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Introduction
Hi; My Mother was diagnosed with PF in October at the age of 80. A shock to everyone in the family. She is extremely independent, living on her own, driving and all the good stuff in life. The addition of oxygen at 8 l/min while up and moving has certainly crimped her style. I am a registered nurse working full time and trying to manage Mom and her appointments, activities etc. I am learning a lot and still trying to muddle my way through this diagnosis. She was started on OFEV last week and we are hoping that she will stabilize. I look forward to connecting with others who are also navigating this world of PF and all that it brings with it.
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1 Reply
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Hi Michelle,
Thank you so much for taking the time to introduce yourself on this forum. I’m really glad you’re here!
I am sorry to hear of your Mother’s diagnosis, and understandably it was a shock to everyone in your family. Had any of you heard of IPF before she was diagnosed (likely with you being an RN…) ? Have her Doctors been able to give you an idea about the disease progression, whether it has been stable for awhile or slowly or rapidly progressing? I also hope OFEV helps your Mother and that the side effects aren’t too bad. Thankfully, of the anti-fibrotic medications, OFEV (in my experience anyway) has been the lesser of the medications with side effects.Please know that your family members are also welcome here, and we anticipate this forum to grow as more people become aware that it has been launched. In saying that, I hope more people who join here can share with you their experience of being a caregiver to a loved one with PF. Caregivers really are our heroes!
Take care and please feel free to connect anytime.
Sincerely,
Charlene
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