5 S.T.E.P.S. to Being Your Own Patient Advocate

Cristy Kessler should be dead. The fact that she’s not is because she took charge of her own medical care. When Kessler took it upon herself to find out why she had spent her lifetime battling pain and illness, she embarked upon a journey of discovery in which she endured multiple treatments and procedures which resolved some, but not all, of her issues. Finally, armed with a diagnosis of multiple autoimmune diseases, she took charge and, with the help of a powerful team of doctors, identified the treatment that could save her life, a treatment denied by her insurance company and prohibited in the United States by the FDA. As Michael Seres, author of the blog, “Being a Patient Isn’t Easy,” and a transplant survivor himself, says in the Foreword, “With her book, she has been able to articulate in a very simple way the critical steps that every patient living with a long-term condition should abide by. She writes with complete honesty and lovely touches of humour….this is a book every single patient should read at least once. And, if you are a clinician, then this should be on your bookshelf or on your laptop as a constant reminder of the paths and decisions…patients have to take.” Throughout her medical journey, Kessler developed the skills and strategies necessary to act as her own patient advocate, which, in the end, saved her life. The five steps Kessler describes are Sensibility, Teamwork, Education, Perseverance and Patience, and Sustainability. In this genuinely compelling, honestly scripted, and engaging chronicle of her medical and personal journey, Kessler shares those strategies for others to use when faced with difficult medical situations.

Cristy Kessler should be dead. The fact that she’s not is because she took charge of her own medical care. When she took it upon herself to find out why she had spent her lifetime battling pain and illness, Kessler embarked upon a journey of discovery in which she endured multiple treatments and procedures that resolved some, but not all, of her issues. Finally, armed with a diagnosis of multiple autoimmune diseases, she took charge and, with the help of a powerful team of doctors, Kessler identified the treatment that could save her life, a treatment denied by her insurance company and prohibited in the United States by the FDA. As Michael Seres, author of the blog, “Being a Patient Isn’t Easy,” and a transplant survivor himself, says in the Foreword, “With her book, she has been able to articulate in a very simple way the critical steps that every patient living with a long-term condition should abide by. She writes with complete honesty and lovely touches of humour….this is a book every single patient should read at least once. And, if you are a clinician, then this should be on your bookshelf or on your laptop as a constant reminder of the paths and decisions…patients have to take.” Throughout her medical journey, Kessler developed the skills and strategies necessary to act as her own patient advocate, which, in the end, saved her life. Speaking directly to her readers, Kessler describes the five STEPS toward taking control of your health care with the assistance and support of a network of medical experts, family, and friends. Sensibility. Kessler urges you to pay attention to what your body is telling you and to record and describe symptoms carefully so that the doctor knows everything necessary for appropriate care. Most importantly, she says you must refuse to let anyone—even a doctor—dismiss your symptoms. Teamwork. Kessler urges you to take full responsibility for leading your team of doctors to make certain they are all working together, not at cross purposes. Don’t be afraid to change doctors if you need to. Put together a support network of family, friends, colleagues who can do for you what you cannot do for yourself. Education. This is a critical aspect in directing your medical team. Kessler advises you to do research and to use the Internet wisely to investigate symptoms and treatment and to share information collaboratively and respectfully with your doctors. Educate your support network; don’t keep secrets about your condition from the people who mean the most to you. Let them walk with you on your journey. Patience and Perseverance. Kessler acknowledges that being a “patient patient” is not always easy, but she urges you to find a balance between waiting calmly and recognizing when to act on something urgent in your life and circumstances. Ask questions you need answers to, be patient when you need to, and always persevere toward your objective of getting the best possible treatment available – no matter where it might be. Sustainability. Finally, Kessler insists that you are responsible for sustaining your body, mind, and spirit. Sustainability takes many forms. Whether it is through your faith or through personal and social networks, it is important to meet the needs of your whole self. Find a reason to get out of bed every day and find ways to pay it forward. Find one thing you can make time for each day that provides you with joy. In this genuinely compelling, honestly scripted, and engaging chronicle of her medical and personal journey, Kessler shares those strategies for others to use when faced with difficult medical situations.

Unless you have been very close to Cristy Kessler over many years, you would never have known that for most of her life, she was facing certain death from medical problems most of us have never heard of. In spite of that, she has been a role model for countless students from 5th grade through university whose lives she has touched as a social studies teacher, coach, and associate professor of education at the University of Hawaii. A three-sport standout in high school, Cristy coached both soccer and basketball, including a five-year stint as coach for TourneySport USA in Hawaii. She earned her doctorate in educational leadership and innovation in 2003, and as part of her commitment to being the best teacher and role model she could be, she achieved certification through the National Board for Professional Teaching Standards (NBPTS). Rarely has a university professor sought (or achieved) this recognition, but Cristy did exactly that in 2005, even as she was recovering from cancer surgery. In her role as an associate professor at the university, she has guided scores of teachers through successful achievement of NBPTS certification. Plagued by constant pain and fatigue, Cristy was finally diagnosed in 2006 with a constellation of auto-immune diseases: scleroderma, ankylosing spondylitis, and vasculitis, any one of which is ultimately fatal. Following years of treatment for the symptoms of these disorders, it became clear that the only way to save her life was to somehow tackle the diseases themselves, not just the symptoms. Finding no promising treatment programs in the United States, and nothing that would be covered by her health insurance, Cristy traveled to Istanbul, Turkey, in 2011 for a life-saving stem-cell transplant at Anadolu Hospital, an affiliate of Johns Hopkins University. Extensive fund-raising efforts by friends and family helped make this incredible journey a reality. Her goal is to inspire and encourage others through the story of her determination to live, even in the face of chronic pain and imminent death. Cristy lives in Honolulu, Hawaii, with her partner Liz, along with the smiling dog, Leah Kessler, and their cats, Thomas Cranmer Zivanov, Richard Hooker Zivanov, Nicholas Ridley Zivanov, Bristol and Baily Kessler, St Alban, Sir Dibley, and St. Augustine. www.cristykessler.com www.5stepstobeingyourownpatientadvocate.com