How Are You? 

Manage Your Own Medical Journey

by Patricia Foote

One in 10 people will go to the hospital this year.  Yet we receive no training for how to be a patient or how to navigate the professional medical world. The book How are You?  Manage Your Own Medical Journey empowers the reader to be informed, proactive, and at peace with a serious medical crisis.  The fascinating role and complex issues of genetics, life with a chronic illness and relationships are described in an honest, thought-provoking account of one woman's journey with a rare genetic cancer syndrome, von Hippel-Lindau disease.  Readers will benefit from the practical how-to check lists that are provided at the end of each chapter.  Patients need not merely survive, but can thrive in life after or with a serious medical condition.

"Ms. Foote tells her own story in a very moving way.  Based on her personal experience, she provides guidelines for people with any chronic or rare disease -- strong lessons in being a savvy consumer.  Any serious illness deeply shakes our sense of self, and indeed the meaning of life.  She shares her journey from diagnosis through multiple procedures to the new reality of living -- yes, happily! -- with a chronic illness.  After reading this book, you may never use the question, 'How are you?' in the same casual way again." -- Joyce Graff, Co-Chair, VHL Family Alliance

"This book is a milestone in the arena of self-help and patient advocacy.  It is a wellness handbook for every person."  -- Dr. William Kintner, Pacific Southwest Regional Genetics Network

"Rare diseases are often the last to receive attention and funding on scientific levels, and even less likely to focus on survivorship issues.  This book offers a beacon of hope to people living with von Hippel-Lindau (VHL) or other rare diseases as it shines light on an often misunderstood disorder.  By sharing an intensely personal journey, the author offers information and inspiration that will no doubt decrease the suffering of other survivors."  -- Susan Leigh, R.N., Past President, National Coalition for Cancer Survivorship

Ordering information: $15 + $2 shipping from VHL Family Alliance, 2001 Beacon St, Suite 208, Boston, MA 02135-7787 USA, or over the internet from VHLFA using your Visa or Master Card. $5 from the sale of each book sold through the VHL Family Alliance will be donated to the Alliance.

Preface to the Book

Each medical journey is different: the symptoms, the outcomes and the personalities involved.  However, there are some mutual experiences we will all face.  I share my observations and learning from my experience in the hope that this book will be helpful to others facing serious illness and their own medical journey.

One out of ten Americans will become a hospital patient this year. In a rapidly changing healthcare environment, consumers need to know what to expect and how to cope.   Healthcare consumers today know more, expect more, and demand more and are often best served by being their own medical case managers.  At the time I was going through my medical situation, I searched for any books written by patients from the patient/survivor perspective on coping strategies.  There were only a handful.   Printed information on my rare medical condition was all but nonexistent.  It is out of a desire to empower readers in their own medical journeys that this book is written.

The medical condition I live with is a rare familial cancer syndrome.  Please substitute the name of any condition you wish to replace the one I am dealing with to make the reading more relevant to you or to those you love.

If the patient has a rare disease, the challenges are often greater.  According to the National Organization of Rare Diseases there are five thousand rare diseases that affect twenty million Americans.  One in every twelve individuals in America has received a diagnosis of a rare disease.  The challenges will include receiving an accurate diagnosis, finding information about the condition, meeting other people who have the disease, finding knowledgeable medical personnel, and explaining the disease in comprehensible terms to others.

My own rare condition is von Hippel-Lindau (VHL) disease.  As recently as 1993 the amount of knowledge about VHL was minimal.  There were only a handful of researchers working on isolating the gene.  After the publication of the location of the gene and theories about its function in 1993, global attention has focused on VHL.  I am particularly grateful for those earlier pioneers in this medical research.  They are truly dedicated individuals.  As one doctor told me: "If we can't solve this puzzle, we will die trying!"  Another researcher who has been working for a lifetime on VHL research has handwritten notebooks on the many families he has worked with.  The handwritten notebooks are the precursor for more sophisticated databases and technological tools now available and which allow research to proceed at a much quicker rate.

Jean Shinoda Bolen, in Close to the Bone, eloquently describes the effects of a life-threatening illness:

"A life-threatening illness has the impact of a stone hitting the still surface of a lake, sending concentric rings of disturbance out, as feelings, thoughts, and reactions radiate out from this center.  It impacts relationships, it stirs the depths of others, it potentially brings the patient and those who are affected 'close to the bond,' into the proximity of the soul.  Soul questions arise about the meaning of life..."

In order to protect the privacy of family members, friends, and doctors, some names will be changed.  My husband, who was beside me all the time, will not be described in detail.  This should not be seen as a slight of his steadfast love and support; rather a deep respect for his privacy.  It would have been impossible to have made this journey without his wonderful caregiver by my side.  My daughter, who is the most vulnerable in terms of having her confidentiality breached, will be described only in abstract terms, especially with reference to the issue of genetic testing.

For that support, knowledge and love of family, friends and medical professionals I say a resounding "thank you."  It is impossible for anyone to make a medical journey alone.  I hope that you, the reader, will find practical information, knowledge, support, and love in the following pages.

Table of Contents

The Medical Journey

1. The Diagnosis

2. White Coat Days

3. The Recovery: First Steps

4. Gamma Knife Surgery

5. An Unexpected Surgery

6. Relationships

7. Support Groups

8. Genetic Blueprints

9. Insurance Companies and the I.R.S.

10. Recovery: The New Reality

11. Reaching for Wisdom

How To:

How to find a good general practitioner

How to deal with a serious diagnosis

How to get ready for hospital

How to make those first steps towards recovery

How to find a specialist

How to deal with medical incompetence

How a patient can help relationships

How to be a caring caregiver

How to locate a support group

How to locate a genetic counselor

Questions you may have for your Genetic Specialist

How to evaluate a health insurance company

How to accept the new reality of life after a serious illness (How to live life with a chronic disease)

How to find clinical trials

Resources

Bibliography

Ordering information: $15 + $2 shipping from VHL Family Alliance, 2001 Beacon St, Suite 208, Boston, MA 02135-7787 USA, or over the internet from VHLFA using your Visa or Master Card. $5 from the sale of each book sold through the VHL Family Alliance will be donated to the Alliance.