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ARDS
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| ARDS Kristen, The World is a Poorer Place..., |
On February 12, 2005, Thomas spoke to his daughter, Kristen, who was seventeen weeks pregnant. During the conversation, she told her dad that she was not feeling well, her back was hurting. Kristen had been to her OB, but sent home.
On February 19, 2005, Kristen was still not feeling well. However, she was unable to get to another doctor without access to a vehicle. On February 26, 2005, Kristen did not answer the phone when her father called. Then on February 27, 2005, Thomas learned from his son that Kristen was at Baton Rouge General, in the ICU and had been there since Saturday morning. Kristen had a kidney stone.
On February 28, 2005, Thomas took the first available flight out of Fort Lauderdale and into New Orleans, where they then went to the hospital.
On March 1, 2005, Kristen's condition continued to deteriorate. On March 2, 2005, Kristen was heavily sedated and chemically paralyzed.
Over the next week Kristen would improve one day and then her health would decline for two days. Early one morning, at 1:00 a.m., Thomas learned that Kristen's health was deteriorating.
Finally, because the fetus was not normal, had no chance for survival, labor was induced. Almost immediately after delivering the baby, Kristen showed great signs of improvement. Still, the roller coaster continued.
On March 21, 2005, at 1:50 a.m., a nurse from ICU came into the waiting room, woke Thomas up and said that Kristen's health was deteriorating. Sadly, at the young age of nineteen, Kristen passed away, too young, too soon.
Her father, Thomas, said that Kristen's illness began with a kidney stone which created a blockage causing an infection that eventually spread through her body; the severe kidney infection triggered ARDS which ultimately took her life.
Kristen is survived by her father, Thomas, and her brother, Thomas II, who both profoundly feel her loss and miss her more than mere words can say.
Silvana Breur, who lives in Rotterdam, The Netherlands, is thankful.
In February, 2003, Silvana went to the hospital for her third surgery on her jaw. The previous unsuccessful surgeries were in July, 2002, and August, 2002. At that time, the then thirty-nine year old Silvana hoped that this would end her medical problems.
Her surgeon told her that she would be in the ICU overnight. But that was not to be. Silvana had problems with her lungs coupled with difficulty breathing. Three days after, a trach was performed at the urging of Silvana's mother.
Silvana was in a coma for fourteen days. She required at least one chest tube. She was in the ICU for three weeks. She spent a couple of nights out of the ICU and then asked her doctors if she could go home early. Since she had a of family help, she was released.
When she came home, Silvana was so weak; she could not dress herself and people came into the house to help her with the cleaning. Though she wanted physical therapy, she received none.
Six months after getting ARDS, Silvana thought she could return to her part time job as a receptionist. But it was too soon. It took a full year to recover. She was diagnosed with diabetes afterwards. She has lost the feeling in some of her fingers and at times, she feels disoriented. But Silvana feels it was not her time to go, that she has more to do on earth.
Silvana lives in The Netherlands with her teenage daughter and son. She wants to talk to others who have dealt with the same challenges that she has since ARDS.
Renee's mother, Jane M. Gruby, went into the hospital to have her gallbladder removed via a laparoscopic surgical procedure, and she never came home.
Jane lived near the Adirondack Mountains, in the Northern portion of New York State. Renee lives nearby.
When Jane came out of the operating room, she had difficulty breathing. After one week, she was moved to the ICU unit. Jane's family was told that she had pneumonia. Although Jane had an oxygen mask, she was not getting enough oxygen so she was intubated. After two weeks she needed to have a trach.
Jane did not want to have the tracheotomy, but they all hoped that she would survive. Jane's doctors thought that she had a hematoma on her liver and surgeons did exploratory surgery to determine if it was a hematoma or not. What they found was that it was a huge puss sack and there was dead tissue all around where the gall bladder was. She had several drain tubes at this time.
Although Renee said that sepsis was never confirmed, Jane's pneumonia was caused by bacteria that they thought may have come from the intestine. The exploratory surgery exposed how diseased her gall bladder really was.
Jane was battling to have the gall bladder removed for three years. There were may nights Renee spent with Jane's sister in the hospital, thinking that she was not going to survive. It seems that there was nothing else the ventilator or the medicine could do for her.
Jane developed diabetes, blood clots and neuropathy in her extremities. And because Jane fought the vent all the time, so she was in a drug induced coma for most of the three months.
Renee spoke to her mother all of the time and she hopes that she heard her. They gave her so much Heparin that her tissues started to bleed. The doctors gave her fluids and then had to give her lasix so her kidney could still function. Furthermore, she did not tolerate the tube feedings; sadly Jane was just fading away to nothing.
On May, 24, 2004, with her family at her side, Jane lost her battle with ARDS. Renee says, "Those three months will never be forgotten, as well as her love for her grandchildren and her will to live. She was a very strong person and she is no longer in pain. " Renee find that this statement says it all: 'Peace I leave you with, my peace I give you.'
In the early morning hours of February 19, 2005, after a restless night's sleep with abdominal discomfort, thirty-five year old Fred could not stand up from the pain, and had his spouse, Ruth, call 911. Paramedics arrived in less than five minutes, and took him to the nearest hospital, which just happened to be the renowned St. Michael's Hospital in Toronto – the hospital that had treated a lot of the SARS cases in Toronto, back in the year 2003.
By the time he had arrived at the hospital's ER, less than ten minutes later, his blood pressure was 80/60, he had developed a fever in excess of 40 degrees, his white blood count was very high and he was spitting up pure blood.
The doctors knew this was a very critical situation, and their mission was to first stabilize him, and have him transferred immediately to the ICU. Once in ICU, he was locked in isolation, put into a drug-induced coma, chemically paralyzed, and placed on full mechanical ventilation. Tests were being constantly done, and the initial thought was that the nature of the ailment was pneumonia, complicated by sepsis. The chances of survival were pegged at 10% that first day. The dedicated ICU staff member assigned to Fred, was in and out of Fred's isolation room literally every five minutes, to monitor all vitals, during those first three days.
Fred's doctors performed a myriad of tests to try and determine the exact cause and nature of the pneumonia, which did not appear to be responding well to the antibiotics. The main objective of the ICU team was to stabilize him to the point where Fred could get off of mechanical ventilation at the earliest possible opportunity, in order to prevent secondary infections and/or permanent lung damage.
During the next few days, Fred's condition showed very slight improvements only, sometimes with setbacks, with each passing day. Fred's family set up a prayer group, which encompassed nearly 500 people who were praying for Fred each day. A miracle was needed, and the prayers were answered.
On March 3, 2005, Fred was taken off of mechanical ventilation and released from confinement in isolation. By March 7, 2005, he was moved out of the ICU and into a regular ward, where he experienced severe withdrawal symptoms from some of the drugs used during his stay in the ICU. He also lost 25 pounds, weighing just 120 pounds, and was unable to walk even to the washroom. He was unable to eat, due to extreme shaking from the withdrawal, and needed to be fed by his spouse, family members and nurses.
Finally, on March 15, 2005, Fred was discharged from the hospital and, as of May 4, is still not fully recovered from some of the muscle atrophy. The exact causes of Fred's illness has never been discovered, although the doctors began to treat it as ARDS, within the first several days.
Fred feels like he has been given a second chance at life, and is eternally grateful to all those who stood by him in this time of crisis. He also considers himself inexplicably fortunate to have been brought to St. Michael's Hospital, a teaching hospital affiliated with the University of Toronto, where both the head of critical care (ICU) and the head of the critical care research department take a stated special interest in Acute Respiratory Distress Syndrome.
Sarah was diagnosed with ARDS in April, 2004. She was twenty-seven years old. Sarah, who lives in Monessen, PA, went to the hospital with cellulitis of her jaw from a tooth infection. Three days later, she began to feel extremely fatigued. She was having difficulty breathing and felt as though something was stuck in her throat.
When he nurse came into her room to check her pulse ox, she thought that the machine was broken. It was at 36! After repeating it three times, they finally did a blood gas which came back at 32.
Sarah was rushed to the ICU. Sarah was 'blue' from head to tow. First they did a CT scan to make sure Sarah did not have a pulmonary embolism, which she did not. Sarah was put on a BiPap machine, which took her breath away.
Fourteen days later, Sarah awoke. She had bilateral DVTs in her legs, Although Sarah has no recollection of that time, her Mom told her that she was aware of what was going on and wanted to know everything. She had a stack of papers that she wrote during that time.
Sarah's eyes were blood red; the blood vessels in her eyes blew out. Sarah received an antibiotic drug called Ruffinen. Sarah's Mom was told several times that her daughter would not survive the night, but Sarah proved everyone wrong.
The doctors believe that when she had the infection in her tooth, which she had previously had a root canal, caused cellulitis in her jaw. The bacteria went to her lungs and 'spread like wildfire.' Sarah then developed pneumonia and sepsis. Sarah received three units of blood.
Thirty days later, Sarah was discharged from the hospital. She needed two liters of oxygen for three months and coumadin for six months.
Although it has been about a year, since Sarah's illness, she is still suffering post
ARDS issues. Sarah sometimes has difficulty breathing, especially with humidity. She also feels a lot of anger and some depression. Her memory is not as good as it used to be before she had ARDS. Sarah finally has been able to gradually increase her work load to a full time schedule. Her mother says that she is not the same person that she used to be. Sarah agrees but is trying to take it day by day.
On March 23, 2005, Janice was diagnosed with ARDS (acute respiratory distress syndrome). No one in her family had ever heard of it; not her 84 year old parents, not her sister, Carolyn, nor her children, grandchildren, or other family or friends. So it came as a shock to them when they found out that over 150,000 Americans are diagnosed with ARDS each year and half of those patients will die.
Janice fought for five long weeks and had excellent care. But with ARDS, sometimes even the best care does not matter. ARDS is cruel; ARDS is relentless. It has easily earned its reputation as a roller coaster, as each day may bring another dilemma or crisis. Sadly, on April 27, 2005, Janice, who just turned sixty last December, lost her fight.
During those long weeks, Janice's loved ones searched for information about ARDS. In researching ARDS, they discovered how many other families face what they did. They decided that they wanted to help the fight against ARDS however they could.
The family is dedicated to helping raise public awareness and also want to bring folks together who have experienced the ARDS roller coaster. They have formed a support group in Southeast Louisiana. For more information about this support group, click here.
Judith Hoffman was fifty-one years old when she was trying to get approved Gastric Stapling from her insurance company. However, her insurance would no approve it. Still, Judith wanted to go ahead anyway. First she went to Ohio State University, but they told Judith 'no.' Then a surgeon who only does Gastric Surgeries also said no. Judith ended up at the Bariatric Treatment Center.
All Judith recalls is going in there. Her brother, who was with her, told Judith later that after they ran blood work, her blood gases were out of whack. Judith was also having severe breathing problems.
She ended up in the hospital for three weeks with a trach and on a vent. Judith still has the trach. Then Judith went to a nursing home/rehab center where she "woke up" not remembering a thing. She was in the nursing home for 6 months being weaned off the vent. In the process Judith lost over 100 lbs.
Judith came home in September, 2004. She is on oxygen at night, basically 4 liters. When Judith came home, she had some very vivid dreams but has heard that is normal. She also had some memory loss. According to Judith's primary care doctor, on paper, she is a woman in excellent health, but with a trach. She really feels that her ARDS was caused by her obesity.
Judith was 100 lbs overweight when she decided to try and get the surgery. She says that she thought the surgery was easier than trying to diet. Now, after doing further research, Judith feels that this is not the answer. She realizes that people can die or have serious medical problems afterwards. Ohio State, and the surgeon, told Judith that she did not have the right attitude. When I found that out I wondered what the "right attitude" was. Same with the surgeon.
Judith retired after thirty years from the State of Ohio. She now does what she really enjoys, which includes exercising two to three times a week and caring for her eighty-two year old mother.
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On June 8th, 2005, thirty-seven year old Mechelle, began to feel like she had the flu. She came home from work, took a hot bath and went to bed. On Thursday, the 9th, she was so ill that she could not get out of bed.
Her husband, Chris, kept insisting that Mechelle go to the doctor, but she had felt like this before and thought she would be OK. The next day, she called her mother as her husband was at work. She felt much worse.
Mechelle's mother took her to the doctor where she learned that she had 105 degree fever and blood in her urine. Mechelle went to the hospital for IV antibiotics and was admitted.
Although she had every imaginable test, no cause for the infection was discovered. They said she was the healthiest sick person in the hospital. But that was soon going to change...
On Tuesday, before a scheduled spinal tap, Mechelle developed breathing problems. After changing her O2 delivery and giving her breathing treatments all day with no improvement, she was transferred to Post Intensive Care for closer monitoring.
On Wednesday, at about 2 AM, Mechelle's breathing was so bad she could barely tell her husband to get her help. She was ventilated and at around 5 AM, her blood pressure was extremely low; she was transferred to the ICU.
The doctors knew immediately that Mechelle had ARDS and her family was given little hope. She had a total white out in both lungs. She was on the vent for ten days and that day, the doctors were going to do a tracheotomy; somehow she awoke and told them to take the tube out!
Two days later, Mechelle was in a private room and the following Tuesday, she was home. One doctor said that Mechelle's ARDS was due to pancreatitis but another was not convinced. Currently, Mechelle is facing swelling with her liver and trying to find out why this is happening.
Mechelle's husband kept a journal while she was hospitalized. Mechelle cherishes this as she feels as though she has been able to get a part of that time back by being able to read about what was going on with her and her loved ones.
Mechelle, her husband Chris, and children Travis and Lanie, live in North Carolina.
Vicky Young, from Georgetown, SC, is a grateful survivor of ARDS. On Thursday, February 17, 2005, fifty-two year old Vicky went to the doctor because she had not felt well for almost a year. Her doctor told her that she had Bronchitis and the beginning of Bronchial pneumonia. And that was the last thing that Vicky remembers.
Her husband, Craig, later Vicky that she had cooked supper that night; the next day she did not go to work or get out of bed. On Saturday, Craig said that Vicky seems a bit better but he could hear the wheezing and was somewhat concerned. Vicky brushed it off.
On Sunday, February 20, 2005, Vicky's life changed completely!! Craig could no longer listen to her gasping for air and he called 911. Vicky was taken to the hospital and admitted into ICU. She was placed on a ventilator and put in a drug induced coma.
The doctor told Craig that Vicky was critically ill and it would be a good idea to call any family members, just in case. Vicky was diagnosed with sepsis and she required a blood transfusions.
Vicky remembers waking up and not knowing where she was. She remembers the look on Craig's face the first day she recognized him.
Vicky spent two and a half weeks in a coma. Vicky could not understand why she could not go to the bathroom, walk down the hall, or move her arms. Vicky became frustrated. She had hallucinations about the flowers in her room and a clock on the wall, and thought that she saw family members who had died.
After Vicky was discharged, she went to a nursing home for about one month of rehabilitation. The nursing home was the most depressing place, Vicky felt helpless and useless, and she begged her husband not to leave her there. But staying there was the best place for her. Vicky realized that if she was going to get out of there, she had to do it herself. Luckily, Vicky had a lot of support, along with her husband, her sister, mother and daughter cheered her on. And cards with prayers arrived from all over.
During the first week in rehab, Vicky had one setback, a blood clot in her right leg. She went back to the hospital for another week.
Vicky set a goal to be home by mother's Day and on May 3, 2005, with the help of a walker; she waked out of the nursing home. On Friday the 13th, Vicky returned to work. She figured the odds had to be with her that day!
Vicky also has about six weeks of outpatient PT. She still has her 'melt down' days but they are getting farther apart. She realizes just how precious life is and tells Craig every day how grateful she is to have him in her life. Vicky is so incredibly thankful for her family and for all of those who saw her through this. Her message is that there is hope for ARDS patients, just have faith and believe in yourself.
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Carlos, 39 years, is a Brazilian sergeant in the Air Force. Two years ago began an unforgettable odyssey.
Carlos was brought to hospital 18 Sep 2003, with a bursting tumor in his stomach that resulted in septic shock and ARDS. He was found alone in my apartment and brought unconscious to the hospital admitted to the ICU. Carlos's prognosis was extremely grave.
His friends were told he only had three percent chance of survival, and if he did, he would not be able to run more than 100 meters. Carlos was given a tracheotomy. His family was told several times that he would not survive and he remember doctors arguing about whether to remove him from life support.
Carlos says, " I remember that very time; I called out to God in my thoughts: “Lord, my life isn't in doctor's hands, but yours hands and there's nothing impossible to you." One night, Carlos said that he had a dream. "I hear God asking me: 'Carlos would you stay or leave?' I answered: 'I stay, because of people.'”
After that dream, Carlos got better amazingly quickly. He left the hospital on 31 Oct 2003. (40 days after- 25 days at UCI), walking, without any single injury or needing to take any medicine.
Last week, as a military man, Carlos had to submit to a physical test in which running was involved (a copper test) at his base. There is always an ambulance available near by, but when Carlos's group was supposed to go, an ambulance was not available. They were sent to do their test at the same hospital he had been at two years ago. It was amazing. Carlos was the fastest runner. But for the first time in their life, Carlos won! He ran in perfect health, at the same place Carlos was pushed in a wheelchair two years ago. Carlos felt like he was in the film: 'Chariots of Fire.'
Carlos lives in São Paulo, Brazil. He works in a busy airport, as a sergeant of Air Force, providing aeronautical information service to pilots. Carlos uses his free time doing any kind of voluntary work showing up, mainly Street Children's with CEF (Child Evangelism Fellowship) and Hospital Chaplain. He intends to spend one year in the Air Force and then in the near future, working in an amazon forest base, so he can best be of any help to Christian missionaries working with indigenous group. After his time in the Air Force, Carlos intends to be a missionary full time in which God guide me.
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