ARDS Stories

If you would like add your story, Please use our . The stories will be edited for length so that we can include as many as possible. Go to ARDS Kids Stories

On August 27, 2003, Jenny was 25 years old. She was also very pregnant and swollen. After a checkup, Jenny's OBGyn sent her to the hospital to induce labor.

After 27 hours in labor, Jenny's daughter's heart rate suddenly dropped drastically, and she was delivered via an emergency c-section. Thankfully, she was big and beautiful and healthy. Everything seemed okay with Jenny as well. This was Jenny's first baby and she did not know how one was supposed to feel. She was very weak and did not feel like getting out of bed.

As family and friends came to visit, they noticed that Jenny's swelling was not going down. They noticed that Jenny was not quite herself either. Jenny thought that she was fine at the time, but everything and everyone seemed very blurry in her mind.

Jenny's father, a paramedic, kept asking Jenny what was wrong; he said to her, "You don't look right. You look pale. Something's wrong."

When Jenny went to bed on August 30, 2003, she was not feeling very well at all. Jenny was having trouble breathing, so she called the nurse, who told her that it was normal to feel pressure in your lungs, that all women feel that way when they take Percocet. She gave Jenny some medication and told her to get some rest because she was going home in the morning.

But at about 4:00 AM, Jenny awoke, barely able to breathe. She felt like she was hyperventilating. Jenny's husband ran to get help and a doctor rushed in the room and started barking orders. They thought it was pulmonary embolism, and Jenny was rushed to the MRI machine. They kept telling Jenny not to breathe, it was messing up the MRI image! Apparently, Jenny passed out in the MRI machine.

The next thing Jenny remembers is being rushed to ICU and having her blood gases taken; Jenny whispered, "Am I going to die?" When she saw her husband's face, she really thought the answer was yes. Jenny was intubated.

In the ICU, Jenny realized that she could not move anything, could not open her eyes. Though she was in a medically induced coma, she could hear and feel everyone around her. The doctors called Jenny's family in, and told them to call her loved ones to come to the hospital to say good-bye. Jenny's husband was told that she had, at best, a 40 percent chance of survival if she survived the first couple of days. He was told that Jenny had ARDS, most likely initiated from sepsis or an amniotic fluid embolism. She had been functioning on less than 25% of one lung.

In the ICU, everyone visited Jenny. They spoke as though she were already dead. Jenny sensed the hopelessness in their voices, and it upset her. But each visitor would also tell Jenny that they had gone to see the baby and she was beautiful. And every time Jenny heard that, she would cry. Tears would roll down her cheeks, and her heart rate would go crazy.

Because Jenny got so upset, visitors were limited. Jenny thought only about her little girl. She was upset that she could not see her or hold her, that her husband had to take her home from the hospital without Jenny. She had resigned herself to the fact that if she died it was okay because at least Jenny got to spend a couple of days with her. That was the most upsetting part for Jenny, who only wanted to be her mother, and more than just for a few days.

Fortunately, Jenny's friend was the ICU's head nurse; he got Jenny one of the "special" beds-that prevent bedsores-fans in her room and allowed Jenny's husband sneak in and spend the night sometimes.

What was most annoying was that the nurses would tell Jenny's visitors, 'she is resting, she can't hear a thing.' But Jenny could hear. She hated that they kept putting VH1 on when she just wanted the news on. And when the nurse would come in, draw the curtains, dim the lights, Jenny knew someone was leaving the ICU, not to return. Jenny did not want to leave that way.

Jenny did not know what was wrong and no one would talk about it around her. She did not know what was going to happen, or if she was getting better or worse.

After seven days on the vent, Jenny gradually got better. She can out of the coma in the morning, on September 5, 2003. That same day, they extubated her, removed her feeding tube, central line. She was moved out of ICU that evening.

On September 7th, Jenny's husband was able to bring her daughter back to the hospital to visit. It was so wonderful for her to see her and touch her again! The next day, Jenny's husband's birthday, the nurse said she would go to the cafeteria to get her real food. Jenny said she wanted a cheeseburger and french fries. Her OBGyn was in the room and said, "You feel like eating that? REALLY?" Jenny said, "Yes, I am STARVING-this liquid diet doesn't really cut it." He told Jenny that if she could eat a cheeseburger, she was ready to go home. And that night, she did.

Jenny's husband brought their daughter to the hospital and the three went home together.

Of course, Jenny was very weak, and it took several weeks for her to heal so she could care for both herself and daughter, Lucy. Since ARDS, Jenny has short term memory issues, difficulty concentrating, and her cognitive skills are only a fraction of what they once were. Initially, she had hair loss, but it has since regrown. But these issues are only a small price to pay for a beautiful daughter, now two, and son, Chase, born in October, 2004. Thankfully, his birth was not as eventful as his sister's was! Jenny is now living the life she dreamed about during those days in ICU, and she loves every day as a mother.

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On July 27, 2005, forty-three year old John passed out in his apartment and was taken to Harborview Medical Center in Seattle. John was bleeding from some scar tissue in his esophagus, due to acid reflux. After throwing up blood all over himself and the ER nurses, John was rushed into emergency surgery to repair the damage to his esophagus. During surgery, John inhaled vomit into his lungs. He was diagnosed with pneumonia and ARDS. The doctors gave John a 50/50 chance of living. John's family even brought in a priest to perform last rites.

John was in a drug induced coma for 7 weeks. He recalls vivid wild dreams while in the coma, most of them involving being trapped or not being able to move while experiments were being performed on him; in reality, the doctors tied John down to prevent him from pulling the tubes out of his nose and respirator from his mouth, which he had previously done.

When John awoke, his muscles had atrophied to the point that he could barely move. John spent a month in a nursing home to learn how to walk again. He has no memory of being in ICU, in fact very little memory of being in the hospital at all. Though John still has some more physical therapy to go through, he feels pretty good. He is working part time at a local radio station, and lives and works downtown so he does a lot of walking.

John says that he came out of this experience with a really cool scar that runs from his navel to his sternum, about a half a million dollars in medical bills, and a new appreciation for life. Though it has been a tough few months, John would not have gotten through it without the help and support of family, friends and coworkers.

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On Nov 14, 2002, Doug's wife, Grace, was diagnosed with ALS (Lou Gehrig's Disease). There is no cure for this and it always fatal. It is a muscle neuron disease that slowly atrophies all the muscles in the body. The last part of the body affected is the diaphragm, at which point the patient suffocates to death. In late 2003, Doug resigned from his job to care for Grace.

All was well until September, 2004, when Doug, then fifty-two, was hospitalized with pneumonia. After three weeks, Doug was released but told that he needed an open lung biopsy because his lungs looked and sounded terrible. Doug had his surgery, at which time his lung collapsed and he was diagnosed with ARDS.

Doug was in ICU for 10 days, but never put on a ventilator or put into a coma. After three weeks in the hospital, Doug was transferred to a rehab hospital.

When Doug went into the rehab hospital, he was able to walk. But by the time he left, he had neuropathy and myopathy and had a severe loss of muscle mass due to the massive amounts of Prednisone and other steroids he was on. Doug had also developed type 2 diabetes and cataracts. Doug had one cataract surgery and will have the done in several months.

Doug was sent home on O2. Through three months of in home physical therapy, Doug has gained back the use of all his muscles. Doug weighed 165 pounds when he came home, down from 205 pounds when he went into the hospital.

After more than a year, Doug is still on oxygen twenty-four hours a day. He has no energy. And he has had to hire a full time caregiver to care for Grace, who is sadly declining rapidly.

Doug is concerned that he has been unable to get off the oxygen and the fact that his pulmonologist has not given him much hope is discouraging. Doug is hopeful that he will be able to get off of the oxygen, but not encouraged. He invites input from any other ARDS patients who have had similar experiences.

Doug and Grace live in Las Vegas, Nevada. Grace worked as a teacher in New York City and then in Las Vegas for a total of 34 years until she was forced to retire. Doug worked on Wall Street for many years, and then in the insurance industry until he retired to care for Grace.

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Terry went to the hospital in June 2005 to have surgery for a hernia. Once the forty-five year old was released, he was in constant pain and the surgery seemed slow to heal. In mid-September 2005, while still having some pain from surgery, Terry was having flu and cold symptoms. The doctor told him that if he did not improve, he should go to the hospital. Two weeks later, on September 28, 2005, Terry was transported by ambulance to St. Elizabeth hospital in Northern Kentucky with pneumonia.

On September 29th, Terry's sister, Rhonda flew from Virginia to be with her brother. For three days she sat by his bedside, praying for him and so afraid that she would loose him. However, on day three, Terry was removed from the ventilator and the following day, Rhonda left to go home, thinking her brother was on his way to recovery.

On October 9th, Rhonda made her daily call to Terry at the hospital and he sounded very breathless. He said the doctors thought he had congestive heart failure. The next day, a nurse from ICU called Rhonda to tell her that Terry was back in ICU on the vent, very sick.

Rhonda drove to see Terry and arrived on October 17th. Immediately, she knew that Terry was very sick when she saw him. She went to stay four days, but knew she could not leave when the time came to leave and decided to stay with him until he was better. The doctors said that Terry had ARDS and was septic and that he had one percent chance to live. Rhonda said that she would take one percent, that she was trusting God for his recovery. Terry also had pancreatitus, which did not help his condition. He was sedated and paralyzed for one and one half months. Eventually, the trach was placed in Terry's neck and the hospital felt that it would also help him quickly get off the vent.

On November 11th, Terry had a feeding tube placed in his stomach. That same day, Terry was removed from the vent and was placed on a trach collar and he was transferred to a rehab hospital. He was on 50 percent oxygen and 96 percent saturation when he entered a specialty rehab hospital. Rhonda was excited, thinking this was the beginning of the end of this terrible disease and soon she would be able to take him home. Two days after entering Cardinal Hill, the doctor called Rhonda and told her that Terry had Lymphoma cancer in his stomach that was discovered when placing his feeding tube. He also began radiation therapy.

Terry suffered from anxiety and was having with trouble with it after eating one day, and was then placed back on the vent at 100% oxygen. He was not given enough attention while on such high amounts of oxygen and wasn't properly weaned and two weeks later, Rhonda was told his lungs were burned by the high amount of oxygen he was given, causing scar tissue. The doctor said that he would not live and would eventually die. Rhonda flew home to look for a nursing home to place Terry, however, none would accept him because his oxygen level was too high. When she returned back to Kentucky, Terry's saturation levels were dropping down into the low 80's and he was very weak. Two days later, on January 4, 2006, Terry passed on to live in his heavenly home.

Terry wanted to live, and wanted to go home. His sister prays his story and his life will help someone else who suffers with this tragic disease. Her life has been forever changed as a result of ARDS and subsequent death of her brother. Terry was a compassionate and loving brother and they had become such good friends. He wanted to live and tell people how God can change a life. He did not ever get the chance. For that, Rhonda feels a great loss.

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Ivora’s story began the second week of August 2005 when she developed flu-like symptoms. She tried various over the counter medications, but they did little or nothing to help her feel better.

On August 17th twenty year old Ivora left school early, took some medication and went to bed. By Sunday, she had a low grade fever. By Monday night she started having problems keeping food down. Her fever dropped several times but never completely went away. Feeling this was a very nasty flu, her mother thought Ivora should go to the hospital.

The hospital mistakenly sent them to a pediatric doctor but that doctor was alarmed by her symptoms. Before she sent Ivora back to the adult clinic, she called ahead to make sure Ivora was seen immediately and not left sitting in the waiting room.

The doctor who next saw Ivora shrugged off the first doctor's urgency, saying she had "a virus that was going around." She prescribed two medications and sent Ivora home. For a short time, Ivora’s health started to improve. Her fever went away and she was able to eat, but late Saturday, Ivora sounded like she was panting in her sleep. But her mother let her sleep, something she now regrets.

The next morning Ivora seemed to be okay, but by the afternoon, she could not cross a room without total exhaustion. Her breathing was rapid and shallow. Her eyes seemed unfocused.

Her mother took Ivora back to the hospital; the doctor in Urgent Care took one look at Ivora, tested her oxygen level. It was 60%. Ivora was put on oxygen immediately and admitted. For two days, Ivora responded to treatment. She was supposed to go home the next day, but doctors decided to keep her one more day. Ivora was encouraged to get out of bed and walk around. A neighbor, who is a nurse, was visiting when Ivora got up to go to the restroom. She promptly collapsed gasping for air. The neighbor summoned help and Ivora, bed and all, was rushed down the hall to ICU.

Ivora was intubated, chemically paralyzed and put on life support. Ivora seemed to improve and sometimes she got worse. No one was sure what was causing her illness. An internal specialist was called in to take of her. He determined she was suffering from not one, but three different types of pneumonia. Add to this mix a blood clot in the right lung and leg and Ivora was a very sick young lady.

She burned with fever constantly. Ivora had to be given four blood transfusions in all during her stay and a wide spectrum of antibiotics. She was unconscious all through September and into the first week of October. It was then that her doctor called the family together and told them she had ARDS.

Nothing he tried was helping her and he was at a loss. The ventilator was already set as high as it could be without damaging her lungs further. As a last ditch effort, they decided to try giving Ivora steroid shots.

Sometimes Ivora opened her eyes and looked at her mother. She seemed desperate to keep her mother's face in view but the medications always made her sleep again. Her mother went home to think about it. In the end, she could not bear the thought of pulling the plug or letting her child suffer a slow death from suffocation. She wanted Ivora to have every possible chance to live. The next day she gave the doctor permission to give Ivora steroids every 12 hours.

Her mother saw improvement with the second injection but the doctor did not agree until the end of the second day. From that point on, Ivora’s lungs began to soften and heal. Her doctor let her come out of her coma. She came off the ventilator the last week of October and was sent to intermediate care on the 27th with a trach. Anterior compartment developed in her right leg and she had to have surgery. She was also diagnosed with Critical Illness Polyneuropathy and foot drop. Her hands shook so bad she needed help feeding herself.

On November 3th, Ivora was sent to an intense rehabilitation and she continued to improve. She threatened to escape if she couldn't go home by Christmas. On December 4th, she was released with 96% of her former breathing capacity. Ivora has since graduated from a walker to a cane. She still uses a wheelchair to travel long distances. Though she does not move very fast, her hands don't shake anymore. Throbbing nerves in her right arm bother her sometimes. There is some improvement in her right foot.

Ivora is grateful to be alive and for the support she received from her family. She goes to physical therapy once a week and has weekly blood draws because she's on a blood thinner. She hopes to be able to go back to school soon and finish earning her bachelors degree in animation.

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On the morning of December 23, 2005, Lynn found her 44 year old husband, Mark, unconscious and barely breathing. He had complained of being tired when he went to bed the night before and thought he was coming down with a cold.

EMS arrived, intubated him and transported him to the closest hospital. They placed him on a ventilator in ICU and told Lynn that he appeared septic and had fluid in the lungs. The first 2 days he was able to open his eyes and nod. By the third day, he was totally unconscious. No one mentioned anything other than pneumonia.

Lynn had heard of ARDS and asked the nurses, "What happens if he gets ARDS?" Lynn was told, "Get ARDS? He has had ARDS for 2 days."

The doctor never said anything to Lynn other than that Mark might not make it through the night. The doctor never told Lynn anything about Mark having ARDS.

Lynn did some research and found that there was some evidence that proning might help patients in their beginning stages of ARDS. Lynn asked the doctor to get a bed to turn him up side down and explained what she learned about the roto-prone bed she had seen. Though Mark's doctor was not convinced, he relented and ordered the bed.

To use the bed, there had to be a one to one nurse ratio at all times. The company representatives stayed all shifts to make certain everyone was trained. The bed automatically turned Mark to 6 different positions. He instantly went from 100% to 50% on the vent when up side down! Fluid drained from his mouth and nose which they explained was from the lungs. When ever he was turned right side up, the vent
pressure had to be increased so they kept him up side down for most of the shift. There were risks involved, including eye orbital pressure and changes in eye sight but since Lynn had been given no hope, this was an option that gave them hope.

Mark was in lung, kidney and liver failure. After a week in the bed Lynn saw the
lungs improve slightly. Mark also had a trach g-tube to feed directly to the
stomach to help from aspiration.

Mark was in a coma while in the prone bed for seven 7 days. Once he started improving, they put him in a regular bed and then had to use Nimbex to keep him paralyzed so that he would not fight the vent.

Lynn had to remind medical staff frequently that he could hear but not move and to keep all comments positive. His only memories during this time were of a "beach," which Lynn had spoke of going to often while Mark was in the coma, and a "round house" which was probably the roto-prone bed.

Mark spent 32 days in intensive care, 4 in a step down unit and 5 on the floor. Mark came home and had in home therapy for 3 weeks and then out patient physical therapy for 3 more weeks. Mark started going back to work for a few hours a day within 4 weeks home. Although he is still very tired and has muscle weakness, Mark has made tremendous progress.

Mark's chest x-rays, taken in April, 2006, showed no scaring of any kind in the lungs and his lung capacity is normal. Though Mark had to have a large increase in the strength of glasses, Lynn is so glad that he is here. Mark has an increased anxiety level and is very quiet at times post ARDS. Mark and Lynn feel that the roto-prone bed made all the difference. We may not ever know but so many of the hospital staff told us that our Miracle Man would not be there if we did not get the bed. Click here to see photo of Roto Prone Bed here

Lynn and Mark live in Port Ritchie, Florida.

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Brad's ARDS experience began when he was thirty-one years old, in December 2004. Before that time, he had never really been sick but was not feeling well for about a week.  Brad was coughing and having a tough time catching his breath..

Finally, his wife, Wendy, convinced him to go to the doctor who told him that he had bronchitis.  On December 9, Brad's doctor gave him a shot and sent him  home with an inhaler. 

On December 13, Brad felt worse.  Still, he went to church that morning and that afternoon, to work.  However, only a little over an hour after arriving at work, Brad called Wendy and said, "I can't breathe.  I am going to the hospital." 

Wendy and their children met Brad at the hospital.  Brad was in Intermediate Care at Good Samaritan Hospital in Vincennes , Indiana , doing okay but on oxygen.  The next few days, Brad's oxygen was at 100% and he was uncomfortable.  The doctors said that he had pneumonia in one lung.

On December 15, 2004, Wendy called Brad at the hospital repeatedly but could not reach Brad.  Finally, a nurse called and said that he had been moved to their Critical Care Unit.  .  
 
Wendy did not understand what was happening.  When she arrived and saw Brad, he was so helpless and frightened.  The doctors discussed putting him on the ventilator.

Brad's family prayed for his recovery.  At 5:00 PM that day, doctors said that Brad had pneumonia in both lungs.  He was intubated.  Brad's family prayed for his healing. 

For three days there was no response from Brad.  His doctor told him that after three days, he would get better.  During that time, his kidneys were beginning to shut down and things looked bleak.  But suddenly, after three days, Brad awoke.  And he wanted to get off the ventilator.  But it was not that simple.  Brad was not ready. 

But after being on the ventilator for seven days, he was taken off the vent, on December 22, 2004, and moved into another room.     On Christmas Eve, the doctor came in Brad's room and found him dressed!  He was determined to be home with his family on Christmas. 

However, Brad's recovery took much longer.  He still needed to learn to walk and has been unable to return to work.  The heat and the cold really trouble him.  He remained on steroids for over a year, post ARDS, and now has Diabetes. 

It wasn't until later that Brad and Wendy learned what happened to Brad but eventually they learned that he had aspirated into his lungs causing a massive infection before he was diagnosed with ARDS. 

Brad has since had surgery to correct this problem and his lungs are continuing to heal.

Wendy and Brad, who live in Lawrenceville , Illinois , know how precious life is, after loosing one of their four children.  They are so thankful for each and every day that they share together as a family.. 

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On Friday evening, November 20, 2004, Judy Otteson, then 60, from Yakima, Washington, developed a headache, chills and general aches and pains three days after receiving a tiny, half inch dog bite on the web space between her right thumb and index finger. She had met friends for dinner the night before, left her car at the restaurant, and asked to spend the night at their house. She felt worse in the morning, and that afternoon the friends drove her to the emergency room in Toppenish, Washington. She hardly recalls being seen there.

She bled severely after a simple blood draw, and her blood pressure had dropped extremely low. She screamed from pain when the blood pressure cuff was wrapped onto her arm. Judy arrived at the emergency room in septic shock and was admitted to the hospital for the next eight hours. She received antibiotics, was intubated, and placed on pressors; she was transported to Yakima Memorial Hospital ICU at 10:00 PM. Doctors said that Judy had a 5%-10% chance of survival.

Within three days, Judy was diagnosed with Acute Renal Failure, ARDS, and Disseminated Intravascular Coagulopathy. Her veins were inflamed, and she bled through them, through her skin, through her ears, eyes, and mouth. Her heart stopped twice. Judy developed severe Purpura Fulminans; from the waist down, her skin developed 3” to 10” blisters filled with blood and fluid. Due to lack of circulation and her blood not coagulating properly, she developed gangrene in her right hand and in both feet.

Judy put it bluntly: “I was dying from the inside out and rotting from the outside in.”

She was put on dialyses for two weeks and given insulin for her Acute Diabetes II. Wound care took hours each day; Judy received an NG (feeding) Tube. She remained intubated for ten days, and on her eighteenth day, was airlifted to Seattle’s Harborview Medical Center, where she was admitted to the Burn trauma unit. She had developed 3rd degree burn-like wounds over 40% of her body.

At Harborview, they treated her as for Necrotizing Fasciitis (commonly called “flesh-eating bacteria”) her skin with dead fat and tissue, almost to bone, from her legs and thighs. Judy received skin grafts and had the fronts of both feet amputated. Four fingers from her right hand were as well.

Judy remained sedated and on the feeding tube for another eight weeks. Plans were made to eventually admit her to a nursing home of, if she were very lucky, to an assisted-living facility. Meanwhile, she moved from surgeries, to ICU, to the regular burn ward, and back into the OR.

Rehab finally began in early February, 2005. Muscles had atrophied, and she learned to walk on what was left of her feet. Physical therapy lasted five weeks and Judy announced that she would ride her horse on her birthday, in August.

Finally, Judy was released from Harborview on March 12, 2005, four months after the dog bite. In May, she returned to work as a PTSD (Post-traumatic Stress Disorder) counselor at the U.S. Department of Veterans Affairs “Vet Center” in Yakima.

She rode her Percheron Draft Horse, Major, on her 61st birthday on August 7th and, after staying in a rented room at the home of a friend, returned to independent living with her horse and Rottweiler on March 16, one year after her Harborview discharge. She types 60wpm, using her right thumb, and has recently returned to playing the piano.

Judy is now in the ‘disabled’ category. She can only stand up for five minutes, and walking more than 100 feet is a real nightmare. But she is thankful for the incredible staff at Harborview.

Judy’s advice? “Don’t try to be a tough guy. I’m tough as nails, and look what happened to me. Any injury must be washed, disinfected and followed with an antibiotic. Demand an antibiotic following a dog bite” The dog that bit Judy was healthy. Still all dogs carry bacteria. Judy also urges everyone to stop smoking now; it affects circulation, breathing, and healing.

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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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