We welcomed over 100 patients to this meeting, which gave us the opportunity to hear stories and gain a new perspective – the patient perspective.

I recently wrote a blog about this event, highlighting the sessions and outcomes. However, this meeting was not just for the AST but rather extended our reach to reach our patient community. Therefore, I invited TPS attendee, Amy Silverstein, to write a guest blog post about her experience.  Her words convey more than anything I could say.

Amy is a 2-time heart transplant recipient and the author of My Glory Was I Had Such Friends, a novel about her transplant journey.

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“It was, in a word, groundbreaking. In my nearly 30 years as a heart transplant recipient, not only had I never seen anything like it, I also could never have imagined a coming together like this—a gathering of hearts and minds, physicians and patients, white coats cast aside and the usual boundaries, suspended.

The time had come to roll up our sleeves—together—because, if we were going to be honest about it, transplantation statistics and realities weren’t exactly stellar.  Pro-transplant legislative efforts and funding for research were frustratingly stagnant. It would take all of us to effect change as advocates and ambassadors for our common cause. But first, we needed to articulate a singular goal—one that was so central to physicians, patients and donors alike that we would shout it from the rooftops if we could.

One transplant for life.

It was Dr. Gill who spoke this goal aloud for all of us, right away in fact, in his opening speech.  I felt my mouth drop open in response, stunned. Having pondered, questioned, and at times grappled my way through nearly three decades of transplant life, I had assumed that there wasn’t a transplant-related line of thought that hadn’t crossed my mind. And then Dr. Gill spoke a lightning bolt: One transplant for life.

Could this really be possible?

I’d had my first transplant in 1988, just when heart transplantation was becoming routinely successful-ish. I say ish, because I was given a 10-year “at best” life expectancy post-transplant. My donor heart lasted 26 astounding years, and then failed, spiraling me down into a harrowing, near-death return to end-stage heart disease. This came as no surprise, because from the start doctors had inculcated me in the truncated lifespan of transplanted hearts. I had no basis from which to dream big.

And then I heard Dr. Gill speak.  And I felt a tear spill from my eye.

For two days, we transplant ambassadors (two from each state, patients and donors) met with AST board members, physicians, administrators, Lobbyists, drug companies and, for a few hours, members of congress, to explore who we are as a community and how we can move transplantation forward.  Every single attendee in the vast ballroom stood up one by one and introduced themselves, and as they did, I saw my transplant past, present and future, as I am sure many other patients did their own:  the woman in her 20’s who refused to be defined by her liver transplant; the board member/physician from Cedars Sinai who made my highly complex retransplant possible by including me in an NIH study for Eculizumab; and the lobbyist who had been working for years on Immunosuppressive Drug Coverage Act and donor protections legislation.  We were all connected in that room—by time, by experience, by common interest and goal. 

What followed were two days of learning and sharing, speaking up and taking notes, questioning members of Congress who stood before us, and absorbing some truths about lobbying and how Washington works. There were breakout groups on research, insurance, medicine and education, with a subsequent return to the larger group for a lively exchange of ideas and experiences.  As the hours passed, our hope grew alongside our passion.  We really had something here—the group of us.  We had experience and smarts and camaraderie.  We had a voice!  And, boy oh boy, it was time to use it.

But how?

In closing remarks, Dr. Gill lifted his eyes to the ceiling and shook his head—a mixture of joy, awe and hope, I think it was. The meeting had exceeded his expectations, and ours, but this was just a beginning, our feet planted at the starting line of a marathon.  But look at us—the whole of us, ready to take on the terrain, and run. We’d spent two days discovering what we had in us as a group.  We assessed the miles ahead and would head out together.  Ready. Set. Go!

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Amy Silverstein earned her Juris Doctor at New York University School of Law and is the award-winning author of My Glory Was I Had Such Friends (HarperCollins, 2017) and Sick Girl (Grove Atlantic, 2007). She received a heart transplant at Columbia in 1988 and at Cedars Sinai in 2014, has served on the Board of the United Network of Organ Sharing (UNOS), and is an active speaker and writer on women’s health issues and patient advocacy.