Drop in PFT's Does this sound werid?

[Asexyblond23]

So I am wondering when people have a drop in their Pft's how much is too much? I know that everyone is different. July last year I was at 87%. I started HS and went up to 92% in Aug. Sept I started having problems and they havent gone away since. I was on cipro & augmentin for oct-jan and even a 2 week dose of of one iv. After the iv in nov they were back up at 86%, so I was happy. Well I still felt congested and not normal. So we contiuned oral antibodics till about feb. I went in to clinic in March and I was at 82%. The lowest that I have been since I was at 79% back in june of 05. I was not happy at all. They wouldnt put me on anything and told me to be happy that I was at 82% most CF people would dream of 82%. But for me thats not good compared to my normal. They told me that this is a pregressive diease and that numbers will decline, like DUH i dont know that. I have been around 85% for the past 10 years and now over 6 months I keep dropping. Something isnt right. So last week I got them to put mt on prednisone thinking it was asthma, nope not at all. I still feel tight and cant brethe in deep. Today I called asking to be on ivs and they said no. But did schedule me for a PFT monday morning. So when you have a drop how much is too much? I am totally being agressive with them and feel like I am just getting blown off. I dont want this to stay perment at 82% but I feel like *****, I honestly feel like I am at freaking 60% right now.

Alisha

 

[Asexyblond23]

So I am wondering when people have a drop in their Pft's how much is too much? I know that everyone is different. July last year I was at 87%. I started HS and went up to 92% in Aug. Sept I started having problems and they havent gone away since. I was on cipro & augmentin for oct-jan and even a 2 week dose of of one iv. After the iv in nov they were back up at 86%, so I was happy. Well I still felt congested and not normal. So we contiuned oral antibodics till about feb. I went in to clinic in March and I was at 82%. The lowest that I have been since I was at 79% back in june of 05. I was not happy at all. They wouldnt put me on anything and told me to be happy that I was at 82% most CF people would dream of 82%. But for me thats not good compared to my normal. They told me that this is a pregressive diease and that numbers will decline, like DUH i dont know that. I have been around 85% for the past 10 years and now over 6 months I keep dropping. Something isnt right. So last week I got them to put mt on prednisone thinking it was asthma, nope not at all. I still feel tight and cant brethe in deep. Today I called asking to be on ivs and they said no. But did schedule me for a PFT monday morning. So when you have a drop how much is too much? I am totally being agressive with them and feel like I am just getting blown off. I dont want this to stay perment at 82% but I feel like *****, I honestly feel like I am at freaking 60% right now.

Alisha

 

[Asexyblond23]

So I am wondering when people have a drop in their Pft's how much is too much? I know that everyone is different. July last year I was at 87%. I started HS and went up to 92% in Aug. Sept I started having problems and they havent gone away since. I was on cipro & augmentin for oct-jan and even a 2 week dose of of one iv. After the iv in nov they were back up at 86%, so I was happy. Well I still felt congested and not normal. So we contiuned oral antibodics till about feb. I went in to clinic in March and I was at 82%. The lowest that I have been since I was at 79% back in june of 05. I was not happy at all. They wouldnt put me on anything and told me to be happy that I was at 82% most CF people would dream of 82%. But for me thats not good compared to my normal. They told me that this is a pregressive diease and that numbers will decline, like DUH i dont know that. I have been around 85% for the past 10 years and now over 6 months I keep dropping. Something isnt right. So last week I got them to put mt on prednisone thinking it was asthma, nope not at all. I still feel tight and cant brethe in deep. Today I called asking to be on ivs and they said no. But did schedule me for a PFT monday morning. So when you have a drop how much is too much? I am totally being agressive with them and feel like I am just getting blown off. I dont want this to stay perment at 82% but I feel like *****, I honestly feel like I am at freaking 60% right now.

Alisha

 

[NoExcuses]

For me, anything more than a 1-2% drop is not OK and will require some examination.

Sometimes, a drop of 5% is allergies and inflammation for me. Sometimes it's infection. But I can always tell the diff.

Either way, action will be taken for a drop more than 1-2% in FEV1.

I am worried with your doc telling you to just be happy with FEV1's in the 80s. You should be asking him what you could be doing to get it up to 100%. This is the Warwick way of thinking that I picked up when I wen tto visit him.

I thnk your instinct is dead on and you should challenge your doc on his philosophy.

 

[NoExcuses]

For me, anything more than a 1-2% drop is not OK and will require some examination.

Sometimes, a drop of 5% is allergies and inflammation for me. Sometimes it's infection. But I can always tell the diff.

Either way, action will be taken for a drop more than 1-2% in FEV1.

I am worried with your doc telling you to just be happy with FEV1's in the 80s. You should be asking him what you could be doing to get it up to 100%. This is the Warwick way of thinking that I picked up when I wen tto visit him.

I thnk your instinct is dead on and you should challenge your doc on his philosophy.

 

[NoExcuses]

For me, anything more than a 1-2% drop is not OK and will require some examination.

Sometimes, a drop of 5% is allergies and inflammation for me. Sometimes it's infection. But I can always tell the diff.

Either way, action will be taken for a drop more than 1-2% in FEV1.

I am worried with your doc telling you to just be happy with FEV1's in the 80s. You should be asking him what you could be doing to get it up to 100%. This is the Warwick way of thinking that I picked up when I wen tto visit him.

I thnk your instinct is dead on and you should challenge your doc on his philosophy.

 

[blindhearted]

I'm not sure what is too much of a drop in the aspects of FEV1s. I'm sure it varies from person to person. I will say that you know your body and if you feel something is wrong then there probably is. Maybe you should push for a culture, just to rule out if you are growing anything or not. Maybe you have something and the antibiotics they were giving you was keeping it "at bay" and not treating it. I have had that happen. You start feeling just a little better and as soon as the meds are done, back down the slide you go. It might not hurt to get a chest xray, compare to your last one, see if there has been additional damage done. Also I dont like ur doctor saying "be happy with xx FEV1...". I dont think that is a good way for a doctor to look at it. A doctor shouldnt suggest that you settle for FEVs, they should try all avenues to get it back up to where you were, and all of those must completely fail before saying "be happy with...". I hope you get feeling better.

 

[blindhearted]

I'm not sure what is too much of a drop in the aspects of FEV1s. I'm sure it varies from person to person. I will say that you know your body and if you feel something is wrong then there probably is. Maybe you should push for a culture, just to rule out if you are growing anything or not. Maybe you have something and the antibiotics they were giving you was keeping it "at bay" and not treating it. I have had that happen. You start feeling just a little better and as soon as the meds are done, back down the slide you go. It might not hurt to get a chest xray, compare to your last one, see if there has been additional damage done. Also I dont like ur doctor saying "be happy with xx FEV1...". I dont think that is a good way for a doctor to look at it. A doctor shouldnt suggest that you settle for FEVs, they should try all avenues to get it back up to where you were, and all of those must completely fail before saying "be happy with...". I hope you get feeling better.

 

[blindhearted]

I'm not sure what is too much of a drop in the aspects of FEV1s. I'm sure it varies from person to person. I will say that you know your body and if you feel something is wrong then there probably is. Maybe you should push for a culture, just to rule out if you are growing anything or not. Maybe you have something and the antibiotics they were giving you was keeping it "at bay" and not treating it. I have had that happen. You start feeling just a little better and as soon as the meds are done, back down the slide you go. It might not hurt to get a chest xray, compare to your last one, see if there has been additional damage done. Also I dont like ur doctor saying "be happy with xx FEV1...". I dont think that is a good way for a doctor to look at it. A doctor shouldnt suggest that you settle for FEVs, they should try all avenues to get it back up to where you were, and all of those must completely fail before saying "be happy with...". I hope you get feeling better.

 

[Ricky123]

i think it depends on the person and your stratin of cf some people can their fev1 back up but others unortunatly cant i have looked at fev 1 for the last 5 years and once i drop i can never seem to get it back up

 

[Ricky123]

i think it depends on the person and your stratin of cf some people can their fev1 back up but others unortunatly cant i have looked at fev 1 for the last 5 years and once i drop i can never seem to get it back up

 

[Ricky123]

i think it depends on the person and your stratin of cf some people can their fev1 back up but others unortunatly cant i have looked at fev 1 for the last 5 years and once i drop i can never seem to get it back up

 

[JazzysMom]

It does depend on many things, but the fact that they arent willing to even try iv's pisses me off. IF you are able to get back up using iv's & being aggresssive the longer you wait, the less chance of it. I would be highly upset if they said I should be "grateful" for having 82%. Yes it is good compared to many CFers, but we are talking about YOU not others. Push, push, kick & scream. If the iv's dont work along with being aggressive in CPT etc then you can at least say you tried. What does it hurt? NOTHING that is what.....................I am so irate about your situation right now!

 

[JazzysMom]

It does depend on many things, but the fact that they arent willing to even try iv's pisses me off. IF you are able to get back up using iv's & being aggresssive the longer you wait, the less chance of it. I would be highly upset if they said I should be "grateful" for having 82%. Yes it is good compared to many CFers, but we are talking about YOU not others. Push, push, kick & scream. If the iv's dont work along with being aggressive in CPT etc then you can at least say you tried. What does it hurt? NOTHING that is what.....................I am so irate about your situation right now!

 

[JazzysMom]

It does depend on many things, but the fact that they arent willing to even try iv's pisses me off. IF you are able to get back up using iv's & being aggresssive the longer you wait, the less chance of it. I would be highly upset if they said I should be "grateful" for having 82%. Yes it is good compared to many CFers, but we are talking about YOU not others. Push, push, kick & scream. If the iv's dont work along with being aggressive in CPT etc then you can at least say you tried. What does it hurt? NOTHING that is what.....................I am so irate about your situation right now!

 

[coltsfan715]

Hi there Alisha,

I am not for sure on this but will offer my opinion. It may be that they do NOT think there is a problem simply based on your numbers. Typically I know for me and I would assume many other CF patients our highest numbers will come right after or at the end of IV antibiotic treatment. After a few weeks or a month or so those numbers will drop slightly to a more reasonable "normal" range for the patient.

Maybe when you had your PFT after receiving the IV meds and all and it was 85 that was the best you could be at this point. Then a few weeks or a month or so later your PFTs show 82% and maybe that is more accurate as to what you are running day to day - rather than at the peak (right after IVs).

Also is the 82% your FVC or your FEV1. If it is your FVC maybe your FEV1 is acting up and is lower and maybe that is why you are feeling so crummy? If it is your FEV1 I really have no advice to offer in regards to you feeling crummy other than maybe you are just having difficulty with allergies or whatever bacteria you are culturing now. Do you have asthma as well? Maybe that is contributing if you are. Maybe your body is still adjusting to your new level of health or maybe there really is a problem.

It is very hard to judge if you are not the person affected. I am not you and only YOU can really know when something is wrong with your body. I would have a heart to heart with the docs.

I will say this in regards to your docs though - I would try approaching them with more of a "how are we going to fix this cause I feel crappy attitude" than a "I feel crappy give me meds to fix it attitude". I don't know HOW you are approaching your docs so I am NOT trying to point fingers. I just know that a friend of mine always tries to approach her doc with the I KNOW I am sick and I WANT meds NOW! attitude and they always shut her down - unless she is truly sick. They fight with her constantly over treatments and have started to doubt what she says she feels because she is always saying she wants meds or is sick. That is just a thought. Maybe if you approach them with a lets handle this TOGETHER attitude they will be more likely to listen and do something. Most docs want to help you get better or they wouldn't be doing what they are doing. If you continue to have a difficult time though ... try talking to someone else (just my opinion on that - I know finding a doc experienced with CF may not be easy though).

Take Care and I hope you start feeling better soon,
Lindsey

 

[coltsfan715]

Hi there Alisha,

I am not for sure on this but will offer my opinion. It may be that they do NOT think there is a problem simply based on your numbers. Typically I know for me and I would assume many other CF patients our highest numbers will come right after or at the end of IV antibiotic treatment. After a few weeks or a month or so those numbers will drop slightly to a more reasonable "normal" range for the patient.

Maybe when you had your PFT after receiving the IV meds and all and it was 85 that was the best you could be at this point. Then a few weeks or a month or so later your PFTs show 82% and maybe that is more accurate as to what you are running day to day - rather than at the peak (right after IVs).

Also is the 82% your FVC or your FEV1. If it is your FVC maybe your FEV1 is acting up and is lower and maybe that is why you are feeling so crummy? If it is your FEV1 I really have no advice to offer in regards to you feeling crummy other than maybe you are just having difficulty with allergies or whatever bacteria you are culturing now. Do you have asthma as well? Maybe that is contributing if you are. Maybe your body is still adjusting to your new level of health or maybe there really is a problem.

It is very hard to judge if you are not the person affected. I am not you and only YOU can really know when something is wrong with your body. I would have a heart to heart with the docs.

I will say this in regards to your docs though - I would try approaching them with more of a "how are we going to fix this cause I feel crappy attitude" than a "I feel crappy give me meds to fix it attitude". I don't know HOW you are approaching your docs so I am NOT trying to point fingers. I just know that a friend of mine always tries to approach her doc with the I KNOW I am sick and I WANT meds NOW! attitude and they always shut her down - unless she is truly sick. They fight with her constantly over treatments and have started to doubt what she says she feels because she is always saying she wants meds or is sick. That is just a thought. Maybe if you approach them with a lets handle this TOGETHER attitude they will be more likely to listen and do something. Most docs want to help you get better or they wouldn't be doing what they are doing. If you continue to have a difficult time though ... try talking to someone else (just my opinion on that - I know finding a doc experienced with CF may not be easy though).

Take Care and I hope you start feeling better soon,
Lindsey

 

[coltsfan715]

Hi there Alisha,

I am not for sure on this but will offer my opinion. It may be that they do NOT think there is a problem simply based on your numbers. Typically I know for me and I would assume many other CF patients our highest numbers will come right after or at the end of IV antibiotic treatment. After a few weeks or a month or so those numbers will drop slightly to a more reasonable "normal" range for the patient.

Maybe when you had your PFT after receiving the IV meds and all and it was 85 that was the best you could be at this point. Then a few weeks or a month or so later your PFTs show 82% and maybe that is more accurate as to what you are running day to day - rather than at the peak (right after IVs).

Also is the 82% your FVC or your FEV1. If it is your FVC maybe your FEV1 is acting up and is lower and maybe that is why you are feeling so crummy? If it is your FEV1 I really have no advice to offer in regards to you feeling crummy other than maybe you are just having difficulty with allergies or whatever bacteria you are culturing now. Do you have asthma as well? Maybe that is contributing if you are. Maybe your body is still adjusting to your new level of health or maybe there really is a problem.

It is very hard to judge if you are not the person affected. I am not you and only YOU can really know when something is wrong with your body. I would have a heart to heart with the docs.

I will say this in regards to your docs though - I would try approaching them with more of a "how are we going to fix this cause I feel crappy attitude" than a "I feel crappy give me meds to fix it attitude". I don't know HOW you are approaching your docs so I am NOT trying to point fingers. I just know that a friend of mine always tries to approach her doc with the I KNOW I am sick and I WANT meds NOW! attitude and they always shut her down - unless she is truly sick. They fight with her constantly over treatments and have started to doubt what she says she feels because she is always saying she wants meds or is sick. That is just a thought. Maybe if you approach them with a lets handle this TOGETHER attitude they will be more likely to listen and do something. Most docs want to help you get better or they wouldn't be doing what they are doing. If you continue to have a difficult time though ... try talking to someone else (just my opinion on that - I know finding a doc experienced with CF may not be easy though).

Take Care and I hope you start feeling better soon,
Lindsey

 

[Jem]

You are the best judge of how you feel and if you are feeling tight in the chest, where you can't breathe in deep and do not feel right then you have every reason to expect that your doctor will take your complaints seriously and get to the bottom of why this is occurring. Just telling you to be grateful for having an FV1 of 82% ....well that is insulting. He should be judging your health individually not against some cf chart that he has conjured up.

Good for you <b>not</b> being satisfied with his response and for insisting that something be done here before it is too late to get back what you have lost in lung function. Certainly you do want to be aggressive so that function does not go down further.

As Danyell mentioned...how are your sputum cultures? And what type of bacteria are they cultured for? When was your last x-ray and better yet cat scan?

After your PFT on Monday, which I do hope shows improvement but if not, I hope that your doctor will have a sound plan of attack to do all that can be done, whether that includes further testing, changing or adding medications, or an admission for iv's. You are doing all that you can to be as healthy as you can be and you have every right to expect that he will do the same. If he does not then it might be time to look for another cf clinic or doctor within the one you go to now.

Please let us know how you make out. We are rooting for you!<img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[Jem]

You are the best judge of how you feel and if you are feeling tight in the chest, where you can't breathe in deep and do not feel right then you have every reason to expect that your doctor will take your complaints seriously and get to the bottom of why this is occurring. Just telling you to be grateful for having an FV1 of 82% ....well that is insulting. He should be judging your health individually not against some cf chart that he has conjured up.

Good for you <b>not</b> being satisfied with his response and for insisting that something be done here before it is too late to get back what you have lost in lung function. Certainly you do want to be aggressive so that function does not go down further.

As Danyell mentioned...how are your sputum cultures? And what type of bacteria are they cultured for? When was your last x-ray and better yet cat scan?

After your PFT on Monday, which I do hope shows improvement but if not, I hope that your doctor will have a sound plan of attack to do all that can be done, whether that includes further testing, changing or adding medications, or an admission for iv's. You are doing all that you can to be as healthy as you can be and you have every right to expect that he will do the same. If he does not then it might be time to look for another cf clinic or doctor within the one you go to now.

Please let us know how you make out. We are rooting for you!<img src="i/expressions/face-icon-small-wink.gif" border="0">