Evelynn is living with rapidly progressing autosomal dominant polycystic kidney disease, or ADPKD, and taking JYNARQUE® (tolvaptan).
The evening Evelynn started to experience pain across her lower back, she simply thought it was from a cheerleading injury. After her diagnosis, Evelynn embarked on her treatment journey without any sign of slowing down. By sharing her story, Evelynn aims to inspire others living with autosomal dominant polycystic kidney disease (ADPKD) to look to the future and have hope—because it’s hope that has kept Evelynn moving forward.
Please remember that none of the information discussed in this article should replace the conversations with your healthcare provider. Evelynn 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.
You’ve always been an active person since your high school years. What was it like for you when you were first diagnosed with ADPKD?
Evelynn: When I was first diagnosed with ADPKD, I was 17 years old and living with my parents. I was running late to get to school and my only excuse was that I had the worst pain stretching across my lower back. I thought I had sustained an injury during cheerleading practice a couple of days before and planned to ride it out, but the pain was so bad that I was sent home from school. My mother made an appointment for me to see a pediatric nephrologist who diagnosed me with ADPKD and gave me information about what it is and who it affects.
Did anyone else in your family know they also had ADPKD?
Evelynn: When the pediatric nephrologist asked my mom about our family’s medical history, she told her about my uncle’s kidney problems. She said that in light of that, I most likely had autosomal dominant polycystic kidney disease. She also explained that because I may have it, one of my parents probably also have it. I remember my parents really keeping everything “hush-hush,” but my mom was ultimately diagnosed with ADPKD as well.
You were pretty young when you were diagnosed. How did this affect your thoughts and plans for your future?
Evelynn: At first, I wasn’t overly concerned about what ADPKD meant for my future. After I was diagnosed, I went on to graduate high school, then university, and I really never made a big deal out of having ADPKD. For the most part, I was okay…I had fewer infections, I took my antihypertensives, and I checked my blood pressure at home regularly. As I got older and started to take care of myself more, I understood the hereditary nature of ADPKD, so I don’t really plan for a family.
“There was less fear now because knowing that I had a treatment option to help slow my kidney function decline gave me hope.”
What convinced you to take charge of your ADPKD?
Evelynn: At the end of 2017, the constant, dull pain I’d been ignoring in my side started to worsen, and I asked my new primary care physician about it. Even though she knew I had ADPKD, she didn’t run any labs—she simply told me it was a muscle strain and gave me a referral for an x-ray of my back. It was at this time I decided to change up doctors and get myself a nephrologist. And I’m so glad I did, because when I sat down with my new nephrologist, we went over my history with ADPKD together. He said the pain that I was experiencing was because my ADPKD is the type that rapidly progresses. When I heard that, I knew I made the right choice.
What was it like to start treatment with JYNARQUE?
Evelynn: Once I finally started JYNARQUE, I got into the habit of always having water around and making frequent trips to the bathroom. My blood pressure also decreased, so my doctor adjusted my antihypertensives accordingly. At first, I lost weight because I couldn’t keep anything down. I worked with my doctor to manage that and eventually the nausea eased. My doctor also told me about how JYNARQUE can cause serious and potentially fatal liver problems. He enrolled me in the JYNARQUE Risk Evaluation and Mitigation Strategy, or REMS, program to help me keep on track with my routine blood work I would need to monitor my liver function. That was just my experience, and everyone’s may be different.
With my nephrologist’s okay, I got an MRI of my abdomen (I’d never had one before) so I could visualize what my kidneys looked like inside my body. There was less fear now because knowing that I had a treatment option to help slow my kidney function decline gave me hope. I was ready to see what the effects of ADPKD looked like in my body.
“I’m a pretty positive person, and I feel that the pain of ADPKD brought me to the wonderful specialists that I needed to help me change my life for the better.”
What gives you hope for the future of ADPKD?
Evelynn: Living with ADPKD used to make me believe I wasn’t going to live a very long life, based on the family history that we pieced together after both Mom and I were diagnosed. But I’m a pretty positive person, and I feel that the pain of ADPKD brought me to the wonderful specialists that I needed to help me change my life for the better. I am encouraged by the medical advances and by current results related to my lifestyle and treatment. Who knows what the future will hold, but I wholeheartedly believe that with JYNARQUE, diet, exercise, controlled blood pressure, a good support system, and a positive outlook on life, I have the strength and tools to live my life with ADPKD. There are always going to be risks no matter what you do in life, but I’ve found hope with JYNARQUE.
MRI=magnetic resonance imaging.
Patients were compensated for their time.