After Surviving Toxic Shock, Journalist Nan Robertson Takes a Firm Grip on Life
updated 12/13/1982 AT 01:00 AM EST
•originally published 12/13/1982 AT 01:00 AM EST
What were your first symptoms of toxic shock?
Immediately after finishing my Thanksgiving dinner, I just threw up the whole meal. I attributed it to fatigue and travel and the excitement at seeing my family. That night I slept on a pull-out bed in the den of my sister's house. I awakened in a kind of trance just before 3 in the morning. I found myself crawling and crashing up the staircase to the bathroom on the second floor. I could feel my arms and legs becoming paralyzed, and my vomiting and diarrhea were uncontrollable. I had made a mess as I went upstairs, and my instinct was to get to the bathtub to clean myself. I had never experienced such an incredible onslaught of illness. My brother-in-law and sister came into the bathroom and found me sitting there in my filthy nightgown, too weak to turn on the water. They carried me back to the den where I could hear them talking. My sister thought it was the 24-hour flu; she's had four children—but my brother-in-law was very alarmed. He said, "No, she has no pulse. It's serious."
Were you aware of what was going on?
I was disoriented and confused, but I could hear everything. The ambulance arrived, and they were starting to take me to Rockford Memorial, which is about a 15-minute drive across town and a Protestant hospital where my family's doctors practiced. At a nearby intersection, I could hear the medical attendant cry out to the driver, "Left! Left! Go to St. Anthony! She has no pulse, and if we go to Rockford Memorial she'll be DOA"—which, as any reporter knows, is dead on arrival. "If we go to St. Anthony, it's only three minutes, and she'll have a chance." By the time we reached this Roman Catholic hospital, my fingers and my feet were darkening with the initial stages of gangrene. Among other things, the toxic shock had shut off the vascular system, and when that happens, the extremities are the first things to go. The doctors began examining me, suspecting something like toxic shock but also considering food poisoning. By the time Dr. Thomas Root, who is an infectious diseases consultant at St. Anthony, saw me at 7:30, I had had four of the five classic symptoms of toxic shock—the vomiting, the diarrhea, plummeting blood pressure and a sunburn-like rash, which was beginning to stipple my body. He said immediately, "She has toxic shock syndrome. Let's get going." I later developed a fever of more than 102, the fifth symptom.
What was the treatment?
First they flushed the toxins, which of course are poisons, out of the body. I had lost about 10 quarts of fluid in diarrhea and vomiting, and in the first 24 hours they pumped in 24 quarts of fluid filled with antibiotics to fight the Staphylococcus aureus. A strain of this very common bacterium is what presumably causes toxic shock. I gained 40 pounds in 24 hours and blew up like a Michelin tire man. It was grotesque. My body was literally poisoned, and for two days I slipped into a coma. In all, I was in intensive care for almost three weeks and had 14 doctors treating me—cardiologists, lung specialists, dermatologists, internists, almost every kind of specialist you can imagine. Although my thumbs were spared, my other eight fingers turned black, and they thought they would have to amputate the right leg and the toes of the left foot.
How did they save you?
They began a procedure called "mobilization," which meant moving and manipulating the joints of my fingers to enable the circulation to return. The gangrene had turned into black, hard sheaths on the fingers, and the doctors, with great pain to me, would peel this dry gangrene away to the healthy flesh underneath. They used all kinds of splints and braces and exercises to make my feet and legs come back. As soon as I was well enough to stand it, they had me walking in orthopedic shoes with iron braces up to the knees. But they could not save the end joints of my fingers.
How did you handle all this emotionally?
For almost three weeks I was on a respirator so I could breathe but not speak. As soon as they took me off the respirator, I felt this enormous rage that I had been struck down. I reviled the doctors and nurses. I told my sister repeatedly to go home. I was demanding and angry and profane. I really thought that I was going back to New York a mutilated object, and I didn't think anybody would love me anymore.
Did your outlook change?
Yes. After 10 days, I became more like myself. I said, "You have everything to live for," and I really began to fight for my life. This very anger helped me to survive. I still felt fear. I felt terrible dread of the amputation of my fingers and of what my hands would look like. But I also felt joy that I was alive. I swore that if I had to type with my teeth or my toes, that I would work again and write again and that I wouldn't be an invalid.
Was the amputation as bad as you feared?
It was terrifying. When I woke up after the surgery on Jan. 14, my hands were suspended from two poles and wrapped like boxing gloves with the healthy thumbs sticking out. When they came to remove the bandages two days later, I turned my head aside. I thought my hands were going to be awful-looking. Finally I held them up, looked at them and rotated them back and forth. The tips were very red and covered with black surgical stitches, but I said to the doctors—with a smile—"I can live with this." The fingers were enormously sensitive, though, and 10 days later, when I finally returned to New York and entered the Rusk Institute, the stitches were still in my hands.
Was this stage painful?
There seemed no way the doctors could take the stitches out without pain. They tried Demerol, everything. Then Dr. Barry Zide, a young plastic surgeon who later did a second and third operation on my hands in New York, was able to throw a nerve block on my wrists—which blocked sensation to my fingers—and was able to remove the stitches painlessly a week after I got back. The two subsequent operations last spring not only made the hands look much better, but he put little pads of skin at the ends of my fingers so that I would be able to touch without pain. Before that, I couldn't wear my old winter coat; I couldn't get my hands through the narrow sleeves without pain.
How was it when you got home?
On Feb. 12, Lincoln's Birthday, I was discharged from Rusk and brought by friends to my apartment, which I had not seen for 11 weeks. I found I was helpless. My hands were stiffened and traumatized; I couldn't turn a knob or a faucet or dress myself. I couldn't wash myself or even wipe myself after I went to the bathroom. I couldn't do anything. I had a nurse's aide during the day for about six weeks, and I got a half dozen of my women friends to rotate every night, fixing me dinner, undressing me and putting me to bed. I also had outpatient therapy at Rusk every day. One of the devices they used is a wrist brace with little leather nooses to go over the fingers. The nooses are attached to rubber bands which, little by little, are shortened, pulling the hand into a fist. It's like a rubber band retainer on a teenager's teeth, and the process goes about as slowly. I kept a diary, and on Feb. 26 I was finally able to tie a bow.
How are your hands now?
My therapy sessions are down to three a week, but my hands are sore and stiff when I get up every morning, and I have to do a whole bunch of exercises. I can take notes almost as quickly as I used to, but I still can't type at my old speed. For one thing, my fingers are about an inch shorter, and the intervals on the keyboard are different. I try to use all the fingers, but sometimes my thoughts rush ahead of my hands, and I find myself poking with my thumbs. But my life is very normal. I can live independently and alone.
What caused your toxic shock?
In my case, it was not tampons. I had not menstruated for over 11 years. Doctors believe what happened was that there was a tiny sore on my vaginal wall. The bacterium, which was probably on my skin, made its way to the vagina, fastened on this tiny sore, grew there and sent out these toxins into my body. Something that simple.
What do medical researchers find in most cases of toxic shock?
In the great majority of cases, the link between tampons and toxic shock syndrome is as convincing to me as between cigarettes and lung cancer. The larger and more absorbent the tampon, the higher the risk. A tampon-wearing woman is much more at risk than a non-tampon wearer, and a woman using high-absorbents appears to be at an even greater risk.
Will your life ever be the same?
Some part of me has been taken away and can never be given back. I have been through terrible pain, and I feel stronger than I was before and also more vulnerable. I have always believed in seizing the moment, in living today, and this has been enormously sharpened in me. I don't know what my life will bring, but I'm a walking miracle, and I realize it. I have not only survived; I have prevailed!