Lori Hartwell: Living with Purpose with Chronic Kidney Disease
Diagnosed with kidney disease at age two, Lori Hartwell was never expected to live. She was the youngest person in the state of California ever placed on peritoneal dialysis and she spent all her teen years on dialysis, missing sleepovers, school and even her own prom. Today, Lori has had four kidney transplants and is on a mission to help others with Chronic Kidney Disease (CKD) live full and complete lives.
In 1993, Lori founded the Renal Support Network (RSN), an organization that provides services, support and advocacy to patients and their families in the renal community. Understanding what it was like to be a teen on dialysis, Lori always wished she had been able to attend her prom. So in 1999, Lori created Renal Teen Prom, a night where youth, ages 14-24, can forget about their disease and enjoy a right of passage most teens take for granted.
"I spent all my teen years on dialysis. I had the body of a 12 year old and the brain of a 40 year old. I didn't connect with other kids my age: I was dealing with health issues, they were dealing with trying to get a date," said Lori. "Renal Teen Prom is not a typical prom; it's a celebration of life and being around others who understand you."
Each year for the prom, Lori pulls out all the stops to make sure each student feels special. Held at Notre Dame High School in Sherman Oaks, Calif., the gym is decked out from top to bottom in the year's theme, often with decorations secured from old movie sets. Dresses are donated for the girls and ties for the guys. Rides are arranged for each of the attendees, and once at the prom, the girls have an opportunity to have their hair and makeup done professionally, all for free. There are professional photos, dancing to a DJ, and guest appearances — both Jack Black and Kristen Dunst have attended in the past.
Maria Curiel, 19, says the prom is a chance to experience normal teen life. "It's fun to go to a real prom with other people who understand what I'm going through," she said. "I missed a lot of high school because of dialysis."
Lori sees the prom as a chance for students with CKD to connect, make friends and be inspired. "As a teen, I felt isolated and alone. Making friends with others who have CKD helps teens get through the illness with hope. These type of friends understand, they call, they celebrate with you. It makes a difference."
Lori's mantra, "An illness is too demanding when you don't have hope," can be heard through many chronic illness circles, and rings true through the Renal Teen Prom. "It's a wonderful feeling, because I can talk to teens and tell them I've been there too. I want to be a role model for youth, providing hope for both them and their parents that life goes on and it doesn't stop just because you have CKD," said Lori.
Lori's biggest hope is that through her example of living life to the fullest with CKD, others can be inspired to have goals and dreams, and not be afraid to accomplish them. "A lot of times, when someone has an illness, people's expectations drop. When I was younger, people didn't talk about me going to college — they didn't think I'd be around. People will spout off negative statistics and facts to you, but those who are involved and active in their care will beat those stats. I'm proof!"
Lori frequently shares how those with a chronic illness like CKD can live complete and purposeful lives. Some of Lori's top recommendations include:
Find your "joy instinct" – Find a hobby or activity that you can do, no matter where you are. Even if you don't feel like you can get up, you can make a bracelet or read a book.
Take help and get help – As a person living with CKD, you receive a lot of help, but it's important to give back and make use of what you have been given. Especially for others with CKD, encourage them to not give up, have hope and to dream. One friend makes a difference.
Surround yourself with positive people and eliminate "dream stealers" from your life. Go live your life – you only have one.
Lori knows it can seem impossible to live life purposefully, make an impact, and successfully manage an illness at the same time. "Many people ask me, ‘How do you do what you do?' I tell them I'm no different from them. I have the same issues and background — it's up to them to make a difference and help others — anyone can do it."
To read more of Lori's tips on how to live a full and purposeful life with CKD, check out her book, "Chronically Happy – Joyful Living in Spite of a Chronic Illness" or listen in to her bi-weekly podcast, KidneyTalk! about all things related to the kidney community.
For more information on the 2012 Renal Teen Prom and how you or someone you know can attend, visit the Renal Teen Prom invitation page.
http://www.livenow.info/GetLiving/Lifestyle/LivingwithPurposewithChronicKidneyDisease.aspx
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