Liz is living with rapidly progressing autosomal dominant polycystic kidney disease, or ADPKD, and taking JYNARQUE® (tolvaptan).
Liz looks at her life in terms of the message stamped on a car’s mirror. The one that says, “Objects in the mirror are closer than they appear.” She’s a medical sales representative with a large territory to cover and is in her car a lot. The phrase also seems particularly relevant in terms of her autosomal dominant polycystic kidney disease (ADPKD). For a long time, she tried to ignore it, but it was always in her rearview mirror, closer than it appeared—and creeping closer every day.
Please remember that none of the information discussed in this article should replace the conversations with your healthcare provider. Liz is sharing her 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.
How did you learn you had ADPKD?
Liz: Growing up I always enjoyed spending time with my dad. At age 40, he became really sick and was diagnosed with renal failure. Immediately, he was put on dialysis and almost died multiple times before getting a kidney transplant several years later.
After my dad was found to be in renal failure, he was diagnosed with ADPKD. But at the time there wasn’t much known about the disease, and honestly, not much that could be done to treat it. They had me tested because they realized it was hereditary. Both my sister and I were found to have ADPKD. I was only 14 years old.
Seeing everything your dad went through must have had a big impact on you.
Liz: I thought my life would follow the same disease trajectory as my father’s. I thought by age 40 my kidneys would fail and life as I knew it would be different.
It sounds like ADPKD was really on your mind then.
Liz: In some ways it was, but I didn’t want to think about it actually progressing. For a while, I didn’t really think about my ADPKD, other than staying current with medical appointments. But the first time I started to see my lab numbers change, it was chilling. My GFR had declined as my levels of blood urea nitrogen, or BUN, and creatinine (a waste product made by muscle activity) had been steadily and slowly creeping in the wrong direction. I’d been telling myself, “I don’t have a lot of pain. My kidneys are only a little enlarged. I’m watching my diet and exercising…I’m okay.” But the lab numbers were starting to tell a different story.
“I learned that starting treatment sooner rather than later might be a good thing because JYNARQUE is used to slow kidney function decline.”
Did you think about starting treatment to lower those numbers?
Liz: Since I’m a science nerd, I read a lot of medical journals, and, naturally, read a lot about ADPKD. For years, I had been following the research and clinical trials for a treatment called tolvaptan. When it was approved by the FDA and available commercially as JYNARQUE, I just wasn’t sure if it was for me or not. I didn’t think I was “sick enough” for JYNARQUE. I also didn’t like facing the possibility that my disease was rapidly progressing.
But you are on JYNARQUE now. What made you realize it was the right choice for you?
Liz: It wasn’t until I began to have some intermittent pain, as well as some enlargement in my kidney size, that I expressed concern to my nephrologist. That’s when we discussed JYNARQUE. I learned that starting treatment sooner rather than later might be a good thing because JYNARQUE is used to slow kidney function decline.
My nephrologist and I talked about the serious and potentially fatal liver injury JYNARQUE can cause—I definitely wanted more data on that. Learning about the JYNARQUE Risk Evaluation and Mitigation Strategy, or REMS program, actually helped me make my decision to start JYNARQUE. I liked knowing my labs were going to be tracked so my nephrologist and I could notice any signs of liver damage as early as possible.
“I felt confident that I could take JYNARQUE and manage my side effects—even with my busy lifestyle.”
What made you want to stay on JYNARQUE? Did you have to manage any side effects?
Liz: I was nervous initially about how to manage traveling, working, and the large intake of water and numerous trips to the bathroom. I joined a social media support group and got a lot of helpful tips. I felt confident that I could take JYNARQUE and manage my side effects—even with my busy lifestyle.
I have learned not to pass up a rest stop or a clean coffee shop bathroom. It took a little getting used to, but it has been manageable for me.
What is the importance to you of doing everything you can to manage your ADPKD?
Liz: It feels good to know I’m doing all that I can to hopefully slow my kidney function decline. I admit it, I am very vain, and I want to keep this waistline that I work so hard for at the gym!
I am a wife, mother, sister, aunt, and dog lover, and those people that I love are the reason that I take this medication. I don’t want them to see my disease progress the same way as my dad’s. I want to change the course of my disease for myself—and for my son, who also has ADPKD.
I have a lot of fun left to be had and living left to do. Because I’ve chosen to be proactive about managing my ADPKD, I’m not so worried about what’s in the rearview mirror, but more focused on what’s on the road ahead.
GFR=glomerular filtration rate.
Patients were compensated for their time.