ARDS Support Center

Katie Hamlin's Fight for Survival

Susie Hamlin
shamlin57@bellsouth.net
December 26, 2011

My daughter's story can be read on YouTube - Katie Hamlin-Child of Children's. In a matter of days and three office visits diagnosed with a virus, she quickly developed ARDS, Katie was jetted to a hospital in Birmingham and came home 7 months later on a tube, trach, oxygen. She had over 200 blood transfusions while on ECMO. It is almost two years since she came home. Her lungs are good, but she now suffers uncontrollable seizures. She has short term memory loss, optic nerve damage and too many other things to discuss here. Katie has lost all of her friends. We have been to TIRR in Houston for rehab with no luck, and we were turned down at Shepherd Center in Atlanta. We just returned from a visit to a facility in Arkansas. Katie appears perfectly healthy but suffers major neurological and psychological issues. We can't find the right help. She is now 18½ and ready to move on, but she can't. We desperately need the right facility to help her become independent or able to live and have some kind of life. She is a miracle and a beautiful young lady. See more at www.caringbridge.org/visit/katiehamlin . She was days shy of 16 when she became ill, and the cause is still unknown. She needs a friend! We are praying for all of you. A 24 year-old girl from our area lost her battle with ARDS a year ago. It struck her in a matter of days while traveling in Spain. This has to stop!



Bay Area hospitals sharply cut death rates
Victoria Colliver, Chronicle Staff Writer
April 21, 2011


By taking relatively simple steps and arming health care workers with greater knowledge, Bay Area medical centers have made dramatic strides in reducing death rates from sepsis, the leading preventable cause of deaths in hospitals.

Nine Bay Area hospitals participating in a two-year UCSF program saw a striking 40 percent average drop in death rates from the common but potentially deadly condition in which the bloodstream is overwhelmed by bacteria.

Sepsis typically begins as an ordinary infection, such as pneumonia or a urinary tract infection, but can develop into something more serious by overwhelming the body's immune system. It can turn deadly when the infection enters the bloodstream. An estimated 200,000 people reportedly die from it each year.

The nine Bay Area hospitals started with an average sepsis mortality rate of 27.7 percent of cases in the six months leading up to the start of the study in December 2008. By December 2010, the average across the hospitals had dropped to 16.6 percent, for a 40 percent difference in mortality.

The hospitals got the results by working with their nurses, doctors, laboratory technicians, pharmacists, specialists and administrators to get them to recognize that there was a problem. Then they taught them to better identify and screen patients most at risk of developing sepsis and to get them to follow existing protocols. As a result, patients were treated with antibiotics much faster.

Not fancy, just smart

"It's nothing fancy. We didn't buy a $20 million piece of equipment. We used the smart intelligence of frontline clinicians," said Julie Kliger, director of UCSF's Integrated Nurse Leadership Program, which developed the sepsis reduction program.

The hospitals officially released their results Wednesday during an event celebrating the end of the program, but not the end of their work. The hospitals showed a range of overall results, depending on the type of facility and patients, and the rates varied greatly from month to month. But all the hospitals made strong improvements.

At San Mateo Medical Center, death rates from sepsis dropped by almost half from nearly 40 percent in December 2009 to about 21 percent. San Francisco General Hospital's mortality rate from sepsis fell from above the average - 42.4 percent - to its most recent level of 22.7 percent. Both Contra Costa and Alameda counties' medical centers reported recent mortality levels as low as 13 percent. The smaller Sequoia Hospital in Redwood City started at a relatively low rate of 18.5 percent and managed to drop below 10 percent.

"The key issue here, in addition to having standardized workflow and screening, is really about educating the medical staff," said Dr. Susan Ehrlich, chief executive officer of San Mateo Medical Center. "It's helping them understand why we worry about sepsis ... and what we can do to change those outcomes."

The sepsis project is the second set of impressive results produced by UCSF's Integrated Nurse Leadership Program, which is funded by the Gordon and Betty Moore Foundation. Medication errors dropped 88 percent as the result of a 36-month program that ended in 2009 and involved many of the same nine hospitals.

Common sense

What both the sepsis and medication programs have in common are low-tech, seemingly commonsense approaches. For example, in the medication study some of the hospitals reduced errors by having nurses wear special sashes or vests to remind other staff members not to interrupt them while they were administering medications.

In the sepsis program, hospitals used various methods such as having nurses more thoroughly screen patients for sepsis as they arrived in the emergency room.

While many of the tests - blood pressure, heart rate, temperature - are routine in emergency care, nurses found that doing them while being vigilant about the clinical signs of sepsis helped identify those patients earlier. Because the condition progresses rapidly, hours or even minutes can save lives.

The program gave the hospitals latitude to develop techniques tailored to their facility and patients. Some of the hospitals gave ER nurses the ability to order lactate blood tests, a key way to identify the existence of sepsis, rather than waiting for those high-risk patients to see a doctor.

Regular screening

San Francisco General Hospital changed protocols to require all patients in the medical-surgical and critical care units to be screened every 12-hour shift for sepsis. Previously, patients were tested when they appeared to be at risk, but the protocols have now become more standardized.

"It brought the subjectivity out of it and made it more objective," said Terry Dentoni, a nursing director at the hospital. Dentoni said the emergency department now screens all patients with any sign of possible infection - be it a cough or a cut.

Andrea Kabcenell, a vice president with the Institute for Healthcare Improvement in Cambridge, Mass., said other projects for reducing sepsis have produced similar results, but she said the strong showing of the hospitals and the empowerment of nurses makes this program exciting.

"For the average across the nine hospitals to be that good is really quite stunning," she said.

Reducing sepsis

Project: UCSF's Integrated Nurse Leadership Program worked with nine Bay Area hospitals over two years with the goal of reducing deaths from sepsis, or blood poisoning.

Key components: Better screening for patients at risk of developing sepsis; quicker testing; improved adherence to a series of "best practices."

Results: A 40 percent average reduction in sepsis mortality rates.

Participating hospitals: Alameda County Medical Center, Contra Costa County Medical Center, El Camino Hospital in Mountain View, Kaiser Fremont, Kaiser Hayward, St. Rose Hospital in Hayward, San Francisco General Hospital, San Mateo Medical Center and Sequoia Hospital in Redwood City.

Source: Integrated Nurse Leadership

Program Potentially fatal blood poisoning

What is sepsis?
It is a bad response by the body to an infection. Typically, the potentially deadly condition is caused when bacteria invades and spreads in the bloodstream (often called "septicemia" or "blood poisoning"). Normally, the body's defense system fights infection, but in severe sepsis, that reaction kicks into overdrive and can lead to organ failure and death.

How deadly is it?
About 750,000 people in the United States develop sepsis each year, and more than 200,000 people die from it. Studies suggest an overall mortality rate of 28 to 50 percent. Because patients usually die from sepsis during an illness, mortality rates may be underreported.

Who's at risk?
Although anyone can develop sepsis even from common infections, those most at risk are the very old, the very young, hospital patients, people with pre-existing medical conditions, and those with invasive devices such as tubes and catheters.

What are the symptoms?
Fever or chills; confusion; nausea and vomiting; diarrhea; increased heart rate and respiration; high or low white blood cell count; low blood pressure; altered kidney or liver functions.

How is it treated?
Patients are typically hospitalized and given a combination of intravenous antibiotics.

Source: Surviving Sepsis Campaign (www.survivingsepsis.org).

Reprinted with approval of Victoria Colliver
© 2011 SF Chronicle



**NEW UPDATE**

Steroid Treatment for ARDS

Read statement below from G. Umberto Meduri, MD, who is investigating the effects of steroid treatment in ARDS

This is a brief update on the global impact achieved by research steroids in ARDS (most sepsis-induced). The randomized trial investigating prolonged low-dose glucocorticoid treatment in ARDS that we published two years ago in Chest (1) has had an impact in medical practice. This trial won a national research award and was one of the most read articles by Pulmonologists in 2007. The 2008 edition of the Washington Manual of Critical Care states that “with the exception of glucocorticoids, no pharmacological therapy has yet been shown to decrease the mortality of ARDS independent of treating the underlying cause”. Both the Washington Manual and the 2008 International Task Force by the American College of Critical Care Medicine recommended our protocol for the treatment of ARDS.(2)

Most importantly a new comprehensive review of the literature and meta-analysis, published in the current issue of Critical Care Medicine (enclosed), concluded that prolonged low-dose glucocorticoid treatment in ARDS is safe and will save one of four treated patients – translating into 50,000 lives saved per year in the United States alone.(3) Click here to read the recently published commentary in Critical Care Medicine.

Moreover, all nine reviewed studies consistently reported that treatment-associated reduction in inflammation was associated with a significant reduction in duration of mechanical ventilation and ICU stay. Overall, treatment achieved a seven-day reduction in duration of ICU stay translating into tens of thousands of dollars saved per patient.

Physicians all around the globe now have a treatment that is safe (when used in combination with secondary prevention),(4) inexpensive ($200 for 1 month treatment), and highly effective. Click here to read the recently published commentary in Critical Care Medicine.


Warmest regards,

G. Umberto Meduri MD
Memphis VA Medical Center
Professor of Medicine



1. Meduri GU, Golden E , Freire AX, et al. Methylprednisolone infusion in early severe ARDS: results of a randomized controlled trial. Chest. 2007; 131: 954-963.
2. Marik PE, Pastores S, Annane D, et al. Clinical practice guidelines for the diagnosis and management of corticosteroid insufficiency in critical illness: Recommendations of an international task force.
Crit Care Med. 2008; 36:1937-1949.
3. Tang B, Craig J, Eslick G, et al. Use of corticosteroids in acute lung injury and acute respiratory distress syndrome: a systematic review and meta-analysis.
Crit Care Med. 2009; 37:1594-1603.
4. Meduri GU, Marik PE, Annane D. Prolonged glucocorticoid treatment in ARDS: Evidence supporting effectiveness and safety. Crit Care Med. 2009; 39: 1800-1803.


Steroid treatment in ARDS: a critical appraisal of the ARDS network trial and the recent literature>

The objective of this commentary was to compare the design and results of randomized trials investigating prolonged glucocorticoid treatment (≥ 7 days) in patients with ARDS, and review factors affecting response to therapy, including the role of secondary prevention. They concluded that prolonged glucocorticoid treatment substantially and significantly improves meaningful patient-centered outcome variables, and has a distinct survival benefit when initiated before day 14 of ARDS.

Click here to read the recently published commentary in Intensive Care Medicine.

Meduri GU, Marik PE, Chrousos GP et al. Steroid treatment in ARDS: a critical appraisal of the ARDS network trial and the recent literature. Intensive Care Med. 2008; 34:61–69.


Experts Indicate Methylprednisolone May Save One in Six Treated Patients (Approximately 35,000 patients in the U.S. a Year)

The objective of the recently released study was to determine the effects of low-dose prolonged methylprednisolone infusion on lung function in patients with early severe ARDS. Dr. Meduri and the other investigators concluded that Methylprednisolone-induced down-regulation of systemic inflammation was associated with significant improvement in pulmonary and extrapulmonary organ dysfunction and reduction in duration of mechanical ventilation and ICU length of stay.

Click here to read the recently published study in Chest Journal.

Click here to read an editorial from Dr. Djillali Annane on the use of certain steroids in ARDS patients.

Meduri GU, Golden E, Freire AX et al. Methylprednisolone Infusion in Early Severe ARDS - Results of a Randomized Controlled Trial. Chest. 2007; 131:954-963.


Acute Respiratory Distress Syndrome (ARDS)

Education, care, support, and communication for patients, survivors, families, friends, medical personnel, and others affected by and/or interested in ARDS.

Acute Respiratory Distress Syndrome (ARDS) is an acute, severe injury to most or all of both lungs. Patients with ARDS experience severe shortness of breath and often require mechanical ventilation (life support) because of respiratory failure. ARDS is not a specific disease; instead, it is a type of severe, acute lung dysfunction that is associated with a variety of diseases, such as pneumonia, shock, sepsis (a severe infection in the body) and trauma. ARDS can be confused with congestive heart failure, which is another common condition that can also cause acute respiratory distress.

We at the ARDS Support Center (ASC) welcome you to our website.  It is our hope that you will find the information, and support you are searching for. To the left you will find links to the different sections of ASC.   

Answers to many of your questions can be found in the "Learn About ARDS" section of our website.  We are currently working on a search engine that will make finding answers to your questions much easier.  Please be patient.  If you are unable to find an answer to your question please do not hesitate to contact  members of the Support Staff  who will help you in any way they can.  If you would like to discuss what you are going through with someone else who has had a similar experience please select two of the support staff members who will be able to offer support and understanding.


 
We received the following letter from the husband of an ARDS patient. He wanted to share this information with others because he felt another family could be helped.


I am writing you because my wife is currently battling ARDS. Your site really helped our family understand ARDS a lot more. For this we are greatly thankful.

My wife's doctors say she has the worst case they have ever seen and had to use a couple of different treatments that we didn't know about. She is on what they call an ECMO. It's not a very common machine that they use. We were able to find some helpful information at the University of Kentucky medical library. I was hoping that you could post the site address for this information on your website to help other families learn of this treatment. The information is from the University of Michigan's website.

The address is:

http://www.med.umich.edu/ecmo


I believe that this information can help other families when dealing with ARDS and the ECMO machine.

Thank you for your time and support.

Sincerely,
Mark Lashley
 

The brochure "Understanding ARDS" is now online.


SARS (Severe Acute Respiratory Syndrome)

Much about the virus is a mystery. Here’s what’s known.


“What is my risk of catching it?”
Low, so far. In the United States 55 of the 69 victims have been recent visitors to China, Hong Kong, Vietnam or Singapore—the centers of the epidemic. The rest have been family members of those travelers or medical personnel who treated them.

“How can I tell if I’ve got it?
If you suspect you’ve been exposed and have a fever over 100.4 degrees, difficulty breathing, a dry cough, aches and malaise, call your doctor immediately.

“Is this a brand new disease?”
Apparently so. Researchers believe a mutant member of a virus family that also causes some forms of the common cold causes it.

“How contagious is it?”
Sneezing and coughing, experts say, can pass the virus and it has an incubation period of up to ten days. It may also linger on objects handled by a person with SARS.

“How can I avoid it?”
The surest way is to stay out of the most affected countries. Frequent hand-washing may also help. Though Hong Kong merchants nearly sold out of surgical masks, doctors say these are of limited help if not properly used.

“How is it treated?”
At this point, doctors can only treat the symptoms, not the disease itself. The good news: SARS’s mortality rate is relatively low. If you get it, you have a 96.5 percent chance of surviving.

“Is SARS related to ARDS?”
NO!! There is absolutely no connection between ARDS and SARS. If you are a surviving ARDS patient, you should have absolutely no concern that you are a prime candidate for SARS.


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