Biography

My Mom was diagnosed with IPF March, 2023 but apparently according to CT scan, her lungs had a lot of scarring. She went to hospital for CHF and was diagnosed then. Went home w/o oxygen, but returned to hospital in July, and came home then on 2L oxygen. She got Covid after she was in hospital for 10 days in September for CHF. She got Covid while she was in this ER overlap unit which was a big tent, but that’s another story. A week after her 3 week stay that time, she ended up with a mediastinal pneumo and small RT pneumo too. Miraculously she did not require chest tube and came home, with a lot of subcutaneous emphysema in face and neck. She has also been diagnosed with Sjogren’s. She has been on/off steroids over past year, high to tapering doses and always feels better on high doses. I had read research about Cellcept, asked her rheumatologist and pulmonologist about it, and her pulmonologist has started her on it at low dose yo go to higher doses. Weekly lab work. I am hopeful it will help her, at least help her feel like she does when she is on steroids but less side effects. I am an RN, ICU for 30 years. Despite what I know, it was very hard for me to keep addressing Mom’s code status with each hospitalization. We had just learned about her disease a year ago and just coming to terms with it. Mom is 76 years old. She uses 4L at rest and 8-9 L with activity. She lives by herself in a senior apartment complex, cooks for herself and wants some independence. She lives in fear however that a thunderstorm is going to cause a power outage. She has backup tanks, a portable 02 machine that runs on battery and a small generator in her apt but she still has this fear.