Amy Silverstein, a celebrated author who wrote about her life as a two-time heart transplant recipient and highlighted the need for better transplant care, shared a final call to arms two days before her death at the age of 59.
Ms Silverstein was in her twenties when she was diagnosed with congestive heart failure. She received her first heart transplant aged 25. Twenty-six years later, she was diagnosed with vasculopathy, a common condition for heart transplant recipients, and moved across the US to receive a second transplant.
She wrote about her experiences in two books: Sick Girl, published in 2007, and My Glory Was I Had Such Friends, published in 2017. Ms Silverstein, who graduated from NYU School of Law, worked as an attorney before turning to her writing career.
On 11 May, a message posted to Ms Silverstein’s Twitter account announced that she had died “peacefully in her sleep” on 5 May. According to The New York Times, the cause of her death was cancer.
In a video shared on 3 May, Ms Silverstein urged other transplant recipients to get in touch with the American Society of Transplantation, an organisation comprised of more than 4,000 transplant physicians, and share their own stories.
“I just wanted to speak up one last time, because I feel that things are getting a lot worse in my body, and I probably won’t be here for long,” she said in the video. “So I just wanted to say that there is something that you can do right now. Many of you have reached out and asked how you can contribute to the effort to bring about change for the bettering of transplant medicine, and awareness of the issues.”
Ms Silverstein said more updates will keep being posted to her social media accounts, “but meanwhile, the best thing you can do is reach out to the American Society of Transplantation.”
“They have a voice, and they need to hear your voice,” she said. “Your honest voice, the things you have been writing to me, your transplant truths. Because, you know what? Doctors are only going to get us part of the way there. This is going to come from patients, from what you live, from what you’re hoping for.
“I know it’s hard to be open. There’s a lot of pressure not to be open. But please do. I hope you will carry the torch that I have lit here. I know you can do it, and I know there will be change, so I can leave this world feeling very grateful and very hopeful for how it is going to be for all of you. So thanks so much.”
On 18 April 2023, The New York Times published an essay by Ms Silverstein, in which she detailed many challenges faced by transplant patients after their surgeries.
“Transplantation is no different from lifelong illnesses that need newer, safer, more effective medicines,” she wrote. “Improvements in drug regimens are needed for lupus, Parkinson’s and a host of others. The key difference is that only in transplantation are patients expected to see their disease state as a ‘miracle.’ Only in transplant is there pressure to accept what you’ve been given and not dare express a wish, let alone a demand, for a healthier or longer life.”
In April, Ms Silverstein appeared on CBS Sunday Morning to highlight the need for better drug regiments for transplant recipients.
