Saturday, September 01, 2007
Seahawks wide receiver makes play against sickle cell: Engram raises awareness, money - Seattle P-I
... "The confusion turned into anger, then turned into a fact-finding mission," said Engram, a wide receiver for the Seattle Seahawks. "The only thing I knew about sickle cell was it was painful."
To help raise awareness and money for research, Engram created the Walk for Sickle Cell Disease ...
"I was dealing with my daughter, but I saw other people in the trenches and wanted to know how I could use what I know and what I have to help," Engram said.
In sickle cell disease, the protein that carries oxygen in the blood changes into sickle-like shapes that clog blood vessels and block blood flow. Patients suffer from severe pain episodes that can last for days. The disease can also cause anemia, organ failure, infections and sometimes death.
...
Though her pain episodes have become less frequent as she gets older, Engram still has his "Bobbi Kit" of heat packs, salts and massage oils to help her endure the pain. He describes her ordeal like a painful full-body muscle cramp that lasts for days. ...
... "The confusion turned into anger, then turned into a fact-finding mission," said Engram, a wide receiver for the Seattle Seahawks. "The only thing I knew about sickle cell was it was painful."
To help raise awareness and money for research, Engram created the Walk for Sickle Cell Disease ...
"I was dealing with my daughter, but I saw other people in the trenches and wanted to know how I could use what I know and what I have to help," Engram said.
In sickle cell disease, the protein that carries oxygen in the blood changes into sickle-like shapes that clog blood vessels and block blood flow. Patients suffer from severe pain episodes that can last for days. The disease can also cause anemia, organ failure, infections and sometimes death.
...
Though her pain episodes have become less frequent as she gets older, Engram still has his "Bobbi Kit" of heat packs, salts and massage oils to help her endure the pain. He describes her ordeal like a painful full-body muscle cramp that lasts for days. ...
Labels: compassionate people, sickness
Sunday, July 15, 2007
Taking heart - and giving one - Globe and Mail
The phone call came at 6:20 in the evening. David Prince thought it was probably a telemarketer, because the call display flashed an unfamiliar name. He picked it up anyway. "How soon can you be at the hospital?" the caller said. "We want you on the table at 7:30."
Four months after David Prince began to die, they had a heart for him.
Valerie Serba's phone rang at 2 a.m. It was her former husband. Their 25-year-old son, Michael, had been brutally assaulted and lay unconscious in a downtown Toronto hospital. The situation, he told her, was not good. "Tell Michael to hold on till I get there," she said.
...
"I was pretty overwhelmed when I saw him," says Dr. Ross, 44, a dynamic personality at the top of the heart-research field. "His blood pressure was really low. His hands and feet were cold because his body was starting to shut down. He was in walking cardiogenic shock."
David's life expectancy was somewhere between hours and days. Dr. Ross told the Princes that he needed a new heart.
...
Transplant patients have powerful feelings about the donors. There's gratitude for a gift that can never be repaid. There's also guilt that someone had to die so they could live. People waiting for an organ sometimes confess with shame that they eagerly tune into the news on a long weekend. They want to hear about the car crashes. ...
The phone call came at 6:20 in the evening. David Prince thought it was probably a telemarketer, because the call display flashed an unfamiliar name. He picked it up anyway. "How soon can you be at the hospital?" the caller said. "We want you on the table at 7:30."
Four months after David Prince began to die, they had a heart for him.
Valerie Serba's phone rang at 2 a.m. It was her former husband. Their 25-year-old son, Michael, had been brutally assaulted and lay unconscious in a downtown Toronto hospital. The situation, he told her, was not good. "Tell Michael to hold on till I get there," she said.
...
"I was pretty overwhelmed when I saw him," says Dr. Ross, 44, a dynamic personality at the top of the heart-research field. "His blood pressure was really low. His hands and feet were cold because his body was starting to shut down. He was in walking cardiogenic shock."
David's life expectancy was somewhere between hours and days. Dr. Ross told the Princes that he needed a new heart.
...
Transplant patients have powerful feelings about the donors. There's gratitude for a gift that can never be repaid. There's also guilt that someone had to die so they could live. People waiting for an organ sometimes confess with shame that they eagerly tune into the news on a long weekend. They want to hear about the car crashes. ...
Labels: sickness
Friday, July 06, 2007
Asbestos victim joins call for ban on the fiber that's killing her - Seattle P-I
Judy Clauson knows that a fast-killing cancer caused by exposure to asbestos has left her with only a short while to live. She says her remaining days are precious. But Friday, the 44-year-old mother of two from Aberdeen plans to join Sen. Patty Murray in Seattle to support the need for laws to ban the use of asbestos in this country.
...
"The doctors couldn't believe I had mesothelioma. They said I was too young and I never worked with asbestos. They treated me for all sorts of problems, but when my lungs filled with fluid, they finally figured it out," Clauson said.
Mesothelioma normally takes 20 or more years for symptoms to develop, and she said her doctors finally determined that her exposure to asbestos was from her former husband who worked at a metal foundry in Hoquiam.
"He would come home every day covered head to toe in heavy black dust, and I would wash his work clothes. We didn't know the dust contained asbestos. We had no clue," she said. ...
Judy Clauson knows that a fast-killing cancer caused by exposure to asbestos has left her with only a short while to live. She says her remaining days are precious. But Friday, the 44-year-old mother of two from Aberdeen plans to join Sen. Patty Murray in Seattle to support the need for laws to ban the use of asbestos in this country.
...
"The doctors couldn't believe I had mesothelioma. They said I was too young and I never worked with asbestos. They treated me for all sorts of problems, but when my lungs filled with fluid, they finally figured it out," Clauson said.
Mesothelioma normally takes 20 or more years for symptoms to develop, and she said her doctors finally determined that her exposure to asbestos was from her former husband who worked at a metal foundry in Hoquiam.
"He would come home every day covered head to toe in heavy black dust, and I would wash his work clothes. We didn't know the dust contained asbestos. We had no clue," she said. ...
Labels: sickness
Wednesday, June 13, 2007
Photo gallery: Portraits of Alzheimer's patients and the family members who care for them - Newsweek
... John Hummel, 50, lifts his mother, Virginia, 91, in their St. Louis apartment. Hummel quit his job as an auto mechanic and moved in with his mother because he believed that the nursing home where she had been living was neglectful. He says that he does not regret his decision. He is his mother's only child and remembers how she left her career when he was born. 'It's time I do that and take care of her. I feel turnaround is fair play,' he says. ...
... John Hummel, 50, lifts his mother, Virginia, 91, in their St. Louis apartment. Hummel quit his job as an auto mechanic and moved in with his mother because he believed that the nursing home where she had been living was neglectful. He says that he does not regret his decision. He is his mother's only child and remembers how she left her career when he was born. 'It's time I do that and take care of her. I feel turnaround is fair play,' he says. ...
Labels: compassionate people, sickness, suffering
Monday, March 19, 2007
2-for-1 transplant lets patients split a liver - A.P.
The transplant surgeon had good news: A donated liver was on the way for critically ill Maggie Catherwood. Then he asked: Would she let doctors cut off part of her new liver to share with an equally sick baby?
“I can’t imagine anyone saying no,” the 21-year-old college student said last week as, teary-eyed, she met 8-month-old Allison Brown, carefully cuddling the wide-eyed baby so as not to bump each other’s healing incisions.
...
Catherwood’s symptoms started in the fall, when suddenly she couldn’t keep food down. The day after her 21st birthday, she learned she had Wilson’s disease — her liver couldn’t properly dispose of the copper in food. The quiet buildup was destroying it. In early February, the Sterling, Va., woman joined the nearly 17,000 people on the waiting list for liver transplants.
Allison was 3½ months old when doctors discovered her worsening jaundice meant biliary atresia — the Waldorf, Md., girl was born without all her major bile ducts. She joined the transplant list in early December, the whites of her eyes turning canary yellow as the months ticked by and her liver shut down.
Livers are distributed to the sickest patients first. Late on Feb. 27, Georgetown’s Dr. Cal Matsumoto got word that the transplant network had flagged Catherwood to receive a liver from a teenager who had just died. Knowing Allison was a match, too, he broached the two-for-one transplant. ...
The transplant surgeon had good news: A donated liver was on the way for critically ill Maggie Catherwood. Then he asked: Would she let doctors cut off part of her new liver to share with an equally sick baby?
“I can’t imagine anyone saying no,” the 21-year-old college student said last week as, teary-eyed, she met 8-month-old Allison Brown, carefully cuddling the wide-eyed baby so as not to bump each other’s healing incisions.
...
Catherwood’s symptoms started in the fall, when suddenly she couldn’t keep food down. The day after her 21st birthday, she learned she had Wilson’s disease — her liver couldn’t properly dispose of the copper in food. The quiet buildup was destroying it. In early February, the Sterling, Va., woman joined the nearly 17,000 people on the waiting list for liver transplants.
Allison was 3½ months old when doctors discovered her worsening jaundice meant biliary atresia — the Waldorf, Md., girl was born without all her major bile ducts. She joined the transplant list in early December, the whites of her eyes turning canary yellow as the months ticked by and her liver shut down.
Livers are distributed to the sickest patients first. Late on Feb. 27, Georgetown’s Dr. Cal Matsumoto got word that the transplant network had flagged Catherwood to receive a liver from a teenager who had just died. Knowing Allison was a match, too, he broached the two-for-one transplant. ...
Labels: sickness
Saturday, March 17, 2007
Facing Life With a Lethal Gene - N.Y. Times
... Huntington’s, the incurable brain disorder that possessed her grandfather’s body and ravaged his mind for three decades, typically strikes in middle age. But most young adults who know the disease runs in their family have avoided the DNA test that can tell whether they will get it, preferring the torture — and hope — of not knowing.
...
Anyone who carries the gene will inevitably develop Huntington’s.
She fought her tears. She tried for humor. ...
... Huntington’s, the incurable brain disorder that possessed her grandfather’s body and ravaged his mind for three decades, typically strikes in middle age. But most young adults who know the disease runs in their family have avoided the DNA test that can tell whether they will get it, preferring the torture — and hope — of not knowing.
...
Anyone who carries the gene will inevitably develop Huntington’s.
She fought her tears. She tried for humor. ...
Labels: sickness
Friday, March 16, 2007
Photo project helps teens describe life with painful disease - Seattle P-I
... Through the photo project, called Photovoice, group leaders at the clinic gave the teens disposable cameras and sent them to visually describe a life with the disease.
"Sometimes we give cameras to people who don't feel like they have power and it helps them create change," said Seema Mhatre, Photovoice's coordinator. "When these kids have pain crises, they have to be admitted to the hospital many times and they sometimes don't feel like they're understood."
The idea was to give them a voice to share with others.
...
Like everyone afflicted with the disease, Buck was born with sickle cell, which causes the body to make abnormally shaped red blood cells. The resulting hard and curved cells pass painfully through the system, and can block blood flow to organs, causing organ failure. Frequent hospital visits for blood transfusions and pain medication are common.
Buck's family stopped counting at visit number 50.
... Through the photo project, called Photovoice, group leaders at the clinic gave the teens disposable cameras and sent them to visually describe a life with the disease.
"Sometimes we give cameras to people who don't feel like they have power and it helps them create change," said Seema Mhatre, Photovoice's coordinator. "When these kids have pain crises, they have to be admitted to the hospital many times and they sometimes don't feel like they're understood."
The idea was to give them a voice to share with others.
...
Like everyone afflicted with the disease, Buck was born with sickle cell, which causes the body to make abnormally shaped red blood cells. The resulting hard and curved cells pass painfully through the system, and can block blood flow to organs, causing organ failure. Frequent hospital visits for blood transfusions and pain medication are common.
Buck's family stopped counting at visit number 50.
Labels: sickness
Tuesday, March 13, 2007
Alzheimer's: The stilling of a mind - Philadelphia Inquirer
Robert B. Moore of Wilmington was a robust Presbyterian minister, fascinated by life's big questions and devoted to his family. This is a story of his rich life and relentless decline. It is also a story about his brain autopsy and what it revealed about this mystifying disease.
...
What exactly, they wonder, turned this gentle man into an unruly stranger who shouted obscenities and hit his wife? Why did the disease strike him a decade earlier than the average? Could the car accident that gave him amnesia briefly in 1950 have triggered this calamity years later?
...
In a 1996 letter to their children, Joanna Moore, a retired teacher who thought it important to record their family history, described the disease's progress. Her husband could still drive well, with her help as navigator, but could not do simple arithmetic. He still enjoyed reading and going to movies. He had trouble with time and was unable to follow through on plans. In conversation, he failed at finding even ordinary words. He could no longer compare two thoughts or visualize something.
...
By 2000, an exhausted Joanna Moore was keeping a journal. ...She had to watch him now so he wouldn't step in front of cars. He was a dangerous passenger who grabbed the steering wheel or tried to open his door while the car was moving. He shouted swear words and walked constantly, sweeping belongings off tables as he strode. He had hit his oldest son, Andy, a Wilmington architect, and he had hit Joanna.
"Yesterday was the day I reached my own personal limit," she wrote that November, "fighting him to get clothes off, keep him in the shower while I washed him, getting him dressed. I think we've gone back to another good day/bad day cycle, but the good days (today) aren't very good, and the bad days are horrible."
The next month, she decided she could no longer handle him. Rejected as too violent by nursing homes, Moore was admitted to a psychiatric hospital. To Joanna's horror, he rode there in handcuffs. ...
Robert B. Moore of Wilmington was a robust Presbyterian minister, fascinated by life's big questions and devoted to his family. This is a story of his rich life and relentless decline. It is also a story about his brain autopsy and what it revealed about this mystifying disease.
...
What exactly, they wonder, turned this gentle man into an unruly stranger who shouted obscenities and hit his wife? Why did the disease strike him a decade earlier than the average? Could the car accident that gave him amnesia briefly in 1950 have triggered this calamity years later?
...
In a 1996 letter to their children, Joanna Moore, a retired teacher who thought it important to record their family history, described the disease's progress. Her husband could still drive well, with her help as navigator, but could not do simple arithmetic. He still enjoyed reading and going to movies. He had trouble with time and was unable to follow through on plans. In conversation, he failed at finding even ordinary words. He could no longer compare two thoughts or visualize something.
...
By 2000, an exhausted Joanna Moore was keeping a journal. ...She had to watch him now so he wouldn't step in front of cars. He was a dangerous passenger who grabbed the steering wheel or tried to open his door while the car was moving. He shouted swear words and walked constantly, sweeping belongings off tables as he strode. He had hit his oldest son, Andy, a Wilmington architect, and he had hit Joanna.
"Yesterday was the day I reached my own personal limit," she wrote that November, "fighting him to get clothes off, keep him in the shower while I washed him, getting him dressed. I think we've gone back to another good day/bad day cycle, but the good days (today) aren't very good, and the bad days are horrible."
The next month, she decided she could no longer handle him. Rejected as too violent by nursing homes, Moore was admitted to a psychiatric hospital. To Joanna's horror, he rode there in handcuffs. ...
Labels: sickness
Monday, May 24, 2004
Doctors Put Hope in Thin Wires for a Life in Epilepsy's Clutches
Despite daily doses of several medicines, Mr. Neiley, like a third of the 2.3 million Americans with epilepsy, still has seizures. Small ones, which jolt his body briefly, can strike 20 to 30 times a day. Twice a week or so, without warning, he collapses into full-fledged, grand mal convulsions that can last several minutes and leave him confused, dead tired and frightened.
...
But behind the cheer is a life dismantled by illness. Ten years ago he was a successful building contractor in Southern California, married, with three sons. Then one night in a restaurant, he opened his mouth to speak and what came out was gibberish. It was his first seizure. That moment marked the end of one life and the beginning of another.
"Epilepsy is the most elusive and most treacherous of neurological diseases, because of its intermittency, and also the cruelest, because you never know when it is going to strike next," said Dr. Ivan Osorio, a neurologist at the University of Kansas and a researcher in the Medtronic trial. He likened a seizure to a fire spreading through the brain.
...
He has contemplated getting a "seizure-alert dog" trained to watch over people having seizures and to bring them medicine or a telephone. Some research suggests that the dogs can even alert their owners when they are about to have a seizure, perhaps by detecting a change in body odor. ...
Despite daily doses of several medicines, Mr. Neiley, like a third of the 2.3 million Americans with epilepsy, still has seizures. Small ones, which jolt his body briefly, can strike 20 to 30 times a day. Twice a week or so, without warning, he collapses into full-fledged, grand mal convulsions that can last several minutes and leave him confused, dead tired and frightened.
...
But behind the cheer is a life dismantled by illness. Ten years ago he was a successful building contractor in Southern California, married, with three sons. Then one night in a restaurant, he opened his mouth to speak and what came out was gibberish. It was his first seizure. That moment marked the end of one life and the beginning of another.
"Epilepsy is the most elusive and most treacherous of neurological diseases, because of its intermittency, and also the cruelest, because you never know when it is going to strike next," said Dr. Ivan Osorio, a neurologist at the University of Kansas and a researcher in the Medtronic trial. He likened a seizure to a fire spreading through the brain.
...
He has contemplated getting a "seizure-alert dog" trained to watch over people having seizures and to bring them medicine or a telephone. Some research suggests that the dogs can even alert their owners when they are about to have a seizure, perhaps by detecting a change in body odor. ...
Saturday, May 22, 2004
"Testament to the Freedom and Vitality and Delight of the Human Mind"
- Oliver Sacks
The Diving Bell and the Butterfly : A Memoir of Life in Death by Jean-Dominique Bauby
From The New England Journal of Medicine review by Robert S. Schwartz, M.D.
At the age of 43, Jean-Dominique Bauby, who was editor of Elle and a robust bon vivant, suffered such a stroke. After 20 days in a deep coma, he gradually regained consciousness. His right eyelid was sutured shut to prevent corneal ulcerations, he was fed through a gastric tube, he drooled uncontrollably, he breathed through a tracheostomy tube, his urine drained from a catheter, and his bottom was wiped by others. He felt as if he were trapped in a diving bell, but his mind was free as a butterfly. Bauby wrote The Diving Bell and the Butterfly solely by blinking his left eye in response to the reading of an alphabet, arranged according to the frequency with which each letter occurs in French (E, S, A, R, I,... W). A friend read off the letters, pausing when Bauby blinked. Letters laboriously became words, and then sentences.
...
[This book] is a remarkable tribute to the human spirit -- a book that will inspire any physician, medical student, nurse, or patient. There is no self-pity and no thought of physician-assisted suicide. The tone is as ironic and dry as perhaps only the French can be. In a seaside hospital, Bauby, imprisoned in his paralyzed body, recounts his days. He notes that a stroke such as his is usually fatal, but "improved resuscitation techniques have prolonged and refined the agony."
...
Now, instead of directing one of France's leading fashion magazines, he is strapped in a wheelchair, completely dependent on others for the simplest demands of life: shut the door, roll me over, fluff up a pillow. ... And then there was the boor who, with a conclusive "Good night," turned off the Bordeaux-Munich soccer game at halftime and left. Bauby's attendants dressed him not in hospital garb, but in his own clothes ("Good for the morale," according to the neurologist). Bauby comments, "If I must drool, I may as well drool on cashmere." He is, as he says, a "voiceless parrot" who has made his nest in a dead-end corridor of the neurology department. When the stretcher-bearer who returns him to his room leaves with a hearty "Bon appetit!" the effect on Bauby is the same as "saying `Merry Christmas' on August 15."
...
Every sentence of this arduously written book is a jewel burnished by a rare disease and still rarer intelligence.
Bauby died only two days after the publication of his book in France.
- Oliver Sacks
The Diving Bell and the Butterfly : A Memoir of Life in Death by Jean-Dominique Bauby
From The New England Journal of Medicine review by Robert S. Schwartz, M.D.
At the age of 43, Jean-Dominique Bauby, who was editor of Elle and a robust bon vivant, suffered such a stroke. After 20 days in a deep coma, he gradually regained consciousness. His right eyelid was sutured shut to prevent corneal ulcerations, he was fed through a gastric tube, he drooled uncontrollably, he breathed through a tracheostomy tube, his urine drained from a catheter, and his bottom was wiped by others. He felt as if he were trapped in a diving bell, but his mind was free as a butterfly. Bauby wrote The Diving Bell and the Butterfly solely by blinking his left eye in response to the reading of an alphabet, arranged according to the frequency with which each letter occurs in French (E, S, A, R, I,... W). A friend read off the letters, pausing when Bauby blinked. Letters laboriously became words, and then sentences.
...
[This book] is a remarkable tribute to the human spirit -- a book that will inspire any physician, medical student, nurse, or patient. There is no self-pity and no thought of physician-assisted suicide. The tone is as ironic and dry as perhaps only the French can be. In a seaside hospital, Bauby, imprisoned in his paralyzed body, recounts his days. He notes that a stroke such as his is usually fatal, but "improved resuscitation techniques have prolonged and refined the agony."
...
Now, instead of directing one of France's leading fashion magazines, he is strapped in a wheelchair, completely dependent on others for the simplest demands of life: shut the door, roll me over, fluff up a pillow. ... And then there was the boor who, with a conclusive "Good night," turned off the Bordeaux-Munich soccer game at halftime and left. Bauby's attendants dressed him not in hospital garb, but in his own clothes ("Good for the morale," according to the neurologist). Bauby comments, "If I must drool, I may as well drool on cashmere." He is, as he says, a "voiceless parrot" who has made his nest in a dead-end corridor of the neurology department. When the stretcher-bearer who returns him to his room leaves with a hearty "Bon appetit!" the effect on Bauby is the same as "saying `Merry Christmas' on August 15."
...
Every sentence of this arduously written book is a jewel burnished by a rare disease and still rarer intelligence.
Bauby died only two days after the publication of his book in France.
Labels: sickness
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