What made you want to become an advocate? I honestly didn't think I could! I thought "advocates" were only for the "professionals," especially kidney disease advocates. Once I realized the advocates were those who had the life experience of it, there was no stopping me! My life has changed since being a kidney donor and if I can express that life-changing experience to people I meet every day, I do. Being a donor is a wonderful experience. I'd do it again and again if I could!
How has kidney disease affected you and what has been your biggest challenge? Kidney disease has affected me emotionally and yet has given me inspiration. Seeing my father's health fail and witnessing the strain it put on my mom was difficult. At the time my father was on dialysis, he had stopped working, often times didn't feel well and I didn't know how to help him feel better. We all tried to stay positive and encouraging during his dialysis journey, but it was most sad to see him on days when he didn't have a good treatment. Since his transplant, however, I have been inspired by that process. He now works full-time and is doing great!
How has being an advocate helped you? Being an advocate has helped me learn so much about people, and especially people with kidney disease. They are heroes! And they are warriors! I started my YouTube channel (Table For Seven) when I decided to get tested to be a kidney donor and through my channel I have met some amazing heroes! Both kidney patients as well as kidney donors.
What have you learned from being an advocate? I have learned that kidney disease is no walk in the park for patients. I have learned that kidney advocates are some pretty special people: bringing light to this disease and informing the public on various foundations, support groups and organizations builds up patients and lets them know they're not alone in this path.
Why should others become advocates? It's a wonderful thing to be an advocate. You allow yourself to share your story (we all have a story), all the while, helping others. You give so much power and validation to patients who are feeling alone and helpless, when they know that you have been (or are currently) going through the same thing.
What is something you’ve learned about kidney disease and dialysis that you wish you knew a lot sooner? I wish I had known about support groups, as well as the process of living kidney donation, early on.
How would you like to stay connected to other advocates? Social media is a great way to stay connected to other advocates. Social events would be great too. There's nothing like sharing a hug and some laughter with our great kidney community!
What are your best tips to get through the dialysis treatments? My best tip in getting through dialysis treatments is connection. Feeling alone might be one of the worst feelings, especially while on dialysis. Finding a support group and connecting with other patients would be beneficial. Faith is something we also held onto tightly while Dad was on dialysis.
What do you wish elected officials knew about dialysis patients? I wish elected officials knew how much dialysis patients go through--the emotional stress, the physical stress, and the financial stress.
Do you have any advice for newly diagnosed kidney patients? You can do this! There are support groups to help you! There are wonderful organizations to help you! A kidney transplant helped my father get his life back! My advice would be to STAY STRONG, KEEP THE FIGHT, and ASK FOR HELP WHEN YOU NEED IT! YOU ARE NEVER ALONE!
How does it help having a family member be part of the process? Having a family member be part of the process helps tremendously. I am able to literally put a face (my father's) to kidney disease. My mother was my father's caregiver (and the best one on Earth!) as she helped care for me too when I donated, and I have gained a new -out of this world- love and respect for her.
What do you wish other family members knew about kidney disease or knew about helping others? I wish other family members knew the importance of their role and story. We can all become advocates!
Can you tell us how being so prolific on YouTube helps you and helps your advocacy? Having my YouTube channel has been such a great outlet for me. With so much negativity in the world, I have been most pleased and proud of the viewers I have engaged with. Many of my viewers had no idea that an individual could donate their kidney, and continue living a healthy life. But I have to say some of my favorite comments are, "Thank you for sharing your experience, you have helped me make my decision to donate." And I usually follow up with them personally once they've donated. It has been a wonderful experience for me, to be there emotionally for other kidney donors. Naturally it has enhanced my desire to advocate for living donors. To educate those who aren't aware of donation but most importantly to show people that you can donate and continue living a healthy life. Because of my channel I have been given a wonderful opportunity to help other kidney patients and start up a non-profit (Kidney Solutions), where I help patients find their living kidney donors. I help provide them with free services like a photo shoot and short video, expressing their need for a kidney, and I share it all over social media. I will do anything to help patients and share my experience as a donor. My five children keep me very busy so if I can do it, you can too!