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by
James W. Rupp
Dedicated to my wife Pearl and to our three children,
Julie, Jim and Corinne, whose loss matched mine
Foreword
There are many illnesses that are sufficiently rare that many of us never heard of them. Much is known about cancer, diabetes, asthma and other somewhat common diseases so the rare ones can truly be shocking when they occur. This narrative is about two such illnesses – Giant Cell Arteritis (GCA) and its companion disease Polymyalgia Rheumatica (PMR).
I will take you on the nine-year quest of one patient – my wife Pearl - to understand, manage and attempt to overcome these diseases and the consequences of therapy used in their treatment. You will find that the journey consisted of medical practices by family physicians, specialists, clinics and hospitals, facts obtained from medical journal publications, self analysis by the patient, concerns of her husband, and experiences of other patients shared via internet support groups.
The odyssey included professional opinions that varied between being sound, contradictory, and in some situations obviously inappropriate. Poor judgments were made by medical professionals, by me and by the patient. In some situations care was managed "by the book" which might not have been current, and the discipline needed to adhere to treatment guidelines was lacking on occasion.
Medical facts are presented in some instances without providing sources. The reader must pursue authoritative substantiation of the material presented if desired to confirm its veracity. I am not a medical professional – engineering was my background and career. However, I did rely on several hundred medical journal articles or abstracts for reference material during the course of her illness. One finding not at all surprising was that some medical journal articles are contradictory of others in their conclusions. Thus, speculation and personal experience are significant aspects of the process.
The identification and management of these diseases became a series of judgments by all involved. The final medical judgement was vital and speculative, made in a hospital emergency room. Two options were available – the ER doctor chose one. Would Pearl be with us if the doctor had chosen the other?
The journey is presented in a chronological style based on visits with her doctors during the course of her illness. It is my intent that the reader, if a patient of a vasculitic disease, will find something informative in reading of her journey. Others hopefully will gain some understanding of this serious and rare disease for which currently the cause is unknown and treatment options are very limited.
Names of doctors and hospitals have been omitted - this narrative is not intended to defame or question the sincerity of all involved in her care. It is hoped that the reader will be directed toward inquiry and gain the realization that physicians need to be questioned or redirected on occasion, and second opinions sometimes are essential. Logs of doctors’ visits are provided for those who wish to pursue details.
The ending of the journey is not a happy one. It is the conclusion of real events described the way they happened from the perspective of the patient and her caregiver.
jameswrupp [at] yahoo [dot] com
About the Author – My dad was granted a BS degree in Mechanical Engineering in 1954 by Purdue University. The skills of communication, research, spreadsheet and trend analyses and investigative reporting gained in his forty-four year career in aerospace were applied to my mother’s illness during the nine years of special care he shared with her.
Corinne R. (Rupp) Narkiewicz, Graduate of Vogue School of Cosmetology