2 You and Your Doctors

The Devastation of the Diagnosis

My name is Jo-Von Tucker. In 1989, at the relatively young age of 52, I heard the doctor trying to explain to me that I was very sick. I was diagnosed with chronic obstructive pulmonary disease (COPD). I didn't know what it was, what it meant, or just how sick I was.

A case of pneumonia that I came down with while on vacation on St. Maarten, and that preceded the diagnosis of COPD, led me to see my internist, and later, a pulmonary specialist. It was not my first case of pneumonia, and I had a much more difficult time getting over this one. After three changes of antibiotics, and nearly four months, I had recovered enough to start a battery of tests to determine the extent of damage to my lungs. But I still felt tired, weak and had a lot of chest pain and a persistent cough.

I had flown from New York, where I lived, to Denver, Colorado to get a second opinion at the National Jewish Medical and Research Center (NJMRC). All of my records and computed tomography images ( CAT scans) had been forwarded from a pulmonary specialist in New York (who had never mentioned chronic obstructive lung disease to me, although she had expressed an opinion that I might have lung cancer and/or pulmonary fibrosis).

In less than a week, the hospital in Denver accomplished more than had been done in New York in eight weeks. The original tests were all repeated, plus they added quite a few of their own. I had chosen to seek the work-up and second-opinion at National Jewish after much research, both through my pulmonologist in New York and on my own. I had sought information on those hospitals rated the highest in research and diagnostic procedures in lung disorders, as well as for prominence in their treatment programs. NJMRC had come out at the top of the list. My experiences there validate their reputation as one of the best pulmonary facilities in the country.

The doctor I was to see in Denver had ordered supplemental oxygen for me as soon as I arrived at the airport. This was partly because of the readings of a battery of pulmonary function tests in New York, and partly because of the altitude of Denver, the "mile high city." Being put on oxygen was scary.

I had been directed to Dr. Talmadge King because the diagnosis in New York included the possibility of pulmonary fibrosis (and/or lung cancer), as well as emphysema. The doctor in New York had indicated the need to do open-chest, very invasive, lung surgery to ascertain my diagnosis. I had insisted on a second opinion at a facility with an excellent reputation in lung work. Thus the referral to National Jewish Medical Research Center.

Completely alone in a strange city, on oxygen, amid the frightening surroundings of a hospital, with the incredible stress of not knowing exactly what was wrong with me, I was taken in hand by Dr. King's nurse and assistant, who soothed my fears with great caring and concern. Her compassion helped me to maintain some semblance of composure. Dr. King explained all of the tests and their objectives. The nurse went over the schedule so that I'd know what to expect.

I don't remember very much about the last session with Dr. King, when he shared the results of the testing and gave me the diagnosis and prognosis. Dr. King was then Director of the Cohen Clinic at NJMRC, and not a part of the unit primarily responsible for diagnosis and treatment of COPD. He was very kind and gentle as he explained what COPD was, and what it meant to me as a patient.

The two-hour session went by in a blur. I believe I was in a state of shock on that last day at the hospital. What I vividly recall is finding myself back in my Denver suite, with no notion of how I got there, crying so hard that I must have alarmed the neighbors. Actually I think "wailing" is a more appropriate word. I had never cried so hard, sobs wrenching my whole body in spasms of grief and fear.

I had just been ever-so-gently told that the prognosis for my life was probably less than five years.

My Reaction to the Diagnosis

My first reaction to the diagnosis was flight. I wanted to run away from everything, from everyone, especially from the truth about my illness. Even though I knew, deep in my soul, that I was very sick, I kept hoping that they were all wrong.

The pulmonary staff at NJMRC wanted me to stay for two weeks of rehabilitation training, but I made a mistake. In my grief and fear, I bolted for home. I caught the next flight back to New York, and holed up in my apartment like a wounded bear. For days I railed against the world, against God, against my body that had betrayed me.

Somehow I made arrangements for oxygen equipment and liquid oxygen, having been told by Dr. King that I would need supplemental oxygen 24 hours a day for the rest of my life. I contacted a home health care company, provided the prescription and paperwork they requested, and set about learning to use it in between bouts of serious depression. I didn't emerge from my apartment for days. I ordered food from the local market, or just ordered in. I left strict instructions with my office that I was not to be disturbed, by anyone, for any reason.

For me, this was bizarre behavior. I was a successful consultant in direct marketing, had my own business that I had moved from Dallas, Texas to New York City a few years before. I had traveled all over the world, and was active and involved. I gave speeches and conducted seminars on catalog marketing in London, Copenhagen, Tokyo, Dublin and Paris. I was named Direct Marketing Woman of the Year just six months before I was diagnosed with COPD. I consulted for companies such as Neiman Marcus, L.L. Bean, Walt Disney and many others. Much of my catalog consulting was in France and Ireland, so it was normal for me to walk around with my passport in my briefcase. I've flown by Concorde a dozen times or more.

My idea of a great vacation was riding elephants through the jungles of Nepal or bouncing along in a pop-top van over the plains of East Africa on a photographic safari. I've been hot-air-ballooning over Australia, and white-water-rafting over Level 7 rapids in the Himalayas. I swam with manta rays in Bora Bora, and played blackjack all night in Monte Carlo. And I've spent countless hours walking the riverbanks in Connemara, the rugged and uniquely lovely west coast of Ireland, my favorite spot in all the world.

Obviously, I do not possess a retiring personality. So the fact that I hid in my apartment for days on end gives a pretty good idea of my state of mind. This was the self-imposed isolation that most people with COPD go through. I felt my life begin to slip away. I now had a chronic illness, and would be disabled for the rest of my life. What I needed to hear most was encouragement, that I didn't have to face this alone. Support systems, including pulmonology and rehabilitation professionals, support groups, and other health-care systems could help me. But I reacted to the diagnosis the way most patients do. I isolated myself.

I truly thought that I was in the process of dying.

Stages of Acceptance

I now know that almost everyone who has been diagnosed with chronic illness goes through nine stages of acceptance or denial, action or inaction, related to the illness. You must deal with each stage individually, as each is the lead-in to the next stage toward acceptance. None can be skipped if the healing process is to build a foundation of strength. Those stages are:

  1. Grief
  2. Denial
  3. Rage
  4. Self pity
  5. Depression
  6. Fear
  7. Frustration
  8. Resignation and acceptance
  9. Finally you will choose life over death.

Education is the key to survival. Learn everything there is to know about COPD and associated illnesses so you can move toward peace, and a quality of life that can be sustained. This will let you manage the illness, rather than it managing you.

NOTE: This is only an extract from the chapter...
. . . .
COPD-Courage and Information
Courage and Information Readers praise | A book to help you help yourself | Foreword by Brian L. Tiep, MD | Foreword by Thomas L. Petty MD | Introduction | Table of Contents | The Devastation of the Diagnosis (Jo-Von Tucker) | Appreciation of Jo-Von Tucker | Feature story | Courage: Authors | BUY Courage and Information | Seeing the story

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