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3 comments :

  1. Thank you very much for sharing such a good information. In Spain we are still lost. Thanks again.

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  2. I have some observations that may interest others. We found your blog useful. My wife died of IPF 28 months after diagnosis and 32- 33 months after onset with gradual difficulty swimming laps. The diagnosis frightened us and made my wife seriously depressed. Our pulmonologists were kind and helpful but saying, ‘the course is so variable’ left us somewhat frustrated. We saw three outside experts, the last 2 seeking Pirfenidone. The first, a courtly gentleman, was the most honest when asked what to expect. He said, “I can’t predict your course. That saying hope for the best and prepare for the worst is insulting, BUT: the disease may start slow and accelerate rapidly. I’m not expecting Pirfenidone to be a game changer (this was Jan 2014) and while there is a possibility of transplant if it becomes clear that you are on a bad track, your age will weigh heavily against you. This might be a good time to take any important trips”. We know some people living 7 years after diagnosis without a transplant, slowly getting worse.

    My only criticism is that neither our support groups nor our pulmonologists made us comfortable with the prospect of being rejected for transplant, which Kay was. What is done for those who don’t get a transplant? Some are obviously not eligible. Kay took Pirfenidone for 13 months and Nintedanib for 1 ¾ months at the very end. She went rapidly downhill on these medicines and they caused many GI side effects. I didn’t get much help there, I wanted to keep her on the drugs, tried various teas, Pepto-Bismol, etc. The teas seemed to be some help, Pepto-Bismol, antacids, etc. no help. Our primary physician was out of the loop, not helpful. . I kept insisting that she stay on the med. Maybe I pushed too hard. As her oxygen needs increased runny nose and nasal blockage became problems, generally controlled with help from the pulmonologists

    In the final phase she had many terrible episodes at night with severe shortness of breath. A hospital bed to keep her upright might have helped because her breathing was much better sitting upright during the day. When we went into hospice and they sent a hospital bed it was too late. IPF is a nasty disease and being short of breath is very hard. No doubt there will be more drugs but it’s very hard to get pulmonologists and primary MDs working together in our healthcare system.

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    1. Thank you for sharing these details about your wife's illness. I am sorry to hear she suffered in her last days. I hope that others find value in your wife's story.

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