Hiya: Patient Advocacy Was Her Calling and Salvation

By Karen Winston

A product of a poor gene pool, Hiya endeavored to live beyond her physical limitations and intellectually excel beyond those around her. She lived a life of constant discovery, research, learning, and teaching, which was complicated frequently by doctors, hospitals, treatments, insurance companies, and the law.

After serving as the go to research driven caregiver for family and friends for most of her adult life, Hiya found herself in critical need of medical attention. Living on the brink of poverty and without family support, she did what shed always done for others and became her own advocate.

Written as an inspired biography, the story of Hiya and the epilogue were written as a legacy to an amazing woman who epitomized patient advocacy and why it has become a critical determining factor in the quality of healthcare that an individual may receive.

What readers have said

The book was very well written and I found the Epilogue to be particularly compelling and strong. The story itself kept me interested and motivated to keep reading. I have known patients like Hiya in my years in healthcare and I could well see how you became very attached to her.
Anonymous professional caregiver

Hiyas story is illustrative of the key messages involving patient advocacy and the healthcare system. For others, perhaps theyd like to read the Epilogue first, they then would read Hiyas amazing story of tenacity.
Lorraine Stiehl, patient advocate coordinator, California Institute for Regenerative Medicine

• Language: English
• Publisher: AuthorHouse
• Release date: Aug 16, 2012
• ISBN: 9781477248201

Karen Winston

Karen Winston, a first-time author, holds a B.A in communications/sociology from UC San Diego and is vice president of programs for CONNECT, an internationally recognized non-profit, business accelerator for early stage technology and life sciences companies. She lives with her husband in southern California.

Book preview

© 2012 by Karen Winston. All rights reserved.

No part of this book may be reproduced, stored in a retrieval system, or transmitted by any means without the written permission of the author.

Published by AuthorHouse 03/04/2013

ISBN: 978-1-4772-4819-5 (sc)

ISBN: 978-1-4772-4820-1 (e)

Library of Congress Control Number: 2012912805

Any people depicted in stock imagery provided by Thinkstock are models, and such images are being used for illustrative purposes only.

Certain stock imagery © Thinkstock.

Because of the dynamic nature of the Internet, any web addresses or links contained in this book may have changed since publication and may no longer be valid. The views expressed in this work are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibility for them.

Contents

Acknowledgements

Introduction

Part I Special And Rare

Chapter 1: The Antibiotic And Radiation Years

Chapter 2: A Change In Environment

Chapter 3: Immune System Gone Missing

Part Ii Sharpening The Tools Of A Patient Advocate

Chapter 4: Research, Interviewing, And Reporting

Chapter 5: Learning About Others

Part Iii More Firsthand Experience Evidently Needed

Chapter 6: Head-On Into Healing

Chapter 7: The Holistic Journey Begins

Chapter 8: Immune System Gone Missing… Again

Part I The Patient Advocate Rises

Chapter 9: First Help Mother

Chapter 10: Almost Making It In New York City

Chapter 11: A Doctor For Dad?

Chapter 12: The Raid

Chapter 13: Super Hero To Friends

Part V Taking Care Of Self

Chapter 14: I’m Next, But I Won’t Be Last

Chapter 15: Searching For Dr. Right

Chapter 16: Firestorm

Chapter 17: Distractions Keep Me Going

Chapter 18: Life’s Daily Challenges

Chapter 19: Magic #65… Not!

Part Vi Needing A Patient Advocate

Chapter 20: Request And Denial

Chapter 21: Life On The Borderline

Chapter 22: I’ll Get By Somehow

Epilogue

Resources

About The Author

To my mom, Ann and mother-in-law, Helen; my two-family set of brothers and sisters, Jay, Susan, Bob, Jennifer, Susan Lee, Diana, Jane, and Bill and my beautiful and brilliant nieces and nephews, Haley, Molly, Paige, Jerry, John, Margaux, and Alexandra.

To my closest friends, Connie, Paul, Cynthia, Greg, Nancy and Bob and to their beautiful children.

Most of all I dedicate this book to my husband, Carl and our two loving sons, Tyler and Carl (aka Harry) who gave me personal space and time to write this book and who never once stopped me from pursuing it to conclusion.

In loving memory of my father, John (1933-2003) whose last years in a skilled facility for Alzheimer’s disease provided me with a first glimpse into an ailing healthcare system and an end-of-life journey.

And, finally to Hiya who shared her journey with me in hopes of being an inspiration for change and a teacher to others so that they might experience better outcomes.

ACKNOWLEDGEMENTS

When I first encountered Hiya it was 2005 and it wasn’t until 2010 that I realized I needed to write this book, which came to me as a metaphorical whack to the side of the head in a video rental store while searching for a movie to watch on that particular weekend. Thanks to the write up on the box cover for The Soloist with Jamie Foxx and Robert Downey, Jr., goose bumps ran up and down my arms; my heart started racing with a rush of adrenaline, and I felt a level of excitement that was absolutely bursting out my pores. I immediately called my life coach, Cindy Silbert, while standing with the movie in one hand and the phone in the other. With my whole body shaking and tingling, I told Cindy that I knew why Hiya was in my life—that I was here to tell her story. An excellent and intuitive coach, Cindy was excited for my breakthrough discovery and probably was silently saying, Well it’s about time! Thank you, Cindy for your sensitive, wise and patient guidance.

For opening my health awareness that ultimately helped me take an active, holistic interest in Hiya, I thank Guru Prem Kaur and David Shannahoff Khalsa who introduced me to natural healing and nutrition many years ago, when I was a young mother trying to make healthy decisions for our sons and myself. Not only were they helping me take care of our sons, they also served as my healthy role models. As my interest in nutrition grew with positive health experiences, I was led to a marketing position at Jimbo’s… Naturally! which was where I met Hiya.

Hiya, Hiya, Hiya… how can I do justice to an acknowledgement of this amazing woman. I am deeply grateful first of all to her for sharing so much of her life and journey with me, and also for her willingness to allow me to write her story in a fictionalized style. Had she been able to write this book, and she would’ve preferred it in order to get all the details completely accurate, it would’ve been a much lengthier documentary, journalistic-type book, editorializing the healthcare system. However, she understood and approved of my desire to treat it more as a story that would engage a broader readership and hopefully inspire others to seek the best of care. I am grateful that I could be her sounding board with each and every voice message she preferred to leave me which helped her release some of her daily stress.

I would also like to thank CONNECT, my employer for the last five years, which placed me into a variety of business and research environments and introduced me to all manner of technologies, including wireless health, as well as to an amazing community of brilliant researchers, technologists, scientists, engineers, inventors, and the many outstanding business professionals who share and support the need for innovation as a key economic driver. The entrepreneurial environment of CONNECT gave me the confidence to pursue my dream of writing this book. Within CONNECT, I especially wish to thank Camille Saltman, president, for her friendly and supportive acknowledgement of my interests outside the job.

It was through CONNECT at a networking event that I first met Ariela Wilcox, my book coach, and to whom I am deeply grateful. Ariela is a task master with many years of publishing experience. To tell me I would write this book in ten weeks was overwhelming to me, but I put trust in her judgment and experience, and drank the cool-aid or said another way, I followed her rules. Given CONNECT deadlines, vacation and couple of holidays thrown in, the first draft of the book was actually written over a 24 week timeframe, but even this surprised me since I’d essentially and comfortably been accumulating voice messages and notes for more than five years. Thanks to Ariela’s guidance and ability to see the potential for the story, this book took on a more direct message and appeal for patient advocacy than I had originally conceived. Because of her personal interest in health and wellness, Ariela inspired and encouraged me to build in a stronger editorial voice for which I am deeply grateful as well.

And, then there were the final draft readers who generously gave their time and thoughtful comments that helped me fine tune the book. Thank you to Connie Shaner, one of my best friends who happens to also be a fine attorney, who provided counsel on where I might have legal exposure in the book. Due to Connie’s encouragement, I removed the names of the hospitals after already having decided to change the names of the doctors.

I was fortunate to also have Lorraine Stiehl as a reader. Lorraine has been a patient advocate for many years on behalf of her husband, Chris, as well as through her many years working with the Juvenile Diabetes Research Foundation and the California Institute for Regenerative Medicine. Lorraine provided detailed, thoughtful and encouraging comments on many aspects of the book and I am truly grateful. I consider her a new friend and colleague in patient advocacy and look forward to future opportunities to collaborate.

There was also a wonderful and unconditionally kind woman who works with Hospice who agreed to be one of my readers and whose identity I will protect due to numerous conflicts of interest that could arise from her association with the book. Her comments and acknowledgement of the book’s message and of the sensitivities in the healthcare system that were raised further encouraged me to finish the book with great self confidence.

I also wish to lovingly thank Carl, my husband, who although wasn’t allowed to read the book before it went to print due to one of Ariela’s rules and out of my fear of possible marital strife, served as an excellent sounding board on many situations and ways of interpreting Hiya and her story. Usually over Carl’s fabulous, gourmet cooking and a nice bottle of pinot noir, I enjoyed our many conversations and debates, and found inspiration in his perspective.

Designing the book cover proved more difficult than I imagined. I ultimately sought the perspective of a gifted young artist, Allison Pfingst who I wish to thank for her creative talent and suggestions.

Thank you, Ariela, readers, and all the inspiring muses who encouraged and helped me along this first of many more writing journeys.

INTRODUCTION

It is said that people come into and out of our lives when we need them. For the past seven years, I’ve had the privilege and, some might say burden, of knowing Hiya. It was 2005 when the phone first rang and her voice was on the other end. At the time, I was working as marketing director for Jimbo’s… Naturally!, a chain of then three natural food stores. Hiya called me because she was not getting the response she wanted from the vitamin department. Never satisfied, Hiya would always seek the higher level manager until she got as far up the chain as she thought was worth her time, many times speaking to presidents, formula designers, or chief editors, when she thought publicity was the answer. This, among other traits, I admire about her.

While I don’t remember the exact nature of that first call, I do recall feeling that I had just made an acquaintance to which I might later regret having been kind, patient and helpful, but that’s my nature. For the next 10-12 months, Hiya would call me at work periodically asking about the availability of certain supplements and natural remedies. She was always looking for products she had learned about from listening to talk radio that might help her with her many symptoms which I had assumed were due to her breast cancer she had told me about. If we didn’t carry the product, she would try and convince me to convince the buyer or Jimbo, the owner, to meet the local rep and sample it, sure that we would agree with her analysis of the product and its efficacy.

You might wonder why, if she was so tenacious about getting to the top person in a company she would not just call the buyer or Jimbo directly, but you see, she’d found me—someone willing to listen and try to help. Even if I didn’t rise to her expectation as the best and most knowledgeable person in the company who could take action on her behalf, she recognized that I could be a friend as well, and friendship was even more important to her. I, therefore, became one of Hiya’s phone pals.

During that first year of phone calls, I, too, came to trust her and divulged that I was representing a natural product through a multi-level marketing company that might ease her knee and back pains. (If my employer were to find out about my side business and activity I would probably be fired. Hiya understood.) She was eager to try the product, called RegeniCARE®, when she learned that it had undergone testing at the pharmaceutical level, including double blind placebo human clinical trials and had come out ahead of other leading products on the mainstream market. To make sure that I would agree to meet her, she even dangled that she would help me sell the product to her elderly friends in Rancho Bernardo, California who all needed joint relief. We set a date to meet face to face.

Being curious to meet the woman behind a year of phone calls was only part of my original motivation in getting together. My interest at this time also included a desire to sell more of the natural products into which I’d put much faith, time and investment. Hiya seemed to be the right kind of person who could introduce me to others with the means to buy. Additionally, and similar to Hiya, I have had a strong interest in Complimentary Alternative Medicine (CAM) for many years, stemming from successful personal experiences with nutritional healing, massage, and chiropractic care. However, my knowledge of CAM was far inferior to Hiya’s. Therefore, this seemed like a serendipitous opportunity to learn from what she knew and had experienced. How little did I know then!

For starters, I did not know much about Hiya’s living conditions, complete health profile, lack of financial stability or family situation. All I knew was that she was a 58 year old woman who sounded age 40 when she was excited and age 80 when her health was bothering her, which became most of the time. Her voice intonation combined with her succinct and uncanny ability to leave complete voice messages in the exact number of minutes before the system timed out led me to think she had been an accomplished and successful publicist. I came to learn that she had been a reporter, researcher, and publicist, and had spent a number of years in New York. Over the next six years I came to learn much more.

Our first face to face was at a Greek restaurant near her home in a rundown retail center just a mile from her home. Hiya drove herself and met me. I had brought samples of RegeniCARE® for her to try, along with supporting scientific literature because at this point in our relationship I already knew Hiya required research or some kind of write up from an authority before she would fully evaluate the product. I was hopeful that I might have a new customer and referral source after a year of phone calls. Hiya had other plans that I did not recognize until much later.

She was already seated when I entered the small neighborhood restaurant. We were the only customers because it was about 2:30 pm on a Saturday afternoon. Hiya had very short dark brown hair, fair and clear complexion, and the most sparkly dark brown eyes I’d ever seen. Her whole face smiled when she saw me. She pushed off from the table with her hands and stood up as best she could, all five feet of her but I quickly saw that she was probably taller with a straight posture. We hugged like we’d known each other for many years and spent the next three hours talking about RegeniCARE®, other products, and her plans for helping me sell and make money.

In that first real meeting, I didn’t learn much about her life. We talked mostly about her ideas with getting help to the people in her community who, like her, were ailing and didn’t have many resources. Hiya wanted to create seminars and bring in speakers of the multi-level marketing company that represented RegeniCARE® . . . a product she hadn’t even tried yet. She seemed to already be convinced it would work for her and she was plotting for us to make money with it. She had ambitious plans and I could tell that in her younger years she must have been in constant motion, making connections, and taking action wherever needed.

Taking action on her health is something Hiya does better than most. When it comes to her health, Hiya is the first to say that she comes from a family of poor health genes, but very high intelligence genes. Her life’s journey was charted based on these poor health genes. No matter what other professional turns Hiya tried to take, including an associate producer position with 20/20, her poor health or that of her parents always put her back on the road to finding the right information, the right treatment, the right doctor—patient advocacy was her calling.

I’ve heard that it takes 10,000 hours of doing something to become an expert at it. If that is so, then Hiya is an expert patient advocate. First, as an observer of her parents caring for her, which included moving the family from the Los Angeles smog that irritated her asthma to San Diego, to Hiya caring for her ailing father who died from a heart attack at age 56 and her mother who died at age 65 from a stroke, and then her good friend Marsha (in her 50s) who died of breast cancer. Among other maladies, both parents had had TB as children and both had come close to death early on from anesthesia.

Helping her parents and friends became Hiya’s mission. Her tenacity for finding information and solutions is basically an obsession. Combine this drive with her compassion for others and you have the perfect recipe for a patient advocate. Not being a complete patient advocate myself, what I’ve learned about this selfless activity is through Hiya’s recounting of her past. And, finally in the face of not having her own patient advocate for her breast cancer and other diseases, Hiya continues to self-advocate and rely on friends and acquaintances to support her however they can.

This is where I come into her story. Over the years, I’ve continued to send RegeniCARE® to Hiya which continues to help ease her joint pain and reduce inflammation generally throughout her body. Since Hiya does not have a computer or energy most days to travel to the library or nearby hotel to use a computer, I’ve done various online searches of products, doctors, healers and organizations for her, along with emailing doctors on her behalf. On occasion, when work permitted, I’ve accompanied her to doctors’ appointments and taken notes. She would like much more from me; she would like me to be her complete patient advocate and executor of her estate.

Knowing how Hiya served others as a patient advocate and how analytical and thorough she is in her own research and reporting, I have deliberately (and reluctantly) kept a distance from assuming the role as her patient advocate. How heartless! How selfish! I even say this to myself so go ahead and feel it.

Here’s a woman suffering from stage 3B breast cancer (a large tumor that has spread to the skin, chest wall, and mammary lymph nodes), arthritis, excessive chemical exposure, pulmonary disease, Paget’s, brain injury, spinal degeneration, asthma, and an extraordinarily compromised immune system, with insufficient financial means to get the specialized care she needs, and with virtually no family support; living alone in a home that is in disrepair in a community of retirees with not much more than she has.

As I got closer to Hiya and learned more and more about her health history and that of her family and friends, I became fascinated and later frustrated with how it has directed her life and stifled her living. And, truth be told, how her health has infiltrated my life nearly to the brink of directing it as well.

Patient advocates come in many shapes and sizes. There are the professional case workers for hire who will drive the individual to/from appointments, take notes during appointments, keep health records up to date, make appointments, and generally organize the medical and insurance journey for the person. This works well when family members live too far away to provide this level of care or when there is no family support, but there is enough money to hire the professional.

Then there are wonderful friends who are able to do many of these same activities, but who are perhaps not as knowledgeable about the medical system and just do the best they can, learning along the way.

Hiya has been blessed with many of these friends. This is as close to having a family member take over the travel plans, itinerary, and reporting of the medical journey as Hiya comes. If she had a family member who would take interest in her health and well being, their actions on her behalf would mean even more to Hiya. It’s not to say their work would be any better or even more compassionate than a true friend, but because it’s a blood relation it would nonetheless carry more significance. It comes down to dignity, honor and respect.

However, to serve as a patient advocate to the degree that Hiya has poured into the role over the years requires yet a different kind of individual. If there were a Super Hero in the world of patient advocacy, it would be this person. In reviewing this role for myself, I stepped back, unable to make the sacrifice which I saw as potentially damaging to my marriage, kids, career and ability to be there for my own family. I’ve been open with Hiya about my limitations and feelings. She has accepted them and understands.

Hiya has played Super Hero for others and this book will detail some of her heroic feats. Beyond caring for her parents and friends however, she has also been self-managing her healthcare and has, despite all medical predictions, kept herself alive by self treating and persistent research. Where has been the service by the medical system over these 30 years? It’s been a mix of sporadically good and bad experiences, which have led Hiya to realize that it’s really up to her.

Part of my objective in sharing Hiya’s journey with you is to draw attention to the flaws in the current patient advocate (PA) concept and reality. Whether you are fully insured, self insured due to wealth or disadvantaged as Hiya was, you will see through Hiya’s experiences that we are all susceptible to unfortunate mistakes and incorrect diagnoses. Even the best of patient advocates cannot guarantee that you’ll be safeguarded from errors, but errors certainly will be minimized to the extent possible with the oversight of a diligent, tenacious PA.

The success of a PA in the caring for another can be argued is determined by the healthcare system in which they must operate. The predominant medical care available today is limited to and by traditional western style medicine, the insurance payment structure, and the litigious environment that’s unfortunately become our last salvation for redemption. Taken as an integrated model, this system side steps (or shortcuts some might say) the needs of the whole person in favor of reducing and quantifying healthcare in terms of number of patients, surgeries, or treatments done in a day which will equate to the lowest level of liability risk and the maximum cost recovery allowed by insurance companies. Can this paradigm change? is a moot question today. It must and it is… even as I write this story. We, as a society, are fully aware of how broken the system is and of the terrible financial burden it has placed on our economy. In our lifetime, we will witness a massive transformation in the delivery and concept of healthcare or as Eric Topol, M.D. eloquently titled his book, The Creative Destruction of Medicine. The title alone says it all to me. The creativity is coming from the new fields of genomics, precision medicine, wireless health, telemedicine and mobile health. Just like the internet revolutionized the way we do business and communicate, so too are these new technologies revolutionizing medicine; full transformation is only a matter of a few years.

Given this exciting new era in technology coupled with the need to maintain human dignity in the face of chronic and terminal disease, my desire is to illuminate an alternate type of PA which you’ll read about in the Epilogue; one that approaches the care and healing journey of another person in a different and more cost effective medical paradigm that is not only possible, but probable given the advances in wireless health technology.

Leading up to the Epilogue, which I encourage you to read, you will notice that I have included comments about patient advocacy at the end of each chapter. Some of these comments serve as instructive tips, while others suggest how alternative approaches to Hiya’s circumstances might have allowed her a different experience and outcome.

With Hiya’s consent, I have written this recounting of her life with particular focus on her episodes as a patient advocate, self-advocate and woman in need of a Super Hero, as well as her experiences in self treating and the ability to stay alive despite her economic circumstances and the medical naysayers she encountered. Through this storytelling, I hope you’ll open yourself to the possibilities that alternative options not only exist, but that you may develop hope and trust in that they may be of service to you at some time in your health and wellness journey. Hiya would want you to hold this understanding and fully explore all that is available and documented, if you are ever faced with a health challenge.

Deciding to write Hiya’s story did not come until much later in our relationship so I did not have the luxury of intentionally gathering information for the purposes of chronicling it. Instead I’ve gone back to old notes and relied on the interactions we’ve had. Face to face time spent together has been minimal over the years since most of our conversations have been by phone which worked better in our scheduling due to Hiya’s unpredictable level of energy on any given day. Additional information for the book has come from the enormous amount of voice messages she’s left me over the years in her true journalistic reporting phone skill style. Some days I’d come home from work and Hiya would have left me seven messages. Sometimes the messages would request research be done, some would simply be a re-telling of her day or something from her past.

When questioned about her intent with leaving so many messages for me, Hiya told me it had become a kind of therapy for her—like a silent sounding board. In our phone conversations we would sometimes revisit the message on the voice mail and other times just move on to another subject.

Many of the passages in the book appear to be in Hiya’s voice. These episodes are fictionalized because my notes did not contain all the facts. Hiya has not been a writing contributor nor have I bothered her with excessive interviews and questions due to her poor state of health. These days, Hiya spends 18-22 hours in bed resting and sleeping off and on. The time the she is up and feeling like she has the energy, she spends on the phone or in person talking to doctors, researchers, caregivers, healing experts, neighbors and