By Jerome Lowenstein, MD

Jerome Lowenstein, MDHer request seemed innocent enough. “Doc, I’m going to be eighteen very soon and I will be too old for the pediatric dialysis unit where I have been treated. Will you become my doctor and take care of me in the dialysis unit here?”

Gabrielle had large, beautiful brown eyes and had a way of rolling them upward when she wanted to make a point. Her hair was drawn into tight braids dotted with small silver beads. She was small, the consequence of her long history of kidney disease, but she did not look chronically ill. She had a way of bridging the gap between us. Few of my patients call me “Doc” and none start a conversation saying “Hey, Lowenstein” as she often did. I suppose it was the many years she had spent in hospitals as well as her way of establishing her unique identity. I assured her that I would take over the role as her nephrologist. “That’s cool, Doc. I think we will get along fine, but you have to get to know a little about me.”

What followed was akin to a tour one might get when renting a summer house. It is important to know where things are, how various systems work, and who to call when things go wrong. She pulled up her hospital gown and pointed to a small rubber catheter covered by a surgical dressing, on her lower abdomen. “This is my urostomy. That’s a tube that drains my urine, but there is not very much of that any more. That’s the thing I just had repaired. It’s fine now”

“And this“, she said pointing to another tube protruding from higher on her abdominal wall, “is for my dialysis.” She explained that this catheter had been inserted through her abdominal wall into a vein in the liver. I had never seen such a dialysis catheter, but Gabrielle quickly reassured me, “Yeah, I thought that might blow your mind. And if you are going to be taking care of me you should know that I often spike a fever at the end of dialysis. I usually get antibiotics directly into the dialysis catheter for that, but be careful, I’m allergic to penicillin and other drugs, like that and there is one other antibiotic _ I forget the name _ yeah, vanco, that’s it, that has to be given very slowly or I get red all over. And when I get pain _ you know cramps_ during dialysis _ I usually need 25 or 50 of Benadryl”

” Whoa, slow down Gabrielle. There is a lot that I have to absorb here.”

“Don’t worry Doc, I’ll be here. I always tell my doctors about these things. They might forget, so I have to keep my eyes open. My last dialysis doctor was pretty creative.” I knew that I would need to be equally “creative.”

With that memorable bit of understatement we, Gabrielle and I, embarked on an odyssey which was to last almost three years.

Living with chronic kidney failure and dialysis requires a great deal of emotional strength and the successful solution of a host of technical issues. The same can be said of caring for a patient with chronic kidney failure. Gabrielle’s problems began at birth. She was born with congenital anomalies that resulted in obstruction to the flow of urine from her bladder and led, by the time she was ten, to severe kidney damage. Two attempted kidney transplants failed. Dialysis treatments over the ensuing seven years had been a nightmare with repeated clotting of the veins in her arms and legs that were used for hemodialysis treatments.

Soon after our first meting, Gabrielle was discharged and resumed dialysis treatments at a nearby dialysis center. It was not long before her “creative” dialysis catheter began to malfunction and Gabrielle was readmitted to the hospital, now to the adult service, for what was to be a very long series of hospitalizations, each with infections, complicated by efforts to continue her dialysis treatments.

Knowing that creativity has its limitations, I raised the possibility of another transplant. Gabrielle rolled her eyes upward. I never was able to establish the cause of her “rejections”, but she told me, with a mixture of resentment and uncertainty, that her doctors blamed her for being noncompliant with the medication schedule required to prevent kidney rejection. She said little, but with my probing she explained that her two prior kidney transplants, performed at other hospitals, had failed. She was evasive when I tried to find out why she had rejected two grafts. She had no idea whether she was not careful about taking her anti-rejection medications, but I was left with the strong feeling that neither of these transplant units would welcome another chance to transplant Gabrielle. Nevertheless I started making phone calls. I was right in my intuition about the two failed transplants. I could not get a straight answer about what went wrong. The transplant team at my hospital offered that they would consider performing a transplant only if Gabrielle had a living related donor.

I approached Gabrielle with this news. Again her eyes rolled up. She proceeded to unfold the story of her family for me. Gabrielle’s natural father left the family when Gabrielle was an infant, probably related to the awareness that she had multiple medical problems. Gabrielle’s mother, who was in her teens when Gabrielle was born, raised her and her younger brother as a single parent with little education and sickle cell anemia. Neither could ever be a kidney donor. Gabrielle spoke of several “uncles”, but it soon became clear that this was a blind alley. I was back to “creative solutions.”

Over the next year or two, hospital admissions to treat infections related to her dialysis access catheters or clotted catheters kept Gabrielle in the hospital more than at home. Each time Gabrielle was admitted, I could count on a barrage of phone calls from nurses, medical students, interns and residents. How was she dialyzed? Could I review her medications? Was it true that I let her eat whatever she chose, despite her kidney condition? And most difficult, what were my plans for this patient. Gabrielle took a devilish pleasure in educating each new group of students, doctors and nurses. She knew more about her illness than any of them and found a perverse pleasure in reciting the long list of her allergies. She was allergic to latex. Aside from demanding that she be touched with latex-free gloves only, she knew that many other pieces of hospital equipment _ plastic tubing, the caps of medication vials, and respirator masks often are tinged with latex. I thought of her as a kind of chimera, part child, part medical instructor.

Then there was the question of management of her pain. Gabrielle complained of pain almost daily. The pain was usually in her joints, sometimes in her abdomen, but her joints were never swollen or warm, nor was her abdomen tender. Despite many X rays, MRI’s, ultrasound examinations, and endless blood tests, no explanation was found her pain. But Gabrielle insisted that she needed medication for pain, stressing that she knew that some of the traditional pain medications such as Demerol and morphine were not suitable for patients with advanced kidney failure. One narcotic, fentanyl, seemed to relieve her pain but, predictably was associated with tolerance necessitating increasing dosage. For reasons that I still do not understand, this drug is often given in the form of “lollipops”. A small sponge containing the narcotic is attached to a lollipop stick and kept in the cheek like a candy. Gabrielle seemed to have a lollipop in her mouth most of the time.

The pattern of regular use of narcotics for pains without apparent cause always raises the suspicion of drug-seeking behavior and drug addiction. Although I often had my doubts, I came to believe that this was not the case with Gabrielle, but it was often on my mind. Doctors and nurses would often look at me suspiciously as I increased the dosage of Gabrielle’s narcotic lollipops. It is a familiar observation that hospital staff, doctors and nurses alike identify some physicians with patients under their care for many years; probably for good reason. The relationship that is established during a long chronic illness is not familiar to hospital staff whose contact with patients, however intense, is brief. I had seen Gabrielle go without narcotics for weeks when these drugs were withheld for medical reasons or when Gabrielle, like a petulant child, announced that she would no longer take medications to control her pain. In a word, I never saw her manifest drug withdrawal. I was convinced that Gabrielle’s pain, though I did not understand its origin, was real.

I had a strange idea. Gabrielle’s mother had sickle cell disease; it killed her. When I was a young intern and resident I saw many patients with sickle cell disease arrive in the emergency room of Bellevue Hospital complaining of severe abdominal, joint or “total body” pain. The nurses and house staff usually identified these patients as “frequent fliers” with the implication that the pain was not real and the patient was seeking narcotics. Over the years, as the treatment of sickle cell disease has improved I have come to see that these mysterious pain episodes are typical of sickle cell crises. I satisfied myself that Gabrielle did not have sickle cell disease which usually requires a double dose of the sickle cell gene. Gabrielle inherited only one copy of the sickle cell gene from her mother. Was it possible that Gabrielle might have “inherited” the pattern of pain she witnessed during the years of witnessing her mother’s painful sickle crises? There is much more that is unknown than known about pain.

The picture of this child-like young woman, with a flashing smile and a lollipop in her cheek is one I came to expect whenever I visited her room. But that is only a part of the picture. Her room was littered with half-empty containers of Chinese food, pizza slices, and potato chips and other items high on the list of “forbidden fruits” for a patient on dialysis treatment. Gabrielle insisted that she could not eat the special diet the hospital provided for patients with kidney disease. Gabrielle “ordered in” from many of the take-out restaurants in the neighborhood of the hospital. She assured doctors and nurses that, unlike most patients with end-stage kidney disease, she could eat salt without ill effect. I was not convinced but I grew accustomed to seeing small containers of soy sauce on her bedside stand, the leftovers of her imported night time feasts.

Gabrielle regularly stayed up late at night. She was the darling of the evening and night staff nurses and aides. She shared her food and I suspect they loved the company of this spunky young woman. Gabrielle structured her time _ no mean feat as a patient in a hospital where dialysis treatments lasting three to four hours are scheduled three times weekly. While I saw little of Gabrielle’s nocturnal social life I have vivid recollections of my visits with her each morning. Gabrielle would lie curled in her bed resisting all my efforts to examine her. I tried all the tricks I had learned with my own children. I was firm, I cajoled, even threatened her with a bath of ice and water from her bedside jug but I rarely could get more than a grunt, a two word response, or when I was fortunate, a roll of her beautiful brown eyes. I learned to return later in the day if I needed to examine Gabrielle or discuss a procedure or test.

Photocopy of raffle ticketOne afternoon I found Gabrielle busy at work cutting small paper squares on which she had lettered the words “raffle ticket”. “Hi, Lowenstein. Wanna buy a ticket for a fundraiser for the Make-A-Wish Foundation?” I remembered that shortly before I met her, Gabrielle had been taken to the ice rink in Central Park by this group, and she told me that a few years before that the Make-A-Wish Foundation had arranged a trip so that Gabrielle could visit Disney World. “So, Doc, will you buy a ticket, or two? Only two dollars apiece. I could hardly refuse but when I looked into my wallet, I found only a $5 dollar bill. “That’s okay, Doc. I’ll have change for you next week.” “I hope that I win.” She flashed a look at me and said, “I hope so, too.” She presented me with $3 the following week; the raffle tickets are still in my desk at the hospital. They remind me of an important lesson _ that it was important to grant Gabrielle control when it did not hurt her, and the price was not too high.

More than once Gabrielle became very depressed and withdrawn. She would refuse to have a new access line placed or even have dialysis treatment. When my efforts failed I would call on Gabrielle’s mother to come to help convince Gabrielle to go on with her treatments. Gabrielle could not refuse her mother’s imploring. Gabrielle’s mother was very ill with advanced lung disease and heart failure after years of sickle cell crises. She did not come to the hospital often but she was always there when I called. Gabrielle could see that her mother was very ill; together they were caught in the slowly revolving vortex of increasing disability. I remember being present at a meeting set up to coordinate the efforts of the social worker, the psychiatrist, physical therapist, occupational therapist, round-the-clock home health aides and “neighborhood team worker” involved in Gabrielle’s care following a month-long hospitalization for depression. As the meeting neared conclusion, Gabrielle, in her wheelchair, was brought into meet the group. I shuddered to think how intimidating this must be for her. Gabrielle sat quietly as each person in the small conference room was introduced. Gabrielle then looked around and asked, “This is all very good, but who do I call when I am in trouble?” What do you do in caring for a patient with a complex chronic illness when you know that the outcome will be a bad one? One thing I learned to do was to act as her advocate. In its simplest form I did it each time Gabrielle was admitted to the hospital. I wanted each new team of house staff to see Gabrielle as a courageous young woman with an incredibly complex past medical history, an immediate easily identified problem, usually an infection or a blocked dialysis catheter and no accessible veins from which to draw blood. It was my teach her new doctors that if they took the time to question and listen, they would learn a great deal about the real task of caring for a patient. Over time I became aware that I had repeated Gabrielle’s history to so many nurses and house staff physicians that I had come to be seen as a part of her history and her life _ a patient-physician dyad. Gabrielle was in the hospital when she received the call that her mother had died. The news spread rapidly through the hospital. A steady stream of hospital workers came to comfort her and to help arrange for Gabrielle to attend her mother’s funeral.

Gabrielle told me, “There is no place in the world where I feel safe now.” It was striking for me to witness how Gabrielle turned to address the problem of where and with whom her 17 year old brother would live. Gabrielle’s mother had a fairly large rent-subsidized apartment in Harlem but it was not wheel chair accessible for Gabrielle. She could not negotiate the stairs at the entrance. Gabrielle seemed to direct all her energies to the practical problems facing her, often anticipating the suggestions of her hospital social worker.

I advocated for her, defended her, supported her, and cajoled her but I knew that a day would come when no amount of creativity in creating new dialysis access sites, when no more broadly-based antibiotic combinations, when no combinations of antidepressants and talk therapy would be effective and I questioned whether I wanted to be at her side when that day arrived.

In a scenario that was befitting Gabrielle’s life, she became acutely ill at home. A call made to 911 brought an ambulance which was to bring her to the hospital, but the ambulance was involved in a collision on the Upper West Side. Though Gabrielle was not seriously injured, the ambulance was diverted to the nearest hospital. I received a call from the medical resident assigned to supervise Gabrielle’s care. I proceeded to recite the now-familiar litany of her medical problems. The following day I received another call. “Gabrielle has taken a turn for the worse. She is unresponsive and the outlook is very poor”.

I told the physician that I had seen her rebound miraculously from similar episodes and I was overjoyed when, two days later a member of the team caring for her reported, with amazement, that she was recovering. The call gave me another opportunity to ask myself whether I wanted to be present when “that day” came for Gabrielle.

She died the next day.

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Jerome Lowenstein, MD, Professor of Medicine in the Division of Nephrology and Firm Chief in the NYU School of Medicine has had a distinguished career as an academic, researcher, clinician, and author.

“For me, creative writing relies heavily on reflection, the process of turning an idea or thought over and over in my mind. This process brings my thoughts and observations into close apposition to a much wider body of my feelings and experiences. Whether writing a book on acid-base physiology (Acid and Basics, Oxford Univ. Press), essays about patients (The Midnight Meal, Yale Univ. Press) or a work of fiction (Henderson’s Equation, Gadd Books), for me, reflection is always very important,” writes Dr. Lowenstein.

“I have come to recognize that this same process of reflection serves to bring a wide range of information and understanding to my care of patients and it is both enriching and creative.”