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Mike replied to the topic Disability Pride Month Can be Hard to Celebrate in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 months ago
My 2 cents: Like many words in our new woke world, many are not used correctly. Pride is one of them. Pride has been adopted by the gay, and now the LGBMQ communities. This is, in my opinion, a correct usage of the term, as for most of recorded history, these groups were treated inhumanly. By expressing their pride, it showed a sense of soli…[Read more]
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Mike replied to the topic Appetite in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 months ago
I too have been unable to take Ofev. It made me feel crummy and not just the diarrhea. It gave me an unwell feeling all over, so I gave it up after realizing that it does slow the progression of the fibrosis, but one’s life is not appreciably lengthened. I thought that quality of life is more important than length of days. I don’t rec…[Read more]
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Mike replied to the topic My life has turned upside down in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 months ago
Dear Rumana, Don’t be apologetic about your long post. I read it all, and I could really feel your concern and love for your Mom. I wish for you that she will remain comfortable. I’m the same age, 74, and my PF came crashing into my life in April of this year. I guess that I have a fast growing fibrosis as my condition is worsening quite rap…[Read more]
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Mike replied to the topic End of Life in the forum Diagnosis Information and General Questions 2 months ago
My 2 Cents: Regarding the end days, I have thought and talked a lot about what happens. I have been referred for hospice, and that care should start soon. As many of us are concerned about the fish out of water scenario, the answers that I received is that when the time comes when our lungs finally crash, one is usually given drugs like m…[Read more]
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Mike replied to the topic End of Life in the forum Diagnosis Information and General Questions 2 months ago
My 2 Cents: Regarding the end days, I have thought and talked a lot about what happens. I have been referred for hospice, and that care should start soon. As many of us are concerned about the fish out of water scenario, the answers that I received is that when the time comes when our lungs finally crash, one is usually given drugs like m…[Read more]
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Mike replied to the topic Life span in the forum Diagnosis Information and General Questions 2 months ago
Hey Randy, I read this thread thoroughly and until I saw your post, I thought that I was alone. Around one year ago, I was treated for colon cancer. The surgeon did a great job, but the radiologist who read my CT scan, while looking for traces of cancer, saw my IPF. That diagnosis didn’t concern me. I was thrilled that I beat the cancer, and…[Read more]
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Mike replied to the topic Why do IPF patients lose weight and how to help in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 months, 3 weeks ago
I found new culinary freedom with my IPF onset. I have a fast developing lung scarring and I don’t like it, but I accept it.
So I’ve learned to cook recently, and here’s my response to my diagnosis: calzones, pizza, chocolate chip cookies, banana bread with vanilla frosting, various cakes and muffins, chili con carne, and a large bowl of ice…[Read more]
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Mike 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, 3 weeks ago
I’ve joined the forum and have scanned a bit of the info here, and I don’t seem to be able to find anyone with similar symptoms and/or disease progression as myself. I was told by a doctor a few years ago that I had IPF. As the Xray that discovered the IPF was taken because I had colon cancer, the IPF was put on the back burner. I beat the ca…[Read more]
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Mike replied to the topic Split Ofev doseages in the forum Ofev (Nintedanib) 3 months, 1 week ago
I’ve felt rotten from Ofev also. Imodium stops the runs, but the medicine just made me feel sick. I did a lot of reading on the studies done on Ofev and it’s effectiveness. I read some trial studies that Ofev does slow the progression of IPF, but does not extend survival times. I asked my Dr., and he said that he also saw the study, and doe…[Read more]
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Mike became a registered member 4 months, 3 weeks ago
A belated welcome to the PF forums Mike, we’re glad you found us.