ARDS Stories ARDS Foundation

Terry Marshall, who was fifty-three years old, had surgery on December 3, 2003, at Fleming County Hospital, in Flemingsburg, Kentucky. The surgery was to remove scar tissue which had resulted from numerous prior surgeries. Following the surgery, he lost a lot of blood and required many blood transfusions

During the surgery, Terry's small intestine was cut, causing his bowel to move to his stomach and as a result, Terry got a septic infection. On December 12, Terry required a second operation, at which time he was put on life support. During this surgery, Terry had a feeding tube inserted, but had other problems with his bowels. Further, he had some some surgical procedures performed on his stomach. All of this left Terry with further complications and health issues.

After one month at Fleming, they said that there was nothing more that they could do for Terry. He was transferred to another hospital in Maysville, KY for the following two months. Due to the sepsis and the medications that Terry was on, he had to have his toes amputated; the blood flow was being cut off from his feet. After a little over two months, Terry's insurance ran out and he was discharged.

However, on March 5, 2004, Terry was admitted back into the hospital and almost every week thereafter, he was back in the hospital.

Finally, on May 24, Terry was air lifted to University of Kentucky Hospital in Lexington, KY when he had gotten so ill, and finally, Barbara was told that he had ARDS.

Barbara learned that the feeding tube that had previously been placed was not feeding Terry and he was starving. For the last six months, he had no nourishment, except through his veins. For the next five weeks, Barbara had to watch him die a little bit at a time and there was nothing that the doctors could do for her husband.

Finally, on July 14, 2004, because Terry had ARDS and because he could not be fed which would allow him to build himself up to fight the syndrome, the physicians told Barbara that it was their opinion that Terry should be removed from life support. After spending five months on life support, Terry had lost so much weight that he only weighed seventy-five pounds. Terry never woke up again.

On July 17, 2004, with thirty-five members of Barbara and Terry's family surrounding Terry by his bedside, Terry Marshall was removed from life support. Terry lives for one hour and thirty-five minutes. After twenty-seven years of marriage, Barbara said good-bye to Terry. Barbara said, "He was ready to go home and meet G-d. Through the eight months that I sat by his bedside, I prayed so many prayers. I am thankful that some do come through ARDS. Families should thank G-d every day that their loved one is still with them and they don't have to see them suffer as I did with Terry."

Angela Bowen’s long ARDS journey began on June 26, 2002 during a surgical procedure when her esophagus was perforated. Angela was 46 years old, in good health and exercised every day. The next three crucial days were spent trying to understand why she was in such pain and unable to breathe. Finally, the hole was detected but it was too late to prevent the rapidly progressing respiratory complications.

During the next 6 weeks, Angela had 7 chest tubes for multiple pneumothoraxes, a thorachotomy, and a decortication and of her lung, a tracheotomy and numerous other procedures. Among her many diagnoses were mediastinitis, septicemia, empymea, cardiac dysrythmia, thrombosis, pnuemonitis, hemoptysis, and ARDS! Although Angela has no memory of these days and weeks due to the diprovan sedation, she now knows that every day was a NEW fight for her life.

On August 12, 2002, Angela was airlifted to Methodist Hospital in Houston due to bleeding from her trachea. Minutes into the trip, she lost my airway and went into cardiopulmonary arrest on the helicopter. The helicopter returned to The Woodlands with CPR in progress. Angela was resuscitated in the emergency room and off they went again. The “down time” was estimated to be between 2 to 10 minutes! Anoxic encephalopathy was then thought possible based on the neurological exam and the cardiopulmonary code! Due to the neurological questions, the Diprovan was discontinued at this time.

On August 13, a bronchoscopy was performed and it was decided that the bleeding from the trachea was due to an upper lung hemorrhage and on August 16, another trach was inserted.

Toward the end of August, Angela began what she calls “My Awakening” – it was very gradual and was several days, perhaps weeks, before she realized what had happened. Angela could not believe how much time had passed and wondered who went on vacation without her! Her father explained that she had a “ little bit of pneumonia” and was on her way to recovery! Angela had “a little bit of pneumonia as a child it was nothing like this!!”

Angela remained in ICU until 9/9/02 and until she finally was moved to a regular room on supplemental oxygen. This was possible because her pulmonologist treated me with Interferon, which helped her completely unresponsive lungs to heal and begin functioning again.

During the course of Angela’s hospital stay, she developed a condition called Heterotopic Ossification, which is characterized by bone growing in the soft tissues of the joints. Her right knee and right arm were greatly affected by this condition. Because of this and the loss of all muscle tone, walking was very difficult and painful. Angela wondered if she would ever be able to walk normally again.

Finally on September 24, 2002, Angela was discharged from the hospital to inpatient rehab where she spent about 10 days before going home; however, she had to return to the hospital again in October for the placement of a pleural tube for another pneumothorax. Angela spent several months in outpatient physical therapy.

In the past two years, Angela has had surgery two times on my elbow to remove the extra bone growth; in the very near future, she hopes to have the bone removed from her knee as well. She is again walking, two miles everyday, in addition to doing water aerobics. Her lung function is as good as it can get – 100% of predicted - a Miracle!

Angela’s message to you is this: “If you are reading this because you have or have had ARDS or know someone who is struggling with the nightmare of ARDS, don’t ever give up – there is hope and there is help. I was never expected to survive!

I will never be the same person as I was before my ARDS journey. It taught me to appreciate every day, every gift, every person, every experience, every blessing from God. When I look at my children, the youngest – Taylor is 14 and the oldest – Lauren is 21, I am so grateful for the miracle of my life. Taylor is a freshman in high school and Lauren is a 2nd year medical student. I am amazed at the people who prayed for me every day and the many wonderful doctors that took care of me…It’s been a long road, but I think I’ve made it !”

Christmas had always been a special and magical time for Suzanne, it had always been a chance to return to an innocent child like status and become truly captured in the magic of Christmas. At first, this Christmas seemed no different to other years. Granted, there had been struggles... Russell's father's death in late July, the purchase of a house, and the fact the work was extremely busy for both. Suzanne was so involved with work, she was too busy to notice her partner becoming gradually sicker and sicker.

At first, twenty-six year old Russell seemed to just have a chest infection that would clear up with some cold relief. Russell, a Head Chef would not take time at this his busiest time of the year. When the chest infection wouldn't clear up, Russell was prescribed antibiotics for suspected pleurisy; but still, he continued to work. On December 17th a week before Christmas, Suzanne talked Russell into going to the doctor; the doctor ordered a chest x-ray and the following day, he was admitted to Hospital.

Russell assured Suzanne that he would be better in a few days. But a few days came and went. Russell was not getting better. Instead, he was admitted to the infectious diseases ward, where he endured endless tests, without a diagnosis. Finally, on December 23, the doctors decided to do a lung biopsy the next day. The surgeon explained the procedure, that they would collapse the lung, Suzanne let out a scream. The surgeon told them they need not worry as it is a routine procedure. Russell was transferred to the Northern General Hospital for the biopsy. By this time, Russell has become extremely breathless and Suzanne was very frightened.

The nursing staff could see Suzanne's distress and they quickly arranged a relative's room for Suzanne so that she could stay in the hospital overnight. Christmas Eve, Russell had his lung biopsy. Everything proceeded as planned. Suzanne was able to see Russell in recovery, and was so pleased to see that Russell was sat up laughing and joking and looked amazingly well for someone just out of theatre. The Doctors debated whether Russell should go to ICU or to a regular ward.

To be safe, Russell went to the intensive care unit. A few hours later after eating jelly and ice cream, the Sister came in and said that they would be transferring Russell to the high dependency unit as other patients were much more sick than Russell. Russell continued to improve and was transferred to a regular ward.

It was at that point that the horrible nightmare, the one that seems like it will never go away, began. On Boxing Day morning, Russell's lung collapsed and he was screaming in agony. His epidural had come out and they were unable to administer any pain relief. The nurse tried to contact the doctor, but he was treating a patient with a gun shot wound and they would have to wait for twenty minutes. After twenty minutes of agony, Russell had a chest tube inserted. Things continued to get progressively worse; Russell was transferred back to the intensive care unit. Further he now appeared to be drifting in and out of consciousness. The doctors told Suzanne that the results of the lung biopsy indicated viral pneumonia as they had found two types of viruses, Staphylococcus, Influenza type A, Meningitis together with Glandular Fever although they were not sure if this was residual.

Now back in Intensive Care, Russell looked awful; he had tubes coming out from everywhere and he was a grayish blue colour. His eyes were taped down and skin stained with iodine. Two chest drains bubbled furiously by his side. The Doctor's said that they would wake him up the next day. The next day didn't come for some months later.

Russell was diagnosed with ARDS (Acute Adult Respiratory Distress Syndrome). Russell was now completely sedated and on 100% oxygen and full support from the ventilator. Paralyzing drugs meant that he couldn't move a muscle. The Doctors and nurses both said that he was very close to dying. A few days later, Russell was placed on a rotation bed and moved into isolation; now he had the hospital super bug: MRSA. The next major problem ... on New Year's Eve, Russell's lung collapsed.

On January 15th, a day Suzanne calls "Black Thursday," Russell had been unstable all night, with a heart rate of 170 and despite being on 100 & oxygen and full support from the ventilator, they were struggling to keep his vital statistics up. Suzanne was told that there was nothing else they could do. Russell's mum took her rightful place at the bedside and Suzanne's Aunty and the local Curate came to be with her. The doctors said that the only thing left was to try prone positioning, turning Russell face down, although this did not come without its risks. Unfortunately, when they tried this, there was no sign of improvement. The family stayed by his bedside and prayed and again God was listening and at 3 in the afternoon, Russell's vital signs were improved although not stable.

As the days turned into weeks and then months, Russell went from one crisis to another. Many prayers were said, up and down the country. This is where the saying: "candles at nine" came from. Each Sunday night at nine o'clock, Suzanne would ask friends, religious or not, to light a candle and hold Russell in their thoughts and prayers. It was such a support to know up and down the country candles were lit for Russell. On many occasions during those darkest days, Suzanne felt the experience of being held. God was listening to their prayers.

Russell suffered six pneumotharax's (lung collapses) in all and had a total of six chest drains. A tracheostomy was performed so that he could be ventilated long term. The x-rays got progressively worse and showed a complete white out of his lungs due to all the infections. Russell had pseudomonas and candida, serious gram negative bacteria infections amongst others. He developed septicemia on four or more occasions.

Sometimes Suzanne feared she would never see him again. Finally, in late February, they attempted to wake Russell. Suzanne was told to prepare herself... Russell might be severely brain damaged, they said, due to the amount of time he had been hypoxic (without oxygen).

When Russell awoke, he could not speak or move. Two days later, after becoming septic, he was put back to sleep again. He had a temperature of 104 degree requiring blood transfusions, supportive medication to keep his blood pressure up, and a course of antibiotics costing 10,000 a shot.

In early March, Russell was awoken again. They began to wean him from the vent but this proved difficult and took several months, a lot of encouragement and countless prayers.

During the time Russell was in hospital, the love and support of the chaplaincy team was endless. Some of the darkest days Suzanne would not have been able to get through had it not been for their support. Russell's illness brought with it a new sense of faith, which Suzanne further explored and led to my confirmation in June. Russell amazed Suzanne by being able to be present and it was once of the most special days of her life which will be forever etched on my heart.

The Doctors continued to say that they would try until the situation became hopeless. Even though three times Russell was declared nearly dead or hopeless with a less than 5% chance of survival, Russell did what was seen as the impossible: he survived ARDS!

He spent a total of 5 months in intensive care on a ventilator before being moved to the acute spinal injuries ward for rehabilitation where he spent another two months. He had to learn to do everything for himself again, how to take a drink from a beaker, how to dress himself and how to walk.

Now out of hospital, Russell wears a splint on his left leg as he has no feeling due to critical illness neuropathy, he is on supplementary oxygen 24 hours a day. His weight is down and fortunately, he has no memory of his time in CICU, although both Suzanne and Russell suffer with flashbacks from his time in intensive care.

In July, 2004, Suzanne and Russell celebrated Christmas in their new home in Sheffield, South Yorkshire; they put the tree up and opened their presents from December. Family were in attendance and it was very emotional and cathartic.

Suzanne and Russell are still coming to terms with the events of the last few months. And although each day brings a new challenge, Suzanne knows that it is a miracle that Russell is still with them. She is in awe of his determination to fight this syndrome and get better. Russell is being considered for a lung transplant but he is adamant that given more time he can get better.

Russell and Suzanne still have a long way to go, so still need thoughts and prayers.

But Suzanne wants others to know that "each day many people face devastating news and have to face up to horrible and soul destroying illnesses such as cancer, leukemia and others. My heart goes out to each and every one of them. Perhaps people reading this now have loved ones or they themselves are facing illness. My message is: "Never give up hope, the greatest gifts we have are faith, love and hope and with these anything is achievable. "

In September, 2003, Stephanie Linebaugh had been training all summer with three other teammates for the 24-hour urban adventure race, The Wild Onion. About a week before the race, Stephanie noticed that she was feeling unusually ill.

Her boyfriend, now husband, Chuck, told twenty-eight year old Stephanie, that she should go to the emergency room. They went to the ER at Illinois Masonic in Chicago, near her home at the time. Stephanie had a fever of 103 degrees. She was examined and she pointed out the numerous scraps, wounds and blisters that she had acquired from her training.

The doctors told Stephanie that they were not concerned with them and sent her home without any blood work. Stephanie was told to take three Advil every 4 hours.

However, the following day, Stephanie was still not feeling well so she went to see a physician at Illinois Masonic's outpatient facility. Again, she was sent home. Two days later, Stephanie continued to get worse. Her knee was swollen to the point that she was no longer able to walk. She thought she had torn something in my knee during training and planned to see her orthopedic doctor on Monday. But Chuck disagreed and insisted that Stephanie go back to the ER. So again they sat in the ER at Illinois Masonic on a Saturday night. When the doctor finally saw Stephanie, he concluded that she had an infection in her knee; they admitted Stephanie for surgery to drain the infection and reduce the swelling.

Stephanie went into surgery 5:00 AM Sunday morning. After the surgery, she began to have difficulty breathing. Her difficulty breathing continued to get worse. Stephanie was sent for a CT scan, at which point she went into respiratory arrest and was rushed to ICU for an emergency intubation.

The doctors told Chuck to call Stephanie's family, who live in North Carolina, ASAP, as they were not sure Stephanie would make it through the next 24 hours. She was intubated and put into an induced coma for the next three weeks. That time was like a roller coaster for Stephanie's family, filled with good days and bad days where they did
not think she would survive.

Stephanie was diagnosed with sepsis from a Group A Strep infection which they suspect entered her bloodstream through a blister on the bottom of her foot. After giving Stephanie hundreds of drugs, her primary infection was under control, but she continued to have secondary infections and eventually pneumonia. Illinois Masonic was able to control her infections, but then, Stephanie was diagnosed with ARDS; she
had already been intubated for 21 days.

At this point, Chuck had been doing a lot of research on ARDS and found that Northwestern University was better equipped through their research and the fact there were several doctors from that hospital that were on the Board of the ARDS Foundation. It was decided that Northwestern was where Stephanie needed to be if she was going to survive ARDS.

Stephanie's first night at Northwestern was another critical time for Stephanie. Since she had been intubated, at that point, for almost twenty-four days, they decided she needed to have a tracheotomy. But before they could trach her, her lungs needed to rest. Also, there was some concern that Stephanie might have nerve damage.

Stephanie was finally able to be trached, but then her doctors did not think they would be able to wean her from the vent. A hospital social worker spoke to Stephanie's Mom about the need to transfer her to a rehab facility for ventilator patients, but since Stephanie was just transferred to this facility, her mother was quite upset. They had just endured a whole ordeal to have Stephanie transferred to Northwestern and
now they wanted to talk about sending her somewhere else. Luckily, three days later, Stephanie was off the ventilator and on her way to a speedy recovery.

Stephanie moved from ICU to a normal room and then, a week later, after five weeks in the hospital, she was on her way home under the care of her Mom and a home nurse who came every other day to change out her antibiotics to her central line. Stephanie weighed 85 lbs when she went home; she went from being a very athletic and independent person to having to relearn how to walk and do day to day tasks and being dependent on everyone.

Physically, Stephanie feels as if she is back to "normal." The emotional scaring will take longer to heal. She and her family learned a lot through this whole traumatic experience, specifically about the importance of having a medical power of attorney, patient rights and the importance of ARDS education and of course, prayers.

On March 14th, 2004, Ilene Pinkerton was on Spring Break from her position at Howard Payne University Library, in Brownwood, Texas. She had stopped by her daughter Karla's house located in Abilene, Texas, on her way to spend the week with her mother. She had been to the doctor on March 13th, and was diagnosed with bronchitis, possibly brought on by acid reflux.

When she arrived at Karla's home, she was not feeling well, though she had been taking the medication the doctor had prescribed. She started a two hour trip, but before she even got out of town, she decided she was not well enough to travel. Ilene was having the usual symptoms of bronchitis, but nothing out of the ordinary. She returned to Karla's house to rest.

That evening, Ilene began to cough and had a little trouble breathing, but, nothing out of the ordinary with an upper respiratory illness.

By March 15th, Ilene was not feeling any better. Although she had an appointment to see the doctor the following day, by that evening, it was obvious that she was too ill to wait. Karla and her daughter took Ilene to the emergency room. Ilene's breathing had become very labored, and her oxygen level was 78. The doctor on call ordered an x-ray and blood work along with an ABG. The doctor said that Ilene might have viral pneumonia and she was admitted to the hospital. This first night was pretty uneventful, oxygen levels stayed in the 80’s.

On Tuesday, Ilene's doctor began to question the diagnoses given in the E.R. In the early afternoon, with Ilene still on oxygen, she was taken for an echocardiogram, suspicious she might have congestive heart failure, though she never had heart problems before. When Ilene returned from her test, her oxygen levels began dropping dramatically, and her breathing was getting faster. The nurse instructed her to take slow, deep breaths. Ilene would try her best to comply but after a couple of breaths, she would begin breathing fast again. The nurse and Karla took turns helping Ilene to try to breathe with slow, deep breaths. After about 2 hours with the oxygen levels declining from the 70’s to 60’s and eventually dropping to the 40’s, the nurse contacted the doctor. He came in and said that Ilene would be transferred to ICU.

Still unaware of what might be wrong, the wonderful nurse who had stayed with Ilene first mentioned that she ARDS. This was the first time Karla had ever heard this term. Ilene's doctor and the pulmonologist that had been called in were not ready to diagnose ARDS, but the pulmonologist did say he felt Ilene must go on a ventilator. Ilene had already made a decision in the past that she did not want to be kept alive by a machine, but not knowing what we were facing, Karla asked her Mom, and Ilene said, “ I think we better.” Unknown to Karla at the time, they were the last words Ilene would ever speak.

Karla left the room while the procedure was performed. When she returned, this beautiful, strong, courageous woman who had raised 3 children after the death of her husband, lay lifeless in a drug induced coma. Ilene's oxygen levels increased slowly and eventually reached the 90’s. The ventilator was set at 100%. After notifying Karla's two older brothers, and Ilene's Mother, brother and sister, the family began their ARDS story.

On Wednesday the 17th, after tests, the doctors began to suspect that Ilene had ARDS. Before leaving the hospital that night, Karla's daughter began searching to learn about ARDS on the web; they were shocked with the mortality mortality rate, but held out hope for Ilene. That day, the vent was reduced to 60% and the following day, the vent was reduced to 40% for most of the day. Blood cultures that had been taken earlier came back negative, x-rays seemed to show some clearing in the lungs. In the evening vent settings were increased to 60%.

By Friday, March 19, the vent had been increased to 80%. The PEEP was also set pretty high. Ilene showed no signs of fever and things began to look better. Saturday started out good, but by 3:00 p.m. they had increased the vent to 100%. Around 5:00 p.m. Ilene's oxygen levels began dropping. They continued to drop even with adjustments and the addition of paralytics and morphine. Her x-rays looked bad. However, she began to stabilize. Oxygen levels were back in the 90’s on 100% vent, and PEEP was at 14.

On Sunday, Ilene began running a fever. Blood cultures were taken and eventually came back positive. She was started on antibiotics for MRSA and on steroids to help heal the lungs. Ilene was becoming very puffy so a diuretic was added. On the 30th, doctors said Ilene had pneumo-median stinem, which is air between the lungs. This was a complication caused by the vent being at such high pressures for such a long period of time. A tracheotomy was also performed. Because enough air was allowed to escape they did not feel a need to insert chest tubes.

In the days that followed, vent pressures were eventually reduced to 60%. Antibiotics and steroids were stopped. On April 7th, Ilene's heart rate was running high for which she received medication. Vent settings were lowered to 55%. She also developed bedsores and was being treated with special bandages. On April 9th, the family was informed that the MRSA had become active again.

A bronchioscope was performed on April 12th, but it did not show any new or untreated infection. Ilene's family also discussed with the doctor their concerns that she would not recover, and if she did, what the quality of her life would be. The doctor stated he did not know if Mom would ever be able to get off the ventilator. In the past several days, Ilene seemed uncomfortable, she had a grimace on her face at times and would turn her head back and forth. At times her eyes were open but glazed over, as if she was not seeing anything. Ilene's condition did not seem to be improving.

Karla and her brothers met with Ilene's doctors on Friday, April 16th, Both doctors agreed that Ilene's body had “missed its opportunity to heal.” The doctors stated that if Ilene was to have any quality of life she would have to be put through (in the doctor's terms) “Hell.” Ilene's doctors agreed to do whatever we decided, they did not try to sway us. Karla's brothers and I talked and prayed about it and made the decision to take Ilene off of all life support and give “comfort care,” which included Morphine, sedation medications and oxygen.

Saturday, April 17th, 5 weeks after our ARDS story began, at 11:45 a.m., sixty-five year old Ilene's ventilator was removed and replaced with a T-Bar for oxygen. Ilene's levels began dropping immediately, as soon as her oxygen reached 0, her heart rate began dropping rapidly. It took less than 5 minutes for Ilene to go. Karla and her brothers I talked to her until the very end. They expressed how much they loved her, "what a special Mom she was, and we assured her we would be okay, and that it was okay for her to go."

Karla said, " This was the hardest thing any of us had ever had to do. But we come from a strong Christian background and are all at peace with the decision we made. This is what Mom would have wanted. We don't always understand why God allows things to happen the way he does but we must continue to trust and have faith in him. He always knows what is best. I know my Mom's ARDS story may not have a happy ending, but we know that our Mom, Grammy, Sister, Daughter, Aunt and Friend continued to teach us to have faith and trust in God in her death as she did in life. And we know we will see her again someday."

Diane Rasa's Amazing Survival Story

Photo of Rasa Family Diane, a 37-year-old woman married to a wonderful man for the past 3 years, has a 10-year-old daughter from her previous marriage and a 23-year-old stepdaughter; everyone welcomed their new baby brother in March of 2002.

Diane's pregnancy was fairly routine and because of her age, she had all of the prenatal testing. They were assured that everything was fine. They anxiously awaited the birth of their son. Approximately three weeks before delivery, Diane noticed an extremely inflamed perineum. She contacted her OB's office, but they informed Diane that this was normal and not to worry. She also tested positive for strep B at around 20 weeks.
Diane's husband is a family physician and placed trust in the medical staff to provide the best quality of care. Diane did not "use" her husband as her physician and therefore, never had him check her to see if he thought there was a real medical concern.

The horror began shortly thereafter. At 3:00 AM, on March 28, 2002, Diane delivered her son. The OB stated that Diane did a wonderful job pushing. But to Diane, something felt different; the pain was much different from her daughter's birth. Twenty-four hours later, Diane developed shaking chills, and a fever of 101.2. She was told that it was probably her milk coming in. A CBC was obtained and a White Blood Cell count of 20,000 was revealed. However, neither Diane nor her husband were informed of this.

At home, Diane continued to run fevers and developed extreme pain. Two days later, Diane called her OB who told her to come in the following day. He admitted Diane to the hospital with cellullitus of the episotomy site. Soon thereafter, Diane had an infectious disease consult, and that is when things get blurry. Sepsis set in, bilateral pneumonia, pulmonary edema, coma, ARDS, hypertension, and Diane ventilator dependent. Her family stood vigil as multi organ failure was setting in. Approximately 36 hours after the necrotizing fascitis (flesh eating disorder), NF, diagnosis was documented, Diane went to the operating room.

As an old respiratory therapist, the worst nightmare would be to wake up on a ventilator. This was Diane's nightmare, which she was now living. She also hallucinated that her newborn son died, that he was kidnapped, that her husband was conspiring with the nurses, that the nurses were trying to kill her, that there was a shoot out at Diane's house ... just a few of the hallucinations that still haunt Diane when she closes her eyes. Diane was on the ventilator for two and a half weeks. The only thing that stopped her from being trached was the around the clock care give by her husband. Post extubation, bronchospasm set in and the director of the SICU gave my husband 2 hours to get my CO2 at a reasonable level. Diane's husband, her brother, her cardiologist and pulmonologist sat on her rotating bed holding the CPAP mask on her face; Diane's CO2's stabilized and she was not trached.

When Diane was extubated, they brought her son into the SICU in an incubator as she would not believe that he was alive unless she saw him. At the same moment, an 18 year old boy who had just been in a car accident was pronounced dead in the bed next to Diane. When Diane's husband emerged from her room with their son, the mother of the 18 year old asked to hold their son; the mother did so for 15 minutes while the entire staff, family and friends wept.

Diane's family was told day after day that she probably would not make the next. Even one of my husbands friends, another physician, who came to Diane's hospital room when Diane was having her worst night, was told by the medical director, "Why did you bother to get out of bed, the changes you are going to make will not matter, she'll be dead by the am."

Diane is positive that if it were not for her husband, she would not be alive; he would not give up, and he did not accept the fatalist's attitudes. He stepped on more than a few toes, thank god.

After release, Diane received at home PT from her best friend. She needed around the clock care, and could not care for my son. It's been two and a half years and Diane suffers from many post ARDS issues, among them decreased lung capacity, recurrent lung infections and posttraumatic stress syndrome.

Diane has many questions, but no longer asks, "Why me?" Diane wants to help prevent this from happening to another person. She wonders about a link between Step B and NF, has Step A mutated? Diane has many questions but knows one thing-she will not stop trying to find answers. For more information about NF, http://nnff.org/
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Betty Koontz, ARDS Family member

Photo of Betty & Gene Koontz On August 2, 2004, Gene's seventy-five year old wife, Betty Koontz, who was otherwise healthy and active, was hospitalized with jaundice. The hospital immediately decided to do a liver biopsy which showed nothing wrong with her liver. However, during the biopsy, the needle went into a spot of tangled blood vessels causing her to bleed two pints of blood from her liver.

Twenty-four hours later, still confused by the jaundice, the doctors transported Betty to University of VA Hospital for an ERCP to see if a bile duct was blocked. The ERCP was normal with no blockage. Three hours following the procedure, Betty started coughing and within 36 hours she was on oxygen and diagnosed with pneumonia. Betty was catapulted into ARDS only two days after the ERCP. She was transferred into the ICU, put on a ventilator, and put into a drug-induced coma.

At this point, the blood tests taken on August 2, 2004, revealed that she had Hepatitis A and may not have had to have been hospitalized, nor did she need the two invasive procedures (liver biopsy and ERCP). But it was too late. Betty had already been diagnosed with ARDS.

Betty suffered for 9 weeks in the ICU with the ventilator doing most of the breathing for her, and undergoing numerous surgical invasions. Ultimately, in the tenth week in the hospital, she suffered acute kidney failure. Through a combination of paralytic drugs, sedatives, steroids, kidney failure, low blood oxygen and low blood pressure, at some point she suffered severe frontal-lobe brain damage. The family then decided to take her off of life support and she died on October 12 without ever regaining consciousness or moving a single muscle below her shoulders.

Even though the family is still grieving, they realize the lack of understanding and awareness regarding Acute Respiratory Distress Syndrome. They feel very isolated in their grief because people do not have any concept as to what their Betty endured, what she died from, and what they as a family have been through.

Gene and his family are reaching out because, while it is true that he has lost his wife, his children have lost their mother like everyone does at some point in their lives, sadly, they lost Betty to something that no one understands. But this is just their first step, because Gene and his family do not want Betty's passing to be in vain and they plan to do whatever they can to raise awareness of ARDS, even if it is one person at a time.

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Lester Cohen , 81 year old Miracle Man

Photo of Lester and Shiffy Cohen In July, 2003, Lester Cohen turned 81 years old. Les was always a very active gentleman, playing golf, working out several times a week. Les also went boogy boarding at the beach two or three days a week and went to college, taking a wood working class two times a week.

On November 6, 2003, Les found himself with chest pains; two days later, he had triple bypass surgery. Three days after that, Les had pneumonia and two days after than, ARDS. Les's doctor told his wife of sixty years, Shiffy, that her husband had less that a 2% chance of survival, considering his age.

A few days later, the doctors suggested a family meeting. The doctors said that Les had very little chance of survival. Les's younger son, Darryl, took Shiffy to a mortuary and got information about making funeral arrangements.

However, Les was not going to give up the fight so easily. Doctors put him into a drug induced coma, and Les received an intensive injection of steroids; Les blew up like a balloon.

Les also suffered from renal, lung and kidney failure. The prognosis was dismal. Les's family rushed to his bedside, coming from all over the country and the Philippines.

Les spent three and a half weeks after which he was then transferred to the Kaiser Hospital, which was about fifty minutes from the first hospital; Les was at Kaiser for three and a half weeks, and it was there that he had a tracheostomy. From Kaiser, Les went to Life Care Center for rehab. He spent seven weeks at the Life Care Center.

Les could not walk, he could not stand on his own, and he could not talk. But Les was beating the odds; he was alive. However, after fourteen weeks in various hospitals, Les was completely deconditioned. Les received physical therapy for seven weeks and slowly, he was able to walk with a walker. Still, he was being nourished via a feeding tube.

Finally, on February 4, 2004, Les went home. His loving wife made sure he was fed, and she got him moving, walking each day. Home care nurses visited often. When Les went into the hospital, this six foot tall gentleman weighed 160 pounds; after being hospitalized, Les weighed 129 pounds. So far, he has regained only eleven pounds. However, Les is working out with weights to restore his muscle tone. And he is back to playing golf a few times a week, and back at college. Les is hoping to go back to the ocean next summer, where he hopes to once again 'boogy board' the waves. He intends to return to the active life he led before ARDS struck.

Since getting out of the hospital, Les has celebrated his sixty-first anniversary with his wonderful wife, Shiffy. Les lives with Shiffy in San Diego, and cherished the time he is able to spend with his family, two sons and two daughter, seven grandchildren, and one great granddaughter child.

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