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

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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.

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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: 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: 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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