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The quest for information on pulmonary fibrosis
When diagnosed with IPF, I began scouring the internet for information. Not surprisingly, there is a lot of inaccurate information on the internet (I hope that is not a surprise to you). What words or terms did you search the internet for to find information about your diagnosis? If it’s been more than a year since your diagnosis, what words or terms do you search for now? Tell me in the comments below.
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1 Reply
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Hi Samuel,<div>
First off, I recommend you ask your questions using an AI app, like ChatGPT, Gemini, etc. Some search terms might include:
O2 saturation
Supplemental oxygen
DLCO
Fatigue
I had luck by describing my situation, age, height, weight, gender, date of IPF diagnosis, symptoms, co-morbidities (important), etc. and then asking questions, like range of life expectancy, likely causes of death, time for hospice care, and so on. The detailed answers you receive will prompt you to ask many more questions. The main one for me was “what is it like to die from respiratory failure?” I have advanced CPFE and use 6-7 lpm of O2 24/7.
Best of luck!
Tom
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