5 S.T.E.P.S. to Being Your Own Patient Advocate--Enhanced Edition - My Health. My Body. My Voice

Chapter 1—A Lifetime of Pain and Illness

My name is Dr. Cristy Kessler, and I should be dead. All my life I’ve been plagued by a series of rare, ultimately lethal autoimmune disorders, as well as multiple types of cancer. When I was nearly forty years old, the medical community basically threw in the towel and told me there was nothing they could do for me. It was only by becoming my own patient advocate that I reclaimed my life and will to live, discovered, researched, and underwent a controversial stem cell transplant procedure, and became healthy and pain free for the first time in my entire life.

I’m forty-two now and for the first twenty-four years of my life I had no idea that there was something wrong. I thought everyone lived with pain. Hell, I thought everyone who got up in the morning had a hard time moving. But how could I know anything different? I had always had this pain for as long as I can remember. My first conscious memory of the stiffness and pain I felt when I put weight on my legs was when I was in preschool. I remember sitting on the reading rug and listening to Mrs. Macky. We were all sitting “criss-cross-applesauce” and when story time was over and we were supposed to lie down to have our naps; when I tried to move, a burning pain shot straight up and down my spine. With a jolt I sat straight up and immediately got scolded for not lying down. None of the other kids seemed to be bothered by this pain, so I lay down, curled into a ball, and cried silently until I fell asleep.

Oh, and by the way, I’m not that kind of doctor. Although I’ve been sick all my life, instead of a medical degree, I managed to earn a doctorate in education. My educational journey is another story, but I am proud of my achievements in spite of the pain and illnesses that were my constant companions on that journey. So navigating the health care system has been a new journey for me.

You may (rightly) ask, what exactly qualifies me to give advice on being your own patient advocate? It is a question I have been asking myself for the past three years as this book muddled its way around in my mind. But once I put the details of my health care experiences on paper, I quickly saw that I have, indeed, developed enough experience, over time, to begin to categorize my experiences into steps that could prove helpful to others. The chart below depicts major medical milestones in my adult life. I’ve included major procedures, major treatments, and major hospital visits for exploratory testing to find diagnoses or second opinions.

From the time I was twenty-four years old (1995) until age forty (2011), I had nine major procedures, three major treatment plans (which involved lengthy out-patient administration at the hospital or training from specialists at the hospital), two visits to major health care centers where I spent a week meeting various doctors of different specialties and having further testing done: the first in Bangkok, Thailand, to see if I was a candidate for a stem cell transplant, and the other in the U.S. to confirm what my rheumatologist diagnosed in Hawaii. I had been to eleven different hospitals located in three different states and two in foreign countries. All of this in sixteen years.

From birth until age twenty-two (when I graduated from college with my bachelor’s degree), I spent a lot of time being sick. My parents can tell you I was always sick. Every holiday, every major vacation, every event…I would get sick. I had pneumonia too many times to count, mononucleosis with several recurrences according to my doctor. I was an expert at tonsillitis, bronchitis, and ear infections. My gastrointestinal (GI) tract was never very good. Eat anything with a tomato base after 6 p.m. and chances were very high I would be throwing up before midnight. I was not able to keep breast milk down at birth or the most common forms of baby formula. No, I needed to have a prescription for a special formula. As my sister has always said, “If there is going to be a health complication or a weird medical diagnosis, it will be my sister.” I wore braces for four years just to have my teeth go crooked again (which I discovered much later is a symptom of scleroderma; it happens when the jaw bone constricts); I had a severe case of dry sockets associated with my wisdom teeth being pulled out; during my hysterectomy I ended up with a hole in my bladder for which I had a catheter for three weeks while it healed. If it could happen as a potential risk or side effect to medication or a procedure, I would get it.

With all this being said, it is okay because through each experience I perfected my 5 S.T.E.P.S. and I know they work, not just for the patient but also for the patient’s team that patients choose to surround themselves with (loved ones, friends, family, and doctors).

Major Medical Events

	Date	Location

Treatment: Alternative Medication

1998–2003

University of Maryland Medical Center (MD)

Treatment: Methotrexate Injections (3 years)

2007–2010

Queens POB 3 (HI)

Major Procedure: Gall Bladder

1995

Harford Memorial (MD)

Major Procedure: Achilles Tendon Repair

1996

Union Memorial (MD)

Major Procedure: Achilles Tendon Repair

2002

Mercy Medical Center (MD)

Major Procedure: Uterine Cancer/Hysterectomy

2005

Kapiolani Hospital (HI)

Major Procedure: Meckel’s Divderticula and Cancerous Growth Removed

2006

Queen’s Medical Center (HI)

Exploratory/2nd Opinion: Diagnostics

2007

Mayo Clinic (AZ)

Treatment: Chemotherapy/Cytoxin and Rituxin (1 year, every 3 months)

2010

Kapiolani Hospital (HI)

Exploratory/2nd Opinion: Stem Cell Transplant Exploratory Option

2010

Bangkok, Thailand

Major Procedure: Autologous Stem Cell Transplant

2011

Anadolu Medical Center (Turkey)

Between 2009 and 2011, I was turned down by eight different studies/clinical trials being conducted in the U.S. that would have given me the same procedure as provided at Anadolu Medical Center.

And Now

When it is all added up, my life has been a medical mystery with a variety of diagnoses being handed down. In 2000, when I was diagnosed and underwent surgery for Chiari malformation, I started to feel better, and I really believed my medical issues would be over for a long time. What I didn’t expect was the need to continue to navigate the health care system, identifying and changing team players regularly, learning how to be patient, but also persevering when I needed to, and sustaining my mind and spirit throughout this journey into the medical world, a journey that turned into the most amazing, and sometimes terrifying, roller coaster rides.

When I was faced with making the decision to have a stem cell transplant, I was empowered by the many guides transplant centers make available online. My partner, Liz, and I learned how to navigate each stage of the transplant; we learned what to expect with common side effects; we researched information about the accreditation the hospital and transplant center should have, along with the credentials of the doctor who would lead the transplant team; and we made sure we knew how to communicate with my insurance company and the billing department at the hospital (Step 3). All of this is incredibly important information to have, so the question became one of who would be the advocate to speak for me when the decision was made and the time came for the transplant.

The problem for us was twofold. One, my insurance company would not pay for my life-saving transplant nor would the Food and Drug Administration (FDA) permit a qualified doctor in the United States to perform my transplant. Apparently, stem cell transplants are considered experimental for autoimmune diseases. Even though two separate doctors—one in Hawaii where I live and one on the mainland—agreed that I was a perfect candidate for it, I would not be considered for the procedure anywhere in the United States. Not even if I had a bucketful of cash to pay for it myself. As a result, I had to explore options for having the procedure somewhere outside of the United States, settling finally on Anadolu Medical Center near Istanbul, Turkey. (More about that later.) 

Two, I wanted to be my own patient advocate. Not to misunderstand, I needed my partner to advocate for me at various times, and I’m quite sure I wouldn’t be alive without my two patient advocates from WorldMed Assist and Anadolu Medical Center. The key is knowing that everything they did...