About RSN's Founder Lori Hartwell

Lori Hartwell has made a difference in the lives of people with chronic kidney disease. Living with kidney disease since age two, having survived 40 plus surgeries, 13 years of dialysis and now living with her fourth kidney transplant, Lori founded the patient-led Renal Support Network in 1993 to instill “health, happiness, and hope” into the lives of fellow patients. She is the author of Chronically Happy – Joyful Living in Spite of Chronic Illness, an inspirational guidebook for handling lifestyle and numerous other non-medical issues that come up in the course of chronic disease. She also is the Host of KidneyTalk Podcast.  Download PDF

Lori's Story

Young Lori HartwellWhen doctors put two-year-old Lori Hartwell on dialysis after her kidneys mysteriously stopped working, they didn’t expect her to live. That was the first time she beat seemingly insurmountable odds to survive, and she continues to “one-up” the statistics today.

As a young patient, Ms. Hartwell encountered the pioneering stages of renal replacement therapy. She was the youngest person in the state of California ever to be placed on peritoneal dialysis.  She was on dialysis for almost 13 years (both peritoneal dialysis and hemodialysis) and has had four kidney transplants―the last of which took place on February 4, 2011. Ms. Hartwell has emerged as a powerful example of how people with chronic illness can lead complete and productive lives.

The insightful, often humorous, and touching story of how Ms. Hartwell chose to live life rather than succumb to its obstacles is laid out in her book, Chronically Happy – Joyful Living in Spite of Chronic Illness, which chronicles her approach of taking simple, logical steps in order to realize one’s dreams. Chronically Happy, published in 2002, is the first book written by a kidney patient ever to reach national distribution selling over 25,000 copies.

Ms. Hartwell realized one of her most ambitious dreams to date when, in 1993, she founded the Renal Support Network (RSN) to instill “health, happiness, and hope” into the lives of those affected by chronic kidney disease (CKD). The influence of this patient-led organization―which started out as a Southern California grassroots effort―now extends across America. RSN’s mission is to identify and meet the non-medical needs of people affected by CKD, whether they are in the early stages of the disease, on dialysis, or with a kidney transplant.

Career

Lori hartwell - Renal Support Network - PresidentMs. Hartwell began her career in the renal field as a technical sales specialist for HemaMetrics (formerly In-Line Diagnostics), developers of a hematocrit-controlled hemodialysis technology. She then accepted the position of Western Regional Sales Manager for Medcomp, distributors of vascular access catheters, where she oversaw company activities in seven states. These positions allowed her to visit more than 500 freestanding and hospital-based dialysis units in 30 states. As such, she was able to develop a broad-based, multi-faceted view of the U.S. renal patient population, and to witness the importance of a mutual understanding between patients and healthcare providers in the quest for quality care.

This broad-based first-hand knowledge of patients and kidney disease led naturally to publishing where Ms. Hartwell became editor of the medical journal Contemporary Dialysis & Nephrology and of the lay journal For Patients Only. She was the content publisher of the popular Web site iKidney.com, which served the entire renal community. Combining this experience with her knowledge of renal disease from both the patient and industry perspectives, Ms. Hartwell established Hartwell Communications in 2000, for which she consults on and creates patient-related educational materials.

She wrote and produced “Communication Prescription for the Renal Care Professional,” a 60-minute video that shares practical advice, creative communication concepts, and stories of hope from people who live with kidney disease as well as from veteran renal care professionals. This video, which won a 2001 Aegis Award for its production quality, illustrates the positive impact that renal care professionals can have on people’s lives.

Ms. Hartwell continues to travel the world giving motivational and educational presentations to renal healthcare professionals, patients, and industry representatives, both at national nephrology conferences and at the regional/local level.

Ms. Hartwell realized one of her most ambitious dreams to date, when in 1993 she founded the Renal Support Network (RSN) to instill “health, happiness, and hope” into the lives of those affected by chronic kidney disease (CKD). The influence of this patient-led organization, which started out as a Southern California grassroots effort, now extends across the U.S. RSN’s mission is to identify and meet the non-medical needs of people affected by CKD, whether they are in the early stages of the disease, on dialysis, or with a kidney transplant.

Before entering the renal field, Lori worked at Four Corners and Disney and learned first hand how to create and produce point of purchasing displays and packaging for the Entertainment industry.

Patient Advocacy

Advocacy WeKAN-advocacy-kidney-disease-Lori-Hartwell-Schiff
Senator Adam Schiff, Dr. Raffi Minasian and Lori Hartwell

As a person who has lived successfully with Chronic Kidney Disease, Ms. Hartwell has a passion to give patients with chronic illness a reason to live and hope for the future. Her motto, “An illness is too demanding when you don’t have hope,” is heard throughout the U.S. nephrology community and has informed the development of many programs within the Renal Support Network. She has advocated on a national level, speaking with congressional and state leaders about legislative issues affecting the kidney community and giving testimony before the Joint Advisory Committee of the FDA. By example, she encourages other patients to take a positive step by taking active roles in the many patient-directed programs of RSN.

Ms. Hartwell works with elected officials to advise on how policies impact people with chronic illnesses. She has served on several Technical Expert Panels for Center for Medicare and Medical Services to provide the patients perspective.  She serves on the National Quality Renal Forum that is contracted by Medicare to develop Quality Measures for Dialysis Facilities.  She is on the Board of Directors for Kidney Care Partners (KCP).
She serves ad the Chair of the Patient Council for Kidney Research Institute, ASCEND Trial

that focused on helping patients with Renal Disease Patients with Depression

In 2000, she was asked to serve on the Governors Rehabilitation Council for the state of California. She is former Chair of the Patient Advisory Committee for the Southern California Renal Disease Council and served on the California Dialysis Council Board.

Publications

Books

Chronically Happy: Joyful Living in Spite of Chronic Illness

Available in Paperback, Kindle or Audio

Chronically-Happly-Kindle-Audio-Paperback

About Chronically Happy

This book is a must read whether you are living with a chronic illness or you want to help someone who is.

When doctors put two-year-old Lori Hartwell on dialysis after her kidneys mysteriously stopped working, they didn’t expect her to live. That was the first time she beat seemingly insurmountable odds to survive, and she continues to “one-up” the statistics today.

“There are millions of other Americans riding the same physical and emotional roller coaster of chronic illness. We all share common threads of emotion: anger, guilt, fear of the unknown, depression, and the mind-boggling question, ‘Why me?’ I wrote Chronically Happy to help people face these feelings and abandon the crippling mental barriers that go hand-in-hand with chronic disease.”
– Lori Hartwell

As a young patient, Ms. Hartwell encountered the pioneering stages of renal replacement therapy. She was the youngest person in the state of California ever to be placed on peritoneal dialysis. Following 12 years on dialysis (both peritoneal dialysis and hemodialysis) and three kidney transplants―the last of which took place in 1990 and continues to serve her well―Ms. Hartwell has emerged as a powerful illustration of how people with chronic illness can lead complete and productive lives.

The insightful, often humorous, and touching story of how Ms. Hartwell chose to live life rather than succumb to its obstacles is laid out in her book, Chronically Happy – Joyful Living in Spite of Chronic Illness, which chronicles her approach of taking simple, logical steps in order to realize one’s dreams. Chronically Happy represents the first book written by a person with kidney disease to reach national distribution.

Speaking Engagements

Lori Hartwell - public speaker - kidney disease- kidney disease survivorLori has traveled throughout the Unites States and Internationally giving motivational and educational keynotes, presentations and workshops to healthcare professionals, patients and the general public on how to overcome adversity, pursuing your goals, patient engagement and communication, and how to be your own advocate. Her personal speaking style of using humor and personal stories to make a point leaves audiences laughing and leaving with several points of wisdom to apply to their life and work.

Speech Topics by Audience

For Medical Professionals

Finding the Road to Better Care and Happiness
In this powerful and entertaining presentation, Lori recounts her version of “The Wizard of Oz.” She acknowledges the professionals who helped her, a chronically ill patient, find her heart, her brain, and her courage. She shares what she has learned and provides concrete, specific advice on how patients and professionals can communicate more effectively with one another.

You Make a Difference!
Lori reviews movie hits to help understand the importance of communicating effectively with people who have kidney disease.  She recognizes the healthcare heroes and pays tribute to their contribution to the renal care field.

Patient Engagement: Tips, Tricks, and Pitfalls
Everyone wants people with kidney disease to be involved in their own care and to have the best possible quality of life. But how do we make that happen? Lori shares her perspective on how to effectively engage patients in their care through communication, peer support, social media, and support groups. Learn what you can do to help your patients derive optimal outcomes and enhanced well-being.

Why I Decided to Become an Advocate and So Should You
Most people would agree that regulatory and legislative issues are important but boring. In 1968, when Lori’s kidneys failed, dialysis was in its infancy, and there was no Medicare reimbursement. Now over 450,000 people are on dialysis. Lori has lived through all of these developments and explains where we have been, where we are now, and how you can use your voice and lend your skills to help shape the future.

Becoming a Kidney Survivor: Tips to Help Your Patients Thrive
Surviving chronic kidney disease requires a team effort. Health care professionals will learn about the history of dialysis and what it has meant for survival, as well as ways to support and encourage patients who want to be more involved in their own care. Lori discusses the ways patients can share their own long-term survival techniques to motivate and encourage fellow patients.

Lessons Learned: How to Be Chronically Happy
Developing kidney disease at the age of 2 and learning to live with it have taught Lori that adversity introduces you to yourself. While it is easy to become resentful when you have a chronic illness, you cannot change the hand you were dealt—but you can learn to make the most of it. Lori reveals how she has achieved a joyful life despite coping with the many challenges kidney disease has meant for her.

Chronically Happy, Damn It!
Is the glass half-empty or half-full? Life is largely about perception. Lori says, “If I focused on everything that is wrong with me medically, I wouldn’t get out of bed in the morning.” She talks about the emotions that patients experience and explains how anger, when properly channeled, can be a great motivator. She helps professionals learn how to manage and direct that anger and sheds light on some of the darkness and depression that patients face.

The Advances of Transplantation from the Patient’s Perspective
Lori was a pioneer patient and shares her journey through four kidney transplants and the changes in the options available to patients over the years.

Patient Engagement: Reality or Annoyance
Patient engagement might be a bit more time-consuming, but it delivers unparalleled rewards. By acknowledging the importance of feedback, health care professionals can provide patients with a sense of their own importance and empower them. Lori draws on her many years as a patient to share tips on how to foster an environment that will encourage true teamwork and ensure better outcomes.

For Patients and Family Members

Why I Decided to Become an Advocate and So Should You
Most people would agree that regulatory and legislative issues are important but boring. In 1968, when Lori’s kidneys failed, dialysis was in its infancy, and there was no Medicare reimbursement. Now over 450,000 people are on dialysis. Lori has lived through all of these developments and explains where we have been, where we are now, and how you can use your voice and lend your skills to help shape the future.

Becoming a Kidney Survivor: Lessons Learned from Experience
Living with chronic kidney disease has all the elements of a really good game: it is challenging, requires a team effort, calls for strategy, and at times can be amusing. However, the truth is that surviving kidney disease is not a game. So what does it take to be a survivor? Patient speakers share their experiences, strength, and hope.

Organ Donation: Myth or Fact?
Lori talks about the importance of organ donation and transplantation and describes the pros and cons of receiving a kidney transplant. Her story will touch your heart as she explains how donors can share the gift of life and medical technology can make it possible.

How to Be Chronically Happy
Developing kidney disease at the age of 2 and learning to live with it have taught Lori that adversity introduces you to yourself. While it is easy to become resentful when you have a chronic illness, you cannot change the hand you were dealt—but you can learn to make the most of it. Lori reveals how she has achieved a joyful life despite coping with the many challenges kidney disease has meant for her.

For the General Public

Lessons Learned
Throughout her life, Lori has overcome the odds again and again. In this powerful and entertaining presentation, she shares the lessons she has learned along the way.

Do You Make a Difference?
Lori discusses her tragedies, her triumphs, and the health care heroes who motivated her and kept her from losing hope as she learned to live—and live well—with kidney disease.

Four Words That Will Change Your Life
Everyone experiences fear, and in its most extreme form, fear can paralyze you. Lori shares some of the tips and strategies she has relied on to achieve her goals in her professional and personal lives despite a severe illness and more than 45 surgeries.

Organ Donation: Myth or Fact?
In an inspiring talk on the importance of organ donation and transplantation, Lori shares the pros and cons of receiving a kidney transplant. This gift of life proves that anything is possible with today’s advanced technology, and Lori’s story will touch your heart.

Awards and Recognition

(partial list)

  • May 2014, Recipient of the Clyde Shields Distinguished Service Award by Northwest Kidney Center
  • 2013 American Society of Nephrology President’s Medal
  • 2013 ABWA Top Ten Candidate for 2014 Woman of the Year
  • June 2013, American Business Women of America (ABWA) Verdugo Glen-Chapter Woman of the Year
  • September 2012, “Business Life Magazine Women Achievers” honoree
  • April 2012, City of Glendale,CA, Jewel of Glendale Women of Courage honoree
  • March 31, 2011,  recipient of “Heart & Excellence Award”, presented by YWCA of Glendale
  • 2009-2010 “Associate of the Year”, by American Business Women’s Association
  • May 3, 2010, recipient of National Kidney Registry “Patient Advocacy Award”
  • September 2007, received prestigious NRAA “Mark Zawinsky” award for Outstanding Leadership
  • October 2005, recipient of the “Women in Business Award,” from the California State Legislature
  • May 2005, named “Citizen of the Week” by KNX Radio, Los Angeles, CA
  • March 2005, named “Woman of the Year” in the 21st Senate District by California State Sen. Jack Scott (D-Pasadena)
  • January 2004, recipient of the “2003 Quality of Life Award,” presented by Nephrology News & Issues

2003 quality of life award lori hartwell
2003 Quality of Life Award | Nephrology News & Issues

Toastmasters | Powerful Patient Advocate
Toastmasters | Powerful Patient Advocate

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