Majorly bummed

Jeana · May 27, 2009

Well, I went to see an Allergist yesterday, and I left extremely down. Remember my FEV1 of 81% on April 30? It dropped 15% to 66%. I just don't get it. I am doing everything right and I still feel really good! How can this be?

I know the machine is slightly different and that they didn't have me blow out all my air before taking my huge breath at the beginning. I also ran out of Xopenex because my pharmacy was closed on Memorial Day, so I didn't do that neb treatment in the morning. But I doubt these things would account for that big of a drop.

Should I call my CF doc and tell him about the big drop even though I am not having increased coughing and am still feeling good?

Oh yeah, another question. How do they test for inflammation? That's a blood draw, right? He said my inflammation is low right now, but I think he was looking at my Ige levels from my last blood draw a month ago. The docs can all access that info from the hospital computer system and I know he had printed that off. If I had inflammation, would that cause a big drop?

I'm grasping at straws here. Maybe I'm inflamed from all the allergen stuff--I'm allergic to five grasses, two trees, pollens and mold. Maybe everything is just blooming right now and my lungs are irritated. He is having me get a new Ige level today. Could I just need a steroid to lower the inflammation? Or an antihistamine since I had to avoid them for 6 days.

I just want to be able to fight. Sorry if I sound whiny. <img src="i/expressions/face-icon-small-sad.gif" border="0">

Jeana · May 27, 2009

Well, I went to see an Allergist yesterday, and I left extremely down. Remember my FEV1 of 81% on April 30? It dropped 15% to 66%. I just don't get it. I am doing everything right and I still feel really good! How can this be?

I know the machine is slightly different and that they didn't have me blow out all my air before taking my huge breath at the beginning. I also ran out of Xopenex because my pharmacy was closed on Memorial Day, so I didn't do that neb treatment in the morning. But I doubt these things would account for that big of a drop.

Should I call my CF doc and tell him about the big drop even though I am not having increased coughing and am still feeling good?

Oh yeah, another question. How do they test for inflammation? That's a blood draw, right? He said my inflammation is low right now, but I think he was looking at my Ige levels from my last blood draw a month ago. The docs can all access that info from the hospital computer system and I know he had printed that off. If I had inflammation, would that cause a big drop?

I'm grasping at straws here. Maybe I'm inflamed from all the allergen stuff--I'm allergic to five grasses, two trees, pollens and mold. Maybe everything is just blooming right now and my lungs are irritated. He is having me get a new Ige level today. Could I just need a steroid to lower the inflammation? Or an antihistamine since I had to avoid them for 6 days.

I just want to be able to fight. Sorry if I sound whiny. <img src="i/expressions/face-icon-small-sad.gif" border="0">

Jeana · May 27, 2009

Well, I went to see an Allergist yesterday, and I left extremely down. Remember my FEV1 of 81% on April 30? It dropped 15% to 66%. I just don't get it. I am doing everything right and I still feel really good! How can this be?

I know the machine is slightly different and that they didn't have me blow out all my air before taking my huge breath at the beginning. I also ran out of Xopenex because my pharmacy was closed on Memorial Day, so I didn't do that neb treatment in the morning. But I doubt these things would account for that big of a drop.

Should I call my CF doc and tell him about the big drop even though I am not having increased coughing and am still feeling good?

Oh yeah, another question. How do they test for inflammation? That's a blood draw, right? He said my inflammation is low right now, but I think he was looking at my Ige levels from my last blood draw a month ago. The docs can all access that info from the hospital computer system and I know he had printed that off. If I had inflammation, would that cause a big drop?

I'm grasping at straws here. Maybe I'm inflamed from all the allergen stuff--I'm allergic to five grasses, two trees, pollens and mold. Maybe everything is just blooming right now and my lungs are irritated. He is having me get a new Ige level today. Could I just need a steroid to lower the inflammation? Or an antihistamine since I had to avoid them for 6 days.

I just want to be able to fight. Sorry if I sound whiny. <img src="i/expressions/face-icon-small-sad.gif" border="0">

Jeana · May 27, 2009

Well, I went to see an Allergist yesterday, and I left extremely down. Remember my FEV1 of 81% on April 30? It dropped 15% to 66%. I just don't get it. I am doing everything right and I still feel really good! How can this be?

I know the machine is slightly different and that they didn't have me blow out all my air before taking my huge breath at the beginning. I also ran out of Xopenex because my pharmacy was closed on Memorial Day, so I didn't do that neb treatment in the morning. But I doubt these things would account for that big of a drop.

Should I call my CF doc and tell him about the big drop even though I am not having increased coughing and am still feeling good?

Oh yeah, another question. How do they test for inflammation? That's a blood draw, right? He said my inflammation is low right now, but I think he was looking at my Ige levels from my last blood draw a month ago. The docs can all access that info from the hospital computer system and I know he had printed that off. If I had inflammation, would that cause a big drop?

I'm grasping at straws here. Maybe I'm inflamed from all the allergen stuff--I'm allergic to five grasses, two trees, pollens and mold. Maybe everything is just blooming right now and my lungs are irritated. He is having me get a new Ige level today. Could I just need a steroid to lower the inflammation? Or an antihistamine since I had to avoid them for 6 days.

I just want to be able to fight. Sorry if I sound whiny. <img src="i/expressions/face-icon-small-sad.gif" border="0">

Jeana · May 27, 2009

Well, I went to see an Allergist yesterday, and I left extremely down. Remember my FEV1 of 81% on April 30? It dropped 15% to 66%. I just don't get it. I am doing everything right and I still feel really good! How can this be?
 
 I know the machine is slightly different and that they didn't have me blow out all my air before taking my huge breath at the beginning. I also ran out of Xopenex because my pharmacy was closed on Memorial Day, so I didn't do that neb treatment in the morning. But I doubt these things would account for that big of a drop.
 
 Should I call my CF doc and tell him about the big drop even though I am not having increased coughing and am still feeling good?
 
 Oh yeah, another question. How do they test for inflammation? That's a blood draw, right? He said my inflammation is low right now, but I think he was looking at my Ige levels from my last blood draw a month ago. The docs can all access that info from the hospital computer system and I know he had printed that off. If I had inflammation, would that cause a big drop?
 
 I'm grasping at straws here. Maybe I'm inflamed from all the allergen stuff--I'm allergic to five grasses, two trees, pollens and mold. Maybe everything is just blooming right now and my lungs are irritated. He is having me get a new Ige level today. Could I just need a steroid to lower the inflammation? Or an antihistamine since I had to avoid them for 6 days.
 
 I just want to be able to fight. Sorry if I sound whiny. <img src="i/expressions/face-icon-small-sad.gif" border="0">

semperfiohana · May 27, 2009

i just wanted to say that when i do a pft i do it at my own pace. even the tech has said something to me, a few of them have actually. i apparently fill up slower than everyone and don't blow out as fast. they have all told me to go at my own pace. fill up as much as i can, doesn't matter how long it takes me and then blow out as long as i can. so if they are telling you to blow before you completely full don't blow. i didn't fill up completely for a while until i decided to do it my own way and it helped me some. i don't know about the immflamation though. hopefully i helped some maybe.

semperfiohana · May 27, 2009

i just wanted to say that when i do a pft i do it at my own pace. even the tech has said something to me, a few of them have actually. i apparently fill up slower than everyone and don't blow out as fast. they have all told me to go at my own pace. fill up as much as i can, doesn't matter how long it takes me and then blow out as long as i can. so if they are telling you to blow before you completely full don't blow. i didn't fill up completely for a while until i decided to do it my own way and it helped me some. i don't know about the immflamation though. hopefully i helped some maybe.

semperfiohana · May 27, 2009

i just wanted to say that when i do a pft i do it at my own pace. even the tech has said something to me, a few of them have actually. i apparently fill up slower than everyone and don't blow out as fast. they have all told me to go at my own pace. fill up as much as i can, doesn't matter how long it takes me and then blow out as long as i can. so if they are telling you to blow before you completely full don't blow. i didn't fill up completely for a while until i decided to do it my own way and it helped me some. i don't know about the immflamation though. hopefully i helped some maybe.

semperfiohana · May 27, 2009

i just wanted to say that when i do a pft i do it at my own pace. even the tech has said something to me, a few of them have actually. i apparently fill up slower than everyone and don't blow out as fast. they have all told me to go at my own pace. fill up as much as i can, doesn't matter how long it takes me and then blow out as long as i can. so if they are telling you to blow before you completely full don't blow. i didn't fill up completely for a while until i decided to do it my own way and it helped me some. i don't know about the immflamation though. hopefully i helped some maybe.

semperfiohana · May 27, 2009

i just wanted to say that when i do a pft i do it at my own pace. even the tech has said something to me, a few of them have actually. i apparently fill up slower than everyone and don't blow out as fast. they have all told me to go at my own pace. fill up as much as i can, doesn't matter how long it takes me and then blow out as long as i can. so if they are telling you to blow before you completely full don't blow. i didn't fill up completely for a while until i decided to do it my own way and it helped me some. i don't know about the immflamation though. hopefully i helped some maybe.

NYCLawGirl · May 28, 2009

hi jeana,

sorry you're having a rough time fev1 wise. in answer to your first question: yes i would DEFINITELY tell my CF doc if my numbers fell like that. s/he may not feel any action is needed based on symptoms or allergies or whatever, but you need to tell him/her in order to make that determination in the first place. even if you "just" need steroids, you'll have to get them from your CF doc, right?

secondly, i read your other post about the allergen testing and i remember your exercise post a while back, and it does totally sound like you're handling your CF really well right now. so yeah, not really any insight here, just wanted to say that sometimes these things do happen even when you're doing everything "right" and it's totally frustrating, but don't beat yourself up for it if possible. you should definitely be proud of the steps you're taking! and hopefully this is just a small bump in the road that can be smoothed over quickly so you can get back to enjoying the summer!

NYCLawGirl · May 28, 2009

hi jeana,

sorry you're having a rough time fev1 wise. in answer to your first question: yes i would DEFINITELY tell my CF doc if my numbers fell like that. s/he may not feel any action is needed based on symptoms or allergies or whatever, but you need to tell him/her in order to make that determination in the first place. even if you "just" need steroids, you'll have to get them from your CF doc, right?

secondly, i read your other post about the allergen testing and i remember your exercise post a while back, and it does totally sound like you're handling your CF really well right now. so yeah, not really any insight here, just wanted to say that sometimes these things do happen even when you're doing everything "right" and it's totally frustrating, but don't beat yourself up for it if possible. you should definitely be proud of the steps you're taking! and hopefully this is just a small bump in the road that can be smoothed over quickly so you can get back to enjoying the summer!

NYCLawGirl · May 28, 2009

hi jeana,

sorry you're having a rough time fev1 wise. in answer to your first question: yes i would DEFINITELY tell my CF doc if my numbers fell like that. s/he may not feel any action is needed based on symptoms or allergies or whatever, but you need to tell him/her in order to make that determination in the first place. even if you "just" need steroids, you'll have to get them from your CF doc, right?

secondly, i read your other post about the allergen testing and i remember your exercise post a while back, and it does totally sound like you're handling your CF really well right now. so yeah, not really any insight here, just wanted to say that sometimes these things do happen even when you're doing everything "right" and it's totally frustrating, but don't beat yourself up for it if possible. you should definitely be proud of the steps you're taking! and hopefully this is just a small bump in the road that can be smoothed over quickly so you can get back to enjoying the summer!

NYCLawGirl · May 28, 2009

hi jeana,

sorry you're having a rough time fev1 wise. in answer to your first question: yes i would DEFINITELY tell my CF doc if my numbers fell like that. s/he may not feel any action is needed based on symptoms or allergies or whatever, but you need to tell him/her in order to make that determination in the first place. even if you "just" need steroids, you'll have to get them from your CF doc, right?

secondly, i read your other post about the allergen testing and i remember your exercise post a while back, and it does totally sound like you're handling your CF really well right now. so yeah, not really any insight here, just wanted to say that sometimes these things do happen even when you're doing everything "right" and it's totally frustrating, but don't beat yourself up for it if possible. you should definitely be proud of the steps you're taking! and hopefully this is just a small bump in the road that can be smoothed over quickly so you can get back to enjoying the summer!

NYCLawGirl · May 28, 2009

hi jeana,
 
 sorry you're having a rough time fev1 wise. in answer to your first question: yes i would DEFINITELY tell my CF doc if my numbers fell like that. s/he may not feel any action is needed based on symptoms or allergies or whatever, but you need to tell him/her in order to make that determination in the first place. even if you "just" need steroids, you'll have to get them from your CF doc, right?
 
 secondly, i read your other post about the allergen testing and i remember your exercise post a while back, and it does totally sound like you're handling your CF really well right now. so yeah, not really any insight here, just wanted to say that sometimes these things do happen even when you're doing everything "right" and it's totally frustrating, but don't beat yourself up for it if possible. you should definitely be proud of the steps you're taking! and hopefully this is just a small bump in the road that can be smoothed over quickly so you can get back to enjoying the summer!

Jeana · May 28, 2009