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Ellen S., AL

Our story is about BOOP; a short story, sadly too short. The love of my life, Pat, and I were best friends, he was my rock - a large burly man full of life. We went on vacation the third week in October to Dauphin Island, Alabama. We went sightseeing, walked on the beach, we were busy each day and both loved every moment. No shortness of breath, weakness or fatigue.

Somewhere between two to three weeks Pat was having some type of respiratory infection, very tired, short of breath, low grade temperature. He was treated by numerous different types of antibiotics, steroids. His chest x-ray had large amount of white areas, but everyone was sure they would find an antibiotic that would improve his lung function. After approximately four weeks of minimal improvement, he drove himself to the hospital after his primary MD said he needed to be admitted for intravenous antibiotics. That was December 8, 2017. He was treated in a major hospital in Birmingham, Alabama. His medical care consisted of a hospitalist, a cardiologist, infectious disease physician, nephrologist and pulmonologist.

After many tests, lab work an open lung biopsy was performed after approximately two weeks of hospitalization. Of course, now we are dealing with the Christmas holiday. He improved and was less SOB so they discharged us home for Christmas. No oxygen, no nebulizer, just lots of new medications. And no diagnosis from the biopsy.

He developed an arrhythmia, renal issues but he was ready to come home from the hospital and all agreed. His x-ray had improved dramatically, minimal white area. Within seven days he became extremely SOB and we went to the emergency room. He was readmitted in Birmingham. After a few days we received the diagnosis of BOOP, bronchiolitis obliterans organizing pneumonia, or also known as COP, cryptogenic organizing pneumonia. Rare, no known cause. Treatment with high doses of steroids. He started on continuous oxygen via nasal cannula, breathing treatments, high doses of iv steroids. We saw a pulmonologist and hospitalist daily. No new treatments. We progressed to BIPAP within days, 60% oxygen, dry cough, extreme SOB. Then 100% oxygen with oxygen saturation rates in the 80s with any exertion, using a urinal or repositioning in the bed. Each day the physicians came in and said, we don't understand why he isn't responding to our treatments.

What is the plan? The response: blank stares.

Pat became weaker, increased SOB, agonal breathing. Just stares! Early January 11, 2018, Pat was placed on a ventilator. At 100% oxygen his saturation rate was still only 70-80%. They now started TPN for nutrition, and had he had received five units of packed red blood cells in the course of a week. Just blank stares from the pulmonologist. He consulted a cardiologist and they recommended an ECMO, extracorporeal membrane oxygenation, a pump to oxygenate the lungs artificially. He coded and never made it out of the operating room.

Upon autopsy his lungs were thickened and unable to perfuse oxygen. If the procedure was not performed, it may have only been a matter of days before he was unable to oxygenate his body, even on the ventilator. Pat was a farmer, grew up on a commercial chicken farm, later became a cattle farmer. Always around dust, molds, herbicides, pesticides and chicken droppings.

Please share your story. We need to find a cause, an earlier diagnosis and new treatments. I loved this man with ALL MY HEART. I will tell this story over and over again so Pat's death will not be in vain.

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