ARDS Stories

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JeanMarie is a 49 year old physical therapist who was working in two school district where she caught the usual colds from the kids. She was a previously healthy woman who had never smoked. On February 1, 2001, she went to school with a mild cold but came home coughing, with shortness of breath. That evening, her husband took her to Rhode Island Hospital where, by midnight, she was in the trauma unit in critical condition. JeanMarie was on a vent for forty-six days and the physicians expected her to die thirty-five of those days. Her complications included: pancreatitis, heart arrhythmia's, fevers, rashes, total white outs on her lungs, anemia requiring at least three blood transfusions, blood pressure fluctuations, and difficulty weaning from the vent. Prone positioning was what helped JeanMarie turn the corner. After another week in intermediate ICU, JeanMarie spent ten days in inpatient rehab and then an additional four weeks of home PT. JeanMarie also had another two weeks out patient PT and then she continues to exercise on her own. As a physical therapist herself, it was extremely frustrating for JeanMarie to experience not being able to roll over in bed or feed herself. Post ARDS. JeanMarie has a tendency to get more colds, sinus and lung infections, she has less endurance and occasional flashbacks. She also has pain in her points and knees. She did not work for about seven months after getting sick. She is now back to work as a PT. JeanMarie's Church provided a real life line for a long time. Not only were they there for nourishment in the form of dinners, but they provided prayer and support. They were there and remained there for the long haul. Steve, JeanMarie's husband, was the head of microbiology at RIH, and he was able to stay on top of all of the details of her illness and not only could research the Internet for the newest information regarding the antibiotics and treatments, but he could understand it as well. JeanMarie would like to help others who have a family member dealing with a loved one in crisis or someone who is going through recover of ARDS.

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ARDS The World is a Poorer Place: Jim McAuley

Jim's ARDS roller coaster ride began on Christmas Day. His daughter-in-law, Martina (Marty for short) was working the late shift, as she was an ER nurse. When she finished work to pick up her three girls and her husband, she asked Jim if had too much 'holiday cheer?' "No," he said, "I just feel all achy, hot and cold." Marty told Jim to take it easy, but a couple of days later, when Jim was still ill, a visit to the doctor produced a diagnosis of 'the flu.' Still, Jim would not rest, and on New Year's Eve, he was short of breath. He learned he had an infection and finally got on some antibiotics but a couple of hours later, while walking the dog, he collapsed. At the emergency room, he received oxygen, and was admitted into ICU, mostly as a favor to Marty, who worked at that hospital. Right before midnight, everyone left thinking it was pneumonia. At 5:30 AM on New Year's Day, the telephone rings. Jim has been placed on a CPAP machine, he had gone into cardiogenic shock, he needs intubating and transferring to a specialty ICU. When Marty saw the x- ray, she knew it was not good. She stayed with Jim while they prepared to intubate him, then took a couple of steps back to give them a bit of room to do their work. This is when Jim went into a cardiac arrest, which was difficult for Marty to witness but also for her workmates who knew she was watching. Finally someone put their arm around her and guided her out of the room.

Marty eventually went to pick up the rest of the family; she could not tell them what had happened and did not tell her husband, Seamus, until the following day. When they arrived in town, the doctor sat the family down told them Jim had had full blown ARDS, that he had a massive heart attack and predicted: "He won't survive the night"

This they were told many time. Comments like "you are only prolonging his death" and "He will be severely brain damaged" and "he will have no quality of life" and "will never leave ICU" were often told to the family.

Jim spent the next 131 days in ICU and fortunately for him, he has no memory of this at all. He had a whole list of complications along the way: another 2 heart attacks, Renal failure (dialysis), cardiac failure, DVT'S, stomach ulcers, trachy infection, gastrostomy, complete neuropathy anemia - requiring multiple blood transfusions, and he picked up a nasty hospital infection in his lungs and bladder.

But Jim has proved all of the medical professionals wrong and he made it out of ICU. He has had a couple of little set backs since being discharged from ICU. But that has been fairly insignificant compared to what he has been through. So, after 209 days, Jim transferred to a rehab hospital. And though he still has far to go, he will be able to enjoy his wife, his children and his grandchildren. He still has a lot of living left to do and lot of wisdom to share.

Jim is now in rehab, beginning to use a walker, and take aqua classes to twice a week. This weekend is Father's Day in Australia and the family is looking forward to a BBQ celebration with Jim; the following weekend is Jim's wedding anniversary and the family hopes to bring him home for that celebration as well. In any event, next Christmas, they feel certain Jim will definitely be home. The journey was a long one, but definitely worth it. As Marty says: "All things are possible until they are proved impossible."

Jim spent his first nine months of 2001 in the hospital fighting and successfully recovering from ARDS. His doctors called him their miracle man. He spent the next year learning to walk, talk and swallow.

Jim' son, Seamus, made a promise to him that one day he would bring him back to Ireland (they have lived in Australia for the past 35 years) to visit his brothers and sisters once he was well enough to make the journey. And in May, 2007, they made the journey. Jim was excited as he had not seen some of his siblings in over 35 years. To break up the trip, they had a stop over in Singapore. On arrival in Ireland, Jim was obviously tired but thrilled to meet his brothers & sisters. He had a slight cold and jet lag but otherwise felt great..

He had yet to meet some of his brothers who lived further up north and the plan was to travel further north on the weekend, but on the spur of the moment on the second day they decided to change plans and visit the brothers that day. On the third day Jim's cold got worse and he had a fever; his sister booked an appointment with her doctor, who after a quick listen to his chest suspected he had pneumonia and had him admitted to hospital. No one was overly concerned at this stage as Jim had good O2 levels and he was in good spirits. In retrospect, the admission was exactly the same as his admission in 2001. Then history repeated itself... in the early hours of the morning he collapsed and was placed on the ventilator, family was called and prepared for the worse. It was like dejavu, only this time he was thousand of miles away from his family in Australia. There was a frantic dash in getting passports and booking flights for his wife, daughter and her family. The next two months was a rollercoaster ride just like the first time; there were the talks about "not to resuscitate" they got the same grim picture, he had the dialysis, the cardiac arrest, but this time he had more severe heart problems and it was this in the end that took him away from his loving family.

His remains will return with his family at the end of this month so another service can be held in Australia. Although a special man was lost, his family is thankful for those extra 'bonus' years they were able to enjoy with him. Jim has shared the birth of two grandsons, five Christmas, many birthdays, two granddaughters starting high school, his daughter settling into her own house with her partner only walking distance to them, many memorable moments in nearly six years.

On July 17, 2007, Jim McAuley's funeral was held in Northern Ireland in the church he was married and both his children where christened. The world is indeed a poorer place...

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Mark A. Lowery, an attorney in Boston, Massachusetts, battled ARDS in August-September 1998 following emergency gall bladder surgery. Mark's gall bladder became necrotic and he developed gangrene, with accompanying severe sepsis and blood infection. As with most ARDS patients, Mark almost died.

The ARDS hit Mark contemporaneously with his surgery and was confirmed by the first post-surgical x-rays. He was on the vent for 16 days, intentionally paralyzed, placed in a drug-induced coma, and placed on steroidal inhalation medication. This was the generally preferred course of battling ARDS at the time. Mark was taken off supplemental oxygen two days later and discharged from the hospital six days after coming off the vent. He stayed in a special section of the hospital for another five days for physical therapy evaluation and additional antibiotic treatment; with blood cultures to ensure the infection had been eradicated. Post-ARDS, Mark underwent physical therapy over a period of a few months to recovery my strength and stamina.

To read Mark's entire story, please (click here)

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Thirty-six year old Sandra Bell Meyer remembers that her first symptom to her ARDS odyssey was swelling in her right eye. It was June of 2001 and she did not go back to work after that day. She went to her family physician four time times in a week, but they could not find any elevations in blood count and had no idea what was wrong with her.

By this time, edema had set in and Sandra's slim, muscular body had swollen with edema to resemble an overweight person. She was finally admitted to the local hospital. Sandra has no memory of what happened from that point until she woke from the coma. Her organs failed, her gall bladder was removed, had sepsis and went into shock. Sandra was finally transported to Wake Forest University Baptist Medical Center. Dr. Shane Maxwell was there to meet Sandra and checked on her every twenty minutes. Tests were run but a precipitating cause was not determined. Sandra received the best of care and her family stayed by her side the entire time. Brother Oakley and the entire congregation prayed for Sandra and to this day, they still do. She was on the vent for several weeks and acquired a pneumonia, which made it difficult to wean her from the vent. However, Sandra surprised the doctors and somehow managed to leave the hospital July 31, 2001.

Sandra had no physical therapy upon discharge; she was not sent home with oxygen. As soon as Sandra was well enough to drive and her edema was gone, she went back to work. (Sandra's body had swollen to an amazing 238 pounds.) However, at work, she received no empathy whatsoever. It seemed that most people she works with thought she had AIDS or was HIV positive. Her boss has told her that it must have been "something in her lifestyle that made her sick."

Sandra says that a good reason for her to be a part of this group it to increase awareness of this horrific disease. Her long locks began to fall out and what was left of them was stiff and unhealthy. She finally cut her hair. Today, the hair is growing back. She has gone through a lot of therapy for PTSD and feels very lucky to be alive. There were many prayers from congregations all over the United States. Sandra's family, though far away in distance, stays in close contact with her. Today, Sandra feels great! Sandra, her children and her family became much closer and they have all learned so about ARDS during her illness and recovery. She feels that now is the time to give back and help others. She would like to educate more people about ARDS and help them understand this terrible syndrome.

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Wendy remembers it just as clearly as if it was today. It was a Thursday evening and she was on her way out the door; she went to check on her mother, Sarah, and she said that she said she couldn't hear or see Wendy. She was asking who she was and what she wanted. Immediately, she knew something was wrong, but Sarah wanted to wait until later to go to the hospital.

Wendy told her Mom that she loved her and went to work but at about 5:30, someone told Wendy that she had to leave, someone was going to take her home. Wendy did not understand until her husband told her that they did not think her mother was not going to live, and they drove to the hospital.

When they arrived, Sarah was having seizures and was already on the vent. Unfortunately, Wendy was already familiar with this scenario as Sarah had been diagnosed and survived ARDS two year earlier. At that time, the physician who treated Wendy's Mom had told her that Sarah would have it until it took her life but Wendy had done some research and knew that most people got ARDS only once. That is why Wendy and her family were shocked when they were told that Sarah had ARDS again but they felt confident that she could beat it a second time.

On Mother's Day, the day began like all the others in the hospital; no movements, no talking, nothing. Wendy saw Sarah before she went to church and asked God to give her a sign that she was still with us. Wendy received her sign and left in tears. For the first time, Sarah opened her eyes and stared into space. Wendy took her hand and said "Happy Mother's Day Mama" and Wendy saw a tear come from her left eye. She then told her, "Mama, if you know I'm here with you and you know I love you, please shake your head or squeeze my hand." Wendy said it once again and Sarah nodded slightly. That was the beginning of her recovery. Sarah came off the vent within a week but the family was told that she was without oxygen for at least 10 minutes so there was possible brain damage. Sarah had been on the vent for fourteen days during the second bout with ARDS; the first time she had only been on the vent for ten days.

Wendy thought that they could work through whatever they needed to. Sarah was transferred to another hospital for long term care. She had trouble with concentration. She was there a month and had been finally approved for a rehab. But Sarah would not go; she was determined that she was coming home. She called me and begged me to tell them it was safe for her to come home. Wendy knew that it was not safe for her to come home. The social worker said that she would not live a week if she returned home and Wendy agreed. But Sarah was determined to come home and at first, she did very well at home.

But in the end, Sarah died on July 12, 2002, in her home, the way she wanted. She spoke to Wendy the night before, her last words to her, "Wendy, I love you." And Wendy said, "Momma, I love you, too."

The next few days were a blur for Wendy. She had to plan her funeral, which was the hardest part of it for her. It is still difficult, she feels helpless at times, but Wendy feels she wants to reach out to others who are coping with a loss from ARDS, and for those who have a loved one in crisis.

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57-year old Greg Fleckenstein was admitted to the hospital on April 8, 1998, for what was supposed to be a rather routine arterial bypass on his right leg. Prior to the surgery, Greg was a Professor at Baker College, teaching mathematics, when he suffered a stroke during a 1994 lecture. That abruptly put an end to his 24-year career. Greg had also been an avid pilot and had designed an aviation program at the college as well. Since Greg's stroke, he has not flown a plane, or even driven a vehicle.

Post surgery recovery appeared normal and Greg was discharged on April 11th. Greg's wife, Nancy picked him up from the hospital and she was confused because Greg had not packed and was not dressed; during the 25 minute drive home, Greg acted odd and Nancy could not comprehend much of what he was saying. At the house, Greg needed the assistance of three neighbors to get out of the car. They carried him into the house and placed him into the recliner. Four or five hours later, Nancy needed assistance again to move Greg.

Finally, at 9:00 PM that night, Nancy called the hospital to tell them what was going on and a half hour later, Greg was back. He was being connected to a vent, chemically paralyzed to prevent his 'fighting the vent.'

On Easter Sunday, and the following Monday, Greg’s oxygen level continued to fall. Nancy and one of Greg's daughter’s were called for a meeting with several doctors, and they said that Greg was not expected to survive the night. As relatives from near and far heard, they flew in to say their good-byes and assist with funeral arrangements.

Greg's first recollection was awaking with a painful and scratchy throat, unable to move his body or to communicate at all. He had no idea why anybody was there or how many days had passed. Greg's older brother explained all that had happened to him; the nurses would go through the alphabet with Greg.

Nineteen days later, Greg had shown enough improvement that the vent was removed and he spent another two weeks in the Progressive Care Unit. Greg has some permanent lung damage that makes it difficult when engaged in even the slightest exertion and still has a lot of anxiety daily as memories of almost not being able to breathe or move or communicate come over Greg.

After this first episode of ARDS, Greg has amazingly had two subsequent episodes with ARDS. The second was in June 2000, and the third was in June of 2002. After the June, 2000, episode, Greg had signed a DNR, but his wife and son challenged the DNR and the physicians agreed to wait for five days to determine if Greg would be able to make improvement, which he did. Currently, Greg lives with Type 2 diabetes and a urostomy bag due to the fact that his bladder and prostate were removed from cancer years ago.

Greg believes that he obviously has much more important work left to do on this earth, which is why he has time and again fought the ARDS, with the love and prayer of others as well, and he knows that he still has a story to tell and support to lend.

On March 22, 2003, Greg Fleckenstein passed away. Our condolences go out to his wife, Nancy, and his family and friends. Greg's work touched so many and he will be missed by us all. He knew that through music, people could relieve their suffering, and he helped so many suffer a little less. Greg was truly doing G-d's work, and we are grateful for that. The status of the Music Ministry has not yet been determined but as soon as we learn, we will let you know.

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Thirty-six year old Cyndy Villegas was just returning to college after spending 13 years at home raising her daughter. Cyndy was into her third semester of studies when she learned that she needed to have her ovaries removed. She already had her uterus removed five years earlier due to endometriosis.

On Friday, August 16, 2002, Cyndy was admitted to the hospital for her surgery. Six hours later, in recovery, she was doing well, up and walking, and felt fine. Two days later, on Sunday, Cyndy was having a difficult time getting her breath and felt as though she was having an anxiety or panic attack so she called the nurse. She could not get any air in at all. Suddenly, Cyndy was being transferred to ICU.

Cyndy protested the transfer; she was supposed to be discharged from the hospital the following day. Once in ICU, Cyndy was intubated and forced in a drug induced coma so she would not fight the machines that were attached to her body to save her life. Cyndy was on the ventilator for ten days; when they decided to see if she was able to come out of the coma and off the vent, she surprised everyone and began her recovery miraculously quickly. The doctors were shocked at how quickly Cyndy was able to recover at that point and after reading many of the stories of other people stricken with ARDS, Cyndy is also shocked as well.

Although initially Cyndy was so deconditioned that she could not move her muscles, she worked herself back in days. Her feeding tube was removed immediately and she was able to eat solid foods. Three to four days later, she was moved to the regular floor and physical therapy began. Cyndy used a walker for a couple of days, but after that, she was walking on her own.

Cyndy has quit smoking. She is not as active as she used to, but still, it has only been two months since she was released from the hospital. She does not want to over do it, and is listening to her body. Post ARDS, she is still on inhalers, and they tell her that she may be for the rest of her life. Sometimes Cyndy feels as though she does not fully comprehend her whole story...she is missing the picture, and sometimes feels as though it has not completely hit her. She is grateful to be alive but the realization that she was so close to death, at times, is daunting. Still, in the end, she realizes that it has only been a short time since her discharge and she will learn more about ARDS and she may also recall more about the experience as she makes connections with others in the ARDS community.

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Forty-six year old Emma Johnson, who lives in a small, southern town in Georgia, has been married for twenty years to Jack, and has two dogs, who are spoiled rotten. By the way, she is an ARDS Survivor.

In late March 2002, she was healthy, albeit overweight, and planning a surprise 50th birthday party for one of her three sisters. At the party, everything went great on Saturday, but on Monday morning, Emma felt like she was coming down with the flu, which she gets quite often. Immediately, she went to see her doctor on Tuesday and began medications. A few days later, Emma was worse. The doctor told her to give the medications a full week, but the following Thursday, not only was Emma not better, but also very lightheaded.

Emma's mother took her back to the doctor, where she felt like fainting while waiting to see him. The doctor changed her meds, but on Sunday night, Emma's oldest sister, a nurse, made her go to the emergency room. There she was told that if she had waited one more hour, she would have been dead.

The next morning, Emma was intubated and taken by ambulance to a larger hospital, Phoebe Putney Hospital in Albany, GA; her family was told that had she not been intubated, she would not have survived the trip. For the next two and a half weeks, Emma remembers little. She pulled the ventilator out after a few days, even though her wrists were tied down. Her doctors decided to leave the ventilator out and monitor me closely. Then her lung collapsed and Emma was intubated again for another 6 or 7 days. The chest tube came out, her lung collapsed again and in went the chest tube, again.

At the hospital, Emma was tested for everything to determine the cause of her illness; finally, the diagnosis was made: ARDS? No one in Emma's family, except her sister, a nurse, or any of her friends had ever heard of this nightmare. Emma spent two months in the MICU, a week in a regular room, and two weeks in a rehab center. Emma lost forty-five pounds, and was extremely weak when she came home in June on oxygen twenty-four hours a day, seven days a week. Emma was dependence on others for everything initially. Eating a meal was an ordeal.

Initially, Emma improved her oxygen, was down to 2 1/2 liters of oxygen, but then her breathing worse and she went back to the emergency room. After that visit, Emma's oxygen level has gone up to 4 liters, and she has had numbness in her fingers and hands; her ankles, feet, and hips aches all the time and she has gained all of her weight back and then some... Emma has daily cravings for sweets, which she had never had before, her hair was also falling out by the handfuls. She told Jack, her husband, to start looking for wigs...

At times Emma feels very guilty because she did not feel like she was as appreciative of life as I should have been. She felt that she still took things for granted. She was so focused on herself and how this illness affected her life, not considering what it had done to her loved ones. Her mother, who is a saint, has been Emma's lifeline, and she really doesn’t know what she would have done without her, she husband and her sisters. When Emma wonders if she would ever be well again, feel normal, and if so, how long, she again feels selfish. I felt very selfish at times, wondering if I would ever be well again, normal again and if so, when? But it is hard not to wonder if this will ever happened?

Since Thanksgiving, things have improved dramatically. Emma is on the oxygen on an "as needed" basis. All the aches and pains have gone. Her hair stopped falling out and she can see little tufts growing! There are still a lot of things that Emma cannot do, but "hey, I'm alive. I was here to celebrate Christmas with my family, and I have a new year to look forwarded to."

Emma has corresponded with a few people whose stories were listed and it has helped her a great deal. She no longer felt so alone and afraid.

Emma wants to help anyone that feels the need to talk with someone who has been through this, any questions they may have or just wanting someone to listen to them.

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Five years ago, twenty nine year old Brenda Ramsland, who lived near Baltimore,
MD, at the time, learned that she was pregnant on her two-year-old daughter's birthday. Though she was joyous, she soon became very ill; the doctors called it morning sickness. But Brenda had previously had morning sickness with her last pregnancy and this was much worse; she was hospitalized eight times for dehydration, and lost ten pounds in her first trimester. Brenda was unable to care for her two-year-old daughter because she was ill all the time but luckily, her mother and mother-in-law were able to assist in her daughter's care.

At about twenty weeks, the so-called morning sickness subsided. Everything seemed relatively calm for about three weeks... And then, at about 23 weeks gestation, Brenda suddenly began to have premature contractions. She again became a frequent hospital visitor. Seven trips in two and a half weeks, an IV with fluid, a shot of Terbutiline, and Brenda was sent on her way. Finally, at about 25 1/2 weeks gestation, Brenda's physicians decided to investigate to determine why she continued to have these concerns. What the doctors discovered was that Brenda's iron level was critically low. Brenda thought to herself, "Why wouldn't it be?" she had hardly been able to eat solid food for the past five months.

Brenda was put on a continuous dose of Terbutiline and they gave her a blood transfusion. The morning after the transfusion, Brenda awoke with chest pain and shortness of breath. She told her doctor, who listened to her lungs and heart. He declared that it was just anxiety and symptoms of taking so much Terbutiline. Brenda was sent home again. This time she was told to stay on bed rest and ordered to take Terbutiline every four hours. About five hours later, Brenda's chest was really hurting and she could not catch her breath. Brenda went back to the hospital and was admitted.

The doctors ordered a lung scan. During the lung scan, Brenda started to spit up bright red blood. Brenda spent the next day in the labor and delivery ward. She received oxygen through a mask. The pulmonologist, who had been called in, had Brenda moved to the ICU of the hospital. The labor and delivery nurses came up every fifteen minutes to check on the baby. Things kept getting progressively worse. Brenda was told that she would be intubated and that the baby must "come out," but she and her husband were not ready to give up on their baby. They wanted to give the baby every chance that they could.

The doctors had made it clear that Brenda had ARDS and would probably not survive and Brenda thought that if she could give her baby just a few more days, perhaps she would have an opportunity to survive.

Brenda was intubated and put on the newest ventilator that the hospital had, which was apparently a very high tech one, according to Brenda. Brenda's lungs slowly began to heal. Her systems also began to recover. But then another problem arose. Brenda developed preeclampsia from the stress of the ARDS. It was quickly turning into eclampsia. On the forth day that Brenda was on the ventilator, Brenda delivered her baby. She was 2lbs, 3 oz. Brenda was taken back to the ICU. Two days after she was born, Brenda was extubated. The day after that, Brenda was moved to a regular room. Brenda spent another week in the hospital, a total of 15 days, and then she went home, breathing on her own. Brenda's daughter came home eleven weeks later, without oxygen support. Her name is Isabelle Hope--which means beautiful hope. She certainly fits the name.

Currently, Brenda lives in the Denver, CO, area with her family

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Marlene was born and raised on the West Coast in the United States. In l995, Marlene was diagnosed with PBC, an autoimmune disease, which attacks the immune system and destroys the liver. There is no cure for PBC, except a liver transplant. Marlene decided to change her life and enjoy her family to the fullest.

One day, Marlene began to have flu like systems, that lasted for about three weeks. She was not getting better and finally went to the hospital. When Marlene arrived, her pulse was so low, they could not believe it. They rushed her in and Marlene recalls the doctor telling her she had viral pneumonia and would be kept overnight. That was the last she remembered for a month. They said within a day Marlene was on life support and she never knew it but she even pulled out the breathing tube at one point and had to be reintubated; thirty-one days later, Marlene was awakened from her drug induced coma.

During the time that Marlene was ill with ARDS, she developed Sepsis. Marlene's doctors said her odds of survival were less than 3%. They tried every combination of antibiotics but none, not even broad spectrum worked; they gave Marlene an antibiotic that was the last line of defense and finally, that seemed to be the one that worked.

The love of Marlene's family surrounding her twenty four hours a day, sustained her. They read to her, talked to her, stayed with her. Marlene had no idea what emotions they went through. She was hospitalized for a little over one month. When she was discharged, her weight was forty pounds less than when she was admitted. Gradually, Marlene re-learned to care for herself. It took a full year for her to regain her health. Eventually, Marlene received a transplant. Marlene feels that she has been given another opportunity to live; she feels that God wants her here for a reason and she has plans to give back to others dealing with such health challenges.

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Twenty seven year old Nicole Milbury entered the world of ARDS Aug. 9, 2002. She went to the hospital, in labor with her second child; they had to do an emergency C-section due to the umbilical cord being wrapped around the baby several times. Post C-section, every thing appeared to be fine, until that evening, at which time, Nicole's blood pressure, and body temperature, bottomed out, and her blood count continued to drop significantly. The physician that was to care for Nicole over the next couple of days told Nicole's family that everything would correct themselves, and nothing was done until 8 a.m. the next morning. At that time, a nurse came in after shift change, and she couldn't help but notice that there was something terribly wrong and immediately took her to surgery. Surgery showed a very large hematoma, where Nicole had hemorrhaged for many hours, and they could not pump the blood back into her fast enough. Nicole had a partial hysterectomy due to damage from the bleeding, and post operatively; she was diagnosed with ARDS, taken to the ICU, and on a vent for 11 days.

Thankfully, Nicole's baby boy, Keyton, is healthy, and wonderful, but she has no memory of ever seeing him, until the day she got taken off the vent. Her husband, Ian, brought the baby and her 6-year-old daughter Kenleigh to finally see their mom.

Nicole currently sees many physicians for many ongoing issues, that they still cannot seem to resolve, but she is so grateful to be here, especially since the doctors told Nicole's family that she only had a 10% change of survival at one point, and somehow, by the grace of God over the next few days, things finally took a turn for the better. Nicole's respiratory therapist and her doctors say that she is a miracle! There was an angel watching over her!

Nicole feels so grateful to have a second chance at life! Nicole and her family reside in Bellbrook, OH.

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On April 5, 2002, Cynthia went to the ER after suffering severe abdominal pain for about 5 hours. She was diagnosed with kidney stones and a system-wide infection, which eventually turned into sepsis, a toxic condition resulting from the spread of bacteria from an infected site resulting from a blockage caused by one of the stones. Cynthia was put on massive doses of antibiotics and scheduled for minor surgery to bypass the blockage. That day, Cynthia was sent home but the following day, she was told that the infection had become much more severe than originally thought.

Cynthia was told to go to the hospital every twelve hours to receive antibiotics by IV. That evening, Cynthia went in for the first dosage and was scheduled to go back the next morning. But when she awoke, her fever had spiked to 104 degrees and she was having difficulty breathing. Cynthia's husband, Bryan, took her to the emergency room where they were amazed that she walked in herself, due to extremely low oxygen levels. Once they got her fever under control, her breathing returned to normal, but Cynthia was admitted to the hospital to await her surgery, which was scheduled in two days.

Cynthia has another episode of breathing difficulty the next evening. But what really bothered her was that during both of these episodes, nobody seemed to believe that there was truly anything wrong with her lungs. They all kept urging her to breathe deeply, and she felt that everyone thought she was having some kind of anxiety attack. Cynthia knew both yoga and tai-chi, and had successfully used deep-breathing techniques for years, so she would have slowed her breathing if she could.

The day of Cynthia's surgery, apparently everything went well until she was in recovery. At that time, she went into full-blown respiratory failure, and was quickly diagnosed with ARDS. Cynthia was sedated and put on life support; that evening, she was flown by Medivac to Harborview Medical Center in Seattle. She was kept in a drug-induced coma for two weeks, and while she has random memories of being awakened on occasion and of dreams she had while in the coma, her first true, wide-awake memories are from the day they woke her up completely… April 24, 2002: Cynthia's 47th birthday. What a fantastic birthday gift!

Of course, at first, Cynthia was extremely weak and absolutely dependent on somebody to do everything, from feeding to using a bedpan. She recalls setting goals for herself… first, to drink thin liquids again, since she choked easily after two weeks on the ventilator; then, to sitting up, to standing up, to walking to the bathroom. Cynthia achieved her goals fairly quickly; the medical staff told her what a quick recovery she was making.

But all Cynthia could think was, "What do you mean, quick recovery? I can't even use the bathroom by myself!" But then, at that time, Cynthia only had a very vague idea of what ARDS was and how deadly it could be. Cynthia did not know that while in the ICU, her family was told to be prepared for the worst on several occasions. But on her eighth day in a regular hospital room, they told Cynthia that there was no longer a medical reason to keep her in the hospital, and she was discharged. Cynthia and her husband stayed in Seattle for six more days so that Cynthia would undergo some outpatient physician therapy before flying back home in Ketchikan, Alaska, on May 8, 2002.

Cynthia feels very fortunate to say that she has few lingering effects from ARDS. She has had some wheezing and occasional shortness of breath, for which she carries an inhaler that is rarely used. In every other way, Cynthia is physically back to normal, which she took for granted until she began to read other people's ARDS stories and realized how so many never return completely to their former physical condition. Cynthia has often commented that she must have had a very "mild" case of ARDS, but when she discusses with her husband and son what went on while she was in the coma and when she reads stories of others who were not on life support for as long as she was but who have many more devastating effects to their health, she has to admit that it sounds like her recovery has been nothing short of remarkable. Cynthia feels she is a very strong person emotionally, and very determined, and she likes to think that had something to do with her quick recovery. That, and of course, the prayers and thoughts of many friends, family members, coworkers, and even people who didn't know her but knew that Cynthia was in a fight for her life!

After reading all the stores, she realizes that every case of ARDS is critical and life threatening, and often it is not the length of time that one might spend on the vent or in the hospital that will determine what sort of post-ARDS effects one might have, but she is grateful that she has come through this syndrome relatively healthy.

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On January 20, 2000, nineteen-year-old Penny took an overdose of prescription medication. When Penny was having her stomach pumped at a local hospital, the charcoal, along with a staph infection, went into her lungs. That night, she was flown to UW Madison hospital. Penny was put into a drug induce coma and given paralytics; her diagnosis was ARDS along with pneumonia.

Penny was in a coma for about six weeks. During that time, Penny had eight chest tubes inserted and several different breathing treatments. Soon after she woke up, Penny was given a tracheotomy. Although Penny does not recall much about TLC (trauma life center), Penny experienced many nightmares and hallucinations. At one point, she pulled her feeding tube out three times in one day and recalls doing it because she thought that the was a pencil stuck to it; of course, this wasn't true. She also recalls hearing many things while in her coma, which she realizes is contrary to what many in the medical field may tell families.

Soon after waking up, Penny was moved to a step down unit. In that unit, she continued occupational and physical therapy. Recovery was a slow process, as her lungs did not want to heal. She also came down with pancreatitis. While awake, the doctors put in Penny's 9th chest tube. There was discussed gluing Penny's lungs to her chest wall because they were not healing but soon thereafter, progress was made and talk was discontinued. In the end, Penny was on life support for two and a half months and in the hospital for almost three months. Throughout her stay in the hospital, Penny's family was by her side.

Penny's goal was to be out of the hospital by Easter and she was released on April 18th, right before Easter. When she came home she still had problems and continued OT and PT for two months at a local hospital. Today, Penny's lungs are almost back to normal. She seldom needs her inhaler and there are very few things she cannot do. She goes back for yearly checkups, and each time, her lungs are a little bit better. Penny is thankful for her second chance at life.

Without the prayer, love and dedication of Penny's family and friends, survival might not have become a reality. It is because of this, that Penny feels compelled to give back, to communicate to others, families and friends who have loved ones who are dealing with ARDS crisis, and also with the aftermath of ARDS. Even though at times others may question, or even judge, Penny's "precipitating" cause of ARDS, there are many others who get ARDS as a result of similar circumstances. Penny knows what it is like to have been there and her knowledge invaluable. She offers unfettered support and love, regardless of how that person ended up with ARDS.

"The future is not only tomorrow, but the next second that comes, and anything can happen in a second." Penny Kraemer

Photo-Penny in a coma

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Jennifer is a very recent ARDS survivor. Twenty-four year old Jennifer just got sick on March 4, 2003. She developed what she thought was the flu and when to the emergency room at St. Joseph's Hospital in Tucson, Arizona. Once there, they learned that her oxygen level was only 62%. After two days, they discovered Jennifer had viral pneumonia and sometime after that, she was diagnosed with ARDS.

Jennifer was completely sedated and paralyzed; they strapped her down while she was ventilated for more than a week. The doctors and nurses said that she was extremely close to dying. Jennifer was on the hospital the entire time she was in the hospital but luckily, did not need oxygen once she was discharged.

Though Jennifer had the support of her husband, and her parents, who came in from her hometown of Portland, Oregon, her three-year-old son was not allowed to come in to the hospital room. However, they posted photos of him so Jennifer could see him right when she awoke. The staff at the hospital was dedicated and Jennifer owes her life to them.

After sixteen days, Jennifer was released from the hospital and went home on March 19, 2003. She is very happy that she survived ARDS because so many people die from it. Jennifer is having flashbacks, having trouble sleeping through the night and having mood problems. She has been unable to stop crying and her motor skills are impaired. She has trouble signing her own name. Although Jennifer can get around physically, she quickly becomes short of breath and fatigued.

Jennifer knows it will take time to heal. This was a very traumatic life changing experience for Jennifer to deal with and she considers herself very lucky. She hopes that other survivors realize how lucky they are as well, to be alive if you have survived ARDS. Jennifer is very determined to be outspoken about this syndrome because it is virtually unknown. Blessings to those who have lost loved ones due to ARDS. Those who will always be in her heart.

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ARDS Family Member, Amy Sadler

July 21, 1999, was a day that would change the life of Amy Sadler and her family members forever. Amy lives in Michigan with her family. Her 49 year old mother, Donna Rose, had surgery for a routine hysterectomy. After the surgery, she had difficulty keeping anything down and vomited from Wednesday, July 21 to Friday, July 23. Finally, on Saturday, July 24, she was able to keep food down but that afternoon, she went into respiratory arrest. Donna could barely breathe and her pulse-ox plummeted to below 70. She was rushed to the intensive care unit and put on a Bi-PAP machine. Initially, her pulse-ox improved and Amy and her stepfather went home for the night.

In the early morning hours of Sunday, July 25, however, she was put on a ventilator and heavily sedated. Tests were performed and Swan Catheter was put in; her diagnosis was still forthcoming. Eventually, they learned she had ARDS. Donna experienced many problems including an unexplained drop in her platelet count and possible pneumonia. This complication made her take another very drastic turn for the worst after what was a steady upward climb over the course of 3 days. Donna's doctors never told the family of the very real possibility that she could die from ARDS. In fact, they continually reassured the family that she would NOT die from this.

When Amy researched the Internet to learn about ARDS, she also found the information regarding possible causes and the high mortality rate. When she questioned the physician about this, he belittled it and its source by simply saying that there was all kinds of misinformation on the Internet and told Amy that most patients who die of ARDS often die of organ failure due to another underlying cause such as AIDS. Amy later learned that this was not true.

On Donna's fourth day in ICU, Amy and her family made the decision to transfer her to another hospital, the University of Michigan Medicine Center in Ann Arbor. The family felt that this decision made the difference between Donna's life and death. Upon arrival, the medical team in the pulmonary ICU began performing their "last ditch efforts" to stabilize Donna and keep her alive. They put her in a drug-induced coma and paralyzed her so she would not fight against the high pressure settings on her vent and blow out her lungs. It was also to prevent her from feeling any pain associated with having her settings so high. She stayed paralyzed for one day but was in the coma for about 4 ½ weeks. They also rotated her position early on, including laying her on her stomach (a procedure known as Proning) in an effort to get some of the fluid to move out of the alveoli where it could be suctioned out of her lungs and tested for the source of infection.

During the first couple of days at U of M, Amy's family got an extensive education on the causes and effects of ARDS. They learned that Donna was in second-stage ARDS where the fluid-filled alveoli begin to develop scar tissue in them causing fibrosis to set in. The question was could it be stopped and could it be reversed? The doctors could tell them nothing about Donna's prognosis except that every day she was still alive she was a survivor. Not exactly words of encouragement. So for days and days, a vigil was kept by her bedside waiting for some sort of change.

No source of infection was found although Donna continued to have a fever of 100 or higher. Her other organs never showed any sign of deterioration or failure which was a bright spot indeed. So her daily regimen of care consisted of intravenous fluids, mega-dose antibiotics, respiratory care, and round-the-clock monitoring. At one point after the first or second day, Amy's family was approached by the head of the pulmonary department. He wanted to have Donna placed in a blind study to see if mega-dose steroids in second-stage ARDS were helpful in the recovery process. This study is known as the Late Steroid Rescue Study (LaSRS) and is being conducted by the ARDS Network. www.ardsnet.org.

Donna was placed in the study immediately; the family felt they should take advantage of any opportunity to increase her odds since there are no treatments known to work every time for ARDS patients and at the present time, there is no cure. Though they will not know for certain if she received the steroids or the placebo until the study is completed, they believe that she got the steroids.

About 2 weeks into her ordeal at U of M, Donna developed a pneumothorax and required a chest tube. The family was told to come to the hospital immediately as her pulse-ox had plummeted and they could not find the reason why. Amy lives two hours from the hospital and worried that she would get there to find her mother had passed away but was relieved to find that they had repaired the problem before she arrived. She was resting just as peacefully as Amy had left her that afternoon. That was the worst day of the experience, though there were many, many ups and downs along the road to recovery…much like riding a roller-coaster that is running out of control with no way to get off. It was difficult to hold on to the bright spots and almost unbearable to face another low one. It took its toll on Amy and her family. A couple times Amy and her stepfather found the stress of the situation too difficult and allowed it to scar their relationship.

After many prayers by friends, relatives and acquaintances and long hours of wondering and worrying, an attempt was made to remove Donna from the vent after five and a half weeks. However, she only made it for 24 hours before having to be placed back on the vent. At that time Donna received a trach. She came off the vent for good in six and a half weeks. Over the course of her ordeal, she also developed severe muscle myopothy which resulted in the loss of all of her muscle mass as well as her reflexes. Later x-rays would show that after her lungs began to clear there was a spot on the lung that had collapsed that was not clearing. Further testing would indicate that the spot was an abscess and quite possibly the illusive source of infection the doctors had been searching for. Antibiotic treatment cleared up the abscess.

Through it all Amy and her family tried to remain positive when they were in Donna's presence because they didn't know how much she was aware of what was going on around her. They held her hands and rubbed her muscles; moved her arms and legs as much as possible; assisted in her hygienic care; read to her and watched TV with her; filled her room with the cards she received and put pictures on her walls of family and friends; anything they could do to make sure she felt loved and cared for. When Donna left the ICU 4 days after coming off the vent she went into the general area of the hospital on the pulmonary floor. She experienced ups and downs there as well but eventually after about 10 days or so she went on to the rehab portion of the hospital where she was able to regain enough muscle control and strength to go home with oxygen and a physical therapist. By her date of discharge, Amy's mother had spent nearly 90 days in the hospital. After arriving home she began physical therapy and is still receiving it today. She goes back to her pulmonary doctor in 6-month intervals for evaluation. She has reached a plateau of roughly 65% of her original lung capacity. She will not be able to return to her former work because of her muscles, ironically, and not her lungs. She entered early retirement at the age of 51. She also has had some experiences of memory difficulty. She easily forgets things or becomes easily confused when attempting to learn something new. She also has no memory of her experiences in the hospital, which the doctors had said would be likely.

Amy is sharing this story here because it is her hope to be a blessing of encouragement to others who find themselves in her shoes as a seemingly hopeless bystander. She hopes to assist them in becoming educated so at least they can have facts to stand on and tools to use to help them get through each day. Amy also hopes to be of help to them because when she went through this with her mother, Amy went through it alone, not having found any help on the Internet like there is here today.

If you would like add your story, please fill out our Contact Form. The stories will be edited for length so that we can include as many as possible.

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The ARDS Foundation
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Eileen Rubin Zacharias, President
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The ARDS Foundation

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