Showing 21 - 30 of 271 annotations tagged with the keyword "Chronic Illness/Chronic Disease"

The Heart

de Kerangal, Maylis

Last Updated: Apr-25-2016

Primary Category: Literature / Fiction

Genre: Novel

Summary:

The story of The Heart is a simple, linear structure.  A car accident renders a young Frenchman, Simon, brain-dead. A medical team proposes harvesting organs, and his parents, after some turmoil, agree. That’s the first half of the book, the provenance of this specific heart. The second half describes its delivery for transplantation. Administrators find recipients, one of them a woman in Paris. Simon’s heart is transported there by plane and sewn into her chest. All this in 24 hours.  
            
The narration is complex, with flashbacks, overlapping times, and literary art that is compelling. There are 28 sections to the story but without numbers or chapter headings, and these are often broken up into half a dozen shorter sections. We have an impression of stroboscopic flashes on the action, with high intensity focus. These create a mosaic that we assemble into dramatic pictures. Even major characters arrive without names, and we soon figure them out.  
 

Simon.  He’s called the donor, although he had no choice in the matter. At 19 years of age he’s trying to find a path in life.  A Maori tattoo is a symbol for that search. He has a girlfriend, Juliette. He fades away as a character (except in others’ memories) and his heart takes center stage.  

Marianne and Sean, Simon’s parents.  Her emotions, as we would expect, range widely, especially during discussion of whether Simon’s organs can be transplanted. Father Sean has a Polynesian origin and cultural heritage.


Pierre Révol, Thomas Rémige, and Cordélia Owl are respectively the ICU physician, nurse, and the transplant coordinator. These are vividly drawn, with unusual qualities. Skilled professionals, they are the team the supplies the heart.  

Marthe Carrare, Claire Méjan, and Virgilio Breva are a national administrator, the recipient, and a surgeon. Described in memorable language, they are the receiving team.              

The characters’ names give hints of de Kerangal’s range. S
ince the 1789 Revolution Marianne has been a well-known French national symbol for common people and democracy, but Virgilio Breva is from Italy and Cordélia (recalling King Lear) Owl (as in wise?) has a grandmother from Bristol, England. We learn of personal habits regarding tobacco, peyote, sex, and singing. Medicine is part of a larger world of people of many sorts.              

Even minor characters, such as Simon’s girlfriend Juliette and other medical personnel are touching and memorable.
             

These characters animate the story with their passion, mystery, even heroism. While we don’t know the final outcome of the implanted heart, the text shows the professionalism of the medical team, the French national system that evidently works, sensitive care of patients and families, and in the last pages, rituals of affirmation for medical art and for patients.
             

There is richness in de Kerangal’s style. At times it is direct, reflecting the thoughts of characters. At times it is ornate, even baroque. She uses many images and metaphors, often with large, epic qualities. A very long sentence about the over-wrought parents describes them as “alone in the world, and exhaustion breaks over them like a tidal wave” (p. 141).  The style uses many similes, often with dramatic and unexpected comparisons. There are references to geology, astronomy, even American TV hospital drama. The style is at times lyric…we might say “operatic.”  One page about Cordélia is very, very funny.
        
  
In a different tone, the details of medicine, law, and ethics are carefully presented, and visual imagery puts us in the hospital rooms, the OR, and crowded streets around a soccer game. Throughout it appears that translator Sam Taylor has done an admirable job. 
             

The text invites us to consider large visions of wholeness. All the major characters seek some comprehensive unity to their lives, and they avoid orthodoxies such as religion, patriotism, and economic gain. Sean has his Polynesian heritage and boat-building passion, which he has shared with Simon. Cordélia, at 25, is an excellent nurse, wise beyond her years in some ways, but is as dazzled by a man as any teenaged girl. Nurse Rémige has his master’s in philosophy, loves the song of rare birds, and is, himself, a serious singer.  

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The Death of Cancer

DeVita, Vincent

Last Updated: Feb-04-2016
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

The book offers a detailed account by one of the nation’s leading cancer researchers of developments in chemotherapy over the past several decades, as well as the recent history of surgical and radiation treatments in the “war on cancer”—a term he resisted at first but finally embraced with full understanding of its implications.  The narrative touches on many of the writer’s own struggles over economic, political, and moral implications of what a NYT reviewer described as a “take-no-prisoners” approach to cure.  He also includes stories about disagreements with other researchers that give some insight into the acrimony that is part of high-stakes science.  At the NIH and later as head of the National Cancer Institute, DeVita faced many decisions about distribution of resources, how much to put patients at risk, and whom to include in clinical trials.  He provides his own point of view on those controversies frankly.  Not much mention is made of the causes of cancer, of nutritional or other complementary approaches, or the environmental factors in the spread of cancer. The strong focus on the book is on the development of chemotherapeutic treatments that have succeeded in raising survival rates, though few current statistics are cited.

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Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Kozol tells a multilayered story about himself and his father, a distinguished physician who becomes increasingly demented by Alzheimer’s disease, starting at age 88. A neurologist, Dr. Harry Kozol is able to diagnose with great specificity his own disease.     
          
Son Kozol describes his father’s initial symptoms and the slow decline, a direction that is sadly and fatefully, clear. The son goes on walks with him, describes their conversations, arranges for paid companions, and puzzles about what must be “a life beneath the life” of his progressively inarticulate father.
           

Over the 14 years of this illness, there are some medical mishaps—including problems in continuity of care—depletion of the family’s money, and Jonathan’s hesitation to use a DNR (Do Not Resuscitate) order for his father or for his aging mother. He writes of his doubts, uncertainties, and mixed emotions. When his father is actively dying, Kozol dawdles elsewhere with lists and papers “obsessively.” He understands this, in retrospect, as denial. Nevertheless he arrives at the hospital and places his ear on his father’s chest, hearing breaths come slower and slower until death. Dr. Kozol dies in 2008 at the age of 102.
           

Alternating with this story are long passages about Dr. Kozol’s professional life, including his work with Eugene O’Neill and family, also Patty Hearst and Albert DeSalvo (“The Boston Strangler”). For the latter two, he is an expert witness in court cases. These passages illustrate his many skills, tenacity, and ideals.

A 25-page Epilogue written a half a dozen years later casts a different light on the father-son relationship. While the bulk of the book shows a loving, respectful relationship, the Epilogue describes tensions and disagreements between the two from Jonathan’s childhood to later years. The father criticizes what he perceives as failures, lack of ambition, poor choices, and the like. Kozol describes his own illustrious career, often in directions his father disapproves. In later years, however, Kozol accepts some of his father’s advice and understands their status more as equals. In another seven years, however, Dr. Kozol’s mind starts its difficult path, and the son becomes the caregiver to the father.  

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The Not-Dead and the Saved

Clanchy, Kate

Last Updated: Nov-23-2015
Annotated by:
Miksanek, Tony

Primary Category: Literature / Fiction

Genre: Short Story

Summary:

Two individuals share a struggle that is grueling, depressing, and whose outcome is probably preordained. The Mother (divorced, constantly tired, and fearful of sickness) is "not a good choice for the parent of a chronic invalid" (p. 168). The Son (smallish, clever, and born with some kind of tumor) has previously had an organ transplant (most likely kidney).

Their trek through the realm of sickness unfurls in seven scenes - all hospital wards and finally Hospice. First, the Son is an adolescent in a pediatric ward where the Machine (presumably renal dialysis) prevents his death. There he spots a baby that he dubs a "Not-Dead." She has multiple birth defects due to a chromosomal abnormality and is kept alive by technology. He intuits that while not dead, the baby is not "properly alive" either. He muses about his own status. His mother is always bedside, propping up his spirits.

Next he is in the ICU and then transferred to a medical floor. He receives a blood transfusion after disconnecting the Machine in a likely suicide attempt. Sometime later, he is back in the pediatric ward after receiving an organ transplant. The Son gets admitted to the Cardio-Respiratory unit for a severe infection. In and out of hospitals, he enrolls in college but quits. After getting married, he joins a commune of survivors of medical illnesses known as "The Saved." This collective lives on a farm and members avoid any contact with family.

The Son's health further deteriorates. He is hospitalized in terminal condition. By this time, he has his own child, a 14-month-old boy named Jaybird. In the oncology ward, doctors diagnose three tumors in the Son's brain but he refuses any treatment (surgery, radiation, or chemotherapy). He is moved to Hospice. His absent Father comes to visit and comfort him. When the Son dies, it is the Mother who is alone with him. The Son's wife, Father, Jaybird, and members of The Saved commune are all asleep in the Day Room. Only after the Son dies are the names of the Mother and the Son revealed: Julia and Jonathon.

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Best Boy

Gottlieb, Eli

Last Updated: Nov-09-2015

Primary Category: Literature / Fiction

Genre: Novel

Summary:

Best Boy is a novel about Todd Aaron, a 54-year-old autistic man who has lived for 40 years in a Payton LivingCenter (sic); he was involuntarily committed to this facility. Todd has been in five previous places for congregate living, but Payton seems to be the best for him, thanks in part to a loving caregiver, Raykene. Todd has accepted the institutional “Law” of Payton and takes his drugs right on schedule, including Risperdal, an antipsychotic that slows him down, making a “roof” over him and muffling, he says, “the voice in my brain.”  The story is told from Todd’s point of view, often with startling imagery:  he pictures his dead parents turning into giant cigars, a raindrop “explodes,” and, when upset, he rocks back and forth and feels “volts.”  Now and then he recalls that his mother called him her “best boy.”
   
Into this stable setting come three personified disruptions. The first two are fellow patients, Terry Doon (a pun on “doom”?), a brain-injured roommate who teases, torments, and bullies Todd, and Martine Calhoun. While Terry disrupts Todd’s living space, Martine is a siren who lures him to different parts of Payton’s campus; she is also a rebel who urges him to stop taking Risperdal and shows him how to hide the drug in his hand and get rid of it later.   

The third is Mike Hinton, a day staffer who lies, manipulates, and in general mistreats Todd. Todd understands Hinton as evil and entertains violence against him—but does not act. Hinton has sex with a female patient who dies, apparently a suicide, although the language of Payton’s staff, as reported by Todd, euphemistically hides the truth.

Todd has the “Idea” of escape and sets out, on foot, to go 744 miles to “home.” A state policeman soon returns him to Payton.

Now and then Todd’s younger brother Nate calls, often while drinking. Near the end of the book, Nate and his wife Beth take Todd to his childhood home, where he had been abused physically and mentally. In a moving scene, Todd enters the only unchanged area, a crawl space and feels the return he yearned for.            

All three tormentors leave Payton, and there is a surprising resolution for Todd.  The balance and harmony of Payton’s LivingCenter are restored, and Todd, reminded by Raykene, affirms that “Somebody always loved me.” 

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Black Man in a White Coat

Tweedy, Damon

Last Updated: Nov-09-2015
Annotated by:
McEntyre, Marilyn

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

This memoir focuses on the various ways in which his being an African American affected Tweedy’s medical education and early practice as a medical resident and later in psychiatry. Raised in the relative safety and privilege of an intact family, he found himself underprepared for some of the blatant forms of personal prejudice and institutional racism he encountered in his first years of medical education at Duke Medical School.  One shocking moment he recounts in some detail occurred when a professor, seeing him seated in the lecture hall, assumed he’d come to fix the lights.  Other distressing learning moments occur in his work at a clinic serving the rural poor, mostly black patients, where he comes to a new, heightened awareness of the socioeconomic forces that entrap them and how their lives and health are circumscribed and often shortened by those forces.  Well into his early years of practice he notices, with more and more awareness of social contexts and political forces, how the color line continues to make a difference in professional life, though in subtler ways.  The narrative recounts clearly and judiciously the moments of recognition and decision that have shaped his subsequent medical career.    

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An Unquiet Mind

Jamison, Kay Redfield

Last Updated: Oct-06-2015
Annotated by:
Aull, Felice

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

The author, Professor of Psychiatry at Johns Hopkins University School of Medicine, is an authority on manic depressive illness. With this powerful, well-written memoir she "came out of the closet," publicly declaring that she herself had suffered from manic depressive illness for years. Jamison describes the manifestations of her illness, her initial denial and resistance to treatment with medication, attempted suicide, and her struggle to maintain an active professional and satisfying personal life.The author was "intensely emotional as a child," (p.4) and in high school first experienced "a light lovely tincture of true mania" (p.37) during which she felt marvelous, but following which she was unable to concentrate or comprehend, felt exhausted, preoccupied with death, and frightened. (pp. 36-40) Interested in medicine as an adolescent, she pursued her goal in spite of mood swings and periods of mental paralysis. Jamison completed graduate work in clinical psychology; shortly after obtaining a faculty appointment "I was manic beyond recognition and just beginning a long, costly personal war against a medication that I would, in a few year’s time, be strongly encouraging others to take [lithium]." (p. 4)Jamison eventually, through strong support from friends and colleagues, excellent psychiatric care, and her own acceptance of illness, has been able to reach a state of relative equilibrium--tolerable levels of medication (fewer side effects) and dampened mood swings. But she makes clear that she must stay on lithium and remain vigilant.

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Irene

Coulehan, Jack

Last Updated: Oct-06-2015
Annotated by:
Aull, Felice
Chen, Irene

Primary Category: Literature / Poetry

Genre: Poetry

Summary:

The author poetically describes the neurological deficits left by his patient’s third stroke. Her misshapen words are "small stones and loose particles of meaning "as he attempts to understand her. Her husband, however, states that "her gulps don’t make no sense," emphasizing his perception of the hopelessness of the situation.

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Annotated by:
Shafer, Audrey

Primary Category: Literature / Nonfiction

Genre: Memoir

Summary:

Matthew McCarthy begins his memoir of medicine internship year at Columbia University with a glimpse into his first rotation, surgery, as a Harvard medical student. He had exhibited a talent for surgery and liked it – an affinity compatible with his dexterity as a minor league baseball player and sense of team spirit. The reader meets some of McCarthy’s memorable mentors, and, although he opts to not pursue surgery as a career, McCarthy’s eye for seeking productive apprenticeships with talented housestaff and faculty allow him to guide the reader through a year of drinking from the firehose, also known as internship. Medical training is full of liminal experiences, and internship is one the most powerful and transformative.  

McCarthy’s eagerness to do well, both by his patients and by his medical colleagues and team, and his candor with revealing his mental and bodily responses to the stress and strain of the responsibilities of internship, make him an adept guide. For example, he has gulped an iced coffee and is churning at the bit to take care of a new admission on his first day of call in the cardiac care unit (CCU). His resident, called Baio in the book, tries to tell McCarthy to take it easy. But McCarthy notes, “Our orientation leaders, a peppy group of second- and third year residents, had instructed us to exude a demented degree of enthusiasm at all times, which wasn’t difficult now that my blood was more caffeine than hemoglobin.” (p 15) The previous chapter had ended with a cliffhanger – a patient life would be placed in danger because neophyte McCarthy misses the importance of a key clinical finding – what and how that plays out will wait until McCarthy guides us through the terror and exhilaration he feels as he begins his CCU rotation.  

McCarthy has a good sense of the ironic: the huge banner advertising the hospital reads “Amazing Things are Happening Here!” Indeed, not only for patients and families, but also for the many trainees and workers. We watch McCarthy successfully perform his first needle decompression of a pneumothorax; he is allowed to attempt it as he notes that he watched the video of the procedure. But unlike the video, he needs to readjust the needle several times and add on some additional tubing and water trap, which makes the scenario more true-to-life than a fictionalized ‘save.’ The author ends the chapter with congratulations from resident Baio: “Well done… Amazing things are indeed happening here.” (p 244) As McCarthy’s year continues, many things do happen, including an infected needle stick, telling bad news to a new widow, and developing a friendship with a longterm hospital patient waiting for a heart transplant.

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Primary Category: Literature / Nonfiction

Genre: Treatise

Summary:

Atul Gawande’s Being Mortal is both ambitious and synthetic, qualities that well suit his difficult subject, death.  In Western culture, there are taboos against death because it fits neither into post-Enlightenment notions of progress and perfection nor into medical notions of control, even domination of human biology. A surgeon and an investigator, Gawande draws on his patients, his family, and travels to various hospitals and other caregiving places in order to confront death and see how approaches such as hospice and palliative care can improve our understanding, acceptance, and preparation for death.

Gawande has harsh words for contemporary medicine, the supposed caregiver for the dying and their families.  Relying heavily on technique and industrial models, it ignores the deep needs of the dying and provides, instead, versions of “warehoused oblivion” (p. 188), for example long, futile stays in ICUs.

As opposed to traditional societies like India, Westerners prize the independence of individuals, a status that is, of course, never permanent. In the chapter “Things Fall Apart,” Gawande describes how longer lives are now the norm but they include chronic illnesses and inevitable decline in vitality.  Our deaths are now routinely in hospitals, not at home, and often extended—sometimes brutally—by technical support and unwillingness of doctors and families to stop aggressive treatment.       
       
Also, sadly, there are fewer and fewer geriatricians at a time when there are more and more elderly.  A good geriatrician takes a long time with each patient, is not well paid, nor does s/he do income-generating procedures. Worse yet, some training programs are being discontinued.  

Gawande illustrates his ideas with case studies of patients and describes, from time to time in the book, the elderly journeys of his grandmother-in-law and his own father.  These passages make vivid the abstract ideas of the book. But it’s not just elderly patients who face death: health calamities can come to anyone, for example, a 34-year-old pregnant woman found to have a serious cancer. Various treatments are tried without success, but family and doctors act out “a modern tragedy replayed millions of times over” (p. 183) of a medically protracted death. Finally her mother calls a halt to treatment.
               
Family members often bear a heavy load in caring for a sick elder, but many nursing homes are often worse, designed for control, not support of the patients. 

The chapter “A Better Life” describes the first in a series of places that offer much improved settings for the elderly, with birds, animals, gardens, and, in general, richer lives that have a sense of purpose.  Gawande describes hospice care, palliative care, and advanced directives (including Do Not Resuscitate orders) as improvements needed to break the norms of “treat at all costs.” The old roles of Dr. Knows-Best and Dr. Informative need to give way to physicians and others who talk with patients and families about their values, their wishes for the last days, and their preparations for death. In short, aggressive treatment should no longer be the “default setting” for hospital care.     
        
The book ends with a dozen moving pages about the death of Gawande’s father. The “hard conversations” have clarified his wishes, and hospice care has provided “good enough” days.  Pain control has done well. Then, finally, “No more breaths came.” The family travels to India to spread his ashes on the Ganges. 

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