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The Charlotte Observer: Online Edition Posted on Wed, Mar. 20, 2002 Deep Inside Deborah's Brain: Last of Four Parts 2nd setback, almost out of fight KAREN GARLOCH Staff Writer What else would go wrong? Deborah Setzer wondered. She had felt so much better after Dec. 21. The brain surgery to treat her Parkinson's symptoms had worked. For three weeks, she was nearly pain-free. She had walked without a cane, stayed up past 6, and felt almost normal. But then, in early January, she got a staph infection. It could have killed her. The neurosurgeon had to remove the implanted electrodes and stimulator that had worked so well to relieve her pain and stiffness. Now she had this rash. Was it an allergic reaction to one of the drugs? She was taking more than 40 pills a day. Over the next few days, tests showed Deborah was probably having a reaction to Dilantin, one of the drugs she was taking to prevent seizures. On doctors' orders, she stopped taking it as well as the antibiotics she had been taking since the infection. But the rash and fever got worse. On Monday morning, Feb. 4, Robert packed Deborah in the car and drove to Wake Forest University Baptist Medical Center. They showed up at 8 a.m., without an appointment. Dr. Stephen Tatter, the neurosurgeon, was busy, so they saw the nurse practitioner. They also saw a dermatologist and an infectious disease specialist. They went home with a topical cortisone cream and a prescription for an antihistamine. Robert drove home to Charlotte in a fury. He didn't think they were taking his wife's problem seriously. "I think they're trying to kill her," said Robert, talking on his cell phone. "She's been running a temperature for nine days." In Charlotte hospital Later that day, Deborah's fever got worse. Robert called back to Wake Forest. The nurse practitioner said Deborah should try Tylenol or ibuprofen and a lukewarm bath, standard treatments for fever.When that didn't work, Robert called his family doctor, who told him to take her to the hospital. Deborah's fever was the highest it had been, 104.8. A bright pink rash covered her face, chest, arms, abdomen and legs. Her skin was bumpy and hot to the touch. Sores in her mouth and throat made it impossible to eat. That evening, as she lay in bed at Carolinas Medical Center-Mercy, she pulled the blankets to her chin and still shivered. Normally, she would have lightened the mood with some wisecrack. But she had no strength for jokes. "I don't know if I'm gonna make it," she told a visitor in her darkened room. "I've got less and less energy to fight." She had planned to have the deep brain stimulation again, once her infection was gone. But that night, she changed her mind. "I'm not sure I'm willing to take the risk again," she said. "I never thought I'd say that." Over the next few days, doctors and nurses watched Deborah closely. When Tatter learned that she'd been admitted to the Charlotte hospital, he felt bad. He thought they had done all the tests needed to rule out anything besides a Dilantin reaction. And he knew that would get better on its own. Looking back, he wished they had kept her at the Wake Forest hospital. He wished he had seen her himself. The Charlotte doctors worried that Deborah might have Stevens-Johnson syndrome, a severe allergic reaction to medicine. Patients with Stevens- Johnson are often treated in burn units; their skin blisters and falls off. They can die. By Wednesday, Deborah's face was swollen. Her eyes were like slits in a puffy round balloon. A splotchy, lacelike rash covered her body. It looked like a monster case of poison ivy. A thin crust formed on her ear lobes, lips and chin. Sores in her mouth made her mumble as if her tongue was stuck. His wife, barely recognizable Deborah's illness was taking its toll in other ways. She and Robert were fighting. His questions and his mere presence annoyed her. She told him to leave her alone. She was glad when he went home for a shower and a change of clothes. When he returned, she sometimes pretended to be asleep. Robert barely recognized her. She looked so awful, and she was so mean. It wasn't like her. He wanted to ease her pain. He worried she might die. He was angry about her care. Sometimes he just cried. He also worried about money. They had so many unpaid bills. The water was turned off one day. He was still out of work but pursuing jobs in California, where he worked before they married. He flew out for an interview and got an offer. Deborah told him to put her in a nursing home and go. "I'm not leaving you," he said. "You have got to get well." On Friday evening, Feb. 8, Deborah's dermatologist, Dr. Elizabeth Rostan, brought good news. She said Deborah didn't have Stevens-Johnson syndrome after all. It was a reaction to Dilantin, and the rash would get better. Robert showed the doctor a picture of Deborah. It was taken in December, outside the Belmont beauty shop before Deborah had her hair cut for surgery. She was smiling and beautiful. "Oh, she'll look like that again," the doctor said. "I'd better look better after not eating all week," Deborah said. Robert was relieved to see her sense of humor. "I get my wife back," he practically shouted. But Deborah didn't share his joy. "I've had enough," she said one day. "I'm just worn out." A report to Tenacity's pals On Valentine's Day, a day when so many lovers are happy, Robert wrote a worried update about "Tenacity" to the online Parkinson's support group:"She is in a state of deep depression right now ... She just lies in bed with the blinds closed, lights off and door closed. She won't even answer the phone at times. ... They can't give her any medicine at this time for her depression for they worry that it will start the allergic reaction over again ... Please say an extra prayer for her ... she must get well, I am so very worried for her." He took Deborah presents -- flowers, a card and a pair of red silk pajamas -- but she didn't seem to care. He sat with her and asked if there was anything he could do. To his surprise, she said she wanted spaghetti. Would he get some? They ate their spaghetti dinners together in the hospital, and when they were finished, Robert said, "Boy, I tell you what. I sure would like to cuddle up next to you." Deborah smiled and scooted over in the narrow bed. He crawled in and just held her. About an hour later, one of the doctors came by. Robert was embarrassed. Deborah just giggled. Wig and makeup do wonders The next day, she went home. Over the next two weeks, she gained strength. She and Robert talked and teased. She couldn't remember why they had argued. She had been too sick. Robert knew the job offer in California wouldn't wait forever. They talked about moving. They had lived on her disability checks since December. On Feb. 27, when she saw Dr. Ronald Demas, her neurologist, for a checkup, Deborah wore a wig Robert had given her before surgery. With lipstick and makeup, she looked better than the doctor had expected. "Right now, I could never guess you had Parkinson's disease," Demas said. But Deborah was still tired and frustrated. She was still running a low-grade fever. She needed a cane again. In the exam room, she leaned over and rested her head on a table. She had spent 12 days in the hospital in February in a fog of fever, pain and drugs. "When am I gonna start feeling better?" she asked, starting to cry. Demas said it was hard to know. "A year from now, this will all be history," he said. "Like a bad dream, I hope." But, even when the infections and drug reaction passed, she'd still have Parkinson's disease. And without deep brain stimulation, some of her symptoms had returned. She was thinking about another implant. "Think anybody would do it on me again?" Demas shook his head. "I just don't think anybody would stick their neck out again. I could be wrong." "Ha!" Deborah thought. She had heard "no" before, and it only made her more determined. When they left the office, Deborah told Robert she wanted the surgery. She wanted to be able to move without pain. And she wanted to be an example for other Parkinson's patients. She wanted to travel and talk to people and raise money to help other Parkies. Robert said OK. They would call Tatter at Wake Forest. When the doctor called back, they talked more than an hour. They went over what had happened. Tatter told Robert that he and his colleagues felt they had taken Deborah's problems seriously. That's why they did the tests and took her off the medicines. His only regret was that they didn't keep her in the hospital that Monday. Robert's hard feelings disappeared. He had always called Tatter their "angel of mercy." Maybe he would be again. Deborah watched and listened as Robert paced nervously. Finally, Robert came to the main reason he'd called. "Would you do the surgery again?" Tatter was surprised Deborah would want it now. But if anyone understood the risks and the benefits, she did. Yes, he said. He would do it when Deborah was healthy. Robert gave Deborah a thumbs-up. Her eyes glistened with tears. Later, at her computer, she wrote a long note to other Parkies. She described the whole ordeal, down to her plans to have the surgery again. "I am 40 years old, I am not ready to stop my life because of PD. The surgery worked, I was better and I will be again. I have a memory to hang on to and something to look forward to as well ... dancing with my husband again." She signed it: Tenacity Wins. SOURCE: The Charlotte Observer http://www.charlotte.com/mld/observer/news/2895756.htm The Sunday Charlotte Observer (Mar. 17, 2002) started a Four Part Series on Deep Brain Stimulation. The Complete Special Package is now available at: http://www.charlotte.com/mld/charlotte/news/special_packages/deep_inside_deborahs_brain/ Part 1/4: Deep Inside Deborah's Brain: http://www.charlotte.com/mld/charlotte/news/special_packages/deep_inside_deborahs_brain/2876779.htm Part 2/4: Deep Inside Deborah's Brain: Ready For Surgery (Check out the 10 Slides!) http://www.charlotte.com/mld/charlotte/news/special_packages/deep_inside_deborahs_brain/2882714.htm Part 3/4: Deep Inside Deborah's Brain: Infection Threatens Deborah's Life http://www.charlotte.com/mld/charlotte/news/special_packages/deep_inside_deborahs_brain/2888845.htm Part 4/4: Deep Inside Deborah's Brain: http://www.charlotte.com/mld/observer/news/2895756.htm http://www.charlotte.com/mld/charlotte/news/special_packages/deep_inside_deborahs_brain/2895756.htm This is a very detailed personal story designed to increase Parkinson's Awareness. Thank Deb at: Deborah Henderson-Setzer <[log in to unmask]> (support her, but please don't try to sell her something) If you're impressed with the job that the Observer and Karen Garlock have done... You may wish to offer them a little positive feedback as well.. Main number: (704) 358-5530 General feedback: [log in to unmask] Karen Garloch Karen Garloch writes on Health for The Charlotte Observer. Her column appears each Monday. You can reach her at (704) 358- 5078 or e-mail [log in to unmask] cheers ...... murray * * * ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn