ARDS Stories ARDS Foundation

Jackie's sister, Michelle was in a car accident on April 6, 2003, she was hit on the passenger side of the car, broadsided. She was living in Arizona and Jackie was living in California. When Jackie received the call, it did not look good; Michelle's injuries were a broken collarbone, chin bone, humours bone, wrist, ribs, and leg. She also had a hole punctured in both lungs causing collapse. Her spleen was bruised and pelvis broken.

When Jackie arrived at John C. Lincoln Hospital, in Phoenix, Arizona, Michelle squeezed her hand. She knew that Jackie was with her. Jackie was happy that Michelle knew. The physicians informed her that Michelle had ARDS and that she only had a fifty percent chance of survival.

Jackie's mother and other sister were at the hospital along with her sister's fiance; Jackie wished that she could have stayed longer but had to care for her grandmother. Michelle blew a hole in her other lung and almost died, but the next few days, she bounced back. In sign language, she said that she loved us.

She developed an infection in her nose so the NG tube had to be removed and placed in her stomach. They were never able to put the trach tube in due to the fact that her blood pressure failed to stabilize. On the morning of April 25, 2003, Jackie's beloved sister, Michelle, lost her battle to ARDS. Jackie's heart goes out to each and everyone who has lost a loved one to this syndrome. Michelle left a two-year-old baby boy behind and her son looks just like her.

Jackie is moving closer to be with the rest of the family and she wants Michelle's memory to endure. Michelle loved to read and write poetry, and loved all beautiful living things. Jackie shares a poem that Michelle wrote before she died, as she wants the world to read it, as it is beautiful.

WHEN I AM FEELING LONELY
WHENEVER I AM SCARED
ANYTIME I NEED A FRIEND
YOU ARE ALWAYS THERE.

YOU LIFT ME UP WHEN I AM DOWN
PUT MY FEET BACK ON THE GROUND
YOU ARE ALWAYS THERE TO CARRY ME
WHEN I AM WEAK YOU GIVE ME STRENGTH
TO KEEP ME SAFE FROM THE STORM
YOU LIGHT MY WAY THROUGH THE DARK

YOU HOLD ME IN YOUR ARMS
TO SHELTER ME WHEN I CRY
WHEN I THINK THAT NO ONE CARES
I TURN AROUND AND YOU ARE ALWAYS THERE.

THERE IS NO WAY I CAN REPAY YOU
FOR THE LOVE YOU HAVE SHOWN ME
FOE BEING THERE IN MY TIMES OF DOUBT
LOVING UNSELFISHLY

YOUR LOVE SHINES DOWN FROM HEAVEN ABOVE
LIKE THE SUN EACH DAY
AND GIVES ME THE COURAGE TO GIVE AND TO LOVE
TO CARRY ON DAY BY DAY.

NEVER AGAIN WILL I FEEL THAT NO ONE CARES
BECAUSE WHEN I NEED YOU MOST
YOU ARE ALWAYS THERE.

THIS POEM IS IN LOVING MEMORY OF MY SISTER. SHE LOVED ALL AND IN HER WORDS WHEN YOU SEE BEAUTIFUL FLOWERS OR THE SKY OR THE STARS IN THE SKY. OR EVEN A BEAUTIFUL RAINBOW THINK OF HER WHO LOVED ALL LIVING THINGS

Forty-nine year old Alan Moses had a series of medical tests in July 1995; afterwards, he was admitted to Presbyterian hospital in Philadelphia for a cardiac catheterization. It was five months prior to Alan's 50th birthday. Unfortunately, the cath results were that Alan needed an immediate quintuple bypass procedure. Alan was told that he would be up and out of the hospital in five days.

Instead, Alan woke in September; football season was just beginning and everyone was rushing in to tell him how long he had been "out." It was almost enough to put Alan out again. Alan learned that during his surgery, he "spit acid from my stomach on to my lungs and the acid caused the lungs to stop working."

Alan was lucky that his oldest brother is a professor of surgery at Thomas Jefferson Medical College and was able to see that there was a reason that he could not be weaned from the ventilator after the cardiac procedure, contrary to the operating doctors opinion. His brother was also able to contact a former student of his, who was a pulmonary specialist at Presbyterian, and Alan attributes this fact, that Dr. Alan Freedman being able to treat him within 7 hours of his operation as a key factor in saving his life.

All of that being said, the last eight years have been difficult for Alan. He did three years of therapy being diagnosed with posttraumatic stress disorder. Thereafter, Alan had two good years. He walked every day, played golf three times a week and enjoyed life again. However, the past three years have been miserable, always reverting back to the coma and the near death experience.

Alan's life has gotten a little better since May 13, 2003. His grandson was born and Alan just adores him. However, in the past two years, Alan has had two minor strokes which cause him concern since he does not have high blood pressure, and makes Alan wonder if it is related to his ARDS experience. Alan would like to get input from others who have had similar ARDS experiences.

Deb's life was no busier than any wife, mother of two and part-time manager of career consulting for a major bank in Chicago. Throughout the winter, her three mile workout, three times a week was no different than her run on Thursday, March 28. On Friday, Deb had a high fever, persistent cough and body aches; on Saturday, she saw her doctor when she felt no change and was told she had a cold and was given cough medication. On Easter Sunday, Deb's fever hit 104 degrees and she was unable to get out of bed. On Monday, Deb went back to the doctor and was told she was dehydrated and to get to an emergency room, which she was convinced would be helpful.

After a chest x-ray and cat scan, Deb received chilling news. The doctor reported that Deb had bacterial pneumonia (strep pneumonia) in both lungs, bacteria in her blood and a mass on one lung the size of an orange that could be lung cancer, lymphoma or a mold ball. Deb knew that she felt very ill, but certainly none of this made any sense. Deb was put on the cancer floor which naively baffled her as she had never been a smoker or around anyone who smoked in her life. Doctors explained they wanted to go down with a scope to determine what the mass was when suddenly Deb went into respiratory failure -- full blown ARDS. (Deb's medical notes read possible congestive heart failure and carcinoma.)

Eight days later Deb awoke from a morphine coma and in intensive care, completely unaware of what had happened. Surprised to find a ventilator in her mouth and a feeding tube in my arm, she scrawled, "What happened to me?" Her husband told her that she was having trouble breathing but didn't go into detail. . Deb endured the next seven days as best as she could and thrived on her faith and the dedication and nurturing of family and friends. No one led on how close to death she had come and how gut wrenching it was to see a once vibrant person with tubes hooked up everywhere. There were tears behind the door that Deb never witnessed. Since she was in intensive care and also had contracted an infectious bowel syndrome, Deb was unable to see her daughters who were then ages four and only one year old which was agonizing for Deb.

Deb later learned that what was originally believed to be a mass on her lung was actually dense pneumonia that cleared with the antibiotics. By the 15th day in the hospital, Deb had grown weary of having my lungs aspirated and having trouble breathing and resigning herself to a scheduled tracheotomy the following day. When Deb's nurse discovered water in her line causing a false breathing reading, she was convinced that she could wean Deb from the ventilator. Within hours, Deb was ventilator-free with oxygen in her nose when Deb's husband, Keith arrived; he stared at her in disbelief sitting up and sipping water. An hour later, the oxygen was making Deb dizzy and was removed.

After two days on the respiratory floor, Deb wanted to go home and eat home cooked meals after having lost 17 pounds -- a pound for every day in the hospital. Deb slept sitting up for a week at home because her breathing was so compromised. She was back to work after 8 weeks with completely normal lung function after six months. As a result of the trauma her body endured, the bottoms of Deb's feet peeled off, her back peeled and looked like it was sunburned and her hair fell out for 12 weeks. For the first three after her illness, Deb needed 10 to 12 hours a sleep each night and be mindful about not pushing herself too much.

Much of the details of Deb's experience she gleaned from daily e-mails that were circulated about her condition. She was not ready to read them until she felt physically stronger three months later. She is still absorbing all that she experienced and how she believed she was fighting so hard to get well, not live. Throughout her hospitalization, she never felt the emotion of fear, she believes, because of her strong faith in God and because she learned that literally hundreds of people were praying for her across the country. The genuine love and concern was overwhelming as she imagined prayer lights flashing across the country. The power of prayer was so powerful and critical to her healing. Amazingly, nine months after surviving ARDS, Deb was singing solo at a friend's wedding. Deb says, "What an honor it was to fill my lungs. Today, breathing is a gift and a blessing which I will never take for granted".

Bryan was undergoing cancer surgery on July 1, 2003 at Vanderbilt University Hospital in Nashville, TN. He was forty years old. The surgeon had gone over all the risks involved with major surgery and Leisa and Bryan were confident that Bryan would breeze through it as usual. This was a recurrence of colon cancer that he had been originally diagnosed with in 1999. At the time, it was found in stage three, and Bryan had a colon resection, followed up with six months of chemotherapy.

Bryan’s lab work (CEA tumor marker) had been slightly elevated for the last two years, but had showed a steady increase starting in November of last year. The cancer was back, but the scans were not picking it up. When it finally did show up on a CT scan in May, it was not very large, and only one tumor in one small area around the ureter under the right kidney. The surgeon hoped this would be the only area they would find the cancer; however, he prepared Bryan and Leisa for the “worst case scenario” and said it was possible it could be elsewhere, that they would not know the surgery.

However, four days before surgery Bryan began to complain about an “excruciating” pain in his right hip and abdomen. As Bryan has a high tolerance to pain, this was unusual; the ibuprofen did nothing to relieve the pain at all.

On the morning of surgery, in the pre-op area, Bryan and Leisa told the doctor of the pain, but the doctor did not respond. When they called Bryan’s family to the conference room to meet with the surgeon after three long hours of waiting, as soon as the elevator door opened and Leisa’s eyes met the surgeon’s eyes, she knew the news was not good.

The surgeon said that it was the “worst case scenario.” They had to close Bryan because the cancer had spread so extensively, and they removed nothing. The doctor said that he was concerned that the cancer had spread when they had mentioned the pain to him earlier. He said it was “tumor pain.” Bryan and Leisa were terribly upset.

That night in the room, as Bryan slept, Leisa had been praying for a divine miracle and asked God to heal him. Leisa said that God gave me such a perfect peace as she sat there in silence. It had been a horrific day, the worst day of my life, and yet, God gave her peace.

The next day went well considering Bryan had to absorb the enormity of the events of the previous day. Bryan sat in a chair, walked with very little assistance, as he was determined to home in four days as his doctor had promised. Typical Bryan, strong and determined. However, Bryan did require oxygen, and begun needing “more oxygen than normal” during surgery, though the doctors said they were not sure why and did not too concerned about.

That evening, Bryan’s condition changed dramatically. After receiving a breathing treatment around 8pm, Bryan became short of breath. Leisa alerted the nurse, but then she began having difficulty breathing. Leisa speculated at first that perhaps it was because a hospital janitor was polishing the floor with a buffer just outside the room putting something noxious into the air. The janitor left, Bryan received another breathing treatment, and Leisa received Albuteral. Leisa felt relief very quickly, but Bryan continued to get worse.

As his difficulty breathing continued, Bryan ended up in ICU and on a ventilator a few hours later. Leisa had never seen anyone on life support before. Her knees almost buckled the first time she saw him. The family acknowledged feeling this way as well.

Bryan was diagnosed with ARDS and they put him on paralyzing drugs a couple of days later. His complications included: fevers, low blood pressure and his heart stopped a couple of times. Leisa could not believe her husband was in critical condition. She read scripture out loud to him, held hands, and prayed over him.

On July 9th his lungs collapsed. The doctors were doing everything and yet, nothing was helping. They thought it would be best to call the family to the hospital in case of his death. Leisa stayed in the chapel; she could not bear to look at Bryan at that point. She said: “He looked dead. My heart was broken, but I kept pleading with God not to take him. The doctors came to the chapel to sit with me at times. I told each one of them that I didn’t believe that God was going to allow Bryan to die and that I had to believe that Bryan would get well and walk out of the hospital. I told them I believed that Bryan was going to be healed.” Leisa thought that there were moments that she could hear those words coming out of her mouth and wondered, “I must be crazy!”

Leisa felt that she had to hang on to her faith and keep her eyes on the Lord, realizing that this was a very difficult task at times. She knew that even though they were telling her that they had done everything they knew how to do, that they had done things that they had never done before, that there was no hope, she had to believe that there was. Still, nothing seemed to work.

But then that night, Bryan became stable! One of the critical care doctors said it was “divine intervention.” The entire ICU staff was amazed, and other doctors and nurses have called him a “miracle.”

Everyone continued to pray over Bryan, speak to him, and encourage his recovery. Bryan was in the ICU for 29 days and was released from the hospital after six weeks. He spent another 10 days in rehab and still goes to outpatient rehab a couple of times a week at this time. Bryan and Leisa are trying to get to know each other again. Bryan does not feel like himself post ARDS and has all the typical complications from ARDS.

Bryan and Leisa, who currently reside in Knoxville, Tennessee, have one adult child, Jon, who is twenty. In mid September, 2003, Bryan began chemotherapy. The lab work which was done the week before they started chemo revealed that his CEA level had dropped to a 17, down from the 39.5 the last time it was checked on April 29th. Another “miracle” by which the medical staff is stumped and amazed. They can offer no medical explanation as to why a tumor marker lever would decrease with no cancer treatment. Bryan currently has had no tumor pain. Their lives are beginning to become more structured and Bryan is looking forward to the days when he can feel more energy, strength, and just more good than not. Leisa says that she is in constant awe of God’s blessings in my life.

On March 22, 2004, Bryan Clemons found himself back in the hospital in ICU. At first, they were not sure what was wrong with Bryan but by April 5, they had confirmed that Bryan was diagnosed with ARDS. Though Leisa and the entire family was devastated that they would again have to face this diagnosis and the ARDS roller coaster, they were ready. Bryan was a fighter, he had beaten cancer, and he had beaten ARDS once before.

On Easter Sunday, it seemed Bryan would not survive, and a few days later, he was still declining, but then on April 20, 2004, Bryan began to show some slight improvement giving Leisa and the family hope.

Still, sadly, on April 25, 2004, at 5:30 AM Bryan Clemons passed away. Bryan is survived by his wife Leisa, whom he met at the age of seventeen and was married to for 22 years, as well as his son, Jon, family and friends, all of whom will miss him dearly.

On June 15th, 2003, (Father's Day), thirty-three year old Kristy Shultz, who lives in Charles City, IA, with her husband, Mark, had their second son, Dylan, who was joining brother Nathan, age two, after a birth that was seemingly without complication. Dylan was born rather quickly, in two hours, compared to Nathan's birth which took about thirteen grueling hours.

However, the following day, Kristy started to develop "flu-like" symptoms, including nausea, and she became short of breath and felt as though she was having anxiety or panic attacks on the 16th of June.

By June 18th, Kristy's shortness of breath continued to increase, her blood pressure dropped and her heart rate soared. Kristy was transferred to ICU. After much discussion with the doctors, radiologists, and specialists, Kristy had exploratory laparoscopic surgery, which revealed a Strep A infection had started in her left ovary. They removed it along with her left tube and appendix. Kristy was also started on dialysis due to kidney failure, and an increase of fluid retention. Kristy required a ventilator to help her breathe, and was put in a drug induced coma so as not to fight the same machines that were helping her to survive.

On June 19th, the doctors thought that Kristy might have had a heart attack from a reading from the heart monitor so a swan was put in her neck to monitor her heart more closely. By the weekend, Kristy's condition did not improve, and her family, especially at the urging of her youngest sister who is a nurse, had her transferred (airlifted) to Methodist Hospital/Mayo Clinic in Rochester, MN. Her family said that she was so difficult to recognize due to all the fluid that she was retaining and her eyes were so puffy that they did not close.

At Mayo, Kristy was placed on continuous dialysis while in ICU and received a blood transfusion. She spent eight days on the ventilator at Mayo.

On July 1st, 2003, about two weeks later, Kristy was moved to a regular floor, as her condition improved and she was able to sit up in the chair. The following day, Kristy began some PT and stood for the first time in more than 2 weeks, and this only last a few seconds since there was not much strength left in her legs and arms. Then after spending about 3 days on the regular floor, Kristy suddenly was taken back to ICU, because she became short of breath again and coded. They doctors believe this was because she aspirated on something. Therefore, on July 5th, Kristy was again placed back on the vent, given heparin to prevent blood clots, had a number of tests for the clots and her heart. At night, pressure support was increased to help her sleep better so she would not have to work so hard to breath. Kristy spent another seven days in ICU. She had fluid on her lungs and had to work to get the fluid out.

Kristy spent a total of six weeks and two days in the hospital for the entire process of birth/strep A/Sepsis/ARDS. She spent the last week in rehab to help her get more strength back and get back on her feet. During this time, when her oxygen levels were low, Kristy had many bizarre dreams and thoughts, but the best one out it all was that she saw her dad, her husband's dad and one of her grandmothers, who have all passed away, and they sent her back to be with her family.

Kristy had about seven weeks of outpatient rehab. She has suffered the problem of hair loss afterwards. It began about two months after getting home. She has spots that are really thin now and prior to getting sick, her hair was very thick. Her son has had no effects from the strep A/sepsis, but they has a tough time finding the proper formula for him. He also had acid reflex which requires that he take Zantac, but overall, Kristy says that he is a very active baby who is already rolling both ways for about a month now. Kristy's family brought her son to the hospital once she was alert, but it was not the same as the when she had her first son; it took some additional time for Kristy to bond with him do to her extreme illness, but Kristy considers herself extremely lucky to have all of the support of her family in caring for herself and her children.

Through this experience she has learn that the power of prayer can be very strong. While in the hospital and even after she was home, she had many different churches and ones of different faith praying for her recovery. Kristy says, "I guess you can say I am living proof that prayer is strong."

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John Manikowski says that "It" all started with back surgery--which was, in the end, successful--at Berkshire Medical Center in Pittsfield, in western Massachusetts. On May 9, 2001, at the age of fifty-eight, John had his surgery; three days later, he was unconscious. After testing John for pneumonia, Legionnaire's Disease, and numerous other maladies, John was diagnosed with ARDS (John did not recall anything for the next two months, due to his medically induced coma).

John was put into a drug induced coma, intubated, put on a ventilator in ICU and was eventually helicoptered out to Boston, to Massachusetts General Hospital where he remained in ICU for another six weeks. His lung biopsy, which occurred soon after arriving, from which came the diagnosis of BOOP (Brochiolitis Obliterans Organizing Pneumonia), the BOOP reaction being part of the ARDS resolution process.

John spent four more weeks at MGH and then underwent rehabilitation for a month, after losing over seventy pounds. He was released in late August, over four months later.

But John had developed a massive bedsore on his right buttocks which took ten months to heal. One year later, he returned to MGH for aortic aneurysm surgery, which had been inadvertently discovered through a CAT scan. Compared to the past year, that surgery was uneventful--but necessary. Without it, the deadly aneurysm was continuing to grow and would likely have quietly burst, soon. Ironically, being in the hospital and having that CAT scan quite possibly saved John's life. That, and of course, the many positive thoughts of friends and relatives.

Dorothy Stuff, Constantine P. Peterson's daughter will tell you that her father had never been sick; he always was strong and hardworking. As a cabinet maker and carpenter by trade, he was seventy-six, still active and working like a young man. On March 1, 2003, he began to feel ill but did not mention this to anyone until that evening when he said that he needed to go to the doctor the following day.

The next day, Constantine went to the emergency room, but learned that he had apparently had a heart attack that began the day before. He was taken to West Florida Hospital in Pensacola, FL and on March 4, they performed triple bypass surgery on him. Dorothy called the hospital every day to check in on her father, and spoke to him for a minute, she told her father that she loved him and he said to her that he loved her. Those were their last words. For on March 4th, ARDS hit, and Constantine was forced back on a ventilator.

Constantine fought his wife, Dorothy's mother, and also the doctors because he did not want to be on the vent. Dorothy felt that he somehow knew that he was dying. When she called on Friday to check to see how he was doing, she was not able to find him. She kept pressing until she learned that her father was in ICU and in critical condition. She left a message for her mom, they made contact and soon, Dorothy was in Pensacola.

Constantine seemed to be holding his own but something told Dorothy that he was not going to beat this syndrome. She held his hand, told him that she loved him and prayed very, very hard. Suddenly Constantine took a turn for the better and Dorothy returned home. But two days later, her mother called and said that they needed to return as her father's condition had worsened. Dorothy called the hospital, and spoke to his physicians, who confirmed what Dorothy's mom had said about her father's condition.

Besides Dorothy, many members of Constantine's family arrived. And as the days would pass, Constantine would get a little better one day, and then, on another day, decline. Finally, on the evening of the March 27th after many days of watching her father's health rise and fall, Dorothy said a prayer that she says still haunts her today: "I prayed that God would either turn him all the way around and give him back to us or take him home and let the suffering stop."

At 6:30 am, March 28, 2003, Constantine P. Peterson died. The battle was over, his suffering was over, and he lost the battle with ARDS. Dorothy's biggest regret is that the hospital, as wonderful and caring as they were, were not as educated about ARDS as they could have been. Dorothy does not know that it would have made any difference, but maybe it would have.

It is especially for this reason why Dorothy wants everyone to know about ARDS and to help educate the not only the medical community, but the general public as well. Dorothy's father was special to his family and all those that knew him and everyone will all miss him terribly, but Dorothy feel that if somehow she can help educate people about ARDS, perhaps maybe in time, they will not loose a loved one as Dorothy and her family did.

It started in January when he suspected he had pneumonia. Luckily, he took that opportunity to quit smoking. In May, Greg went in to have his gall bladder removed. He was supposed to be off work for 2 weeks but ended up missing 6 weeks.

Greg was still ill when he returned to work. He then went back into the hospital with a rib out of place and spent three days. He was getting more fatigued and more short of breath. Greg again had pneumonia, the second time that year, but unfortunately not the last.

When Greg, who lives in Lansing, MI, went to pick up his friend, Christine, in Windsor Canada, she remarked that after he walked down the stairs, he was so out of breath, she thought he was having a heart attack. After 45 minutes, Greg got up the energy for the two hour drive home. On July 5th, Greg went to his physician; it took him almost an hour to get out of his car and walk into her office.

Greg's doctor knew he had pneumonia before and took no chest X-rays. On July 7th, Greg was getting much worse; he got into his car and drove to his Mom's house. Greg's friend went inside and she told his mother that he needed to go to the hospital; Greg's mother called 911 and an ambulance arrived. At first, the paramedics thought Greg had a heart attack.

Greg was initially taken to the closest hospital but at that facility, they said that Greg was in such bad shape, that they had to move him to a trauma unit. That was the last Greg recalls until he awoke from his drug induced coma, three and a half weeks later, and in another medical facility.

However, Greg had many dreams during this time which he said were very strange, among them that he thought that he was in Las Vegas. Also, during his time in ICU, which was five weeks, Greg's doctors told him that he was HIV positive, which Greg realized was another major precipitating cause for his ARDS. He had initially been told that his ARDS was from a blood infection that he had caught from his father while he was in the hospital.

During the five weeks Greg was in the hospital, his sister, Theresa, and friend, Christine, stayed in the hospital with him. Greg's father was sick, and passed away in October, and his mother could only come to the hospital for about an hour each day. When Greg was finally moved into a regular room, he thought that he was in a mental ward; he kept thinking he could hear his Uncle taking in the hall, yelling, repeatedly, "Jack."

The staff wanted to transfer Greg to another hospital for physical therapy but he persuaded them to send him home if he would agree to do outpatient Physical Therapy. He stayed at his sister's home for about four weeks although they had wanted Greg to stay at inpatient rehab for about two or three months. The most difficult aspect of recovery for Greg was learning to walk again and getting his voice back after being intubated for so long.

When Greg called his employer and asked when he needed to be back to work, they told me the end of November. Then they said that if Greg needed more time, to take it because Greg had been such a valuable employee for so many years.

However, the following week ( 9/12/2001) Greg's employer called and said they were consolidating and when his sick leave was over, that he no longer had a job after working at this company for eighteen years. This is what Greg took harder than anything that had happened.

He later learned that he was not only HIV positive but actually defined as having full blown AIDS. Since that time, Greg has had the flu once more and also pneumonia just about one month ago, November, 2003. Not surprisingly, the idea that he had pneumonia again frightening to Greg. But he is making sure that he is as healthy as possible.

Greg still recalls the dreams that he had when in the hospital, and as he says, "they were strange!" And to top off his year, just after his forty-first birthday, Greg's father passed away. But Greg knows that every year will not be like these last ones, and he is thankful for one thing in particular, that he was one of the lucky ones who survived!

The McFarland’s ARDS story really begins in November, 2000, when Brent received a call from his father; he was told that something was wrong with his mother, Carolyn. She had a pituitary tumor wrapped around her optical nerve causing her to lose her eyesight.

After the three-hour surgery, twenty percent of the tumor was removed and Brent’s mother could see again. Her physician told Carolyn that she needed radiation to shrink the tumor. She was advised there was a one percent chance of blindness.

Brent’s mother had the radiation but was given such an excessive amount, that she was unable to have anymore. Carolyn was forced to retire from her position as a cashier after twenty years, but worse, Brent’s father called to say that she was acting very confused. When Brent checked on her, his mother could not see. Brent took his mother to the hospital, tests were done and the outcome was that radiation burned the optic nerve and Carolyn was 100% blind for the rest of her life. At only sixty-three years old, she would never see her 5 grandchildren and 3 step-grandchildren grow up. Worse, yet, within the next three years, she would develop osteoporosis, diabetes, short-term memory loss, and numerous mini strokes.

However, Brent will never forget that call on April 30, 2003, when his father told him his Mom’s breathing was not right and that she would not respond to him. Brent drove to their house and saw Carolyn hyperventilating and was non-responsive. An ambulance took Carolyn to the hospital and she was admitted into the ICU unit.

Carolyn was put on a ventilator and the family was advised that she had a stroke on her spinal column, which affected her breathing, and only time would tell. Three weeks later, when they tried to take her off the vent, she would not stop coughing so they put her back on the vent. They did a tracheotomy and they transferred her to a specialty hospital where they could try to wean her off the vent. She would not respond to any one while she was there.

Insurance decided to have her transferred her to a nursing home, and about three weeks later, Carolyn pulled her trach tube out. Brent’s mother was taken to the emergency room and the doctors decided to take the trach out. Carolyn was beginning to come around. But about three months later, the family received a phone call, at around 8pm, from the nursing home. They were told that their mother was not doing too well. When Brent got to the nursing home and saw she was breathing heavy as she was on the 30th of April, Brent had the nursing home call 911; when she arrived at the hospital, she had many tests. The emergency room doctor told the family that Carolyn, who was only sixty-six years old, had less then a fifty percent chance of survival. The pulmonologist reviewed her tests and diagnosed her with acute respiratory distress syndrome.

Brent had never heard of ARDS before. The doctor called Brent’s dad and advised that nothing more could be done; he said that they were sending her back to the nursing home and calling hospice in to make her more comfortable. About a week and a half passed, and Carolyn seemed to be doing well, when a call from the nursing home advised that she again was doing poorly. They said to get the family together and come to the nursing home.

Brent was the first to arrive. When he entered the room, Carolyn breathing was labored. The family was at her bedside holding her hand when Brent gave her a kiss and said, “I love you, Mom.” Brent’s mother took one more breath and then, no more. That was November 21, 2003. At 11:00 pm, Brent knew that for his mother, there was no more pain. Brent’s family laid her to rest on November 24, 2003. Carolyn is survived by her husband, two sons and eight grandchildren. Brent resides in Indiana.

Tina, from Westminster, MD is a two time ARDS survivor. At the age of, 41, Tina went to the hospital on June 1, 2001, for what was to be fairly routine surgery: a stomach hernia. Unfortunately, Tina developed a staph infection which was not adequately treated and then developed both bacterial and fungal sepsis, and then ARDS. Tina does not recall much about that time, because during most of it, she was in a drug induced coma. However, she lost sixty pounds and suffered massive muscle wasting. She also developed seizures from the lack of oxygen to her brain. Tina remained on the ventilator for 29 days, and then was moved to the telemetry unit for 6. Because of her insurance, Tina was sent directly home instead of to a rehab facility. Tina was so deconditioned that she could not feed herself without assistance, or even bathe.

Because Tina never had a trach done, the left side of her vocal cords were left paralyzed from the ventilator tube. She required about 6 months of voice therapy to learn how to talk and eat again. Tina still has trouble swallowing. The most difficult thing for Tina to accept about this was that if the staph infection had been treated adequately, perhaps none of this would have happened.

Tina has two daughters. Kristi is fifteen, and Kassi is thirteen. Tina spent 16 years in the Army. She was going to college full time and working part time as a math tutor when she became ill. Tina has not been able to work since. The first time she had ARDS was very traumatic for her daughters. At that time, they were 10 and 12 years old. Although Tina's own family is somewhat limited, she has a very large church family who were willing to step in and help with her daughters during that difficult time. When Tina finally came home from the hospital, she could not have made it if it weren't for all of the meals they provided, errands they ran, etc. Tina says that they were truly a blessing. They helped to arrange nursing care for her and coordinated with the county health department to have a home health aide come in five days a week to help. Tina could not have kept her family together without those services. The health aide stayed until Jan 2003. She worked with Tina as she began in a wheelchair, then graduated to a walker. She helped her make minor accommodations in her home, so that she could be more self sufficient.

Tina's oldest daughter, Kristi, had a really difficult time with Tina's illness and absence. At one point, Tina's sister had made the decision to remove her from the ventilator because the doctors were convinced there was no hope. Kristi threw such a fit about them killing her mother, that they decided to wait a few days until she came to accept the idea. As Tina says, " Miracles do happen." While they were waiting for the right time to pull her off of the vent, she started to improve. Tina feels she would not be here today if it weren't for Kristi's lack of emotional understanding of what they were doing. For that, Kristi will always have a special place in Tina's heart.

The second time Tina developed ARDS began on September 24, 2002. Again, it was supposed to be a fairly routine surgery. Tina was scheduled to have a minor repair to her chest wall. It would normally be an outpatient procedure, but the doctors elected to keep Tina in the hospital overnight because of her medical history. The surgery went fine, and Tina did well for the first night. Then she began to develop a fever, and by morning, her oxygen was down to 78 percent. Because Tina had this surgery at a different hospital, she was assigned a different pulmonologist. Due to her past episode of ARDS, and the length of time she was on the vent, the pulmonologist was concerned that if Tina were to be vented again, it would be more difficult, if not impossible, to remove her from the vent. He elected a different treatment protocol. Tina recalls most of this, because although she was sedated, she was not in a drug induced coma.

The pulmonologist began massive doses of steroids and antibiotics, as well as C-pap, and then later bi-pap. Even though they were pushing 100% oxygen into Tina's lungs, her po remained between 78 and 85 for approximately two weeks. The pain of oxygen being forced into her lungs was so unbearable she begged to be vented again. By the third week, her oxygen was up to around 90 , but if she removed the mask to even sip water, it would drop back down to the 70's. After only a few days, Tina improved enough that they could switch her to a nasal canula on 60% oxygen. Tina rapidly improved and was released from the hospital within a week.

When Tina was finally released from the hospital, she was in an even weaker and more debilitated condition that the first time. Again, Tina's church family rose to the occasion. They provided meals until Tina was again able to cook.

Now, Tina gets around with a cane, and can even go short distances with it. She still cannot do steps, or walk very far. Tina's physician finally agreed recently that she needs an electric wheelchair (or scooter) to give her more freedom and independence. She is currently anxiously awaiting it's arrival.

Tina continues to make her rounds with the specialists in the hope that her quality of life will continue to improve. She also continues treatment for PTSD and depression. ARDS altered her life forever, and she is not ashamed to admit that she sometimes needs help with coping with those changes.

Finding the ARDS Foundation on line was the one thing that made the biggest difference in Tina's post ARDS recovery. There were so many physical and emotional problems, post-ARDS, that Tina was beginning to think she was losing her mind. It was such a relief to her to read the information provided from the ARDS foundation, as well as the stories of ARDS survivors. Tina finally realized that she was not all alone in what she was experiencing. Tina thinks that was the first time she truly felt at peace since her illness.

Tina does not know why she developed ARDS twice, and she does not know why she was one of those lucky survivors twice. She has learned not to question that. What Tina has learned is to accept each new day as God's greatest gift to her, and to try to make the most of each day.

Candi N. Bartlett was 35 weeks pregnant and developing preeclampsia. Her blood pressure was 176/123 and she had developed a very bad dry, constant cough. Her OB-GYN admitted her to the hospital in Georgia on January 13, 2004.

Not long after being admitted, twenty-three year old Candi started having difficulty breathing. They put her on oxygen and Candi said she felt like she was suffocating. They swabbed the inside of her nose to test for the flu, which came back positive. Candi was tested for a pulmonary embolism and a venous leg doppler to rule out a blood clot. Both tests came back negative.

After Candi returned to her room, her water broke. They noticed that there was meconium in the amniotic fluid. Candi labored through the night and she was exhausted. At 1:43 am, on January 14, 2004, Candi's daughter, Kayla Michelle was born, though not breathing and very floppy. Kayla was immediately turned over to a special team of lung doctors, put on a ventilator and taken to the NICU. Kayla was later transported to another hospital that specializes in Neonatal Emergencies.

Candy was so worn out, but could not rest or sleep. She still complained of difficulty in her breathing. Candi's breathing was so labored, her body jerk when she breathed, and her breaths were very rapid. On January 17, 2004, her O2 sats went down to 78 and Candi was rushed her to the ICU. About ten minutes later, Candi had to be put on a ventilator. They said that if they did not do this, she would die.

It was at this time that Candi was diagnosed with ARDS. Candi's mother, Gloria, saw her before they intubated her, and she looked terrible. Gloria told Candi that she loved her and she left the room to let the medical professionals work; when the doctors came out of the room, they told Gloria that they had to paralyze Candi, sedate her and restrain her. The thoracic surgeon put in a central line, there was a feeding tube down her nose for nutrition.

About 45 minutes later, the doctor came back out and said that they did not think Candi would survive. As a last resort, they said they would try an experimental drug called Xigris. They administered the Xigris for 96 hours. Other than that, the doctors said that they had done all they could do and if Candi was going to pull through, the family needed help from above. And that is what they did, calling their Pastor and everyone they knew for prayers and prayer chains for Candi.

The doctors told them that Candi's flu had gone into viral pneumonia and the viral pneumonia had gone into bacterial pneumonia and then she developed sepsis. The following morning when they visited, Candi's nurse said the Xigris had started to work, her blood gases had come back very much improved, and her lung x-ray from the night before to that morning was just a miracle. Though Candi was still critical, she appeared as though she would survive. She remained on the ventilator until Tuesday, January 20, 2004, and then Candi was transferred to a regular hospital room and on January 22, 2004, Candi went home. That was when Candi was able to really see her daughter for the first time, to hold her and be with her. Kayla had come home the day before Candi. Now mother and daughter are together and both seem to be doing fine.

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Patrick Cuff's ARDS adventure
Photo of Patrick

In May 2001,41 year old Patrick Cuff had an accident. He was 35 feet up in a tree when a large piece he was cutting fell the wrong way and took him with it. It was a 500 lb piece that Patrick's brother lifted off him, simultaneously pulling Patrick out of the way.

Patrick was taken to Harborview Medical Center in Seattle with a punctured lung, broken ribs and soreness. He was in the hospital for four days during which time he had thought that those were the worst of his medical concerns. But on that fourth day, Patrick developed ARDS. He was taken to the ICU, ventilated, put on a roto-bed and strapped in tightly. Patrick was on the vent for three weeks. He remained in the hospital for seven days after he came off the vent.

During that time, he recalls a series of dreams. The most memorable was one where his brother (who was with him when he fell out of the tree) and he had just come through a mechanical maze and were surrounded by a four foot high chain link fence. There were a couple hospital orderlies talking badly about me but Patrick could not get up; he was exhausted. The exhaustion, not being able to move and being hot related, he believed, to being tied down on a rotating bed and having a fever.
In the dream, Patrick remembers a question being posited to him: "Do you want to live? If you do you have to get up and fight."

Patrick was never saw himself as a person with a strong will to live. But Patrick realized that this is what he would need and he started swinging at the two ill speaking orderlies. He cannot say if it happened simultaneously, but in the ICU unit, the nurses had untied Patrick to clean him. At that time, he went berserk, pulling tubes out and swinging like a mad man. Patrick believes that this event was pivotal in his life: Patrick had to fight for his life.

Since he was in good shape when the accident occurred, Patrick's recovery was not too bad. Right now, he is back in school, applying to nursing schools. Patrick has always wanted to work in the health care field; now he feels the time is right for him to embark on this career of helping others as others helped him.
In every cloud-if you look-there is a silver lining.

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On November 18, 1998, forty-two year old Sherryll went into the hospital for a revision of her intestines. She had been having problems from an earlier surgery, from 1990. Although the surgery went well, three days later, Sherryll became very ill and was unable to keep fluids down.

Her doctor discovered she had a small bowel obstruction. A second surgery was performed. After that surgery, Sherryll's temperature climbed to 105 degrees. The doctor removed the central line to determine whether there was any bacteria on the tip. There was and they thought this was the cause of Sherryll's fever. She then became septic. A CaT scan was performed, which showed she had double pneumonia.

Sherryll was put into CCU. The next day, her chest x-ray showed early stage ARDS. It did not take long for Sherryll's condition to deteriorate. She recalls being in CCU, fighting for every breath. Sherryll's sister, who is a nurse, was with her, and she recalls telling her, "Sis, smoking is not worth this, please promise me you will stop." Sherryll had been a smoker since she was twelve years old. Her youngest sister, Kim, told her that she would quit and than she said that if her O2 stats kept dropping, a ventilator would be necessary.

At 2:00 AM, that Sherryll's stats dropped into the low 50's, she was intubated. She does not remember this, but Kim told her what happened after that point. Sherryll was put into a drug induced coma and ten days later, she had a trach put in at which time, she coded.

The doctor told Kim that Sherryll had a fifty percent chance of survival. During that time, blood cultures showed that Sherryll had enterococcus and sputum cultures showed pseudomonas (fungus in the lungs). On December 28, 1998, test showed marked deterioration in Sherryll's respiratory status. It was not until January 10, 1999, that Sherryll showed modest improvement in her oxygenation and respiratory acidosis.

Her medication was reduced to try to bring me Sherryll out of her induced coma. Only Sherryll did not wake up. The doctors told Sherryll's family that she had brain damage and the decision was made to make her a DNR. Her system was shutting down, she was going into kidney and liver failure. Sherryll's sister kept a journal which helped her significantly.

When Sherryll came out of the coma over a month later, she was paralyzed from the neck down. She did not know anyone for several days than her sister; they asked Sherryll if she I knew her sister and the pictures of her grandchildren and Sherryll blinked her eyes to say yes. She was very scared since she could not move. She was completely dependent on her family and the nurses. Sherryll got a bed sore and starting getting drop foot. Luckily, her sister caught both before they became to big a problem.

Sherryll's doctors did not know why she was paralyzed and they did not know if she was going to come out of it. It was 28 days later that Sherryll moved her big toe. When her legs started waking up, she cannot explain just how painful that was. The doctors told her family that she was indeed a miracle.

But Sherryll still had a long road to recovery. On February 9, 1999, Sherryll was transferred to Oklahoma City to be weaned off the vent, which was extremely difficult. Sherryll experienced panic attacks. She even told her sister, "Please take me home so I could die there." But her sister reassured her and told her that every step that she took was one step closer to home. She told Sherryll that her grandchildren needed their 'Nana.' So, Sherryll worked hard and after being on the vent for four and a half months, she finally was weaned.

When she was able to set up in a chair for two hours, they transferred me to Jim Thorpe Rehab. They were wonderful at that facility and Sherryll learned to walk, talk and just take care of herself again during the three weeks that she stayed there. On April 14, 1999, Sherryll finally, after six long months, went home. Still, she needed home health and physical therapy for nine more months. Sherryll was able to drive a car nine months from the day she was discharged from the hospital.

ARDS changed Sherryll's life forever. She was a nurse (LPN) and a floral designer. But her true passion was dancing. She has not worked or danced since her illness. She also lost everything because she was on disability. But with her strong faith and with Gods, Sherryll has begun to live again. Sherryll returned to college in the Fall, 2000. Her first semester, she had a 4.00 GPA-obviously no brain damage here. She currently has a 3.29 GPA. Sherryll carried oxygen 24/7 until September 2002 and she still has to wear it prn.

Although school is challenging because Sherryll has some short term memory loss, it is getting better, because all the reading and studying is helping with those issues. Sherryll has also been diagnosed with Pulmonary Fibrosis and suffers from chronic pleurisy. She wear wigs and has for several years. She is a diabetic and has compassion fractures in my neck and back from the steroids. She lives in consent pain. But Sherryll makes herself get up every day and tries to live life to the fullest. She has three children and four grandchildren. Sherryll says that in light of all of these ailments, "God has truly blessed me in many ways. I can count seven everyday. I am no longer married. Yes, my life is and has been hard but I also know you are the one in control of your emotions. You can make a choice to be happy or unhappy. Most days I choose to be happy. It has taken many hours of crying, praying and counseling to get to this point. I still have my pity parties, but I see my grandchild smile and say I love you Nana and I feel blessed."

On February 20, 2004, thirty-three year old Mark Kardasz felt like he had a cold and a cough coupled with severe back pain. The following day, he went to the ER, where Mark was told that he had pneumonia; he was sent him home with zythromax. He spent February 21st and 22nd at home feeling terrible, he was pale and sweaty, coughing and in severe pain. His family never imagined how sick he really was.

On February 23, 2004, Susan, Mark's wife of six years, went to take him to their doctor, but Mark started falling down, his speech was slurred and his eyes looked funny. Susan called an ambulance instead and Mark was taken to Mercer Medical Center in Trenton, NJ. They admitted him to ICU.

While in the ICU, none of the antibiotics worked and everything that Mark was tested for came back negative. On February 26th, Mark seemed a little better, but later that night they had to put him on the respirator. The following day, Mark's doctor said that he felt it best to move him to Philly, so Mark was transferred to the University of Pennsylvania in Philadelphia.

That is when Susan and the family was first told that Mark had ARDS. They were hopeful for Mark due to his age and because Mark had no other medical problems prior to getting ARDS. While in Philadelphia, Mark was on the respirator and heavily sedated. Only for the first day was on a paralytic. During his time there, the staff was able to get Mark down to 50% oxygen, and he remained in the same condition his entire stay there, still with ongoing fevers and no significant change in his condition. However, antibiotics did not seem to help, and anything tested for came back negative. Mark was otherwise was healthy with no prior medical conditions except for epilepsy. The doctors kept searching to see if there was anything else underlying this all, but found nothing.

Then on March 6th, everything changed. Mark went back on the paralytic and up to 100% oxygen. Late that night, Susan received a call that said that Mark had taken a turn for the worse. He was coughing even though on the paralytic and they could not get enough oxygen in him and were using the bag on him. They were trying to maintain his blood pressure and O2 saturation. But it quickly kept worsening, and in a matter of hours, Mark then lost his battle.

Mark A. Kardasz leaves behind wife, Susan, of six years, his three year old daughter and sixteen month old twins.

Mark was many things to many people, a son, brother, husband, but most of all, he was a wonderful and loving father to his children who, sadly, he did not get an opportunity to bid farewell. He will be missed. The world is a poorer place...

Dana Raymer, was seventeen years old and seven months pregnant with her daughter. Dana went to her doctor on July 21st, 2000, with terrible pains in her right side. Her physician told her that it was labor pains but Dana knew, deep inside, that it could not be. Of course, it was not.

The medical professionals then tapped on the right side and told Dana that she had a kidney infection so she was scheduled to go to Methodist hospital, in Indianapolis, Indiana. When Dana arrived, she laid in the hospital gurney for at least an hour when she began to feel extremely cold but her mother told her that in reality, she was burning up.

Dana's temperature had spiked to 105.0 degrees. She was septic. Dana was given fluids by I.V. but all of a sudden, she could not breathe. Fluid had got into Dana's lungs. While sitting there, Dana had been thirsty, but she was not allowed to drink. However, she had to drink glucose.

Dana was intubated that night as she had aspirated the glucose into her lungs; they told her that she had pneumonia. After that point, Dana was put into a medically induced coma and does not recall too much after that.

However, Dana had many horrific dreams, seeing things that were not really there. Dana had to have two chest tubes on her left side because her lungs had collapsed while on the vent.

When Dana emerged from the coma, it was August 26th, 2000. She was not able to speak, due to the trach, but she woke to find that her baby girl, Diamond, had been born on the 21st of August and was fine! Dana's doctors kept telling her mother it was going to be either Dana or her child and even if Dana survived, she would not be home until after Christmas.

But soon after Dana awoke, she began a physical therapy regime and after three to four days, decided it was time to get on her feet and get better for her daughter.

Dana left the hospital on September 10, 2000, six days before her eighteenth birthday and Dana's daughter came home the day before her birthday. It was an extremely difficult experience for Dana and her family but they all were survivors!

Today, Dana is twenty-one and her daughter is three. Dana says, " If GOD brings it to you, he'll bring you through it."

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.

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