My name is Tiffany Roaten, I am 42 and live in Arlington Tx. I was first diagnosed with the flu after feeling sick while cooking Thanksgiving dinner this past November 2017. I was OK when I was sitting, but when I was on my feet it felt as if I was drowning. I was told the 2017 strain of flu was a mean one, so right before Christmas I went to the doctors again, and they took some x-rays and found I had pneumonia, and was put on another dose of antibiotics. Right before NYE I went to the ER because I felt like I could not get a breath. It was confirmed as pneumonia again, and put on my 3rd dose of antibiotics. I read online that pneumonia can take some time to clear, so I tried to break my day down so that I could do normal things like laundry. I went back to the doctor a couple weeks later and was put on my 4th dose of antibiotics. Two weeks later I tried to cut an orange and was unable to. My husband called my primary care, who told me to go get some x-rays and then come to his office. I told him, I could do one or the other, but didn't have the strength to do both. He checked me into the hospital and was there for almost 3 weeks, on IV antibiotics. My oxygen levels stayed at 90 while in my hospital bed, and started getting strange looks from all the hospital staff. I told them several times I was OK sitting but when I walked that's when my O2 levels dropped. So about the 2nd week in ICU they started doing O2 tests without oxygen while walking hospital halls, in less then 60 seconds my O2 dropped to 79, and was rushed back to my hospital bed. Two days later I had a lung biopsy, they took 4 parts of my lung for tests. I was diagnosed with PAP in March 2018. I was referred to Dr. Muhanned Abu-Hijleh at UT Southwestern and had my first whole lung lavage in June, and the 2nd in July. Dr. Abu-Hijleh has had 8 PAP patients in his career, and does at least one to two lung lavage a year. He is an angel in disguise... I can go without oxygen for 4 hours sitting before my 02 drops below 85. I test 6 minute walks daily without oxygen, and drop to 87-88 after the 6 minutes are up. It takes about 20 minutes on oxygen to get my O2 back up in the 90s. I have been on Leukine 250 ml subcutaneous injections daily for the past 30 days, and have not seen any difference, but I am hopeful! I was wondering if anyone had a sharp stabbing pains around the lung area? I don't know how to explain it, but its behind my right shoulder blade, at the tongue of my right lung. I try to swallow yawns, sneezing and coughing can lead to tears, which I also try to hold back. I think I would be able to cope if it were not for this stabbing pain. I had the pain before the lung biopsy. My 3rd and 4th ribs were broken 8 months before I was diagnosed with PAP, from being adjusted at a chiropractor. But I did not feel this stabbing feeling until December when I went to the ER. You are all my heroes, doctors and patients alike. This is my story.
Medications I take for PAP:
Albuterol - Pill
Ipratropium Bromide Albuterol Sulfate
GM CSF Leukine injections
Oxygen 4 liters