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Betty Buenning replied to the topic Newly diagnosed UIP OFEV advice in the forum Diagnosis Information and General Questions 1 year ago
Everyone’s bodies are different. My husband was diagnosed in Fall of 2016. The fact that the meds could stave off decline made it important enough for him to start the meds. He was never sick in a 41 year career as a high school teacher. Those meds had the direct effect of keeping him steady for 5 years. All he had was a chronic cough. We got a…[Read more]
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Betty Buenning replied to the topic What should I expect as IPF progresses? in the forum Caregivers and Spouses 1 year, 4 months ago
I posted this in the end of life page, but it seems like that is what you are asking about.
Having just gone through this with my husband, Steve, diagnosed in 2016. We were going through the testing for a lung transplant and due to COVID he had not been seen in person from October 2020 to April 2021. He went from needing 1-3 liters of…[Read more]
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Betty Buenning replied to the topic End of Life in the forum Diagnosis Information and General Questions 1 year, 5 months ago
Once Steve was intubated, he was not frantic or in pain until we had to extubate him. They kept him comfortable and we could see his breathing and pulse increase when we talked to him, so I think he might have heard some of what we told him. Once his heart and kidneys began to fail, we needed to let him go. He was not aware of that. The doctor…[Read more]
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Betty Buenning replied to the topic End of Life in the forum Diagnosis Information and General Questions 1 year, 6 months ago
Having just gone through this with my husband, Steve, diagnosed in 2016. We were going through the testing for a lung transplant and due to COVID he had not been seen in person from October 2020 to April 2021. He went from needing 1-3 liters of supplemental oxygen to 4-6 liters. Then suddenly he needed 8-10 liters.
We were given all kinds of…[Read more]
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Betty Buenning became a registered member 1 year, 6 months ago
Thanks for joining the PF forums Betty, welcome!