Today is...

my birthday! I have to admit that this is the first year I am beginning to feel my age... (43) it is just little things but they exist. It has been almost ten years since I had ARDS. Perhaps it is all catching up with me...

Sleep often eludes me... How about you?

After ARDS, I often find that sleep eludes me. Sometimes I am so tired and I may fall alseep early, but then, in the middle of the night, I lie awake. Of course, in the morning, I wake up tired and continue exhausted all day. I admit it is a big problem. And the strangest thing is that post ARDS, I have never had a nightmare even though initially, I had trouble falling asleep because I would have recurring thoughts relating to my hospitalization and the last five weeks in the hospital.
Now, I cannot tell you why this is still a problem but it is...

Quilt made in memory of gentleman who died from ARDS

HAMPSTEAD - A seventh-grade student at Hampstead Middle School designed and sewed a quilt as a tribute to Rick Taylor, a popular, well-respected maintenance man at the school, who died in January.
With clothing and photographs secretly provided by Taylor’s widow, Terry, Molly McEachern, daughter of Kathy and Barry McEachern, created the quilt as a surprise gift for her friend and classmate, Tim Taylor, Rick’s and Terry’s son. The two families are also friends. http://www.seacoastonline.com/news/rock/04152005/news/37234.htm here is our last one: http://ardsusa.org/images/quilt04lg.jpg

South Florida ARDS Fundraiser

South Florida ARDS Fundraiser! http://www.ardsusa.com/MakeaDifference.htm
Karapaloza will be May 14th at Quiet Waters Park in Deerfield Beach, Powerline Road between 10th Street and Hillsboro Blvd. (both are exits on 95).
The benefit is from 10:00 am to 6:00 pm. All proceeds from the raffle to benefit ARDS Foundation in memory of Kristen Southon, whose young life was ended too early.
Here is Kristen's story: http://ardsusa.org/ARDSstories7.htm
Her father, Thomas, is organizing this benefit in memory of his daughter, who he misses very much. For more info, email info@ardsusa.org

ARDS Survey Qs

http://www.ardsil.com/cgi-bin/ubbcgi/ultimatebb.cgi if you have not answered our online survey questions, check them out. I am hoping to present some of them (if I have enough responses) at ATS in May. Thanks!

ARDS Awareness Products Rock!

http://ardsusa.org/ARDS-Awareness.htm Check them out. Finally they have arrived and hopefully they will provoke conversation and some awareness!

Cash station advertising!?!!

I was at the cash station yesterday and could not believe that while trying to process my transaction, there were ads displayed... some before I could get to my desired page and others while I waited for the transaction to complete. There is no way to get away from it. I will say though that I have absolutely NO recollection regarding what those ads were for so at least for me, it was not money well spent!

Has anyone noticed how many ARDS/pregnancy stories there are?

This is something that I have noticed for years, the number of women who get ARDS right before or right after giving birth. I do not know the 'whys' of this, but it is something that I continually see. After hearing all of these stories, I felt compelled to see if there was any info relating to ARDS & pregnancy and I did find some. I never thought that when I was having kids, ARDS was a potential risk but sometimes it does seem that anyone who is hospitalized for just about anything, is at risk.

Bird Flu...pandemic???

The above remarks by US Health and Human Services Secretary Mike Leavitt, support the comment that an H5N1 infection of a 34 year-old physician at Vietnam-Sweden hospital in Quang Ninh led to the executive order of April 1, allowing the US to quarantine bird flu cases.The monitoring of the outbreak in the US has been elevated to a daily briefing, which almost certainly includes additional notifications of unusual events. Therefore, when the physician developed Acute Respiratory Distress Syndrome (ARDS) on Friday, April 1, in Vietnam (Thursday night in the US), he was probably tested with a quick test for H5N1. When he tested positive, an alert was issued.This alert then went to HHS in the US, which resulted in the recommendation for the executive order, which was signed on April 1.It is unclear if the three suspect bird flu cases at the hospital were patients who were recently admitted because of bird flu symptoms, or were patients who were tested because there was a concern about further H5N1 transmission within the hospital.In either event, ARDS, followed by death on Sunday without a known source, has provided yet another signal that the flu pandemic of 2005 has begun. H5N1 that is efficiently transmitted to humans appears to be generating a range of outcomes. The family of five in Haiphong appears to be on the way to recovery. Results on their neighbors, admitted on or about March 25, have not been released. The family of five was H5N1 positive, clearly showing efficient transmission.Although there has been minimal or no reporting of H5N1 in poultry in Thai Binh, Haiphong, and Quang Ninh provinces, the three adjacent provinces each have set a record related to efficient transmission (longest transmission chain, largest cluster admitted on the same day, first fatal infection of a health care worker - from an unknown source).Thus, H5N1 is clearly transmitting efficiently in northeastern Vietnam. However, since many of the cases are mild, most of this transmission is not being detected and/or reported. The time between this efficient transmission in northeast Vietnam, and a pandemic resulting in millions of fatalities may be weeks or months, but the efficient transmission is the missing requirement for the start of the pandemic, and that requirement has now been met.

Prince Rainier passed away from lung infection

Prince Rainier, 81, of Monaco, has passed away from a lung infection. While no articles say that he had ARDS, it certainly sounds as though it could have been ARDS or ALI. Here is what one article said:

"His Most Serene Highness Prince Rainier III died on Wednesday, April 6, 2005, at 6:35 in the morning (0435 GMT) at Monaco's Cardiothoracic Centre following broncho-pulmonary, cardiac and kidney disorders," the palace said in a statement.
Rainier, who had suffered from heart and respiratory problems for several years, had been hospitalized since March 7. The palace said March 22 that he had been moved into intensive care after his condition took an unexpected turn for the worse."

http://abcnews.go.com/International/print?id=645105 The Pope had sepsis, which of course is one of the big precipitating causes of ARDS. And Prince Rainier had what sounds like it could have been ARDS... Still, no one knows what these are or how potentially deadly they are.

13 month old infant dies from ARDS after a bone marrow transplant

Cold overwhelms baby with medical problem Community was pulling for 13-month-old boy with a rare disorder. But the baby who loved music and dancing, in the end, was killed by a cold. By Andrea Sudano Daily Breeze
Nicholas Burns, the El Segundo infant whose battle with a rare and deadly immune disorder sparked an outpouring of community support, has died.
He was 13 months and 25 days old.
Surrounded by family and friends at the Mattel Children's Hospital at UCLA, Nicholas died of respiratory failure Tuesday, said his father, Dave Burns.
Nicholas developed acute respiratory distress syndrome after an otherwise successful bone-marrow transplant to fight hemophagocytic lymphohistiocytosis, or HLH, a disorder that causes disease-fighting histocytes to wreak havoc on healthy tissue.
Diagnosed with HLH in late April 2004, Nicholas underwent a bone marrow transplant in December. He recovered nicely, his body regenerating its immune system and defeating HLH.
But in the end, a cold killed the baby who loved music, dancing and smiling, Dave Burns said.
"He just picked up a bug," he said. "We don't know. He was being treated for a minor (problem) regarding his medication. He just got sick."
Released from the hospital in mid-January, Nicholas re-entered the facility on Feb. 22 and remained on a ventilator until Tuesday, said his mother, Stephanie.
News of Nicholas' initial diagnosis prompted a rally of support in close-knit El Segundo as well as throughout the South Bay, with people organizing various blood drives and fund-raisers.
Diane Wride, a colleague of Dave Burns at the El Segundo Fire Department, helped coordinate efforts to make improvements at the Burns' home in anticipation of Nicholas' homecoming.
"(The news is) devastating with everything he's been through," she said. "He beat all the odds. It was never a possibility in my mind that he wouldn't make it."
Throughout Nicholas' fight, the couple was astounded by the community outreach, which ranged from emotional support and encouragement to donations toward medical bills totaling nearly $3 million, Stephanie Burns said.
"There's nothing that makes the loss of your child easier, but I certainly wouldn't want to walk down this road without the support we have," she said. "I know we are lifted and carried by hundreds of people around us that only want to do whatever they can."
Memorial services for Nicholas have not yet been finalized.
Find this article at: http://www.dailybreeze.com/news/articles/1442277.html

Sadness...

The Illini just lost :((((( To come so far, to keep making incredible comebacks within the game and then to lose... And on top of it, no Chief! Adding insult to injury.

Well, they had a great run, and it was a lot of fun to watch them make their way to the last dance.

Study Provides New Estimates of Causes of Child Mortality Worldwide

Another study that evidences the seriousness of sepsis and pneumonia and the role that they play in deaths worldwide. As you know, many people, adults and kids alike, have sepsis and pneumonia as their precipitating causes to ARDS.


http://www.jhu.edu/~gazette/2005/04apr05/04child.html

Seventy-three percent of the 10.6 million child deaths worldwide each year are the result of six causes: pneumonia, diarrhea, malaria, neonatal sepsis, pre-term delivery and asphyxia at birth. Researchers at the Johns Hopkins Bloomberg School of Public Health and the World Health Organization have developed the most accurate estimates to date of the causes of death of children under age 5. The estimates, which are published in the March 26 edition of The Lancet, will help guide public health policies and programs that address child mortality worldwide.

According to the study, four communicable disease categories account for 54 percent of all child deaths globally. Pneumonia accounts for 19 percent of all child deaths; diarrhea, 17 percent; malaria, 8 percent; and neonatal sepsis, 10 percent. Undernutrition is an underlying cause in more than half of all deaths before age 5. More than 37 percent of all child deaths occur during the first 28 days of life, the neonatal period. The researchers noted that child mortality is greatest in Africa. The study shows that 42 percent of child deaths under age 5 occur in Africa, which is also where 94 percent of all child deaths attributed to malaria occur.

3.8 million deaths worldwide!

Do you get Parade Magaine? In today's paper, the issue of Parade Magazine has an article about a group of physicians who serve at Brigham and Women's Hospitals new Division of Social Medicine and Health Inequities. The article lists ACUTE RESPIRATORY INFECTIONS as the highest killer worldwide, the number of deaths numbering 3.8 million. In second place, with 2.8 million deaths, is AIDS. After that, Diarrheal Diseases with 1.8 million, TB with 1.6 million, Maleria with 1.2 million, and finally, Measles with .5 million. The article is not yet online but in about a week or so, it will be at http://archive.parade.com/2005/0403/0403_doctors.html

Go Illini!

Today is the big day for Univeristy of Illinois' basketball team. Much anticipation. I spent seven years (college and law school) at U of I and my twin and two brothers also attended college there. I have endoctrinated my kids already. We will be watching tonight... how about you?

D0 you ever do this?

I used to always look around me to see if anyone has a trach scar. I once said something to my pulmonologist that I never see anyone with the tell tale 'hole in the neck' and he said, "I see them all the time!" Duh. It is his patient practice. I think in the almost ten years since I have been out of the hospital, I have only seen a handful of trach scars. I used to obsess abut it, but then I realized I was an 'old, married woman with kids' and if that was the worst visual thing about that happened after my ARDS, I could live with that.

Welcome

Welcome to the ARDS Blog, a place where people can find others who have been affected by ARDS, to comment on issues of the day, vent, talk, even find humor in all that has happened with their Acute Respiratory Distress Syndrome experiences. Even though there is a message board on the ARDS Foundation website, here we can comment on issues that come up and can be explored more deeply and on a personal level. Come along for the ride...