Published on November 14, 2022 | In November, we celebrate National Family Caregivers Month. Family caregivers are a crucial pillar of our healthcare system, proving necessary care to their loved ones. Jennifer Visda knows firsthand what life is like as a family caregiver. As she cares for her husband, Rob, who has PKD, she’s seen all the ups, downs, stresses, and rewards that come with being a caregiver. For those wondering, here’s what life is like a caregiver in a PKD family.

This summer, Rob Visda was hospitalized in the ICU. His family caregiver and wife of 17 years, Jennifer, was his biggest supporter as he recovered.

What does an average day look like as a family caregiver? 

As a family caregiver, my days are hectic but balanced. I work Monday through Thursday, but remotely. We have a responsible pre-teen who is pretty independent— making his meals when he’s hungry, walking to school (unless it’s super cold or raining then I drive him.) After I get off work, aside from cleaning up and cooking dinner, we do dialysis in the evening for a little over three hours. Sounds seamless but we do have our unexpected bad days. From power outages while he is on treatment, high arterial or venous readings out of nowhere which can affect completing dialysis that can lead to missing some time off for work, etc.

When it comes to medical appointments, our goal is schedule them on Rob’s days off from work but we can’t get it how we want it all the time. When that happens, we take FMLA. We pray hard daily for smooth days and a kidney transplant to happen, not only for Rob, but for many on the waiting list, and a cure for PKD.

How have things changed since Rob’s diagnosis?

We do our best to not let PKD change our lives. We keep living life as safely as we can and maintaining healthy eating habits that consist of low to no salt foods. Rob continues to work and stays physically active as much as his body allows. When he’s tired from dialysis and his body needs to recover, he takes a break to restore. As his caregiver, I’m truly grateful to have the work/life balance. I work for a great company where I’m fortunate to work remotely. It helps me balance family life especially since we do home dialysis five days a week.

Being a family caregiver can often be stressful, how do you unwind and stay positive? 

As a caregiver, the way I stay positive is taking a deep breath and taking on things as they come; one day at a time. Caregiving is stressful but caregivers need care too. I’ve learned to have self-care days with friends, exercising, going for long walks, etc. I find that when I take time for myself, I can recharge and build strength to what lies ahead.

Rob and Jennifer’s son, Ayden, sports a shirt from a non-profit organization to help his dad find a donor.

How has the PKD Foundation helped you on your family’s journey with PKD?

The PKD Foundation has helped our family’s journey by simply being informative. I didn’t know too much about PKD. My husband knew he inherited the disease from his mom’s side of the family. She was on dialysis for one month, but was able to get a transplant from a family member. I tried to do my research through family members on his side, but I wasn’t getting enough information.

With my husband still on the transplant waiting list, I needed to know how we could take care of his health. I needed to find a source where I could reference for information. What truly helped me on the website was reading other people’s stories, those facing the same battle. There were many times my husband felt like no one knew what he was going through.

National Family Caregivers Month

As we celebrate National Family Caregivers Month, there are few things the Caregiver Action Network (CAN) encourages eve

• Raise awareness of family caregiver issues
• Celebrate the efforts of family caregivers
• Educate family caregivers about self-identification
• Increase support for family caregivers

If you’re a family caregiver looking for PKD resources, check out our resource library. And for those days when you’re just needing a sympathetic ear, our peer mentors and HOPE Line are here to listen and support you. While being a family caregiver can be stressful, know that you’re not alone.