Jim is living with rapidly progressing autosomal dominant polycystic kidney disease, or ADPKD, and taking JYNARQUE® (tolvaptan).
For a very long time, Jim didn’t know that his mother, let alone himself, had been diagnosed with rapidly progressing autosomal dominant polycystic kidney disease (ADPKD). When he did learn, he felt like he had missed out on time to take better care of his health and build a big support system. Now, Jim shares his story to inspire others to take charge of their ADPKD.
Please remember that none of the information discussed in this article should replace the conversations with your healthcare provider. Jim is sharing his own thoughts and experiences, so please keep that in mind as your thoughts and experiences may be different.
Talk to your doctor to see if JYNARQUE is right for you.
You learned about your ADPKD diagnosis a little differently than others with the condition do. What was that moment like?
Jim: When I was almost 30, my parents came to visit. While there, my mom said she needed to tell me something in private. My mom and dad pulled me into the garage, which we used for storage. We stood around boxes of belongings stacked to the ceiling, and my mom told me, “You have a kidney disease. I have it too. We just need to watch our blood pressure.” That’s how I found out my mom had ADPKD…and I did too.
How did your mom even know the both of you had ADPKD?
Jim: Not too long ago, I asked her. My mom said that the day after her diagnosis, she rushed my sister and me to the hospital to see if we had it; I was 10 and my sister was 7. When my mom heard I had ADPKD too, she was heartbroken; it ate her up for almost 20 years until she told me.
Do you know why you didn’t learn about your ADPKD until you were an adult?
Jim: I’m not sure why my mom waited so long to tell me I had ADPKD. Maybe she didn’t know how to tell me; maybe it was the guilt; or maybe it was this idea our family had that you needed to “appear” sick to “be” sick. When I think of my own kids, I can imagine how tough it is to tell your child they inherited ADPKD.
How do you think your life would have been impacted if you’d known about ADPKD earlier?
Jim: If I’d known about ADPKD earlier, I’d have made some different choices. I never really paid close attention to how I was treating my body. I always felt good and could do pretty much anything I put my mind to. If I wanted to roll off my couch and run a half marathon, I had the energy and ability to do it. So I never recognized any signs that something was wrong with my kidneys. There were times I was put on antibiotics because of blood in my urine, but I never kept my follow-up appointments with my doctors when I was through the antibiotics.
“My mom had been training for [surgery], and that’s why she kept herself in such great shape. It was the wake-up call I’d been waiting for.”
Did your attitude change once you learned you had ADPKD?
Jim: Because my parents had been so nonchalant about telling me my diagnosis, I did nothing because I figured it wasn’t that big of a deal. And over the next few years, ADPKD did not seem to impact me. So I kept gaining more weight and wasn’t always diligent about managing my blood pressure or keeping up with my nephrologist’s appointments. My body was working harder and harder each year, while my cysts were growing larger and larger.
What did convince you to take charge of your ADPKD?
Jim: Probably the first time ADPKD became real to me was when my mom told us she would need a kidney transplant. While my mom was in surgery, her childhood best friend said that my mom had been training for this, and that’s why she kept herself in such great shape. It was the wake-up call I’d been waiting for.
Shortly after my mom’s transplant, my nephrologist’s nurse told me I had to stop pushing off my appointments and start facing this disease. I started eating right and religiously exercising. I also started talking to my nephrologist more. That’s how I found out about JYNARQUE. My doctor thought it would be good for me since I had rapidly progressing ADPKD.
“I’m eating and living healthy and staying active, not just for me, but for my family.”
What was it like to get on treatment with JYNARQUE?
Jim: The welcome kit answered a lot of my questions on JYNARQUE, and my doctor did share with me that because JYNARQUE can cause serious and potentially fatal liver problems, I need to have regular blood tests to monitor my liver function. This is part of the JYNARQUE Risk Evaluation and Mitigation Strategy (REMS) program.
As far as side effects go, I’ve had the things like waking up at night and going to the restroom more frequently, and thirst, plenty of thirst. But for me, this is manageable. This is my own experience regarding side effects from taking JYNARQUE. Side effects are on a patient-by-patient basis.
What results have you seen after taking better care of your health?
Jim: In my case, everything has been favorable so far despite my side effects; my lab results have improved, probably from a combination of lifestyle changes and JYNARQUE helping to slow the decline of my kidney function. Please remember, this is just my experience. Others should talk to their healthcare provider to see if JYNARQUE is right for them.
Why is it important to you now to manage your ADPKD?
Jim: I’m eating and living healthy and staying active, not just for me, but for my family. I’m doing everything I can to take care of my health today so I can be there for them tomorrow. I hope others with ADPKD do the same, because they deserve to live their lives…and their family deserves to have them in theirs.
Patients were compensated for their time.