Anthony is living with rapidly progressing autosomal dominant polycystic kidney disease, or ADPKD, and taking JYNARQUE® (tolvaptan).
Anthony grew up in what he describes as the quintessential middle-class household. He played ball with his dad, ate family dinners at the table, danced around the house with his siblings, and always said his prayers before bed. But behind closed doors, his family was quietly dealing with autosomal dominant polycystic kidney disease (ADPKD). Anthony’s father had been diagnosed with the condition, and later, Anthony would be too. After years of loss and learning, he decided to take control of his health by eating right and staying active. He believes in the power to transform your circumstances through faith and optimism.
Please remember that none of the information discussed in this article should replace conversations with your healthcare provider. Anthony is sharing his own thoughts and experience, so please keep in mind that your thoughts and experiences may be different.
Talk to your doctor to see if JYNARQUE is right for you.
How old were you when you were diagnosed, and what was that experience like for you?
Anthony: I was in the sixth grade when my pediatrician diagnosed me with ADPKD. My family had a history of the disease—something I hadn’t known at the time. We reviewed my family history and my pediatrician ordered a few tests to confirm the diagnosis. I remember that when he told us, my mom cried, but my father sat stoically in the seat beside her.
That’s quite young for a diagnosis of any kind. Did things change for you after that?
Anthony: Not much changed. I was still just a little kid with big dreams. I was mostly worried about other things, like making friends at school and getting good grades. There was also a lot of secrecy in our family surrounding the illness. It wasn’t really something we talked about. My grandmother died of ADPKD-related complications, which I didn’t know back then. I remember seeing her when she looked so sick—I was in high school by that point, but still didn’t know much about the effect ADPKD had on our family.
Did your family ever open up to you about ADPKD?
Anthony: Yes, but it took a while. I found out one day when my father passed out at work. My sister and I rushed to the hospital, where the doctors explained the situation. That was the first time I realized that he had ADPKD too. We also learned that he needed a transplant. Luckily, my uncle donated a kidney to him. To say it was a gift is an understatement. My uncle made the impossible happen—he gave us more time with our dad.
“That’s something I want to make sure other young people living with ADPKD keep in mind—your body needs you to take control of your health sooner rather than later.”
That sounds like a lot to take in all at once. Can you tell me a little bit about what that discovery meant for you moving forward?
Anthony: Well, when I went to college, I didn’t think much about kidney disease. That is, until I started cramming for exams, staying up all night, eating poorly—doing all the things college kids do. I was also really homesick and felt down a lot, which led to me gaining weight. Now, knowing what I know, I would’ve hiked more, eaten healthier meals, spaced out my class schedule, gotten more sleep. That’s something I want to make sure other young people living with ADPKD keep in mind—your body needs you to take control of your health sooner rather than later. The sooner, the better.
It can be so easy to lose sight of your health when you’re focused on school. What were things like after college?
Anthony: I graduated in 2006 and began my career as a nationally touring musician. It was definitely a crazy chapter of my life, performing at concerts so often. Things were hectic—it’s easy to forget to focus on your health. Then things became even more difficult when my father died unexpectedly during a transplant surgery. He passed the week before my 27th birthday.
I’m so sorry for your loss—that must’ve been so difficult to live through. I appreciate you sharing that. Is it strange to navigate ADPKD without him?
Anthony: His death woke me up. It hit me hard—made me realize that it was time for a big change. At that point, I weighed 290 pounds, and being overweight isn’t helpful when you have kidney disease. So I started doing yoga and ultimate frisbee, biking, and walking. I did everything I could to stay active and eat better. I tried to let go of things that were stressing me out emotionally and decided to spend my time with people who were positive. I also started taking JYNARQUE a little later.
“I have chosen to be optimistic about my condition, and I’ve also chosen to take action.”
What has your experience with JYNARQUE been like?
Anthony: When I first heard about JYNARQUE, my sister, who also has ADPKD, said that it was the first treatment of its kind, and that that’s a good thing, which made me feel hopeful. But at the time, my nephrologist had just told me that my kidneys would fail by age 60, so there was a lot going on in my mind. My dad died at age 59, so it was hard not to compare things.
But I knew I had to be strong. I started taking JYNARQUE as soon as it was available to me in 2018. JYNARQUE can cause serious liver problems that can lead to the need for a transplant or can lead to death. My doctor had also told me that because JYNARQUE can cause serious and potentially fatal liver problems, I would need regular blood work to monitor my liver function. He enrolled me in the JYNARQUE Risk Evaluation and Mitigation Strategy, or REMS program, to help me stay on track with my blood work.
I’ve had a few side effects while taking JYNARQUE, most notably that I have to urinate very often. As a father of a newborn, that actually hasn’t been so bad because I’m awake at night to check on the baby.
Congratulations on becoming a father! How does it feel to take on that new role?
Anthony: I met my wife through a church group a little while back and she’s the love of my life. She’s a doctor, so when I told her I had ADPKD, she knew exactly what I was talking about, which was nice. My wife and I took the right steps to minimize the risk of passing ADPKD on to our children, too. We decided on in vitro fertilization so we wouldn’t have to worry.
I think my relationship with my father is a good example for me on my journey of fatherhood, because he and I had the same drive and really loved one another. I think each generation of my family has gotten better and better at communicating and holding one another accountable, which I intend to do with my children.
Do you have any message or thoughts about living with ADPKD or taking JYNARQUE that you’d like to share?
Anthony: I have chosen to be optimistic about my condition, and I’ve also chosen to take action. Eating healthy, staying fit, and just taking care of yourself is so important. I hope that anyone with ADPKD can improve their circumstances—but especially those who are younger. They really have a chance to make a difference for themselves and for their families. I know firsthand! Despite everything I’ve been through with this disease, I’d say that I’m still the same little kid with big dreams. But now more than ever, I’m optimistic that I’ll be able to keep chasing them.