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What is the normal loss of FEV 1 per year?
- Thread starter Asexyblond23
- Start date
I agree that I don't think there is a "normal". I have been at the same FEV1 level since I started doing PFTs at this clinic in about 1996. It is frustrating to do so much and not have them go up, but I guess I should be thankful that they're not going down. I'm not sure what would be typical, but it probably depends on what you culture and if it can be kept under control.
I think it's great that you're taking the initiative to figure out the problem and do something about it. Best of luck and let us know if you find out anything about this topic from your doctor!
I think it's great that you're taking the initiative to figure out the problem and do something about it. Best of luck and let us know if you find out anything about this topic from your doctor!
I agree that I don't think there is a "normal". I have been at the same FEV1 level since I started doing PFTs at this clinic in about 1996. It is frustrating to do so much and not have them go up, but I guess I should be thankful that they're not going down. I'm not sure what would be typical, but it probably depends on what you culture and if it can be kept under control.
I think it's great that you're taking the initiative to figure out the problem and do something about it. Best of luck and let us know if you find out anything about this topic from your doctor!
I think it's great that you're taking the initiative to figure out the problem and do something about it. Best of luck and let us know if you find out anything about this topic from your doctor!
I agree that I don't think there is a "normal". I have been at the same FEV1 level since I started doing PFTs at this clinic in about 1996. It is frustrating to do so much and not have them go up, but I guess I should be thankful that they're not going down. I'm not sure what would be typical, but it probably depends on what you culture and if it can be kept under control.
I think it's great that you're taking the initiative to figure out the problem and do something about it. Best of luck and let us know if you find out anything about this topic from your doctor!
I think it's great that you're taking the initiative to figure out the problem and do something about it. Best of luck and let us know if you find out anything about this topic from your doctor!
wanderlost
New member
My PFTs have been in the 70s for a loooong time, and that is without IVs or many abx. i think if I was willing to go on IVs they would be much higher, but right now I don't want to do that. So, by doing next to nothing (I just got a Vest in December, and HS - before I used purely inhalers and exercise) I have maintained for years - which just goes to show you can never tell with this disease. Some people do every treatment they can with religious vigor and still lose PFT %s regularly. I do think that Cf is starting to catch up with me though, which is why I have gotten a Vest and started doing treatments everyday.
wanderlost
New member
My PFTs have been in the 70s for a loooong time, and that is without IVs or many abx. i think if I was willing to go on IVs they would be much higher, but right now I don't want to do that. So, by doing next to nothing (I just got a Vest in December, and HS - before I used purely inhalers and exercise) I have maintained for years - which just goes to show you can never tell with this disease. Some people do every treatment they can with religious vigor and still lose PFT %s regularly. I do think that Cf is starting to catch up with me though, which is why I have gotten a Vest and started doing treatments everyday.
wanderlost
New member
My PFTs have been in the 70s for a loooong time, and that is without IVs or many abx. i think if I was willing to go on IVs they would be much higher, but right now I don't want to do that. So, by doing next to nothing (I just got a Vest in December, and HS - before I used purely inhalers and exercise) I have maintained for years - which just goes to show you can never tell with this disease. Some people do every treatment they can with religious vigor and still lose PFT %s regularly. I do think that Cf is starting to catch up with me though, which is why I have gotten a Vest and started doing treatments everyday.
Emily65Roses
New member
This is a really good question, I can't believe I don't remember seeing it before.
As for me, I'm like Debbie more than anything. I have years where I lose 5-10% and then others where I stay pretty much stable. Like until I was 16, I was constantly at 90-100%. Then I got MRSA and went down to 44%. I went on IVs, got bounced back up to about 80%. Since then I had a year where I lost another 10% or so, but I've stayed pretty steadily at 70% now for like... 2-3 years.
As for me, I'm like Debbie more than anything. I have years where I lose 5-10% and then others where I stay pretty much stable. Like until I was 16, I was constantly at 90-100%. Then I got MRSA and went down to 44%. I went on IVs, got bounced back up to about 80%. Since then I had a year where I lost another 10% or so, but I've stayed pretty steadily at 70% now for like... 2-3 years.
Emily65Roses
New member
This is a really good question, I can't believe I don't remember seeing it before.
As for me, I'm like Debbie more than anything. I have years where I lose 5-10% and then others where I stay pretty much stable. Like until I was 16, I was constantly at 90-100%. Then I got MRSA and went down to 44%. I went on IVs, got bounced back up to about 80%. Since then I had a year where I lost another 10% or so, but I've stayed pretty steadily at 70% now for like... 2-3 years.
As for me, I'm like Debbie more than anything. I have years where I lose 5-10% and then others where I stay pretty much stable. Like until I was 16, I was constantly at 90-100%. Then I got MRSA and went down to 44%. I went on IVs, got bounced back up to about 80%. Since then I had a year where I lost another 10% or so, but I've stayed pretty steadily at 70% now for like... 2-3 years.
Emily65Roses
New member
This is a really good question, I can't believe I don't remember seeing it before.
As for me, I'm like Debbie more than anything. I have years where I lose 5-10% and then others where I stay pretty much stable. Like until I was 16, I was constantly at 90-100%. Then I got MRSA and went down to 44%. I went on IVs, got bounced back up to about 80%. Since then I had a year where I lost another 10% or so, but I've stayed pretty steadily at 70% now for like... 2-3 years.
As for me, I'm like Debbie more than anything. I have years where I lose 5-10% and then others where I stay pretty much stable. Like until I was 16, I was constantly at 90-100%. Then I got MRSA and went down to 44%. I went on IVs, got bounced back up to about 80%. Since then I had a year where I lost another 10% or so, but I've stayed pretty steadily at 70% now for like... 2-3 years.
The year Mike was listed (2 years ago), he lost 10% (35ish to 25ish.) This past year he lost about 5%. this is all while on aggressive therpaies and doing everything he should. All the therapies of course kept him from dropping further! But sometimes it just drops and makes you crazy!
The year Mike was listed (2 years ago), he lost 10% (35ish to 25ish.) This past year he lost about 5%. this is all while on aggressive therpaies and doing everything he should. All the therapies of course kept him from dropping further! But sometimes it just drops and makes you crazy!
The year Mike was listed (2 years ago), he lost 10% (35ish to 25ish.) This past year he lost about 5%. this is all while on aggressive therpaies and doing everything he should. All the therapies of course kept him from dropping further! But sometimes it just drops and makes you crazy!
I was told by my doctor just last month that your points can vary up to +/- 10 on any given day, and not to worry about mine. I was 92 and dropped to 84 or something like that, and they just said "No worries" I dunno. I am a "healthier case" and "atypical" as they call me, but still. They said everyone varies from day to day/week to week and it can be affected simply by how much sleep you got, allergens in the air and such that can affect it without it being a hiding infection or something like that. Here's hoping it's just that for you. Be well.
Ceci
Ceci
I was told by my doctor just last month that your points can vary up to +/- 10 on any given day, and not to worry about mine. I was 92 and dropped to 84 or something like that, and they just said "No worries" I dunno. I am a "healthier case" and "atypical" as they call me, but still. They said everyone varies from day to day/week to week and it can be affected simply by how much sleep you got, allergens in the air and such that can affect it without it being a hiding infection or something like that. Here's hoping it's just that for you. Be well.
Ceci
Ceci
I was told by my doctor just last month that your points can vary up to +/- 10 on any given day, and not to worry about mine. I was 92 and dropped to 84 or something like that, and they just said "No worries" I dunno. I am a "healthier case" and "atypical" as they call me, but still. They said everyone varies from day to day/week to week and it can be affected simply by how much sleep you got, allergens in the air and such that can affect it without it being a hiding infection or something like that. Here's hoping it's just that for you. Be well.
Ceci
Ceci
A
alegris
Guest
I've been at 56% (EXACTLY) since 2003. That's 4 years without moving a single frigging percent! I find it extremely annoying. I keep trying to do things to increase it and I feel better than I used to in school, but I'm still at the same number. I guess it's better than decreasing, but I would be happy if it moved up even 1 percent. I was also told that it can increase / decrease day by day (the number I was given was +/- 4%), but I've even had it done 2 days in a row and it's still always 56%. I'm cursed!
Adrienne - 24/f/CF
Adrienne - 24/f/CF