Surviving Medical Care: A Mastocytosis Patient’S Journey in the Medical System

By Ruth Brown

Author Ruth Brown was born with mastocytosis, a rare, complex, and little-known disease responsible for producing a multitude of diverse symptoms. As a result of her condition, she experienced many incredible encounters with medical professionals and institutions. In Surviving Medical Care, she writes of the nearly fifty-five years she spent seeking medical attention for a series of seemingly unrelated and sporadic symptoms.

While living a relatively normal life as a wife, mother, and software developer, she coped with the challenges of her affliction. As her condition worsened, she desperately sought a correct medical diagnosis and appropriate treatment. In her frequent visits with medical professionals, her care ranged from outstanding to poor and even horrifically negligent. Despite numerous obstacles, she never lost her optimism or her sense of humor.

In this memoir, Brown shares how her extensive experience as a patient exemplifies pitfalls of medical care in the United States. Her problems arose not from a lack of excellent medical coverage but from a variety of other problems: physicians with poor communication skills; unnecessary, costly and invasive testing; medical personnel not trained to think logically or creatively; tight schedules in physicians offices; overcrowded and understaffed emergency rooms; and indifferent physicians.

While Surviving Medical Care narrates Browns personal story, it has much to say about how Americans need to be involved in their medical care and advocate for improvements in the medical system.

• Language: English
• Publisher: iUniverse
• Release date: Jan 31, 2015
• ISBN: 9781491751152

Ruth Brown

Ruth Brown is the creator of some of Britain's best loved children's books, that have been shortlisted for many awards, including the Kate Greenaway Medal. She has created a great many picture books for Andersen Press and is highly respected as an author and illustrator. She was born in Devon and now lives in London and Kent.

Book preview

SURVIVING MEDICAL CARE

A MASTOCYTOSIS PATIENT’S JOURNEY

IN THE MEDICAL SYSTEM

Copyright © 2015 Ruth Brown.

All rights reserved. No part of this book may be used or reproduced by any means, graphic, electronic, or mechanical, including photocopying, recording, taping or by any information storage retrieval system without the written permission of the publisher except in the case of brief quotations embodied in critical articles and reviews.

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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.

ISBN: 978-1-4917-5116-9 (sc)

ISBN: 978-1-4917-5115-2 (e)

Library of Congress Control Number: 2014922211

iUniverse rev. date: 1/23/2015

CONTENTS

Preface

Introduction

Chapter 1   A Troubling Childhood

Was I clumsy, or was it theatrical swooning?

Was my mind going?

Chapter 2   A More Troubling Early Adulthood

A wonderful internist

Why was I living in the bathroom?

A desperate patient blunders

Pregnancy induces strange things

Chapter 3   Moving on in Life and Troubles

What was happening to me?

Serious enough for a major medical center

Frightening events

More problems, more doctors

Sunny days ahead

Chapter 4   A Diagnosis, Please?

Sunshine can be disastrous

A colicky endocrinologist

A wise neurologist

Oh, that aching heart

Dr. House’s protégé?

Chapter 5   Seeking Treatment

A well-respected medical center?

What really happened

Dr. Breast

Dr. Death

Used for teaching

Dr. Annual

Shocking

Strike 1

Another well-respected medical center?

Seeking justice

Strike 2 is out by my rules

Chapter 6   The Road to Better Care

Testing for profit

Forever changing internists

An old-fashioned doc

Dr. Sniffles

More emergency room experiences

Chapter 7   Lessons Learned

Works Cited

Resources To Learn More About Mastocytosis

Websites

Papers

PREFACE

I was born with mastocytosis, a rare, complex, and little-known disease responsible for producing a multitude of diverse symptoms. As a result of my condition, I experienced many incredible encounters with medical professionals and institutions. Some have been a source of entertainment to my family, friends, and acquaintances, although not always for me. A number of friends, as well as some of my current physicians, have mentioned how my story would make an excellent book, but I had begun working on this long before hearing such comments. Almost losing my life from inappropriate care was the impetus that inspired me.

How does this memoir relate to others? While this is a personal story, it has much to say about how we as Americans need to be involved in our medical care, on a personal basis as well as politically advocating for systemic changes.

Those with chronic diseases will relate to my situation: the dependence on medications, the continual need to manage one’s care, and even, at times, the need for emergency care. For those who share any of these challenges, I’m hoping my story will inspire them to live their lives to the fullest.

Having gone through so many years with unexplained health problems, I always believed there was a story to tell. Anyone with an undiagnosed illness has probably shared some of my feelings: frustration, self-doubt, fear, and longing for a medical explanation. They will find that they are not alone and may learn from my story.

INTRODUCTION

This book is dedicated to fellow patients who suffer from rare diseases and to the National Organization for Rare Disorders (NORD), which is dedicated to helping patients with rare afflictions and their practitioners. The National Institutes of Health (NIH) defines a rare disease as one that affects fewer than 200,000 people in the United States. Approximately 6,800 rare disorders affect more than 30 million people in the United States (National Organization for Rare Disorders, Inc., 2014).

This is my story, the account of a patient born with one of these orphan diseases, systemic mastocytosis, a rare hematological disorder. How I came to be diagnosed and treated was often challenging for me as well as for the medical community. For over a century doctors knew about the characteristic skin rash associated with urticaria pigmentosa, a cutaneous form of this disease. By the mid-twentieth century researchers began to document cases in which the abnormal cell proliferation resided in the patient’s bones and organs as well as in the skin. Not until 1991 had the medical community officially recognized the form of mastocytosis I have, indolent systemic mastocytosis without skin involvement, in which the abnormal cell proliferation is restricted exclusively to the bones and organs (Escribano, et al., 2011). With this more recently discovered form of mastocytosis, it was virtually impossible for doctors to diagnose such cases until symptoms became pronounced and persistent. Mastocytosis symptoms are diverse, occurring in different episodes throughout the patient’s life, sometimes repetitive, varying in intensity, and in different combinations. The medical problems I have experienced throughout my life probably have all been due to the mastocytosis; there is no definitive list of symptoms, as research is rapidly expanding on how this disease affects patients. Only my more memorable experiences with these symptoms and medical care are discussed.

Diagnosis and treatment for this disease are, at best, challenging. Research is developing new ideas and methods for diagnosis, often contradicting previously held ideas. A cure is many years away, since orphan diseases receive scant research funding, yet this particular disease can be life threatening and, in rare instances, progress to an incurable form of cancer, mast cell leukemia.

This is also a story of good guys and bad guys—the good physicians, who took the time to listen to their patient and apply their medical expertise to help as best they could, and the bad physicians, who were more interested in managing their reputations, their finances, and their egos than in their patient’s well-being. It is also a lesson on our current medical system’s shortfalls: ignoring the patient’s needs while promoting useless and possibly harmful tests and medications, understaffing often chaotic hospital emergency rooms, and unnecessarily depleting patients’ finances. In spite of all this, my story validates how a patient with enough determination and resources can eventually obtain quality care. While our medical system does not always encourage the highest possible level of medical care, the most egregious medical practices are punished.

Most names in this book are obviously fictitious. In some cases early in my life where doctors delivered superb medical care, I have revealed their names. Similarly, I have omitted names of medical institutions that provided me with less than satisfactory medical care. However, the incidents are all described as well as I could recall.

CHAPTER 1

A Troubling Childhood

Was I clumsy, or was it theatrical swooning?

I was born in 1945, and I experienced a perfectly normal childhood associated with that era, except for early signs of mastocytosis. These signs came and went and often manifested in remarkably different ways. Until I was diagnosed with mastocytosis and learned more about my disease, I thought that these disparate phenomena were totally unrelated. As my disease progressed with time, I had begun to agree with some