A Determined Doctor, Both Healer and Patient, Wages a Lifelong Struggle Against Cystic Fibrosis
updated 09/24/1990 AT 01:00 AM EDT
•originally published 09/24/1990 AT 01:00 AM EDT
A hereditary illness afflicting about 30,000 Americans, CF causes severe lung and digestive problems. Among other symptoms, it produces thicker-than-normal mucus, which causes recurring infections and ultimately destroys the lungs. When Doctor Jacoby was first diagnosed with CF at the age of 3, children with the disease rarely lived beyond 5. Today, through improved treatment, more than half are expected to survive beyond their mid-20s, and a few CF patients already have lived into their 40s and 50s. Now there is hope for a cure. Last year, scientists isolated the gene that causes CF and hope to develop new genetic and drug therapies as a result of their constantly increasing knowledge.
At his New York apartment, Doctor Jacoby discussed his unique life as patient and healer with Chicago bureau chief Giovanna Breu.
For the longest time, I didn't know what cystic fibrosis was. I had it and so did my sister, Jamie, and my brother, Jeff, but our parents never told us the name of the disease. They were probably afraid we'd find out that cystic fibrosis was, at the time, a fatal disease. They knew it was like a time bomb waiting to go off.
As kids growing up in Colts Neck, N.J., we were all fed pancreatic enzymes in our applesauce to help us digest our food. Every few months we'd go to Columbia Presbyterian Medical Center in New York City for tests or treatment. It would be very scary. I was a fairly normal baby, but Jamie had problems from the start. She coughed, had diarrhea and didn't gain weight. Although she was sicker than I, we were always told that she'd get better. But one day when she was 6, she was rushed to the hospital for surgery to correct a serious liver complication. After she came home, her lungs gradually began getting worse, and she couldn't go to school. She started having chest physical therapy in which the chest is pounded to loosen the mucus, much like you pound a ketchup bottle to make the ketchup flow. She took antibiotics and slept in a mist tent, a now-obsolete device that supposedly helped loosen the secretions. Despite such efforts, she died of severe pneumonia when she was 9.
I was not only upset about my sister, I was also beginning to fear for myself. I had already started chest therapy too, and a month after her death, my parents transferred the mist tent to my room. Still I wanted more information. What was wrong? Wasn't there a name for what we all had? Finally when I was 13, my father told me. I looked CF up in the encyclopedia, and when I saw the horrible mortality statistics, I played this stupid trick on my mind: I told myself I didn't know what mortality meant. It was my way of delaying knowledge of the truth.
My parents lived for us. My father was an electrical engineer who refused a career transfer because he thought we would get the best medical help living close to New York. They were both protective but encouraged us to do everything that other kids did. I hated sports, but I was very interested in science and nature. We lived in a rural community, and I loved catching toads and snakes. I was going to be a vet.
One morning when I was 14, I woke up vomiting blood. Now/was rushed to the hospital, and they started coming at me with tubes and an IV. The frightening news was that I had to have the same surgery as Jamie. After I came through it, I became fascinated by what had happened and by hospital life. I decided that instead of becoming a vet, I'd be a physician.
At 16, I asked my doctor, "I need to know how long I'm going to live, because I don't want to waste my parents' money going to college."
"There's no way to really tell," the doctor responded. "And there's no reason to suspect that you can't become a doctor. Just assume you're going to make it."
So I applied to college. I was accepted at both Duke and Princeton. My mother wanted Princeton because she could come over and do my laundry. That was the clincher. I needed to get away from home and prove myself. So it was Duke.
I loved the place. There was a physical-therapy department where I'd go every day for my chest therapy. The first semester I took a reduced class load, and after that, a full load. I was a chemistry major, but a religion course has meant more to me than anything else. I've found that a very strong foundation in my faith is that you have to trust God. To just get through each day, it's so important to believe that somebody is watching out for you.
There was a lot of concern that medical school would be dangerous to my health, and a number of schools turned me down. Finally I told the interviewer at Northwestern University that sometimes it's worth risking your life to do something worthwhile. If I succeeded, it would create a lot of hope for patients with CF. Fortunately, Northwestern accepted me. Medical school was fun but also very hard. Not only did I have classes and studying, but every morning and evening I'd go for physical therapy. Sometimes I'd come in at 4:30 A.M. for treatment, then I'd do rounds. At one point in my fourth year, I thought, "What am I doing?" I felt I was going to exhaust myself and die. My professors suggested a less demanding, non-patient-care specialty, but I just couldn't see myself not treating patients. One of my doctors advised a reduced schedule, and I was perfectly willing to work for less money and maybe train for more years.
That was the arrangement I had when I started at St. Vincent's Hospital in New York. Psychologically it was tough at first. Except for Jamie, I'd never really seen or confronted death up close, and I was profoundly feeling my own weakness. But over the years I've decided that life doesn't end with death; it may be just a preamble to a greater adventure.
Frankly, I thought I was going to die a long time ago, but I'm still here, and I'm now an attending physician treating patients with CF or other pediatric pulmonary diseases. I take a lot of time with each patient. I believe there's a need for the personal touch. I'm happy that my brother Jeff, who's 27 and receives the same medical treatment I do, works as a night nurse on the CF unit. I live next door to the hospital, so it's easy for me to come in when there are problems; it shows the kids that I'm concerned. The fact that I have CF seems to give me a closer rapport with all my patients, and the little kids smile when they see me getting the same chest therapy they are getting.
I do rest briefly at midday. After work I'm so tired that I like to just go home and listen to music or watch a movie. That's probably why I haven't gotten married—dating requires a lot of effort. I never went out much, and although I started seeing someone in med school, I found it difficult to become involved. I don't mind physical therapists seeing me cough and hack away, but asking somebody special to do that makes me uncomfortable. Maybe I'm afraid of commitment, or maybe I'm afraid to share my disease with somebody. I believe a relationship will happen when it's meant to. Meanwhile I'm married to my job. My parents are obviously very proud of both Jeff and me, and they don't worry so much about us.
The truth is, I love what I'm doing. This is my mission in life. I believe in a sort of destiny—there are certain things you were meant to do. I don't know why one person lives longer than another. But you have to live life as it's given to you and make the best of it. I just count every day that I am able to work here as a gift.