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Bruce F. replied to the topic Travel and Telling siblings and children after diagnosis of f-IPF in the forum Diagnosis Information and General Questions 1 week ago
Hi Lynne,
I am very sorry to hear about your diagnosis.
I have asked my pulmonologist about genetic testing, and there is a test that will identify the genetic markers associated with IPF. The lab that performs the test is in Canada, and we agreed to return to this topic if my young adult children want to know if they have the genetic…[Read more]
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Bruce F. replied to the topic Depression in the forum Using Our Forums 1 month ago
Hi Stella—I am not a physician or a psychologist, but if I can share an insight or two:
– if you are already suffering from or prone to depression, I can only imagine what the diagnosis of IPF or other illness which requires treatment with OFEV would exacerbate the depression. Everyone lives with the abstract prospect of death, but the IPF di…[Read more]
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Bruce F. replied to the topic travel while on ofev in the forum Ofev (Nintedanib) 2 months, 2 weeks ago
Thank you, Renee! My doctor has also indicated that missing OFEV for me in order to travel or for special occasions is not something I should worry about. I have no underlying conditions, and I am young-ish at 59, and there is a lot I want to do and need to do that are not compatible with my usual 2x 150 mg. of OFEV each day.
I am a…[Read more]
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Bruce F. replied to the topic Diagnosed with IPF – What can we expect? in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 months, 2 weeks ago
Thank you for those kind words, Christie. I posted again today for the first time in a while, and it is nice to know that you found it helpful. We are all learning from each other, which helps me feel better.
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Bruce F. replied to the topic Questions about Ofev in the forum Using Our Forums 2 months, 2 weeks ago
Hi Maria—
Sorry to hear about your diagnosis, but glad to see you reaching out.
Edible cannabis has helped me with the constant nausea and loss of appetite.
I have been on OFEV 150 mg twice daily for 10 months after being diagnosed with IPF. I am otherwise healthy and in my late fifties.
My experience with OFEV rhymes with much I’ve seen…[Read more]
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Bruce F. replied to the topic Diagnosed with IPF – What can we expect? in the forum Join the Discussion: Welcome to all PF/IPF Patients 6 months, 3 weeks ago
- Mike,
I would encourage you to speak with your pulmonologist, your internist, their nursing staff, and perhaps with a hospice team if you want to learn more about the very end stages of the disease.
I had the experience of watching my father and my grandmother die of IPF, and now I have been diagnosed as well. I am not a medical p…[Read more]
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Bruce F. replied to the topic Diagnosed with IPF – What can we expect? in the forum Join the Discussion: Welcome to all PF/IPF Patients 6 months, 3 weeks ago
Mike,
I would encourage you to speak with your pulmonologist, your internist, their nursing staff, and perhaps with a hospice team if you want to learn more about the very end stages of the disease.
I had the experience of watching my father and my grandmother die of IPF, and now I have been diagnosed as well. I am not a medical person nor a p…[Read more]
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Bruce F. replied to the topic Split Ofev doseages in the forum Ofev (Nintedanib) 7 months ago
Thank you! That is very helpful. I struggle with the morning dose and may ask about moving to a 100/150 routine each day. Good luck to one and all as we navigate our way through the days!
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Bruce F. replied to the topic Appetite in the forum Join the Discussion: Welcome to all PF/IPF Patients 8 months, 1 week ago
Hi everyone—I am new to the illness, the medicine, and to this group. I am working hard to manage appropriate food intake while on OFEV.
I hope there is an active discussion board about nutrition here; I will look and report back to this thread!
Best wishes to all of you!
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Bruce F. replied to the topic Ernie Kully ♥️ in the forum In Loving Memory 8 months, 1 week ago
Sorry to hear of your loss.
When the time feels right, I hope you will share something if Ernie Kully’s life with the board.
Be well,
JB Fort
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Bruce F. replied to the topic Is ipf genetic? in the forum Join the Discussion: Welcome to all PF/IPF Patients 10 months, 1 week ago
Here is an article on familial IPF that covers some of the questions raised on this thread.
I was diagnosed with IPF this spring. As the son and grandson of IPF patients, and as the father of young adult children who May of may not have a genetic predisposition to develop IPF at some point, I have asked my pulmonologist about genetic t…[Read more]
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Bruce F. became a registered member 10 months, 2 weeks ago
Welcome to the PF forums Bruce, we’re glad you found us.