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Mr. Bowman's solution.

MR. BOWMAN'S SOLUTION

Helga Bowman was 60 when her life when into a tailspin. Within one week of March 1982 she learned of cancer in her right breast and emphysema in both lungs.

On March 12 she consulted a surgeon for a breast lump. Suspicious immediately, Dr. Spivey explained it could be cancerous and that she might need a mastectomy. He biopsied the lump with a thin needle, removing just a few cells for microscopic examination. The next day, March 13, Dr. Spivey received a verbal pathology report: malignancy. He promptly called Mrs. Bowman, told her the diagnosis, and scheduled a mastectomy for March 16. Because of her long smoking history he also ordered pulmonary function tests and asked her to see me.

Mrs. Bowman came to my office on March 14. A middle-aged, kindly appearing woman with a big smile, she displayed all the telltale signs of emphysema: raised shoulders; slightly pursed lips; slow gait; and contraction of neck muscles with each breath. Most emphysema patients are thin and she was no exception, weighing 110 pounds and standing five-foot-two. She wore a plain cotton dress and little makeup, and kept her brown hair brushed straight back.

Any complaints? "I feel fine," she said, "like always. Just this lump I noticed last week," and pointed to her right breast.

"How long have you been smoking, Mrs. Bowman?"

"I started when I was about 17. Forty-some years I guess."

"How much? Would you say about a pack a day?"

"Yes, no more than that. But it never caused me any problems."

As she undressed for the exam I could see she was limited and less agile than other middle-aged women with normal lungs. Her pattern of speech, an occasional pause to catch her breath, confirmed my visual assessment. She would look quite healthy in a family snapshot but not on videotape.

So insidiously had emphysema developed that Mrs. Bowman considered her shortness of breath on exertion and chronic morning cough normal. "I thought that just happened when you get older," she explained. Lung capacity less than 50% of normal indicates marked breathing impairment; her capacity was only 42%. This measurement, plus the chest x-ray and my examination, confirmed severe emphysema. Lung disease of this degree doesn't preclude breast surgery but does make one more cautious. Our concern is the general anesthesia, which can cause problems for patients with respiratory impairment. I insisted that Mrs. Bowman quit smoking right away, and also prescribed inhalation treatments and corticosteroids for the two remaining days before surgery.

She took the bad news and my recommendations surprisingly well. There was no denial, self-pity, or remorse sometimes seen in cancer patients. Just the opposite. The thing I remember most from her days before surgery was how nondepressed she seemed. Friendly and outgoing, she was the type of person who found something good in every situation.

On my visit to her hospital room the night before surgery I met Mr. Bowman, a 62-year-old retired fireman. Like his wife, he was outgoing and affable. A short, thin man, he had the parched and wrinkled skin of an outdoorsman. Fishing was his passion.

"I've spent most of my life outdoors," he said.

"What do you catch around here?" I asked him.

"Walleye. The lake's got tons of walleye this time of year. Just caught several last week."

We bantered a few minutes about the hazards of lake fishing, and then I changed the subject to his wife's operation. I went over the risks of surgery once again and asked if they had any questions.

"No," they replied, with Mrs. Bowman adding, "We have faith in you and Dr. Spivey." Mr. Bowman nodded his agreement and that was that.

"By the way, you did quit smoking, didn't you?"

"Oh, yes," she said. "I'll never go back to cigarettes."

The way she had accepted my no-smoking advice was a good sign. If there was anything to do or take that might help her, she would comply.

On March 16 Mrs. Bowman underwent a modified right radical mastectomy. The operation involved removing her breast, some surrounding muscle tissue, and lymph nodes in the axillary (armpit) area that drain lymph from the breast. Several of these nodes were involved with cancer, indicating the tumor had spread outside her breast. She would need post-operative radiotherapy and chemotherapy to achieve any hope of cure.

She recovered from surgery without any problems and had an uneventful hospital course. Dr. Spivey discharged her a week later. In early April, as an outpatient, she began a regimen of 20 cobalt treatments, one each weekday. The x-ray beams were aimed to the region of her absent right breast and right shoulder area.

Two weeks later, after only ten cobalt sessions, she developed a fever. Pus began to drain from her surgical wound. Radiation therapy was stopped and an antibiotic prescribed, but the chest wall drainage continued. A few days later we re-admitted her to the hospital.

Skin bacteria had taken hold at the site of surgery and caused a deep, bony abscess in the underlying sternum, or breast bone. Despite heavy doses of intravenous antibiotics over several days, the infection continued to spread, eroding almost completely through her sternum. Unchecked, the infection might spread to her heart.

We called in a thoracic surgeon to debride the infection. The pain of deep debridement necessitated it be done under general anesthesia. Her lungs might not withstand another operation, but there was really no choice. The infection had to be surgically removed.

At the time of the operation much of her sternum was like mush. The surgeon drained all the infection and removed several loose bone fragments, then sutured the remaining pieces of bone together with wire. The resulting assemblage of remaining sternal bone and wire did not form a solid breast plate. Although the operation treated the infection, it left her with an unstable chest cage.

Mrs. Bowman was returned to intensive care, still connected to the ventilator. Although her chest was covered with bandages, I could see the problem. When she tried to breathe on her own, instead of the chest's normal outward movement with each breath, her chest collapsed inward. An unstable chest cage, added to severely weakened lungs, meant she would never be able to breathe unassisted by machine. The next day, April 10, she returned to the operating room for a tracheostomy.

Despite this major complication, and the reality that her cancer was far from cured, Mrs. Bowman remained cheerful. Metastatic breast cancer, severe emphysema, three operations, and several weeks in the hospital did not daunt her spirit. She continued to have faith in her doctors and display a strong will to live, no matter what the setbacks.

At first I thought her upbeat mood was inappropriate, or at least an indication that she really didn't understand all that had happened. Certainly I would be depressed in her situation and so expected that she would be, if not clinically depressed, at least sullen, discouraged. No her. This woman, who had two crippling diseases and a material net worth less than the yearly income of most doctors, viewed life only from the positive side. She had a good marriage, healthy children and grandchildren, and everything to live for. Why should she be depressed?

I did not mention that getting off the ventilator seemed unlikely (I did tell Mr. Bowman). Instead, I accentuated the positive. "We're going to start chemotherapy. We can't give you any more radiotherapy, but the drugs should help control your tumor."

"Good," she said with her lips. The tracheostomy tube prevented speech, but her facial expression said, "Let's get on with it so I can get better and go home."

Over the next month we gave her the latest in cancer chemotherapy. She developed complications; first pneumonia, then urinary tract infection, then a stormy course of high fever and sepsis. At one point we thought she would not survive, but her body rallied, and the infections were brought under control. She remained cheerful. The same could not be said for her doctors.

The oncologist and radiotherapist decided that she could receive no more cancer therapy and signed off her case. There was no evidence of tumor recurrence, but her fragile state made it impossible to give additional treatments if the tumor did recur.

At the end of a month in MICU, after her recovery from sepsis, I again tried to wean her off the ventilator. As expected, the effort was unsuccessful. Her lungs and chest wall were all but destroyed. Thus it came to be that, two months after the initial diagnosis of breast cancer, Mrs. Bowman lay in a MICU bed as a pure "pulmonary" case--and a disposition dilemma. Where could we send a 60-year-old, ventilator-dependent woman?

Ordinarily we would have looked for one of the rare nursing homes that accept ventilator patients. She would not consider it. Neither she nor her husband wanted her to be in a nursing home. Mr. Bowman had the solution.

"I'll take her home with me."

Before Mrs. Bowman's case, all of Memorial Medical Center's ventilator-dependent patients either died in the hospital or went to a nursing home. I knew that other hospitals had sent a few ventilator-dependent cases home, but those patients were wealthy. The Bowmans barely made ends meet on Mr. Bowman's modest pension.

Artificial ventilation at home requires an oxygen supply company able to manage the ventilator and someone to care for the patient around the clock. The first requirement is easy, since third party payers will cover the ventilator care at home (it is cheaper than in a hospital). The second requirement is the usual stumbling block. Continuous nursing care is prohibitively expensive, and insurance companies will not pay for it. Family members can theoretically do the job, but who has family that can dedicate to such extraordinary care? Mrs. Bowman did: Mr. Bowman.

I had my doubts. Mr. Bowman was devoted to his wife, but could he alone do the tasks that, in the hospital, require several shifts of workers? We would not discharge Mrs. Bowman until she was stable, but even then she would require almost constant attention. She needed to be suctioned often, given a bedpan when necessary, and fed three meals a day; the ventilator had to be checked instantly if any alarms went off; and calls had to be made if something went wrong.

Yes, yes, yes, Mr. Bowman insisted. He could do whatever was needed. All we had to do was show him what and how. Having no reasonable alternative, we agreed to send Mrs. Bowman home with a ventilator.

It took about a week for the oxygen supply company to set up a ventilator in their home. To make things easier we insisted on the same model used in the hospital. The company first surveyed the house and decided the only place for the machine was a tiny first-floor den. It could not go into their larger second-floor bedroom because the connecting oxygen tanks were too heavy for any area but the basement. To properly connect the ventilator to the oxygen tanks required that the machine be located on the first floor. (Hospitals use a built-in oxygen system with outlets in every patient room.)

After two weeks of discharge planning, during which Mr. Bowman received instruction from therapists and nurses, Mrs. Bowman was ready to leave the hospital. On the trip from MICU to the emergency room, where the ambulance was waiting to transport her home, a respiratory therapist breathed her lungs manually with an AMBU bag. In the ambulance she received ventilation from a portable, battery-operated ventilator. Besides the two ambulance attendants, a nurse and respiratory therapist also came with her. Mr. Bowman followed the ambulance in his car and I followed in my car. I also took along our head of Respiratory Therapy; this was a first for him as well.

I had never been to her neighborhood and knew only that it was in a blue-collar district about five miles south of the hospital. We followed Mr. Bowman off an expressway exit that I had passed many times before. Less than 500 feet from the exit the ambulance stood in front of an aging, two-story wood frame house. Across the street were a gas station and a bar.

She lived on the fringe of a poor working-class section of town, in a house that was modest even by neighborhood standards. On the lot next door a rusting 1960s Ford rested on cinder blocks, its wheels and one door missing. Adjacent to the gas station was a vacant lot packed with ten partly-stripped cars. In the air was the din of the expressway, with high-decibel trucks roaring by every few minutes, and a pervasive smell of exhaust fumes. Though not a slum, the neighborhood was far from appealing. I looked around and thought: This is where we are sending our first home-ventilator patient?

As for the Bowmans, they were glad to be home. Mr. Bowman made no apologies for the place, either direct or implied. "Come on in," he welcomed with enthusiasm.

The attendants took Mrs. Bowman out of the ambulance on a stretcher and, while the nurse bagged her manually, carried her up two concrete steps and into the house. Mr. Bowman stabilized. After making sure everything checked out, we said good-bye and left. Outside, I looked at our chief therapist and he looked at me. We each had the same thought.

"Not very comfortable quarters, is it?" he said.

"No, her room at the hospital was bigger."

"Well, her husband's really devoted. He's learned everything we can teach him about the ventilator."

"It's amazing," I said. "You hear some homeowners complain about their crabgrass, or problems with the swimming pool, or their need for a hot-water tub. The Bowmans don't have a pot to p-- in and he brings her home on a ventilator!"

The external appearance of the house, the freeway-exit location, the size of the rooms, and the interior decor all made for a very depressing dwelling. But Mr. Bowman was not depressed, nor was his wife, the woman with cancer and emphysema. We were depressed. How long could she live under these circumstances? In this house?

During two months in the hospital, almost all spent connected to a ventilator, Mrs. Bowman had suffered innumerable invasions of her artery for a sample of blood. We needed the blood to check oxygen and carbon dioxide levels and thereby adjust ventilator settings. I had never cared for any viable patient on a ventilator without obtaining at least one arterial blood sample a day.

We had also ordered numerous chest x-rays (once a day while she was in MICU) and many other tests, even when she was stable and only waiting to be discharged.

I did not know how often we would do any tests now that she was home. I didn't even know when I would get to see her again. The oxygen company took good care of the machine, and their technician called me once a week to report on her progress. "She's doing well," he said. "No problems with the ventilator. Mr. Bowman is managing things better than we expected. We just go in and do the maintenance checks." Given her benign course, I saw no compelling reason to make a house visit anytime soon.

About a month after she left the hospital I got a call from her husband. "Her tracheostomy cuff is leaking. I think it needs to be changed." The cuff is a small inflatable baloon at the end of the tracheostomy tube; it is normally inflated with air to provide a seal inside the trachea. If the cuff leaks and deflates, the ventilator cannot deliver the proper amount of air to the lungs.

"Is she getting enough air?" I asked.

"Yes, right now she is. But I have to keep inflating the cuff about every hour or the ventilator alarm goes off." Changing her tracheostomy tube was the one thing Mr. Bowman did not feel comfortable doing. It required disconnecting the ventilator for a minute, and that made him anxious.

"OK. I'll be out this afternoon," I said, and made plans to stop on my way home. Her house was out of the way but I didn't mind. I welcomed the opportunity to help Mr. Bowman, even with a small service. I arrived about 6 p.m. and found that her tracheostomy cuff was indeed leaking. I had brought two spares and used one as a replacement.

Mrs. Bowman was all smiles when she saw me. After I changed the tube she wrote on her pad: "Thank you."

"Are you having any problems?" I asked. "Anything bothering you?" "No," she wrote. "I feel good." My examination showed that she was about the same as when she left the hospital.

Outside in the yard, where Mr. Bowman preferred to talk, I asked him, "How are you managing?"

"Just fine. I sure am glad you came out. That's real nice of you."

"No problem," I said. "Glad to do it. She seems to be holding up pretty well. Have you been out of the house since we brought her home?"

"No, our daughter does the shopping and I just stay here and take care of Helga."

"Can you do this all by yourself?"

"Sure. Maggie [their dauther] helps with the cooking sometimes, but I'm a darn good cook too. We do OK."

Amazing, I thought. This man deserves some kind of medal!

Two months went by before I got another call. Same problem. Well, I thought, that seems about right. These trach cuffs last only about two months even in the hospital. I went out to the house and changed her tracheostomy tube.

By my exam she seemed to be doing well. There were no bedsores that you often see in nursing home patients, and her spirit remained remarkably good. Mr. Bowman was taking good care of his wife. I had thought of bringing a syringe and drawing some blood samples but decided against it. Four months had passed and nothing untoward had happened. What would I do with the results?

Outside I asked Mr. Bowman, "Have you been able to get away yet?"

"I've been to the store a couple of times. Maggie stays with her then, but it's only for a short time."

"Can't you get away more often?" I was concerned about him.

"No. Maggie's got two kids of her own to care for. I'm doing fine," he said. "Don't worry about me. I don't mind staying home."

I decided not to push it.

Over the next two years I made another eight house calls, all to change her tracheostomy tube. I always found her cheerful and appreciative of my visits. She was never out of bed when I came, although I knew she did sit in a chair on those occasions when Mr. Bowman lifted her out. As for her husband, except for an occasional foray to the store, he did not leave the house. He had not gone fishing since we brought Mrs. Bowman home from the hospital.

During those first two years, Mrs. Bowman did not have a single blood test or chest x-ray. Word began to spread through the hospital of this indomitable woman at home on the ventilator, in whom not a single blood gas had been drawn in two years. I gave all the credit to the patient and her husband.

One day in August 1984 Mr. Bowman called. "She's got some pain and can't see out of one eye," he said. She had become suddenly blind in her right eye and his description made me suspect a detached retina.

"Call the ambulance," I said. "She needs to be seen by an opthalmologist."

Two years and two months after she left Memorial Hospital she came back to our MICU. An eye surgeon saw her right away, diagnosed a detached retina and recommended surgery the next morning. It would have to be done under general anesthesia.

To prepare Mrs. Bowman for eye surgery I did an arterial blood gas and other routine tests. All were normal or unchanged from 1982. The operation was a success and she went home a week later, her vision improved.

I followed Mrs. Bowman at home for three more years. During this time I changed her tracheostomy tube about every two to four months. (I always waited for Mr. Bowman's call and always came the same day. I was out of town once, so my partner went to the house.) In those three years she had no blood tests or chest x-rays.

One day in June 1987 Mr. Bowman called. "She's not doing well. Her feet and belly are swollen and she's falling asleep all the time."

"How long has this been going on?"

"Oh, about a week."

"I'll be right out."

I feared the worst, but took some diuretic and heart medicine with me in case her problem was a simple case of congestive heart failure.

Pulling up to the house, I mentally noted the scene: not much different from five years earlier, except that the lot filled with junk cars was now vacant and the Ford on cinder blocks was gone. The expressway hummed as before, and the Bowman's house appeared about five years more decrepit.

Mr. Bowman greeted me just as I got out of the car. "She looks bad, Doc. Read bad."

I went to the room and found her very lethargic. I shook her gently and raised my voice: "Mrs. Bowman! Mrs. Bowman!" She smiled and acknowledged my presence, but the old cheeriness was no longer there.

Both feet were engorged with edema fluid, but there was a different reason for the abdominal sweeling. Her liver was rock hard, the first indication after five years that the breast cancer had spread.

I went outside to talk to Mr. Bowman.

"I'm suspicious that her cancer has come back," I said.

"I was afraid of that."

"There's little we can do it that's the case. She's had therapy and there's nothing else to offer."

"Can she go to the hospital and die there? The grandchildren are always coming over and ... "He started to cry. I fought the same urge.

"Sure," I said. "Just wait here. I'll take care of it."

I went to the kitchen to use the phone. After making the arrangements I returned to Mr. Bowman, who was still outside the house.

"The ambulance will be here in a few minutes. I've also phoned the hospital. We'll have a bed for her in the intensive care unit."

"Thanks, Doc." He was still crying.

Follow-up

Our tests confirmed that the breast cancer had recurred and spread to her liver. We kept her in MICU two days and then transferred her to a regular ward, where she received routine ventilator and nursing care. We made her comfortable with morphine injections. Mrs. Bowman died in her sleep a week later.

Mr. Bowman still lives in the same house, alone, although his grandchildren visit often. And after a five-year hiatus he is back fishing regularly for walleye.
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Title Annotation:husband cares for ventilator-pendent wife at home
Author:Martin, Lawrence
Publication:Saturday Evening Post
Date:Apr 1, 1991
Words:3861
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