Pittsburgh's Mayor Finds Himself in a New Kind of Race—Against Time and An Incurable Illness
updated 02/29/1988 AT 01:00 AM EST
•originally published 02/29/1988 AT 01:00 AM EST
Then, in a press conference last October, Caliguiri stunned his constituents when he disclosed that he was suffering from primary amyloidosis, a rare, noncontagious disease in which, explained his doctors, "the body produces and deposits excess supplies of a protein called amyloid in vital organs such as the heart, intestines, skin or kidneys. These deposits can interfere with organ function." The disease is of unknown origin and is considered incurable; it is always fatal, although victims have been known to survive as long as 13 years after the diagnosis. When he made the announcement, Caliguiri admitted he had known of his condition for seven months but had confided only in his wife, Jeanne, 46, and sons Gregg, 18, and David, 15. "When you've been healthy all your life and suddenly are confronted with serious illness," he said, "it is sometimes difficult to come to grips with it personally, not to mention publicly."
Unlike most cases of amyloidosis—and there are an estimated 5,000 currently in the U.S.—Caliguiri's was correctly diagnosed relatively early and is being controlled with medication. He is able to fulfill his duties, although he carefully paces himself. His decision to continue in office has received virtually unanimous bipartisan support. Caliguiri spoke about his illness with correspondent Jane Beckwith.
It started in the winter of 1986. One Sunday I walked to the corner store for a paper and became very short of breath. I thought maybe it was my heart because my mother died of congenital heart failure. I called my internist, who sent me for a stress test, but everything checked out perfectly.
Over the next six months I had periods of fatigue and dizziness. When I worked out on the Nordictrack exerciser Jeanne had given me as a gift, I couldn't do as much as I thought I'd be able to. That puzzled me. But there was no major problem until last March, when I was playing golf and hit a ball off the fairway. I went downhill to retrieve the ball, and when I started to climb to return, I became very lightheaded and began seeing a million bright white spots in front of my eyes. My friends saw I was having trouble and helped me to the clubhouse. They called the paramedics, who did a cardiogram right there. Again, everything checked out fine.
When I got home I called my internist again, and the following week I went into the hospital. They did a whole lot of tests, including biopsies of my bone and bowel, which are the tests for amyloidosis. Three days later the results came back positive.
When the doctors told me what I had, my first reaction was "What's that?" They gave me the available literature on it, which wasn't much. They said it was a rare, incurable and fatal disease, with the majority of patients having a survival period of less than two years. There was no avoiding the fact that I was probably going to die sooner than I had ever imagined.
Learning the finality of what I had was a real blow. It took me about two weeks to overcome my initial shock and worry. I still have occasional periods of fear and emotion. My doctor and Jeanne encouraged me to contact Dr. Robert Kyle at the Mayo Clinic, who is an expert on this disease. I now see him twice a year for checkups.
The hardest thing when you are in public life is keeping something like this secret, but I wanted to find out the extent of my problem before going public. We told our sons, but I couldn't tell my closest friends what was wrong out of fear that word would leak out. For six months I had to sneak into Shadyside Hospital and the Mayo Clinic for tests. Meanwhile, of course, the press was at work finding out all they could. Finally I heard that one of the local papers had discovered the truth. By then I knew enough about my condition to know that I could continue on the job. So I held a press conference and let the chips fall where they might.
Going public was a great relief. Now that everyone knows about my illness, I feel more relaxed. I've been most impressed by the overwhelming concern of people not only from Pittsburgh but from around the country. It's been heartwarming and has given me more strength than I think I have ever had.
Weight loss is my most persistent problem. Because of intestinal discomfort from the medication, I force myself to eat things like soup, pasta and fluids that digest easily. I'm 57", and I always tried to keep around 140 lbs. and keep a paunch off, so any drop in weight shows up pretty quickly. After my news conference, people began sending me all kinds of food gifts. I had joked that I didn't want anything with less than 500 calories, so I've been getting cookies and cakes, pastas and pirogi. Even my son Gregg calls me from college to remind me to eat, and David is always putting food in front of me. Other people tell me to go to health farms or send me home remedies and suggestions about unusual foods, like honey direct from the hive and freeze-dried vegetable juice. But if I were to do or eat everything people tell me to, I don't know what I would turn into.
Since there is no cure yet for amyloidosis, I have to rely on medication to slow it down. Currently I'm taking Alkeran, which I'm on for one week then off for six weeks. It's very strong stuff, and the side effects—nausea, gastric distress, constipation—are unpleasant, to say the least. I'm also on ulcer medication for the intestinal irritation, and Jeanne makes me stewed prunes, all of which help. You just have to accept the side effects as part of the cure. I try to get in a good frame of mind before I start each round, and I try to minimize the impact by thinking that perhaps the discomfort is a sign that the medication is doing its job.
Every six months I go to the Mayo Clinic for a complete checkup to see if the disease is progressing. They do blood and urine analyses, but the main test is a sonar, which measures the configuration of the heart and looks for problems there. Right now the doctors say I'm stable.
Physicians still have questions about the disease, which is so unusual that most doctors will never see a case in a lifetime of practice. Most of the letters I receive are from people who thought they were the only ones with amyloidosis. I've learned that having a rare disease can be so isolating. Friends and family have comforting words and offers of prayers, but it's not like heart disease or cancer, where everyone knows somebody who has had it. Many people just don't know what to say to me.
Ironically, shortly after I was diagnosed, my friend Lou Tullio, the Mayor of Erie, Pa., also was told that he had amyloidosis. We had been in Philadelphia together last September, campaigning for Mayor Wilson Goode. We were walking from our hotel to the Mayor's office, and Lou became so dizzy and fatigued he couldn't continue. I hadn't yet made my disease public, so I did not discuss my diagnosis with him, but I did suspect from his symptoms that he had it. Of course we've talked many times since then, and we encourage one another. But there is just so much we can draw from each other's experiences because the progress of the disease is very individualized. Medical experts say it's an inexplicable coincidence.
My doctors tell me that I must watch out for dizzy spells, which could indicate a flare-up. I know not to exert myself. So far my illness hasn't interfered with my work. I'm not as obsessive about the administrative minutiae as I once was, but I'm still responsible for the job overall, and I plan on attending as many functions as I can. What I don't want is for people to become so concerned about me that they stop inviting me. I want them to ask Dick Caliguiri to the Little League banquets and all the rest. If there comes a time I can't fulfill my duties as mayor, I'll be the first one to pull back.
I know people are wondering if I'll run in 1989. Some people have indicated that if I run, they won't run against me; others don't say. Ultimately, of course, they will have to make their own decision, just as I will toward the end of this year. Right now I feel good enough to run, and I am assuming that the disease will stay dormant.
When people get sick like this and ask, "Why me?" that suggests that maybe it should be somebody else. I say, "Why not me?" Obviously I would like to be in good health, but allowing "Why me?" thoughts to persist throughout your illness is a terrible thing to do to yourself. After all, there are people who are incapacitated by a disease, and I am not.
Sure, this does make you realize that there is an end to your life. But I look around this city and see some very young people, little ones like Tabatha Foster who had the multiple organ transplants. Here's a little tyke just trying so hard to start her life. I feel like I have been given a wonderful chance. God has left me here for 56 years now. In the past, I guess, I wondered on hearing about a person diagnosed with a terminal illness, "How would I feel?" Now I know. I feel that I am here now, able to make things happen. I feel I still have the opportunity of life.