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  • My mother was diagnosed with IPF by Dr. Javadpoor and Dr. Castro after she was initially hospitalized in mid Dec. 2017. She was released from the hospital and sent home with in home oxygen. She saw Dr. Javadpoor a month later and he had her wean off the steroids (drop 10 mg every 3 days). She got very sick and we saw him 9 days later. He had her wean down 10 mg after 5 days rather than dropping every 3 days. When we asked about the side effects of lowering the dose being greater than the side effects of the higher dose, we were discounted and told that she could not stay on the higher dose and "not to worry". He even took away her ox-pulsometer and told her not to dwell on the SPO2 (it was dropping into the 70s whenever she did any activities.) About a week later, I had to take her to the ER and this time, I took her to University Medical Center, which is affiliated with the Lung Institute. While she did have severe fibrosis, the diagnosis they gave was organizing pneumonia. By this point, there was so much damage, the only option was a transplant. She was evaluated for a transplant but significant blockage was found in one of her heart arteries and transplant was no longer an option. Had she had more time, they could have performed the routine procedure on her heart and after a 2-3 month recovery period, I believe she may have been eligible for the lung transplant. Other than child birth, she had never been in the hospital. She didn't drink or smoke and was otherwise very active and healthy before this. We were told that weaning her off steroids at a slower rate may have avoided the fast decline from Dec. to Feb. She passed away on Feb. 6th. I called East Valley Center for Pulm. & Sleep Disorders to let them know the outcome, thinking they would want to know but they said if the dr wanted to know, he could look at her records.
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