Published January 7, 2020

You might say that Lisa Baxter is a woman on a mission. She is an author, actress, advocate, documentarian, volunteer, social worker, and health ambassador. Lisa is always on the lookout for new ways to educate dialysis and PKD patients, family members and the general public why proactive measures are instrumental to living a healthy and full life, even on dialysis.

In between a conference call, book signings, and multiple speaking engagements, we caught up with this active PKD patient and humanitarian to learn how she uses social media, acting, in-person presentations, writing, and advocacy to improve the lives of those living with chronic kidney disease.

PKD Foundation (PKDF): Can you tell us a bit about your PKD journey (family history, diagnosis, transplant and day-to-day living)?

Lisa: I inherited PKD from my dad. Six of my siblings and multiple other family members also have or had PKD, so I wasn’t unfamiliar with the disease and some of its progressions. I was diagnosed with PKD in 2004 and on dialysis at age 41. I was on dialysis for 4 years before having my transplant. I named my transplant Hannah.

PKDF: Besides having a family connection to the disease are there other reasons why you look to help educate others who are fighting chronic kidney disease?

Lisa: I’ve been a social worker for almost 24 years, so this work is part of who I am. I also have a company called Blessed Kidney Connections where I put my social service skills to work. I help people with finding a job or an apartment, provide education, provide referrals or I work to find the answer myself. I have a resource list that I provide wherever I think it might be helpful. I post the list at dialysis centers, and I’ve shared it with the PKD Foundation. I distribute the resource at street fairs and health fairs where I’m invited to attend.

I’ve also written 5 books. One of these, available at Barnes & Nobel and Amazon.com is called “Melsy Takes Dialysis to Show & Tell,” which introduces children to the subject of dialysis, and “Through the Eyes of a Dialysis Patient,” which shares my dialysis journey. It’s available at Books@bookbaby.com. I want to educate, encourage, and boost public awareness of how it’s possible to live a full and productive life on dialysis.

PKDF: What are some of the challenges you’ve faced during your journey?

Lisa: Although I’ve seen some of what happens because of relatives who were already on dialysis, it’s still largely a journey that you walk on your own. I know this can be scary and overwhelming to the patient, the caregivers and to family and friends. As a result, I am always trying to bring awareness with me. I am motivated by my own and other’s issues. Too many people don’t understand this disease and they are afraid and just run from it. Even the idea of getting on dialysis is scary to many, and I want them to know that getting on and sticking with dialysis can help you live a fuller, healthier life.

PKDF: When did you start the Lisa Baxter Show Health Prevention on YouTube?

Lisa: I started it 8 years ago. On the channel, I interview patients, caregivers, friends and family about being on dialysis, why it’s important to be consistent with your kidney care and ways to work through the challenges.

I want to show that while I believe dialysis can be a blessing, it can also be very difficult. Patients benefit from good self-care and need understanding throughout the process from friends, family and caregivers. Through this media, I share my life including my time on the dialysis machine and work to provide education and advice how family members can better care for those on this path. I’ve also conducted a 30-minute interview show on the Urban Health Outreach Media network where I interview dialysis patients and their family members. Urban Health Outreach Media is a YouTube Kidney Disease Education network that broadcasts kidney disease education.

PKDF: Who is your audience on YouTube and Urban Health Outreach Media?

Lisa: I try to cater to as many people as possible to get the message out. I want to help cater to the caregiver, provide encouragement to the family member who is assisting the patient, and offer support to the patient themselves. Each of these individuals has a point of view worth sharing and exploring. I also like to incorporate the community in my messaging, too. Anywhere I live or work, I look for ways to share the message. I’ve advocated in Washington, D.C., made a bumper sticker, keychains, shirts, flyers, posters, anything to get the message out. The audience is broad, and I want to cater to the whole audience, and I want them to be educated.

PKDF: Do you find people are more open to receiving health education through videos?

Lisa: Some people do, but I’m always looking for ways to find balance. Sometimes people want to hear me share my story in person while others like to see me do funny skits to get their attention. I’ve visited schools, put on patient talent shows at hospitals and dialysis clinics, advocated with wardens for prisoners on dialysis, spoken at churches, and more. I want to provide people with some enjoyment so they can live their best possible life.

PKDF: What are some of the ways you start this conversation?

Lisa: One thing is I don’t hide my arm. I wear short sleeves and sleeveless shirts because I want people to see and ask about my fistula, the connection between an artery and a vein. This is a conversation starter. I will also go to daycare centers because it’s a way to talk to children about their kidneys and why our kidneys are important.

PKDF: Have there been unexpected things or moments of serendipity as a result of you sharing your journey?

Lisa: As a child, I knew I had low calcium and low blood pressure. Anyone who knew me understood this about me. Plus, I also saw how the disease impacted my family. What I didn’t expect were things like teeth falling out, how my bones and joints would be impacted, and the joint pain. I’ve had to learn to walk with a cane and a leg brace and now I walk with a walker because of my bones. I go to conferences and do speaking engagements, so I am informed. I’ve also picked up things from my siblings and have received information from my social workers and nutritionists, but no one really prepares you totally. I don’t know what to expect, but I try to take it all in and help others through this process.

PKDF: Are there sources of faith and support you rely on?

Lisa: Family is a big support. It’s hard to do this journey alone. My faith is also something that grounds me. When I am worshiping, praising, or fasting, it helps to ground and center me. These are the times I remind myself, “come on, you’ve got this,” and “you’re stronger than this.” Even with these supports, I still have moments when I don’t want to get in the car or get on the dialysis machine. Despite that, I continue to do it because I know how important it is that I go. It’s a slow death otherwise. I want others to understand there comes a time when it’s necessary to go on dialysis and to be honest about how hard it is on you and your family. I want others to know we have these things in common.

PKDF: How do you find balance with your health and day-to-day life?

Lisa: I stay active! I like to jog and swim. I am someone who needs to go out and do stuff. If you just go to dialysis, it’s easy to get cabin fever. I think you need to do things that make you feel good. Volunteering and exercise are things that help me. I also like sitting outside, going to the park and visiting the beach. Even though I have the walker now, I’m still staying active.

PKDF: Is there anything else you’d like our readers to know about you and your PKD journey?

Lisa: I’d like to share a quote from my pastor. “I love what I’m doing, and I love the people I’m doing it with.” I believe if you get one person’s attention that’s a good thing. I want to show life through the eyes of a dialysis patient. I’m open to trying anything to get someone to learn something and to show them how to really live. For the people who like videos, I’ll do videos. For the bookworms, I’ll do books. I’ll do a variety of things to win people over. I also donate my books to help inform people. I want to educate dialysis patients as well as the people who know nothing about chronic kidney disease.

The best award is a life being changed. When you’re at dialysis, you’re hearing so much from different people and they expect a lot out of you. Sometimes you just want to do something for yourself or make something for yourself. It’s important to know you do have a choice, and you have choices all along your life journey.