CBC Interview

“To live as a transplant patient is to live with death every day.”

This was the closing phrase I said in a recent interview regarding the life and legacy of Amy Silverstein and the ongoing need for improvement in anti-rejection medications currently available to the transplant community.

January 2024 will mark eighteen years since I became a transplant recipient, and during this time, I have met and befriended hundreds of amazing human beings who have also received transplants.  During this same time, I have lost dozens of these friends to cancer, organ failure, or infectious diseases that all gained a foothold because of the powerful drugs that must be taken every day to suppress the immune system so that we don’t reject our transplanted organs. 

Twice a day, I take medications that make me physically ill and force me to remove myself from normal life and lie down until it passes, sometimes for several hours.  These must be taken twelve hours apart, so I take one just before bedtime and the other just before lunchtime.  This gives me the morning to schedule appointments, run errands, and hopefully, write.  My afternoons are spent on the couch with nausea, bed spins, and sleep if I’m lucky.  By dinner time, I’ve recovered enough to cook and eat a healthy meal then take the dogs on a walk.

Twice a day, I swallow a fistful of pills that I contemplate with both hope and hate.  The hope is that they will preserve my beautiful, borrowed heart and keep it beating strongly within my chest for years to come.  The hate exists because I know every dose is poisoning me.  Sooner or later, my suppressed immune system is going to allow a mutation to occur, a nascent tumor to grow unchecked, an infection to rampage through my body. 

Many transplant recipients have similar experiences.  In recent weeks, I have been engaging with the American Society of Transplantation (AST), media, and other transplant recipients to raise awareness of the lack of advancement in immunosuppressant medications in the current century.

You can listen to the interview with the CBC at the link below.  My portion begins at 37:00 and runs to about 45:00.

https://www.cbc.ca/listen/live-radio/1-2-as-it-happens/clip/15986249-the-friend-enemy-friend

Follow along with me in this series as we explore the current status of immunosuppressant drug development in comparison to drugs for other patient populations and the impacts on the actual human beings who rely on these drugs to stay alive.

If you prefer to read the interview rather than listen, a transcript is posted below.

AMY SILVERSTEIN OBIT

Guest: Dawn Levitt

SM: Some people say that they’re young at heart, but Amy Silverstein truly was. The writer received her first heart transplant from a 13-year-old back in 1988, and her second, also from a 13-year-old, in 2014.m It was to that second heart that Ms. Silverstein apologized in April in an op-ed in the New York Times. In it, she predicts her imminent death — not because of an unfit heart — but because of the failings of transplant medicine. And now, Ms. Silverstein has died at the age of 59. That editorial built on a theme in Ms. Silverstein’s work, which she explored in her first memoir.

SOUNDCLIP

AMY SILVERSTEIN: People want to hear the gratitude. They want to hear the happiness. And I am grateful and very happy. But the part missing from the dialogue is the idea that there can be a person, me, who voices and who feels gratitude right alongside the loss and the, and the troubles that come along with living with chronic illness. And feeling the whole thing and voicing the whole thing doesn’t mean you’re ungrateful or a bad person. It just means you’re telling it like it is.

SM: That’s the late writer Amy Silverstein speaking to CBS after the release of Sick Girl in 2007. Dawn Levitt is a two-time-heart donation recipient who was mentored and supported by Ms. Silverstein. We reached Ms. Levitt in Mount Clemens, Michigan.

NK: Dawn, when you hear Amy Silverstein say that, was she telling it like it is for you?

DAWN LEVITT: Absolutely. I am so grateful to be alive. But every day is an ongoing battle with the chronic side effects of the medications from the transplant. My heart is doing great, but every day, I get sick when I take my medication.

NK: How unusual was it, particularly back then in 2007, for someone to speak at transplant medicine from a more critical stance as she was?

DL: She was the first person I heard say something like that, and it resonated with me because that was true to my experience as well.

NK: Was that what stuck out to you when you read her first memoir, Sick Girl?

DL: Yes. Yes, it was. She has a passage in there in which she has to take her transplant medication during her wedding reception, and she has to go lay down in the cloakroom for a while or the coat room because it’s made her sick. And she’s laying there in her wedding dress. And that resonated with me very, very much.

NK: What is it like for you to, to have to balance that, that gratitude, happy to be alive, certainly, and to have had the transplants that you did, but also deal with the daily difficulties that you do? What is it like to balance that in a world that wants you just to be grateful?

DL: Well, I try, I try to divide myself into two people, if you will, the healthy Dawn and the sick Dawn. And when I’m healthy Dawn, I try to do everything I can do in the good days that I have. And on the bad days, I just kind of go into hiding because people don’t want to see you when you’re sick.

NK: That’s not, that’s not an easy way to live, certainly.

DL: No. But I am grateful that I do have good days.

NK: Absolutely. You know, one of the many things that, that struck me in the last piece that Amy Silverstein wrote in The New York Times was talking about the state of organ transplantation and that field of medicine right now. She’s described it as, quote, stagnant, antiquated, imprecise medicine that fails patients and organ donors. And she goes further to say, without vigorous pushback, hospitals and physicians have been allowed to set an embarrassingly low bar for achievement. Indeed, the prevailing metric for success, as codified by the Health Resources and Services Administration, is only one year of post-transplant survival, which relieves pressure for improvement. Is that something you feel at this stage as well?

DL: I do feel that the first year after transplant, they definitely, any transplant centre seems to put a great deal of effort into making sure you reach that one-year milestone. And then, the amount of support kind of slips back with each successive year. I’m approaching five years out of my second heart transplant. And I know that the monitoring becomes less — as it should. Because those who are new to transplant, that first year post-transplant is the most difficult to get through. But once you get past that first year, it does seem like there is, there is less support.

NK: Do you share her concerns, what she seems to be suggesting about innovation in the field to help other people who will need transplants?

DL: Yes, I think that if they could improve the immunosuppressive drug regimen that transplant patients are required to undertake, they could reduce the number of re-transplants that people need when their original organ no longer works. It could extend the lifespan of transplant recipients. And it could improve the overall quality of life. In the current century, there have not been many improvements and innovations in transplant drugs. I think there is a lot of just be grateful you’re still alive attitude that is pushed at the transplant community. You know, you got this organ. Just be happy that you got the organ. Don’t complain about the side effects you have from the medications. And I know a great number of transplant recipients, and they deal with a certain amount of survivor guilt, a certain amount of PTSD from their Illness. And a lot of them don’t want to talk about their side effects and the bad days because they think they should just smile and be grateful.

NK: She clearly was such a vocal advocate.

DL: Yes. Yes.

NK: And pushing, you know, pushing for change. But now that she’s died, what do you think will happen to that fight?

DL: I think it’s up to those of us who survive her to take it up. She had asked in her last video that we contact the, the American Society for Transplant — the AST — to request that they push for improvement in drugs. I wrote a kind of a form letter that I put out to, to my contacts in the transplant community to ask people to sign on to it and send it into them online. And I did get feedback from them. And I got some, some good advice from them to follow them on their social media to get involved in some of their causes. They sent me some links. And that they’re going to try to work closely with the FDA to create changes and to, to create new endpoints for treatment rather than just the one year. And to try to see if they can get some new anti-rejection drugs in the pipeline.

NK: One of the other really powerful parts of her piece in The New York Times was near the end. And she’s talking about talking with her doctor, you know, and how difficult it was for that doctor as well, how emotional it was for both of them, because it wasn’t the second heart that was giving out. It was, you know, the medications and the system, as you’ve talked about, not just making her sick on a daily basis, but leading to the, to the cancer that she developed. You know, you’ve lost someone who meant so much to you. And then, you’ve lost them in this way. So how do you, how do you process all of that right now?

DL: As a transplant patient, she’s not my first friend to die that way. I have, I mean, I’m going on 18 years since my first heart transplant. I have lost dozens of transplant friends because of the side effects of transplant medications. Either they’ve gotten cancer, or their other organs have failed, their kidneys, or their heart. They needed a second transplant because of the vasculopathy that occurs as a side effect of some of the medications. So this isn’t a new experience. If you’re a transplant patient, you live with death every single day.

NK: Dawn, I’m sorry for your loss and your losses, but I’m so glad we could speak. Thank you so much.

DL: Thank you for having me.

CH: Dawn Levitt is a two-time heart transplant recipient and author. We reached her in Mount Clemens, Michigan.