Connecting with the Community for Change

Acknowledgment: This story is sponsored by Otsuka America Pharmaceutical, Inc. and is promoted through the Patient Worthy Collaborative Content program. We only publish content that embodies our mission of providing relevant, vetted and valuable information to the rare disease community.

Facing The Odds

Real patient who was compensated for his time sharing his story with Otsuka

Bill is living with rapidly progressing autosomal dominant polycystic kidney disease, or ADPKD, and taking JYNARQUE® (tolvaptan). Please remember that none of the information discussed in this article should replace the conversations with your healthcare provider. Bill is sharing his own thoughts and experiences, so please keep that in mind as your thoughts and experiences may be different.

JYNARQUE is a prescription medicine used to slow kidney function decline in adults who are at risk for rapidly progressing ADPKD. It is not known if JYNARQUE is safe and effective in children.

Please read FULL PRESCRIBING INFORMATION, including BOXED WARNING, and MEDICATION GUIDE. Please read the Important Safety Information at the end of this article.

ADPKD began to darken our family’s life many decades before I was born. I grew up knowing that my grandfather had dropped dead at 44, that his father had died at 45, and that his father’s father had died at 43—all of unexplained heart attacks. It wasn’t until my own dad was in his mid-twenties that we discovered how these deaths were linked. In 1966, he found blood in his urine, and an Xray showed cysts all over his kidneys.

When I was 14, my dad told me that there was a chance I would inherit his condition. He told me that the chance was only one in four, but I should check someday. He was wrong about the odds, but that was the information he was given.

I don’t remember worrying about it much. My dad had said it was just a one-in-four chance, so I figured the odds were on my side. But after visiting a doctor while away at college, I was diagnosed. Like my dad, and his dad before him, I had autosomal dominant polycystic kidney disease.

I remember that day. I went numb. I walked back to my dorm room, locked the door. I didn’t call any friends or family members. I didn’t want to tell anyone. I stood looking out the window on a nice spring day, watching people walking by. Instead of fresh spring air, the smell of my roommates’ dirty clothes surrounded me. But I didn’t want to be outside. I wanted to be alone— because I felt alone.

I never want anyone else to feel that way. So I’m grateful that Otsuka is now offering support group-style webinars called ADPKD Peer Conversations that give people living with ADPKD a chance to connect—because just hearing you’re not alone is a lot different than actually meeting your community. Being able to see and interact with your nearby ADPKD community can completely change your perspective.

If I’d had that resource back when I was younger, it might’ve helped me navigate all of my feelings surrounding this diagnosis.

But back then, all I could think was, These people walking by can expect a full life; mine may be half over.

I even remember that I felt shame. I couldn’t help but wonder if it made sense to pursue a long-term career or project, because I might not live to complete it. I couldn’t see a way to be happy again. Get married? Have children? I thought, “I don’t want to die early on a wife or any kids we may have, and certainly don’t want to leave fatherless kids to face the bleak, short future I’m facing.” I felt a sense of futility—of uselessness. Why bother?

Deciding on Change

At that point, it had never occurred to me that I might be able to do something about it. I went about my life and mostly kept it a secret. I ate a relatively healthy diet and exercised regularly. Eventually, I went to my first awareness and fundraising walk sponsored by a polycystic kidney disease (PKD) support and advocacy organization. There, I met—for the first time—people outside my family who also had ADPKD. Looking at so many people like me walking around, seeing the bulletin board covered with photos of loved ones who had died of ADPKD…for a time, I couldn’t speak. ADPKD had felt like a dark cloud hanging over my family alone. All at once I realized that there were events like this one all over the country. I started to imagine how many other families there must be that were just like mine. I got involved in fundraising and awareness efforts—I even wore a kidney costume to a black-tie gala.

I remember I told my cousin, Mike, who had also been diagnosed with ADPKD, about the walk. He and I grew up together and were close. I told him we were raising money to try to find a treatment. But he was only sort of interested. He said, “You know, there’s not much we can do about this. If something happens, it happens. You can’t worry about it, you know?”

The following year, Mike died suddenly of ADPKD complications. It was so, so painful to go to his funeral and see the grief on the faces of his mom, dad, sister, and two kids—both under five years of age, both too young to understand that their daddy was gone and was not coming back.

ADPKD had raised Mike’s blood pressure and made him more susceptible to aneurysms. He had been taking medication for high blood pressure for years. As he went through a painful personal situation, he developed an abdominal aneurysm the size of a grapefruit. A few days later, he died.

His death shocked me. It scared me and enraged me. I vowed to do whatever I could to help support my family and others living with ADPKD. I’m not a scientist or a celebrity. I’m not rich. Nonetheless—however small the effect of my efforts might be—I felt that I had to make them. Sitting still meant waiting for an early death.

Some years after Mike’s passing, I joined 19 other people to participate in one of the first human clinical trials of tolvaptan. We were a motivated bunch. We believed we were doing something important: helping with the development of a treatment option for ADPKD. We believed that we were opening the door to further research that could help other families like ours.

Participating in community events can be a really eye-opening experience. I never knew how much of a positive impact I could make on others until that first walk in 2002. I think that’s what ADPKD Peer Conversations can accomplish in a virtual setting. Just giving patients and caregivers a space to discuss their experiences, their stories, their hopes for the future—even that can make a difference. We can all learn from one another, and that’s what makes this webinar series unique. We’re not just hearing from one patient—we can all share our valuable perspectives.

For me, connecting with my ADPKD community is crucial because that means supporting my family. I have a wife and three daughters. My daughters know that their dad has a kidney disease called ADPKD. They’ve heard that it runs in the family. They know it has killed some relatives they never met, including my cousin when he was quite young.

But they also see me smiling in that kidney costume each year when they join me at walks for PKD. Although they don’t know it yet, I’m doing all of this in large part for them—and even though Mike would have teased me repeatedly about the costume, I’m doing this for him, too.

You can learn more about our new, regionally based webinar series, ADPKD Peer Conversations, at ADPKDPeerConversations.com.

IMPORTANT SAFETY INFORMATION and INDICATION for JYNARQUE® (tolvaptan)

Serious liver problems. JYNARQUE can cause serious liver problems that can lead to the need for a liver transplant or can lead to death. Stop taking JYNARQUE and call your healthcare provider right away if you get any of the following symptoms:
– feeling tired
– loss of appetite
– nausea
– right upper stomach (abdomen) pain or tenderness
– vomiting
– fever
– rash
– itching
– yellowing of the skin and white part of the eye (jaundice)
– dark urine

It is important that you have a blood test before you start JYNARQUE to help reduce your risk of liver problems. Your healthcare provider will do a blood test to check your liver:

• before you start taking JYNARQUE
• at 2 weeks and 4 weeks after you start treatment with JYNARQUE
• then monthly for 18 months during treatment with JYNARQUE
• and every three months from then on

Because of the risk of serious liver problems, JYNARQUE is only available through a restricted distribution program called the JYNARQUE Risk Evaluation and Mitigation Strategy (REMS) Program. Do not take JYNARQUE if you:

• have a history of liver problems or have signs or symptoms of liver problems, excluding polycystic liver disease
• cannot feel if you are thirsty or cannot replace fluids by drinking
• have been told that the amount of sodium (salt) in your blood is too high or too low
• are dehydrated
• are allergic to tolvaptan or any of the ingredients in JYNARQUE
• are unable to urinate

Tell your healthcare provider about all your medical conditions, including if you:

• have a history of sodium (salt) levels that are too low
• are pregnant or plan to become pregnant. It is not known if tolvaptan will harm your unborn baby. Tell your healthcare provider if you become pregnant or think that you may be pregnant
• are breastfeeding or plan to breastfeed. It is not known if tolvaptan passes into your breast milk. Do not breastfeed during your treatment with JYNARQUE. Talk to your healthcare provider about the best way to feed your baby during this time

Tell your healthcare provider about all the medicines you take, including prescription medicines, over-the-counter medicines, vitamins, and herbal supplements.

• Taking JYNARQUE with certain medicines could cause you to have too much tolvaptan in your blood. JYNARQUE should not be taken with certain medications. Your healthcare provider can tell you if it is safe to take JYNARQUE with other medicines

• Do not start taking a new medicine without talking to your healthcare provider

JYNARQUE may cause serious side effects, including:

Too much sodium in your blood (hypernatremia) and loss of too much body fluid (dehydration). In some cases, dehydration can lead to extreme loss of body fluid called hypovolemia. You should drink water when you are thirsty and throughout the day and night. Stop taking JYNARQUE and call your healthcare provider if you cannot drink enough water for any reason, such as not having access to water, or vomiting or diarrhea. Tell your healthcare provider if you get any of the following symptoms:
– dizziness
– fainting
– weight loss
– a change in the way your heart beats
– feeling confused or weak

What should you avoid while taking JYNARQUE?

Do not drink grapefruit juice during treatment with JYNARQUE. This could cause you to have too much tolvaptan in your blood.

The most common side effects of JYNARQUE are:
• thirst and increased fluid intake
• making large amounts of urine, urinating often, and urinating at night

These are not all the possible side effects of JYNARQUE. Talk to your healthcare provider about any side effect that bothers you or that does not go away. For more information, ask your healthcare provider or pharmacist.

If you have any questions about your health or medicines, talk to your healthcare professional.

To report SUSPECTED ADVERSE REACTIONS, contact Otsuka America Pharmaceutical, Inc. at 1-800-438-9927 or FDA at 1-800-FDA-1088 (www.fda.gov/medwatch).

INDICATION:

What is JYNARQUE?

JYNARQUE is a prescription medicine used to slow kidney function decline in adults who are at risk for rapidly progressing autosomal dominant polycystic kidney disease (ADPKD). It is not known if JYNARQUE is safe and effective in children.

Please read FULL PRESCRIBING INFORMATION, including BOXED WARNING, and MEDICATION GUIDE.

Acknowledgment: This story is sponsored by Otsuka America Pharmaceutical, Inc. and is promoted through the Patient Worthy Collaborative Content program. We only publish content that embodies our mission of providing relevant, vetted and valuable information to the rare disease community.


©2021 Otsuka America Pharmaceutical, Inc.                                                                                                September 2021     10US21EBC0129

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