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ARDS WEEKLY SUPPORT NEWSLETTER

http://www.ards.org

12/11/00

I would like to start out by thanking you all for your understanding and well-wishes last week. I am pleased to say that I am feeling much better. And so, here is the newsletter for this week.

Reminder - For those of you who have Microsoft Word, I have also attached the newsletter as a Word file.

Special People in Critical Care

Balram Sharma underwent valve replacement and bypass surgery recently and developed breathing problems which resulted with him being put on a ventilator. He was on the ventilator for 5 days and then taken off. He had started to eat and even walked a bit. He again developed breathing problems and was put back on the ventilator. His kidneys are beginning to function again and he is requiring less oxygen at this point. 

Becky's father was moved out of ICU and into intermediate care last week. He has been off the ventilator for 4 days. His saturation is staying in the 90% range unless he coughs and then he does need some assistance by bagging. He is talking to the family by plugging his trach. He is receiving some oxygen through the trach. 

Betty Scranton is in ICU at Memorial Hospital in Lake Charles, Louisiana. Prior to admission to Memorial Hospital she was at another hospital where she was fighting a bad bladder infection and progressed to pneumonia and ARDS. An exploratory surgery was done and was negative for cause of infection. She was placed on a ventilator and subsequently was transferred to Memorial Hospital. At this point she is breathing with assist only. She can write sometimes and can move. They are trying to wean her off the ventilator. 

On November 24, Carrie's grandmother was admitted to the hospital with pneumonia. She was moved to ICU the second day, the third day she was put on a ventilator. They performed a scope biopsy and the ARDS diagnosis was made. 

David Stokes has been diagnosed with ARDS and is in Mongomery Baptist Hospital in Alabama. A biopsy was performed on David and we haven't received the results yet. 

Dorthdel Gaston continues her battle with ARDS in a Wisconsin hospital. Family members are with Dorthdel as much as possible. 

Dexter Barlow is hospitalized at Holmes Regional Medical Center in Melbourne, Florida, where he is battling ARDS. He is still having some problems with weakness, but is walking with the walker with assistance. His physical therapy is progressing. 

Franc Marmero is battling ARDS in Our Lady of Lourdes Hospital in New Jersey. 

Joyce Lester's friend Gunichi Yamashita (Yami) had open heart surgery on November 15. He is 70 years old. He had two heart attacks; one before surgery and one during surgery. On December 2nd they were told he had ARDS. He is on 100% oxygen. 

Justin West continues his battle with ARDS. He is on 100% oxygen and his peep is at 52. He is very sick. He has an infection. He is not doing very well at all. Justin continues to receive the Cytoxin. 

On November 17, Kenny was taken to the hospital in Pensacola, Florida and diagnosed with aspiration pneumonia. At that time he required a ventilator for assistance with breathing. He progressed to ARDS. He is receiving antibiotics and a special infection team has been called in. He is scheduled for a CAT scan to help determine the path of future treatment. His lungs are "shutting down" because of an air leak during a tube insertion. 

Kyle Geer has been hospitalized with ARDS complicated by multiple organ failure. He is 15 years old. The last we heard, he was out of PICU and breathing on his own. 

Morgan Kurchak’s great aunt was admitted to the hospital about the first of December due to pneumonia. She has been on the ventilator and is scheduled for surgery on December 11 to have the lower right part of her lung removed. 

Roger Cannady's sister-in-law is in ARDS crisis in St. Luke's Hospital in Springfield, Missouri. She was in a car accident and then several days later had surgery to remove a cyst. Following the surgery she developed ARDS. 

Ruby has been moved to the LDS Hospital in Salt Lake City. She is making progress regarding ARDS but some other problems have arisen, including the discovery of some white brain matter damage. 

Prayers of Sympathy

Roy Lee passed away on November 18th

Debra Handville passed away on November 25th

Betty Brown passed away on November 28th

Survivor News

Becke Viada went home on her birthday December 3. Husband Chuck writes "it is good to have her home and as feisty as ever." 

Betty Horan has been home for a week now. Her appetite is improved and she is still eating her foods pureed. Betty's voice is still very faint. Visiting nurses and physical therapist do come in work with her. 

Dave Perun is 38 years old and was diagnosed with ARDS. He is in University Medical Center in Syracuse, New York. He has now received a different diagnosis and is off the ventilator and breathing on his own with oxygen. 

Debby is now off the oxygen and she is no longer receiving visiting nurses or physical therapy. Debby did have an episode of nausea and vomiting and was readmitted to the hospital, at this point it does not seem related to her cancer or her ARDS. 


ARDS survivor, Diane Mack, was to have surgery to repair her colostomy and remove the nephrostomy tube from her kidney. The surgery was postponed until later. 

Diane's 70-year-old mother, Evelyn, had her trach removed on November 11 and she is able to talk and swallow. No further updates on her condition were received. 

Jerry Adamson’s feeding tube will soon be removed. A meeting has been scheduled to discuss the possibility of releasing him from the hospital. 

Sandi is still weak. She is going to get her hair done this week with her mother who she lives with. Sandi will be getting a computer and able to communicate with us herself soon. 

Stephanie Killinger has been off the vent. She was moved to a regular room on December 3. She will go to rehab at University of Pennsylvania. 

Those Wishing to Communicate with Others

Preston Wilkinson is a 3 1/2 year ADRS survivor and hopes to offer support to others who are going through that horrible experience. serp7@qwest.net

Other News

IMPORTANT ARDS INFORMATION

ARDS Review Article - The ARDS Support Center has received an article that was printed in the New England Journal of Medicine. It is titled "Medical Progress: The Acute Respiratory Distress Syndrome" which was written by Dr. Matthay and his colleague Dr. Lorraine Ware. Dr. Matthay sent us the article. He is the ARDS Investigator at Moffitt Hospital, which is affiliated with the University of California, San Francisco. This center is part of the ARDSNetwork. After reviewing the article, we find it to be the most comprehensive and up-to-date article we have seen and encourage all those who have a loved one in ARDS crisis to obtain a copy and discuss the article with the attending hysicians.

The article appears in the New England Journal of Medicine, Volume 342, Number 18, pp. 1334-1349 in the May 4, 2000 issue of the magazine. Check with your hospital library to see if they have this issue of the magazine. A copy of the article may be purchased from the New England Journal of Medicine. To do so log on to the Internet and enter www.nejm.org on the address line. On the Home Page select "Search Past Issues." The "Search the Journal" page will be displayed. On the Author line enter "Matthay." The result will be a display of nine items. You will find this article under the caption, "2000: Volume 342." Click on the title of the article and on the following display click on complete article. This will give you the Customer Service and Ordering Information form.

Another article in this issue that is of utmost importance is titled "Ventilation with Lower Tidal Volumes as Compared with Traditional Tidal Volumes for Acute Lung Injury and the Acute Respiratory Distress Syndrome," which was provided by the ARDSNetwork. You may view the abstract by clicking on:

http://www.nejm.org/content/2000/0342/0018/1301.asp

Your doctors should be aware of this extremely important research study.

ARDS Brochure: We need volunteers to deliver the brochures to local hospital ICU’s, educational facilities, pulmonary rehabilitation centers, etc. This is an excellent opportunity to meet the professionals at these facilities and let them know that we are out there and willing to help. We hope that you will find facilities that are interested in having an outreach program for families and patients going through the ARDS crisis. The brochure is an excellent source of information that is easy for the layman to understand. Please contact either Ken Jonah kenjonah@comcast.net or Wendy Jonah wjonah@comcast.net if you are interested in helping.

Also, the revised brochure which was further reviewed by the ARDS Support Board of Medical Advisors to reflect the latest scientific thinking, is now "live" on the website and can be accesses by going to www.ards.com .

I pray that you have a good week, and I look forward to hearing from you.

Warm Regards,

Diana Wagner