undiagnosed repeating pneumonia

[herdingcats]

I had bilateral pneumonia in late July, so bad I was in ICU. Healed completely, no scars by August 15. By September 14, I had bilateral pneumonia again, was admitted, and sent home two days later. Ten days after that, I was flown to a level 1 hospital to be put on a respirator (ventilator?). An open lung biopsy was done to see what the cause was. May Clinic thought it might be BOOP. A few rare cases have been linked to Neurontin, which the octor in July put me on for neck pain from a bad fall. I now have bad scars in my lungs, possibly pulmonary fibrosis. My doctor is currently calling this an Acute Lung Injury,
It could be related to a REALLY bad disc at C4-5 which is compressing my spinal cord, maybe. Both the pulmonologist and the neurologist seem to be thinking that, from comments they have made. maybe I can't breathe deeply enough becuase of damage to the nerve that feeds the diaphragm. New MRI on my neck next week.
If ANY of this sounds familiar, plase jump in with suggestions.

[SheilaL]

Hi, I am new to this site. What is BOOP? I too have a lot of scars from pneumo over the years as well as bronchiectasis.

[herdingcats]

Thanks for the reply. BOOP is bronchiolitis obliterans organizing pneumonia. It means a pneumonitis with no known (or found) infection, but that keeps coming back, sort of hiding out in your lungs until it gets a chance to strike again. They sent my biopsy to Mayo Clinic, and the report they got back suggested the it was probably BOOP, caused by a medicine I was taking for pain. It is a rare response a very few people have had to Vicodon or Neurontin. That's one of several kinds of BOOP. My doctor disagreed and says it is an Acute Lung Injury of no currently known origin, possibly hypersensitivity pneumonitis, but on the paperwork he is calling it PF.

[bobbi33]

I feel like we have most of the same sympotms, I swalled a vitamin that went into my right lung, I've had pneumonia for the last 3 months they are talking about putting a stent in, but i'm vary leary i woke up really sick this morning my arms and mouth went totally numb and tingly, I almost felt like i had a minni stroke but my brathing has been real bad latley and my side has been hurting for months. please help, i would love to talk on the phone id you would like..
Bobbi
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