5 Ways to Be a PKD Advocate for Your Loved One

Published June 2, 2020  When a loved one is diagnosed with PKD, it’s important to learn how to be a PKD advocate. Glenna Frey knows exactly what that’s like. Living in Whitehouse, Ohio, Glenna and her husband, Bob, often drive two hours from their home to the Cleveland Clinic so Bob can see doctors specializing in PKD. It’s an inconvenience, Glenna admits, but she wouldn’t have it any other way. “I have always advocated for Bob to get the best care,” says Glenna, a nephrology nurse whose 28-year-old daughter also has PKD. There are many ways to be a great advocate for someone who has PKD.

 

1. Stay On Top of PKD Information

By registering for webcasts, signing up for Advocacy Alerts, and following news from the PKD Foundation, you’ll be better informed. Knowing what drugs are approved or what testing is recommended enables your family member to get the latest, most effective treatment, and Advocacy Alerts provide an opportunity to influence critical patient legislation.

 

2. Know What Questions to Ask Before Your Appointment

In preparing for your appointment, be ready to ask about test results, symptoms, or anything at all. “If you don’t ask, they don’t share with you. Don’t assume that nothing’s happening because the doctor didn’t tell you,” Glenna says. Make sure all of your issues are addressed and take notes to give you a record you can look back on—and serve as a history of the disease.

 

3. Encourage and Model Healthy Behavior

Telling a loved one to lose weight, start exercising, or quit an unhealthy habit is difficult. It’s better to provide choices and options. “Sharing information about what can be healthier is my role,” Glenna says. “It’s up to them to decide if they want to choose that or not.” In the meantime, model healthy behaviors yourself—you’ll inspire your loved one.

 

4. Stay Away From “What Ifs”

Worrying about what might happen is counterproductive. “You can drive yourself crazy and increase your anxiety, and that doesn’t help anyone,” Glenna says. Better: Get the facts, deal with the issues in front of you, and take action with the items you can control. Here’s how to help someone get the best possible care for PKD.

 

5. Consider Donating a Kidney

Choosing to make a difference, Glenna donated a kidney to a stranger through an advanced donation, meaning her donation earned a voucher that her daughter or husband can use for a future transplant.

She felt a “huge satisfaction in knowing that I helped someone get off dialysis and go back to work.” Beyond her donation, she started a nonprofit with her daughter called Kidney Donor Conversations, which provides education about living kidney donation and supports those contemplating donating a kidney.

“I only have one kidney to give, and I want to help more people. It’s my way of advocating for everyone with kidney disease.”

 


Want to see more articles like this? Read the full issue of our magazine, PKD Life, and subscribe to future issues here.

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