Patient Comments: ARDS (Acute Respiratory Distress Syndrome) - Experience

Question:

Do/did you or someone you know have ARDS? Please share your experience. Submit Your Comment

Comment from: BBL, 55-64 Female (Patient) Published: March 03

I fell off the side of my staircase from the top step just under 3 meters off the ground breaking 12 ribs (all 12 on the left side). One punctured my lung and severed an artery/main vein, broke 14 bones in my back and caused ARDS. I lost 40 percent of the blood overnight and required 3 transfusions, rare blood RH D negative. Following an emergency thoracotomy to repair the lung and vessel I was placed into an induced coma via intubation for recovery and to shut down extreme pain. Extubation failed two times and then I had a tracheostomy.

Comment from: Shortstop, 25-34 Male (Caregiver) Published: April 30

My 26 year old son developed ARDS while in the hospital, so severe they gave him less than a 20 percent chance of survival. He was on life support for weeks, in the ICU for over a month. Somehow he recovered. Things were as bad as they could be. His age and physicality were in his favor. I just want people to know the doctors said as he left the hospital, ‘you weren't supposed to be here now, go do something special with your life.’ The reason I tell the story is to give hope.

Comment from: LSH, 45-54 Female (Patient) Published: February 26

In 2016, a bout with pneumonia led to me being diagnosed with ARDS. I was in the hospital for approximately 2 1/2 weeks with 5 of those days in the ICU on a ventilator. After several months of oxygen therapy, my lungs healed and I felt good as new. In Jan 2019, what started as a common cold then became pneumonia, and then my 2nd diagnosis of ARDS. This time, I spent most of the month in the hospital with 12 of those days in ICU on ventilator. Much tougher recovery this time. I hope I never have ARDS again.

Comment from: Liz Sues Sis, 55-64 Female (Caregiver) Published: October 17

My sister just died from ARDS; she was 57. She had fallen and broken her femur and went in to get that worked on. They put pins in and she seemed to be fine. They sent her to another facility for rehabilitation. She coughed a bit after two days there. They sent her back to the ICU; put her on a ventilator and administered lots of drugs. Her husband decided to take her off the ventilator because he was told she’d have to be on a ventilator for life. It happened so fast. Less than a month. Horrible.

Comment from: Gapeach43, 35-44 Female (Patient) Published: June 04

It was Aug 10, 2017 I woke up feeling really bad and as the day progressed I started having trouble breathing, and had a high fever. I remember going to the hospital and being admitted; at the time they thought I had double pneumonia. Two days later I wasn't getting any better, they had tried everything to get me stable but couldn't, so they admitted me into ICU. This is where things get foggy for me, I remember them telling me that they were going to have to put me in a medically induce coma, and they said I had ARDS. I was in a coma for 16 days and during that time I coded 3 times. They ended up having to put a pacemaker in to keep my heart regulated. During that time I heard some conversation that my family and doctors had. I remember fighting so hard to try to come to and felt like I would be put back under. I saw my kids crying when I coded. I remember the nurse doing compressions during that time. I saw my grandmother that had passed and her telling me it wasn't my time and she loves me but I have to fight to live. I also saw me holding a baby, at that time I couldn't understand because my kids are all almost grown, but I felt this little baby girl meant something to me. I was down in this state for 16 days when I finally was able to be brought out of the coma and the tubes were finally pulled after 2 days of my being awake. I told everyone what I saw and what conversation I had heard. I was in the hospital for a month and rehabilitation for 3 months where I had to relearn everything. This has been the longest and hardest battle I have ever fought to get back to where I am now. What had caused me to get ARDS was my being in the sun, pressure washing a house not diluting bleach properly, and my having two types of lupus the inner and outer. I had known about my having the outer lupus but didn't know I had both. During my stay at rehab I found out I was going to be a grandma. I knew then that baby I was holding was my granddaughter. That gave me the will to fight I believe. I don't know if I will ever completely get over all I went through, it was not just physical, but also mentally challenging. They only gave me a 30 percent chance to come through it and I know that doctors did their part. My boyfriend during the time of my being so sick left me. I have had to come to terms with so many things over the past 10 months. I really have gone through it and reading other people story helps me. So thank you all and I hope mine helps someone someday.

Comment from: Saltydog32 , 35-44 Female (Patient) Published: May 29

Yes. I developed ARDS because I went into septic shock because a doctor accidentally cut my intestines when removing an ovarian cyst. Twenty four hours later I was in septic shock and rushed to the operating room to repair my bowel. I coded three times during surgery and subsequently immediately developed ARDS.

Comment from: Calikidd222, 35-44 Female (Patient) Published: April 10

I had just started summer break because school had just let out (I taught). I just started feeling really crummy on a Saturday and had 0 energy. Soon after I started having chills. As an adult, I have never had a fever. I took my temperature and was surprised to see I had one. Three days later my fever got to 104.5 and I was sleeping 24 hours a day and never felt rested or well. On the third morning, I went to an Urgent Care facility. The doctor did a strep throat swab. It was negative. She advised me to keep resting and to take Tylenol for my fever. I went home and fell right back to sleep. When I woke up that afternoon I felt half delirious and asked to be taken to the emergency room. I was diagnosed with the beginnings of pneumonia. I was admitted overnight for what was thought to be observation and was going to be released the next day with medication. I was placed on a nasal cannula. The next day they put some type of a breathing mask on me. At some point I pushed the call button saying I still was having trouble breathing. They called a rapid response team and came to a consensus that I needed to be intubated or would pass away in about 2 hours’ time. I was placed in a medically induced coma as well as paralyzed. I was also diagnosed with sepsis, severe ARDS (acute respiratory distress syndrome), respiratory failure with hypoxia, acute kidney injury III and a variety of other things. The hospital I was admitted to, advised my family there was nothing more they could do with me and I was Life-Flighted to a larger teaching hospital. I was intubated for 19 days total. During those 19 days my lower left lung collapsed, I had to have blood transfusions, as well as dialysis. When I woke up I had a great deal of cognitive deficits as well as serious muscle wastage. After about four days in a step-down unit I was sent to rehabilitation. I had to learn cognitive skills, dressing skills, and even had to learn how to walk. Thank goodness.

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Comment from: cathymontz, 65-74 Female (Patient) Published: October 05

I became an ARDS (acute respiratory distress syndrome) survivor at the age of 57. I had a severe case of ARDS. I was in ICU on life support for 89 days. I entered the hospital with a UTI (urinary tract infection) and double pneumonia. During the time I was in ICU I was on 100 percent oxygen for 7 weeks. I had a very high temperature, so I was packed in ice to bring it down; and during Thanksgiving they decided to biopsy my lung. However, they collapsed my lung and it took 45 minutes to get it going again. During ARDS I had sepsis and my blood was changed in an effort to reduce the infection. At one point my kidneys began to fail and they thought it wouldn't be long before I passed. They couldn't get me stable enough to move to the operation room (OR) for a tracheostomy. When they took a chance to get me to the OR I had a tracheostomy. I began to recover after the tracheostomy was in. My family had some very hard days. They were told I wouldn't make the night, then they began sleeping in the waiting room, expecting the worst. That went on for 3 months. Finally I began to recover, my kidneys reversed themselves (and there is no explanation they can give as to why they started again). I spent the first year with my lungs healing. After that year I was able to return home. After that year I only needed oxygen at night. That was good for 13 years. I discovered after that that I had lost 1 kidney. I also began using oxygen full time 3 years ago. I will celebrate my 17 years survival of ARDS. I had wonderful doctors and an excellent nursing staff, which makes me grateful for all of their efforts.

Comment from: Gail, 75 or over Male (Caregiver) Published: December 10

My father at age 83 had colon resection surgery, surgery was a success, but patient died of ARDS (acute respiratory distress syndrome). At 53 he had lower lung surgery due to x-ray finding a spot on the lung. It was six weeks until he recovered from breathing problems, and had no more fluid in in the lungs. I have no information as to the lung issue although he was on the same medicine my daughter was on for a 'TB' exposure finding. I did not bring this up to the doctors in the last surgery, I wonder if the two of these incidents could have been related. Perhaps he might have had ARDS the first time.

Comment from: 55-64 Male (Patient) Published: October 29

I was feeling short of breath and had non-productive cough always around December for the past few years. But starting in November 2013 I noticed uphill walking I was very short of breath. By December others at work were sick where I work. On 1-14-14 I had temperature 102.9 and vomiting. I was treated for flu symptoms and for two days I was home fighting flu. On 1-16-14 I was in the emergency room (ER) with 103 pulse and oxygen 84. I spent 42 days in hospital, developed MRSA in heart and lungs. Diagnosis was pulmonary fibrosis to needing lung transplant; my only smoke was from fire pit and grill raking moldy leaves. Final I have ARDS; I was healthy up to this time.

Comment from: Hinkydink, 55-64 Female (Caregiver) Published: October 07

My husband had a tracheostomy 2 months ago. The day after, he went into acute respiratory arrest. I was not there when it happened. I returned back to his room and about 15 people were there. He was cyanotic and starting to turn bluish up to his hips, and I knew it was only a matter of time. They decided to get a portable ventilator, they put that on, and immediately his color was changing, and to ICU we went. I do not know how long it was he was not breathing, no one has told me but it was a while by the looks of him. He doesn't remember things like he used to, he was smart as a whip. I wonder if this will return. I am very worried as a wife and caregiver.

Comment from: E of VA, 55-64 Male (Patient) Published: August 01

I had ARDS (acute respiratory distress syndrome) in 1973 at the age of 21 after surgery for a ruptured spleen. I was told at that time, not many people survived ARDS. I was transferred to a major teaching hospital where they performed a tracheostomy and placed me on a ventilator. My lead doctor had been doing research on how to treat ARDS. He had figured out to increase my oxygen levels. I was so weak I could not lift my head off the pillow or swallow. I was in ICU isolation for a week or so. Several weeks later I walked out of the hospital and 41 years later I am still hanging in there with no residual breathing issues.

Comment from: Charles, 65-74 Male (Patient) Published: May 09

I was admitted to the hospital with pneumonia about 1 1/2 years ago, with an oxygen level of 80. The pneumonia morphed into acute respiratory distress syndrome (ARDS) and I spent nearly three weeks in the ICU, the first several days with a ventilator. After I was released I was on oxygen for approximately two months and soon started physical therapy. I am told by my pulmonologist that my lungs are damaged, but my pulmonary function tests have been normal and I generally feel pretty good. I am fortunate, I suppose, but also feel somewhat depressed at times and reclusive. I attribute those feelings to my bout with ARDS.

Comment from: i3xlucky, 55-64 Female (Patient) Published: April 22

I had surgery in early February. Two days later I was taken to the emergency room (ER) with a strange cough. When I got there my SAT (oxygen saturation) rate was 28%. I was on life support for nine days for ARDS. I also went into septic shock. I was eventually transferred to the rehabilitation unit of the hospital and am once again able to walk, stand, and take care of my personal needs. This was the hardest thing I have ever done. I was told that had I not gone to rehab I would have been in a nursing home the rest of my life. This is very scary stuff.

SLIDESHOW

Respiratory Illnesses: 13 Types of Lung Infections See Slideshow
Comment from: adah, Male (Caregiver) Published: March 03

My husband is 59 years old and had a cough for 3 months. He had a normal x-ray on 2/1, on 2/6 he was admitted to the hospital with a double pneumonia. He is still in ICU and on a ventilator. Now his kidneys failed and his white blood count is low. He also was a healthy man who worked every day and could run circles around me. They need to have an ARDS (acute respiratory distress syndrome) awareness so others won"t let this happen. This is a nightmare and I never heard of this before either.

Comment from: Lindy54, 35-44 Female (Caregiver) Published: February 18

My daughter just died from ARDS (acute respiratory distress syndrome) on 25 January, 2014. She was only 36 years old. She had been coughing for 3 months, with an upset stomach and more and more vomiting, prior to her hospitalization on 5 January. During those 3 months, she had seen her primary care numerous times, a pulmonologist, and an allergist along with a few acute care visits and several emergency room visits. An upper gastro intestinal test on 6 January revealed that a lap band that she had received 2 1/2 years ago had slipped and twisted. On the 7th she aspirated vomit while still in the hospital and ended up on a ventilator. This aspiration is what led to the ARDS. She died having never regained consciousness after the ventilator was inserted. I had not heard of ARDS before this and wish I had never had to learn what it is. ARDS is not a diagnosis to be taken lightly. We are still in shock at the loss of one so young.

Comment from: Chris, 45-54 Female (Patient) Published: April 24

I woke up I think 11 days after not remembering anything. I have a hard time getting medical help for ARDS because that hospital discharged me and sent me home with my family, knowing full well that I wouldn't have health insurance. Nor access to the therapy I need. Frustrated and in the dark I remain not sure what is going on with me. I am in 3 studies yet I can't get help.

Comment from: woobielady, 35-44 Female (Patient) Published: July 30

I suffer daily from acute respiratory distress syndrome (ARDS). It began two years ago following a simple gall bladder surgery. I have been told that I died three times. My family can usually fill in the blanks for me... there are many.

Comment from: shopgirl, 45-54 Female (Caregiver) Published: February 20

My daughter was diagnosed with ARDS (acute respiratory distress syndrome), after being diagnosed with pneumonia. She has been in ICU for almost 2 months and she still has pneumonia. She is hallucinating now. This started out as a colon rupture.

Comment from: Don G, 65-74 Male (Patient) Published: April 10

I had ARDS (acute respiratory distress syndrome) two years ago, I'm a healthy 69 year old male who is now suffering from tooth loss. I wonder if this could be due to the amount of antibiotics and steroids that was injected into me. I've had good sound teeth all my life and now I've lost three teeth in two months and my dentist can't explain why.

Comment from: scuba0620, 45-54 Female (Patient) Published: May 30

I suffered with acute respiratory distress syndrome (ARDS) in October of 2005. Between then and now, therapies and caregiver, I am in my own home and taking free classes online. I can no longer drive but thanks to speech recognition software I can still type! For those who also survived: there have been great strides made for all treatment. For those who have lost loved ones: I too wish you had never heard of ARDS.

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