ARDS Chat!

The ARDS Foundation has added a chatroom to the website on a trial basis. We will see if it is used on qa regular basis and if there is no objectionable conversations, and if successful, it will remain.
Currently, no registration is required. We will review that as well from time to time.
A disclaimer will be added as well, and that disclaimed is copied below the links:
You can access it from this link or off our home page: http://ardsusa.org or http://pub44.bravenet.com/chat/show.php/3703888432 Please email or post with thoughts about the chatroom at

Conference is almost over!

The ATS conference is almost over; it has, as usual, been a wonderful experience and many more medical professionals were made aware of the ARDS Foundation and the services that we provide. Tomorrow, I am speaking at one of the sessions to help to educate from a patient perspective. With each passing year, the ARDS Foundation has been able to help accomplish more and more, with education and public awareness. We are getting there, slowly but surely.

ARDS Foundation Slideshow

I almost forgot to post the link to our newest addition to the website, the ARDS Foundation Slideshow. Check it out: http://ardsusa.com/slideshow.htm

ATS Conference-San Diego

Paula and I are in San Diego for the American Thoracic Society's International Conference. We just arrived today and had to go over to the convention center to set up our booth and poster. We are hopeful this year because we have the best location that we have ever had. The more attendees (medical professionals) who visit our booth, the more people who know that we exist and then we are better able to help patients who suddenly get that ARDS diagnosis of a family member. I will blog on a regular basis about the conference.

Where there is life, there is hope

I had a check up today at my pulmonologist's office and he told me that they had a woman in the ICU who was seventy-seven years old and really, not expected to survive. Her oxygen levels were at 100% and her PEEP was 15. Still, in his ICU, if the family wants to continue care, they do. They put this woman on one of the new beds... he said it almost looks like a spaceship, it rotates the patient without the doctors or nurses having to physically do this. Anyway, the next day, she got a little better and then a little better and then, they were able to reduce the paralytics and sure enough, she survived. I feel that if doctors allowed families to know the options, to realize that fifty percent of ARDS patients will survive, they will not give up too soon. My doctor said, and it is true, that fifty percent is pretty good. Not to minimize the critical nature of ARDS, but ARDS is one of those things that needs time to resolve. If you do not give it the time, if you pull the plug, the patient will die. I say it over and over again... Half of the patients who get ARDS will live, but all of those ARDS patients who have their vent removed too soon will die. There really is room for hope.

A Healthcare System That Works-How great is this story? If only humans were treated likewise...

http://www.medscape.com/viewarticle/503922?src=mp From Medscape General Medicine™
Webcast Video Editorials A Healthcare System That Works
Posted 5/6/2005 Karen Donelan, ScD
On a hot, Sunday afternoon last summer, a dear member of the family became increasingly weak and progressively unresponsive. Much to our surprise, the healthcare system worked remarkably well. Why is our story different than so many others?
Timely access: The PCP [primary care physician] answering service worked; humans answered the phones; the doctor met us immediately upon arrival in the emergency room; admission happened in less than 30 minutes.
Compassion: From the receptionist who told us to wear sweaters, to the technician who provided hugs to patients and our children, to the doctor who gently raised the issue of how far we should go to save this critically ill patient, people cared and they showed it.
Shared information and decisions: At every step, the doctor shared the differential diagnosis, details on evaluation and treatment, the time it would take, and the price they would bill. Then she asked what we wanted to do. Later we shared research and data by email and cell phone about possible causes of the internal hemorrhage and ITP (idiopathic thrombocytopenic purpura). We felt a part of the care team. And the team shared information with each other -- another unexpected event. They called with updates and didn't always wait for us to call them.
Expertise and the right tools: The doctors were highly trained, usually correct, and worked in a clean, modern facility that made their jobs easier and our visiting more pleasant.
On the fourth day, we brought our dog, Rico, home.
We have had many family members hospitalized. We marvel that our dog was able to receive seamless, high-quality healthcare that was accessible, compassionate, and expert with a fully disclosed price and plan of treatment.
Wishing you human healthcare as great as my dog's . . .
That's my opinion. I'm Dr. Karen Donelan, Senior Scientist in Health Policy at the Massachusetts General Hospital.

ARDS Foundation Mini-Conference

ARDS Foundation Mini-Conference On August 13, 2005, the ARDS Foundation will host a mini-conference for the ARDS Community. The event will be held from 4 PM to 8 PM at the Deerfield Hyatt.Speakers will include physicians from Northwestern Memorial Hospital, as well as other medical professionals. Topics will be announced soon, but will include discussions regarding current ARDS research, post ARDS concerns, The ARDS Foundation has secured a group rate of $69.00 per night at the Deerfield Hyatt.http://deerfield.hyatt.com/property/index.jhtml
Cost for this special and informative event is $25.00/person. Dinner is included. (if you would like to attend this mini-conference but financially are unable, please contact the ARDS Foundation at events@ardsusa.org )

The Big Sleep

http://news.bbc.co.uk/2/hi/uk_news/magazine/4515711.stmThe big sleep By Tom Geoghegan BBC News Magazine What's it like waking up after 10 years "asleep"? After a New York fireman who barely said a word for a decade began talking profusely, what are the experiences of people who wake up from comas and vegetative states after long periods? "I want to talk to my wife," was Donald Herbert's first sentence in a decade. The 43-year-old then began speaking at length to loved ones, who feared he would never recover after a roof collapsed on him in 1995. He was initially in a coma, then he regained consciousness, but his speech was slurred and his vision unclear, with no memory of relatives. Another American, Terry Wallis, who came round in 2003 after a 19-year coma, still thinks it is 1984 and has severe memory problems. There is a fascination with this deep state of unconscious, a "twilight zone" between life and death and a place few of us ever explore. WHAT IS A COMA? It comes from the Greek work "koma", meaning deep sleepIt is a state of deep unconsciousness, in which an individual is unable to respond to external stimuli. The eyes are usually closed and there is no speech.In a vegetative state, the eyes may open and close and individuals may respond to visual and aural stimuli.When minimally conscious, patients may track objects, grasp things and respond to wordsEven fewer have lived to tell their stories, but two women in the UK who recovered after weeks in a coma give a rare insight. Julie Bridgewater, 56, from north London, suffered severe head injuries after being hit by a car in 1988. She was in a coma for three-and-a-half weeks and unusually, she does have some recollection of it. "During that time, something occurred that I had a sense of, it's a sort of lost time-and-space thing," she says. "It's not like I was very aware of what I was doing, as I am now. "I was looking at myself from a great height, observing myself but not necessarily knowing that was myself or my unconscious or subconscious. I can't define it as conscious intelligence." Some noises like bleeps on television hospital programmes take her back: "It's burned in my body somehow, hardwired in my body." Ms Bridgewater also remembers making a choice to live rather than die: what she calls a "contract with myself". Post-injury, it's like an alien landing on a planet without a map to show your way around Julie BridgewaterEvents going on around her while she was in the coma also registered, like the woman Christine in the bed next to her who, she already knew, had died. And Ms Bridgewater's first words were in Farsi, a language she had learnt many years before, as if her brain was retrieving knowledge long forgotten. Although her physical recovery has been good, mentally it feels like the Body Snatchers have planted her in someone else's body, she says. And there are more personal changes too. "On some level, I'm wiser, stronger, harder, but on another level extremely vulnerable and volatile. A grumpy old woman sometimes too. "I was happy in myself pre-injury, but post-injury, it's like an alien landing on a planet without a map to show your way around. Or seeing the deep sea for the first time." Depression This feeling of having no purpose or niche still persists, she says. "It's an odd experience and I still feel like that a lot of the time. One tries to be out there, in amongst it all, but there's necessary sanctuary time and disconnectedness as well." She has suffered from depression, but not to the point of ending it all because of the promise she made to herself to live. Sarah went back on the saddle (pic courtesy of the Kidderminster Shuttle)This experience contrasts with that of Sarah Kemp, 26, who was in a coma for six weeks after a horse-riding accident in 1999. At first, doctors said it would be a miracle if she lasted 12 hours and in the following days they gave her parents the option of switching off the life-support machine because they feared the brain damage would be so severe. "For me it was crystal clear, it was like waking up from a night's sleep, clicking your fingers and being fully there," she says. "I looked at my dad and I knew I couldn't speak so I indicated to him. I don't know how I knew I couldn't speak and I didn't attempt to but I must have heard." Ms Kemp also had picked up on things around her - she knew what had happened to her, that it was her 21st birthday in two weeks and that her two best friends were coming back from the US in a week. Four months later, she had made a full recovery after hard work to recover her movement - learning how to eat, drink and speak again - although intense fatigue prevents her working full-time. Doctors are stunned that even her memory is good despite, as she puts it, "50% of my brain is just mush". But there was a social gap in her knowledge. "I had forgotten how to be in the real world. I gave one-word answers to 'How are you?' and it wasn't until I went to the brain injury charity Headway that I learnt how to be me again, socialising and helping people out." Personality changes Her chatty personality returned and her appreciation of natural beauty has enhanced ever since. Although Ms Kemp's success shows the resilience of the brain and its ability to re-route signals around damaged areas, some injuries can change personalities, says Rebecca Watson of Headway. "They could become a complete stranger to a friend or partner and can change personality. They could become violent and aggressive or go the other way and become passive." Some people need prompt cards to help them shop, or help dealing with crowds. Depression is also a problem for the injured and their carers.

How far will Health Rationing go?

How far can rationing go??? Is this how people in a civilized world think? It is a sad state of affairs when humans will dipose of people because they they think that they are too old to 'repair.'

They talk about having this standard..."justifiable clinical reason to not provide a treatment for certain age groups, not just older people, that will be O.K...." But how many times have we seen how wrong doctors can be. How far can rationing go? Britain Considers Denying Health Care Based on Age
Friday, May 6, 2005 12:45 a.m. EDT Britain Considers Denying Health Care Based on Age
A British ministry is proposing to deny medical treatment to patients based on age a move seen as the "ultimate end" for universal health care.
A spokesperson for The National Institute for Health and Clinical Excellence said that "if there is a justifiable clinical reason to not provide a treatment for certain age groups, not just older people, that will be O.K., if this treatment would not work or could not be offered.
We have said there has to be clinical evidence when discriminating on grounds of age." Critics have raised concern that the policy could lead to the elderly being denied some services.
What’s happening in Britain – the rationing of medical care – and "what will happen here if the health care busybodies are able to force us into some sort of single- or third-party payer or nationalized system, is a convergence of demand crashing into finite supply," reports Investor’s Business Daily.
Socialist health care systems like those in Britain and Canada encourage people to seek more medical treatment than they would if they were paying for it themselves. As a result, the system cannot keep up with demand.
That’s why patients must wait longer to receive basic treatment in Britain, Canada and other nations than in the U.S.
In Canada, it takes 8 1/2 weeks to see a specialist after a referral, and another 9 to 12 weeks until the patient actually is treated by the specialist, according to IBD.
In a free market, decisions about who gets to see a doctor "are made by individuals," IBD states.
"When we pay out of our pocket, we limit our visits to only those where benefits exceed costs. Though employee-paid health care can encourage some overuse, we as a nation tend toward self-rationing. National health care systems don’t have that built-in disincentive against overuse.
"When this is the case, bureaucrats eventually have to step in and ration treatment. That’s the ultimate end for universal health care."
Commenting on the rationing proposal, Britain’s Birmingham Post said: "The fact that people in their 80s and 90s regularly undergo successful operations underlines how dangerous it would be to assume that old age automatically equates to a hopeless case."
http://www.newsmax.com/archives/ic/2005/5/6/124249.shtml

Amazing story showing that sometimes doctors are wrong!

After 10 years, ex-firefighter recovers memory and speech
By ROBERT D. McFADDEN - The New York Times - 05/03/05 A former Buffalo, N.Y., firefighter who apparently suffered brain damage in a 1995 burning roof collapse and has since been virtually silent and nearly blind had a sudden unexplained recovery on Saturday, animatedly speaking to family and friends and trying to recover a lost decade.
‘‘How long have I been gone?'' the puzzled former firefighter, Donald Herbert, 44, asked in a 14-hour marathon of hugs, kisses, reunions and conversations with his wife, four sons, other relatives and old firefighter comrades.
‘‘We told him almost 10 years, and he said ‘Holy Cow!' '' Simon A. Manka, his uncle, recalled Monday. ‘‘He thought it had been three months.''
In a news conference at Father Baker Manor, a skilled nursing home in the Buffalo suburb of Orchard Park, where Herbert has been a patient for seven years, Manka said his nephew abruptly returned to life and ‘‘began to speak after nine and a half years of silence.''
Pending medical tests, Manka said, the extent and probable duration of Herbert's recovery are unknown. ‘‘However, we can tell you he did recognize several family members and friends and did call them by name.''
It happened out of the blue Saturday morning, a nursing home employee said.
‘‘I want to talk to my wife,'' Herbert was quoted as saying. A staff member called his wife, Linda, but it was his youngest son, Nicholas, 13, who picked up the phone and began speaking.
‘‘That can't be,'' Herbert said. ‘‘He's just a baby. He can't talk.''
Nicholas was indeed a toddler when Herbert, then a 34-year-old member of a fire rescue squad, rushed into a burning apartment building in Buffalo on the morning of Dec. 29, 1995. He wore a breathing mask against heavy smoke and was searching the attic for victims when the roof collapsed.
Buried under flaming debris, Herbert was knocked unconscious and, according to reports at the time, went six minutes without oxygen before other firefighters pulled him free. They carried him out a window and down a ladder, and he was taken to Erie County Medical Center in critical condition.
Herbert, who had rescued two adults and two small children in a 1990 fire and had many citations for bravery, had severe head trauma as well as prolonged oxygen deprivation and remained in a coma for two and a half months.
Fellow firefighters rallied around the family, helping with the boys, with shopping, with financial help. The outpouring of support included a benefit party at the Memorial Auditorium in Buffalo. Thousands attended, and tens of thousands of dollars were raised.
While Herbert regained consciousness in 1996, his speech was slurred, he was unable to eat without assistance, he was confined to a bed or wheelchair and his vision was reduced to a series of blurs. Doctors said they had found no damage to the optic nerves, but that the part of the brain that controls vision appeared to have been damaged.
Moreover, Herbert's memory seemed all but nonexistent. He could not say how old he was or what his job had been. He seemed unable to recognize family members and friends, and firefighting comrades had become virtual strangers.
On Saturday, as word of Herbert's progress spread, a stream of visitors arrived at Father Baker Manor for joyous reunions with a man who had seemed lost to them.
For a stretch of 14 hours, Manka said, Herbert spoke with people and asked questions, especially about his sons: Donny, now 24, and Thomas, 23, both in graduate school; Patrick, 21, a college student, and Nicholas, 13, a schoolboy.
‘‘He wouldn't go to sleep,'' said Linda Herbert's mother, Mary Blake. ‘‘He stayed up all night talking to his sons.''
Manka, a lawyer, said in a telephone interview that his nephew's apparent recovery struck everyone as amazing. ‘‘He was completely different,'' he said. ‘‘He was asking questions, and he'd recognize a voice.''
Patrick J. Coghlan was the lieutenant in charge of Herbert's rescue squad on the night of the roof collapse; he retired in 1999. On Sunday, he said, Herbert recognized the voices of his comrades and, while he could not see them, identified members of his old crew.
‘‘We have no idea how it happened,'' said Blake. ‘‘There are more people praying for this young man, so it's all in God's hands. Even if we had him for just one day, we'd be eternally grateful.''http://www.helenair.com/articles/2005/05/03/national/a01050305_06.prt