ARDS Stories

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

Dee’s ARDS experience began on April 14, 2000, with an emergency call to 911.  Until this time, Dee had been in good health, working as a professor of teacher education at Saginaw Valley State University, Saginaw, Michigan, for fourteen years.  By Sunday, April 16, Dee was a critical care patient struggling to stay alive.  Twenty-nine days later, Dee was released from the hospital, dependant on medical care at the age of 49.

Dee’s introduction to the world of Acute Respiratory Distress Syndrome (ARDS) began in March 2000 when she had tubes surgically inserted into her ears to correct hearing problems.  As she came out of the anesthesia, she suffered a massive asthma attack, the first one she have ever had. From this point on, she developed asthma, headache, flu-like symptoms and hallucinations.

She spent 29 days in the hospital supported by a ventilator and having tubes inserted down her throat. As Dee puts it, I was dying. The entire experience was surrealistic.

After Dee’s symptoms somewhat subsided, she came home dependent upon 3 liters per minute of supplemental oxygen, 24 hours a day, 7 days a week.  Her vocal cords had been injured during the intubation. Dee was also suffering from breathing, mobility, emotional, and cognitive problems, and was terrorized by hallucinations, flash backs, and nightmares.  I was so scared, said Dee.

Through rehabilitation, Dee relearned how to walk, read, write a check, cook, develop a sense of humor, and drive a car.  A student teacher specializing in Special Education lived with her the first six weeks.  Then the Visiting Nurse Association sent physical, occupational, and speech therapists into her home. She wore a Lifeline button suspended on a black cord and checked in twice a day so that someone always knew if she was alive.

Dee entered a Pulmonary Rehabilitation program in January 2001 and graduated in March.  She was completely weaned from supplemental oxygen in April, almost one year from the day she went into the hospital. In that year, she went from a relatively normal life to a life filled with rehab sessions, Better Breathers support sessions, and quilting classes. 

I wanted to learn about ARDS and to understand it.  About six weeks after getting out of the hospital, I relearned how to use my computer, my e-mail, and then I discovered the ARDS community.  I met many wonderful and supportive people post ARDS. 

In January of 2000, Gene Bass heard the term "ARDS" for the first time in his life. It was one week after his Mom Geri had been admitted to the hospital for flu like symptoms. Her doctors told us she only had a 10% chance of surviving.

Gene was with his Mom when she was told that she would have to be put on the ventilator to help her breathe; what Gene did not understand at the time was that this meant "life support." Everything happened very fast, when he returned to her room he found his mother in a drug induced coma, receiving 100% oxygen. There was no good news for almost two months. Like many families of ARDS patients, Gene found himself attending four meetings with doctors to discuss "options." The only option Gene had was to not give up on her as long as she was still fighting.

In 1986, Gene was in a serious car accident, where he had crushed his lungs, broke many bones including his back and suffered a serious burn to his leg. He spent nine days on ventilator and was giving those same odds, ten percent survival.

Gene spent 120 days in the same two hospitals that his mother was in for almost three months. Gene always told her that he "owed her 120 days," but never thought he would actually have to fulfill that IOU this early in life as his mother was only 55 years old.

Gene read everything that he could about ARDS, the lungs and infection, hoping to learn about every aspect about his mother's illness and this terrible syndrome. Knowledge became Gene's best weapon in his mom's fight to survive and for keeping his sanity.

After two months, Gene's mother started to slowly get better. Though still not convinced that she would live a normal life, the doctors were now cautioning the family about the possibility of anything from brain damage to a life on oxygen. But today Gene's Mom is doing very well. Other than some residual problems from lack of physical therapy while hospitalized, she is perfect. Her recovery is nothing short of a True Miracle.

Since his mom's battle with ARDS, Gene has continued to offer support online and in person to people and families who find themselves dealing with ARDS. Gene and his family reside in Northern California and are happy to correspond with others who are in need of support.

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I was reading some of the ARDS stories and came to my own version of events in the life of an ARDS victim. I thought, the ending is no longer current, and so I have amended it, brought it up to date. I offer it to you, the reader, as a light to those who may need some encouragement in their own story, may need to know that, if they are prepared to do battle with the negative forces in their life, then the power of Possibility Thinking brings new Hope and a new vision of the future.

On November 27, 2000, a fit Pastor Ian Robb entered Oshawa Lakeridge Hospital, Ontario, Canada for "day surgery" to remove his gall bladder. Within 24 hours, Ian was back in the emergency room with severe pains. He was admitted. After approximately five to seven days, Ian was transferred to the Intensive Care Unit, where he was intubated while critical, and his family was given the ARDS diagnosis; ten days later, he was given a tracheotomy.

Ian spent eight weeks in the ICU, where he was treated with approximately thirty different antibiotic drugs, as well as steroids which some think helps prevent damage to other vital organs. Ian had become septic, probably due to the site of the gall bladder operation having leaked bile. A drainage shunt was inserted in his abdomen and remained there for several weeks. At one point Ian went without food for almost a week after his nasal feeder tube blocked. Weight continued to tumble and Ian was so deconditioned that he was unable to stand.

Ian was transferred to another ward, where he spent another four weeks. During this time, Ian was placed in isolation for 2 weeks when one of the physicians suspected his condition might have been caused by exposure to Hanta Virus. He then spend two weeks in rehab until he suffered a hydropneumothorax, putting him back into a regular hospital ward for another two weeks. Then, Ian again went back to rehab for another five weeks.

On day of discharge from the hospital on May 4, 2001, Ian weighed 145 pounds; he was 60 pounds less then when entered the hospital over five months earlier.

When Ian left the hospital, he was on oxygen twenty-four hours a day, seven days a week. Post Traumatic Stress was a term which Ian and wife, Irene, came to know quite intimately in the months following hospitalization and discharge. Ian, who is married to Irene, had been an active fifty-seven year old boater, 5 handicap golfer, enthusiastic walker, and traveled extensively. Ian ministered at two churches prior to having ARDS.

However, after his experience with ARDS, Ian's and Irene's life dramatically changed. Ian ended up on long-term disability, requiring oxygen 24/7 but was committed to weaning himself from the supplementary oxygen. Ian tried to build muscle and stamina, which was a constant challenge. Ian's motto always was

"Remember, every set back is a set up for a come back."

And as Ian's story continues to unfold, he says that those last last few words, “Remember…“ are prophetic words, although Ian did not realize it at the time of writing. The story unfolds:

Ian continued, week by week, to grow a little stronger, and commenced the course of physical rehab, which helped greatly. During the fall of 2002, still on oxygen 24/7, Ian continued working out 3 days a week at the rehab centre in Kingston, Ontario, Canada, which is about an hour from his home. Then one day, progress halted.

And in the space of a few short days, Ian felt worse than before. He could not exercise to the same extent. Extensive tests and a scan were ordered, and a few days later, Ian and Irene were given the bad news. Ian now had Idiopathic Pulmonary Fibroses, which was advancing rapidly. His life expectancy was short, and his only hope of living was to apply for, and hopefully receive, a lung transplant.

Once that information had sunk in, Ian considered the options; he thought about living and he thought about dying, and felt somehow that this was not yet his time. Ian thought, "Surely, if I go ahead with the operation and survive, then I will know that God has more for me to do in this world." Irene gave her total support and Ian moved forward with the application for transplant.

The University of Toronto is one of the leading centers in the world for transplant surgery, and in particular, lung transplants. The application process is long and involves a week long stay in hospital for a multitude of tests, scans, consultations as well as other visits, making the process, one that is not entered into lightly. The information which is provided to the candidates leaves them in no doubt as to what they are letting themselves in for, and that is as it should be. Many months later, Ian learned that the panel of health specialists who review each and every application, had approved him.

He was then placed on a further course of rehab which he attended three times a week in the Toronto hospital. Ian was assigned an electronic beeper and told to carry it at all times. If and when it sounded, he was to arrive at the hospital within two and a half hours. Ian had no idea if or when he would be called, as this depended on the availability of suitable organs for transplant, depended on a match, depended on his place in the priority list of candidates.

One evening at 6:00 p.m. the call came, and Irene and Ian raced to Toronto, their minds in a haze of thoughts of so many things. "Was this the last time we would see each other? Would the operation be successful? How would Irene manage on her own? What about our family? How would they take it?"

They arrived in record time, the highway patrol would not have been impressed with Irene's somewhat ‘urgent’ driving, only to be told several hours later that the transplant could not go ahead. (They had been warned that this does happen and is unavoidable) They returned home at 1:30 a.m., the conversation muted, and their minds again confused with what had transpired, figuring that “it was just not meant to be.”

Two weeks later, strangely enough, also at 6:00 p.m. the call came again, and they repeated the journey, although this time a little slower, a little wiser. The conversation during the journey in the car was strangely hushed, as they had said it all before. The questions had been covered, the prayers had been said, the love that bound them together remaining unspoken, yet so strong they could touch it and know it.

Four hours later, Ian went into surgery, which, he was informed some weeks later, lasted twelve hours. Complications caused an eight week stay in ICU which was less than enjoyable, yet due to the dedication of nurses and doctors, Ian recovered.

Learning to walk for the second time in three years, this was beginning to become a nasty habit for Ian, and yet, it was the walking activity that brought Ian's strength back sufficiently to allow him to leave hospital, and commence a three month period of intensive rehab.

The first time Ian realized he could breathe without the need for an oxygen tube in his nose was quite a revelation, and as his confidence returned during the next three weeks or so, Ian dispensed with any supplementary oxygen assistance. According to Ian, "My miracle was for real."

He began this by saying:

"Remember, every set back is a set up for a come back."

He would like to add these words that kept him going over the weeks of recovery in hospital:

“The task ahead of us is never as great as the Power behind us.”

Pastor Ian

Click here to read Pastor Ian's Body, Mind, & Spirit

Click here to visit Pastor Ian's website

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ARDS Survivor: Eileen Rubin Zacharias

At thirty-three years of age, Eileen left the Cook County State’s Attorney’s Office as a criminal prosecutor in order to create her own private law practice. Married for only a year to a Chicago police officer, she was healthy and active. Therefore, when her lower back started to hurt her, she applied heat, continued talking to clients, and kept going to court.

When the pain increased, she went to her internist, who examined her and sent her home with muscle relaxants. As another five days passed, the pain not only increased ten fold, but also moved into her chest, causing difficulty breathing and decreased functioning. Another visit to the doctor only produced more of the same medications.

The next twenty-four hours proved critical. She deteriorated quickly and was unable to drive and barely able to walk. A visit to another internist revealed her blood pressure to be only 70/50. Blood was taken and a chest x-ray done. When Eileen finally entered the hospital emergency room the next morning, her white count was three times higher than normal.

Once at the ER, Eileen was placed on oxygen and admitted directly into the Medical Intensive Care Unit. That evening, her kidneys failed. A little over twenty-four hours later, she went into respiratory arrest and was intubated. Although a definitive precipitating cause was never revealed, Eileen was diagnosis with both Sepsis and Acute Respiratory Distress Syndrome. Eileen's husband, parents, two brothers, and twin sister were told the prognosis of ARDS: her chances of survival were not good.

Eileen was forced into a drug-induced coma, insulted with tubes and assaulted with machines throughout her body. As the days turned into weeks, the physicians told her family the grim reality of her illness: it was time to start thinking about removing her from the ventilator; it was a "quality of life issue" because if she did survive, they said, she would likely "never breathe on her own again." Her family refused to give up hope and sat with her each day, all day, talking to her, singing to her, just holding her hand. A tracheotomy was performed after she was hospitalized for about two weeks since it was clear she was nowhere near getting off the ventilator.

After four weeks, the doctors finally gave Eileen steroids, which allowed a minimal improvement, and that allowed them to bring her out of her coma. Still, her condition was extremely critical. Almost immediately, she suffered a psychotic episode. Following the hospital psychosis, both lungs collapsed a second time and she was losing blood. Five chest tubes, eight blood transfusions, high fevers, and more infection followed. Another four weeks on the ventilator, and Eileen was finally able to breathe on her own after having been vent dependent. She spent a ninth week in the hospital and months of recovery to restore a body that was down to 82 pounds.

Eileen did not go back to work for eight months, but began working part time at a less complex job to ease herself into the day to day tasks of working at four months after getting out of the hospital. However, she was able to get pregnant only six months following her release from the hospital. She now has two daughters, Lily and Dana, works part time as a trial attorney, and is President of the ARDS Foundation. She feels extremely lucky to have very few major medical concerns as a result of her experience with ARDS and tries to support those who are dealing with ARDS as patients or family members every day.

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ARDS Story: Marybeth Monaghen - Survived by her sister Paula Blonski
Paula Blonski

In May 1998 Marybeth Monaghen went to the hospital to have an ovary removed after it had been causing her trouble for years.  After the surgery, Marybeth came home from the hospital and began to receive in home health care to attend to her wound.  The wound was not healing properly; therefore, two weeks later, she went back to the hospital to have it cleaned out, in order to stop the bleeding, and to help the wound to heal.  One week later, her temperature was high enough for the doctors to be worried enough to readmit her; it was then that she began her battle. 

They ran several tests on Marybeth to determine why she had a fever. Another puzzling factor was that her white blood cell count was low, which is unusual with a fever, as the count should have been high.  She began to get progressively sicker, and began to have trouble breathing.  They decided to do a bone marrow extraction in which the results told us she had Leukemia.

Marybeth’s family was devastated at this news, but decided not to tell her yet, as they wanted her to keep her strength up for the battle ahead.  She was still having trouble breathing, so they decided to next do a lung biopsy.  During the biopsy, her lung collapsed and they intubated her.  Marybeth now officially had ARDS.  The decision was made to move her to Northwestern Memorial Hospital in Chicago, Illinois.  The physicians there were hopeful that they could cure the leukemia, if only they could stabilize her ARDS.  Marybeth spent the next three weeks on the ARDS roller coaster, until one day, when they could no longer stabilize her with medication, she slipped away.

The loss of Marybeth was devastating to her family and friends.  Marybeth was only thirty-six years old and previous good health.  She had been a nurse, who had spent her life caring for others.  During Marybeth’s lengthy hospitalization, her family had very few resources and little information.  They were surprised and amazed that Acute Respiratory Distress Syndrome affects so many people each year, killing at least half of them, yet they had never heard of this syndrome.  Marybeth died in August 1988, three months after she went to the hospital to have her surgery.

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On February 15, 2003, Toni's thirty-six year old brother, Mike Tufarella, was admitted to a local hospital on Long Island for what he thought was an extremely bad flu. He had chest pains and literally could not walk. Within 3 days, he was diagnosed with bacterial pneumonia. At the hospital, they attempted to aspirate the pus from his lungs and Mike's family was told that he needed emergency surgery to scrape his lungs. However, within a day, the doctors said that Mike now had sepsis and Mike needed to be on a ventilator. The only thing his family was told in those first two weeks was that Mike was critically ill.

Only after Toni called the patient advocate and demanded to get a doctor on the phone to explain to me what they meant by critically ill, did she learn that Mike had ARDS. Toni had never heard of this before. She immediately got on the Internet and found The ARDS Foundation. After days of emailing doctors around the world and the states, emailing support staff, did Toni realize that their family's lives were about to change forever. Toni could not let her parents handle this alone, so she took a leave from her job (Federal Law: Family Medical Leave Act) and was there with her family for every bump.

After about 3 weeks into the ARDS roller coaster, the family called a critical care specialist from a local university hospital to consult with Mike's doctors. He made some changes on the vent and some suggestions for medications.

After about four weeks, Mike was making no improvement, and the feeling was that this hospital, they were giving up on Mike. Toni was given a number for the clinical trial department at Mt Sinai in NYC to inquire if there were any ARDS trials going on. Even though there were not, the doctor in charge of trials was very kind to Toni and she helped to get Mike transferred to Mt Sinai. She spoke with one of the leading pulmonologists there who agreed to accept Mike as a patient. A family friend also helped to pave the way.

Mike's physicians from Long Island 'allowed' the transfer but told the family that the odds were greater than 75% that Mike would not survive the ride which was about an hour drive from Long Island into the city.

However, Mike arrived to Mt Sinai in one piece; he was set him up in MICU and the medical staff was prepared to do what was necessary. Mike suffered many bad days. His 02 sats were not great; he was on 100% oxygen for quite sometime and the good days were outweighed by the bad. Mike was given paralytics and heavy sedatives. The doctors were unable to answer many of the families questions.

Finally, when Mike began to improve just a little, they decided to stop the paralysis and lighten up the sedatives. Eventually, Mike was moving and fluttering his eyes.

Soon thereafter, they were told they were moving him out of MICU and into the Respiratory Unit, a step down unit; This is where they will prepare to wean him off the ventilator. They prepared to wean Mike from the vent. There were days, too, that to look at Mike was difficult, as the distortion from the medication made Mike appear to look so completely different.

They also began all of the therapies with Mike. The physical therapist started coming in, psychiatrist, and everyone told the family that Mike would be coming home. Mike had beaten the bacterial pneumonia, the sepsis, and he was in the process of beating the ARDS.

Toni said that the weekends were the worst; The hospital seemed to be short staffed and as an ARDS patient, often it is difficult to use the call button when one is so weak. But all in all, Mike had more good days than bad ones, and in the last two months of his hospitalization, he had no trouble pressing the buzzer or using the television remote.

On Sunday, June 16, 2002, Mike was seem by the doctors. They discussed weaning from the vent. Mike was in good spirits, especially considering that it had been sixteen weeks since he had been admitted to the hospital. In fact, when Mike's parents called at 10:00 PM that night, they were told he was fine; but only a half hour later, the hospital called and said that Mike had suddenly passed away. After fighting this insidious syndrome for sixteen weeks, suddenly, Mike's fight was over.

Toni's loss is immense but she does not want her brothers passing to be in vain; she wants people to know more about ARDS and she would like to share in the support and education that she received while going through ARDS crisis with her brother Mike.

Mike was a fireman, and after he died, his fire department, the Haulage Fire Department posthumously made him a Captain; Mike had received many special awards for his outstanding work during 9-11 at the World Trade Center, and even though he was a hero to people everywhere, Mike was a hero of the most special kind to his family. And though Mike's death is indeed tragic, his life was amazing and the loss has been felt by those who love Mike.

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Louise Montgomery suffered a fractured ankle in May, 2000. She was getting ready to return to work in June 12, 2000, but needed a Return To Work slip from her PCP, Louise and her sister went to see him. Fifty-two year old Louise had been feeling fine, except for a minor cough. She brought this to his attention during the visit, at which time he ordered an x-rays just to be certain that she was all right.

When Louise's physician came back in and told her that she was suffering from congestive heart failure and she could die at any moment, she was in complete shock. He made arrangements with one of the local hospitals and sent Louise there immediately. Louise remember walking into the ER that day and was immediately put on a vent and testing commenced.

Initially, the doctors dismissed the heart failure, believing that Louise was suffering from carbon monoxide poisoning. She was then transferred to the other local hospital who then dismissed the carbon monoxide poisoning and said that she was suffering from an aortic dissection. Neither hospital had the appropriate equipment or specialists to handle such a problem, and so, after they consulted with Louise's sister, she was flown by a small plane to the Cleveland Clinic, though the Life Flight helicopter could not fly that night due to heavy thunderstorms in our area.

Louise was first placed in the Cardiac Care Unit where she had more tests. After ruling out heart problems, she was transferred to ICU. Louis was diagnosed with ARDS within the first week. In this ICU, Louise spent the next 75 days in a coma, on the ventilator, where she received a tracheotomy soon thereafter.

While in the coma, Louise had many dreams and terrible nightmares. Even today, she still remembers most of them vividly. Louise suffered many complications during the course of her ARDS. She became septic, her kidneys failed and she was put on dialysis; chest tubes were inserted and also Louise suffered "hospital acquired pneumonia" three times. Even though her family was never pressured into removing life support, many times, the doctors told them that she only had a 5 - 10% chance at survival and that if by some miracle she did survive, she would live out her remaining days in a "vegetative" state in some nursing home. They even went so far as to have her family have all her funeral arrangements made.

Louise was removed from the paralytic drugs and weaned from the ventilator beginning August 20, 2000. She was off the ventilator by August 24 though she was still very disoriented and confused. On August 30th, Louise was transferred by ambulance to the Rehab Unit at Marietta Memorial Hospital and began 30 days of in-patient intensive physical and occupational therapy. There, she had to relearn how to do everything from personal hygiene to walking.

Louise continued outpatient therapy for several months to build up her muscles and stamina. She also went to pulmonary therapy since she came home on oxygen 24/7.

Today, even though Louise still have some problems with short term memory and also neuropathy, she feels that her quality of life is great. Louise is on oxygen "As Needed" during the day, which she seldom needs now, but still uses at night. She still has the neuropathy, but, as Louise says, "It's a small price to pay." Louise supports those who are in ARDS crisis, their families, and those who are survivors struggling with post ARDS issues. Her message is a simple one, based upon her own experiences:

"NEVER GIVE UP HOPE FOR YOUR LOVED ONE IN ARDS. Miracles can and do happen! I am one of them."

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The ARDS Foundation
3100 Dundee Road, Suite 402
Northbrook, IL 60062
PH: 312-749-7047

Eileen Rubin Zacharias, President
Paula Blonski, Vice President

The ARDS Foundation

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