July 5, 2020 at 10:34 am #24842SitaParticipant
I am thankful for finding this site. I have already found many answers to my questions. My mom (71 years) was diagnosed in 2015 with PF. She had a the worst breathlessness back then and was put on 40 mg of prednisone for a month. She basically got so much better after that, we were given supplementary oxygen in 2016 to use when needed. 2017, my dad passed away due to sudden cardiac arrest and her health deteriorated immediately. She started using oxygen through night. She was put on 2 grams of cellcept, have been titrating prednisone on need by basis. 2019 august, she flew to India to stay with my sister for 6 months, I brought her back here in February right before COVID, ever since that trip, her health has worsened.
- Her oxygen went down to a 56 last week when she went to shower- I saw a post in this forum and decided to keep her hooked on to oxygen in the shower
- She does eat much and says she has no taste
- I have adjusted her oxygen to 4L/min. I am waiting for a call back from the pulmonologist.
- She is very tired.
My question is what do I expect from here? I am her primary caregiver. I work as a teacher and will probably return to classroom from september. What are my options? is it safe to leave her alone at home when I am at work? The unknown scares me. My doctor suggested Ofev, is it worth trying?
July 5, 2020 at 7:46 pm #24848Mark KoziolParticipant
Hello Sita, you are in a complicated situation. I don’t think anyone in the forum is qualified to give you a recommendation. I would hope the clinic your mom goes to has a social worker on staff. I think you, your mother, other carers, the social worker, nurse, and your moms doctor should be able to come to a consensus on what your next step should be. Ofev has helped many patients remain stable in their fight against pf and ipf. Like with any medicine there can be side effects and many of our forum members including myself would be able to share our experience with Ofev with you and your mom. I hope the best for your mom and I commend you for your caring for her. If you have any more questions, please feel free to ask. Take care, Mark.
- This reply was modified 11 months, 3 weeks ago by Mark Koziol.
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