I really started having trouble in 2010. My first real episode was when my family returned from a fair. I had some trouble getting around there, but because I have eased into having breathing problems I didn't really notice anything that unusual. I came home and when I fell on the bed, I couldn't breathe. Crawled down the hall. Couldn't speak. Hubby called 911. That was the start with a pulmonologist. The previous year 2009 I hiked with my son that spring. Spring 2010 I had trouble making steps to my daughter's track meet. Had to keep stopping. Little old people were passing me. Started taking elevator at work. Trouble coming up from parking lot at work. Trouble wearing masks for my job. When I got a respiratory infection I really got sick. Luckily I was seeing the pulmonary docs at this time.

Fev1 was 39% at first pulmonary function test. The doctor didn't really explain how bad it was or I and my husband just didn't get it. She said I had COPD. At some point I was put in the chronic bronchitis category. I changed doctors r/t a friend having a different doctor in the practice. He did many many tests. Lots of blood work, ct scans, stress tests (chemical}, echocardiograms, x rays. I also went to an allergist. No allergies. Went to ear nose and throat. I had a bronchoscopy. I was red, so he thought reflux might be an issue. Did Prilosec for awhile. Stopped because I didn't think that I needed it. Might I add that I had severe reflux and vomiting all three of my pregnancies with the last one being 2006-2007. We figured out a few things for example bronchodilators do not work, we now know because of the scarring. My 02 sats stay good even though I may be smothering. My lungs perfuse and the body gets the 02 it needs. ABGs were good. I take Spiriva, Dulera, and Singulair. Singulair has helped me. Not sure exactly why. It is used with a lot of asthma/allergy patients. My episodes that go with panic attacks are manageable now. I can't even explain how bad they were.

Dr. Campbell has referred me to Duke. I have been there two times now. They supported having the open lung biopsy which showed that I had constrictive bronchiolitis. Now I am going next month for a transplant evaluation. I know I am not ready yet. I also know that my FEV1 has dropped from 39% to as low as 27% over around a three year period. I am only 46 so I figure at some point it will be the option. The docs want to get me into the program to be monitored. Took 20 mg of Prednisone for 1-2 months. Doesn't seem to help my baseline but does if I have a resp infection. It did get me from the 120s to the 140s. The year that I became sick I lost fifty pounds. My normal weight is around 140. That is where I am now. I had gained up to 190 prior related to a med.