My husband 78 has ipf first found out in 2022 when he for the next ct scan In 3:56 2023. Dr said much improved 😮 but I’m he didn’t feel like it. So we get another test and see Dr 2/9/24 anxcious to see if they still Say better cause he’s very sick man. 🤷♀️ also Dr said we in for a major roller coaster ride with this disease. If they say he’s improved again and we are seeing decline. I feel he must be misdiagnosed. First scan 3 other drs looked at it and basicly agreeded with diagnosis. He could not take ofev or the other one. It was hitting his kidney and liver. Hugs to all fighting this disease. And doctor thanks for great info
Can you talk specifically about the different values in a PFT? I’ve read that a decline in DLCO % is an indicator that an imminent decline in your condition is about to occur. Do you have any thoughts on this?
I have emphysema, not PF, but there are tons of different reasons that inflammation can be better or worse which change daily. I have days where I can walk for a mile at 2.5 mph and other days where I struggle to walk a quarter mile at 2 mph. Weather, diet, stress, etc. I will only schedule pulmonologist visits if I notice a worsening trend for awhile. Plus just going there gives me stress, and there is usually no punchline for the result except to recommend a new inhaler of the month.
Thank you for every insight that you share. They are very helpful!
My husband 78 has ipf first found out in 2022 when he for the next ct scan In 3:56 2023. Dr said much improved 😮 but I’m he didn’t feel like it. So we get another test and see Dr 2/9/24 anxcious to see if they still
Say better cause he’s very sick man. 🤷♀️ also Dr said we in for a major roller coaster ride with this disease. If they say he’s improved again and we are seeing decline. I feel he must be misdiagnosed. First scan 3 other drs looked at it and basicly agreeded with diagnosis. He could not take ofev or the other one. It was hitting his kidney and liver. Hugs to all fighting this disease. And doctor thanks for great info
Can you talk specifically about the different values in a PFT? I’ve read that a decline in DLCO % is an indicator that an imminent decline in your condition is about to occur. Do you have any thoughts on this?
Thanks
I have emphysema, not PF, but there are tons of different reasons that inflammation can be better or worse which change daily.
I have days where I can walk for a mile at 2.5 mph and other days where I struggle to walk a quarter mile at 2 mph. Weather, diet, stress, etc.
I will only schedule pulmonologist visits if I notice a worsening trend for awhile. Plus just going there gives me stress, and there is usually no punchline for the result except to recommend a new inhaler of the month.
Plus it usually just ends up depressing me until I have my next good day.