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Help!!

H

hwilson19

New member
At the moment, i'm not very good, cut a long story short. Over the last 12 months my FEV1s have decreased from 68% to now 34%, i have become hypersensitive to IVs and no benefit at all. had a Bronchoscopy in May and a "washout" of my lungs, mucus was creamy and not too sticky as they say. I have increased exercise and doing TOBI nebs twice a day same as DNAnse. I just get the feeling of what im doing is making me worse rather than better. What am i doing wrong??!!! Some days my chest feels ok and i'm not feeling what the machine says i'm supposed to be feeling. surely if they were that low i couldn't do 30 mins on treadmill with normal breathlessness but yet some days can't even walk far without keeling over. I'm confused!! And at the moment i am home after being admitted for 2 weeks of IVs after FEV1s were 38%, after a week of IVs and steriods they went up to 40% but had them done again 4 times on tuesday and now 34%,nothing changed in that week except i increased my exercise. Feeling pretty chessed off and utterly baffled atm. Doctors don't know what up they are just experimenting on me with different drugs, i know they are trying but some days i could strangle them!

Any suggestions.

Hannah Wilson 17 w/cf Delta 508
 
H

hwilson19

New member
At the moment, i'm not very good, cut a long story short. Over the last 12 months my FEV1s have decreased from 68% to now 34%, i have become hypersensitive to IVs and no benefit at all. had a Bronchoscopy in May and a "washout" of my lungs, mucus was creamy and not too sticky as they say. I have increased exercise and doing TOBI nebs twice a day same as DNAnse. I just get the feeling of what im doing is making me worse rather than better. What am i doing wrong??!!! Some days my chest feels ok and i'm not feeling what the machine says i'm supposed to be feeling. surely if they were that low i couldn't do 30 mins on treadmill with normal breathlessness but yet some days can't even walk far without keeling over. I'm confused!! And at the moment i am home after being admitted for 2 weeks of IVs after FEV1s were 38%, after a week of IVs and steriods they went up to 40% but had them done again 4 times on tuesday and now 34%,nothing changed in that week except i increased my exercise. Feeling pretty chessed off and utterly baffled atm. Doctors don't know what up they are just experimenting on me with different drugs, i know they are trying but some days i could strangle them!

Any suggestions.

Hannah Wilson 17 w/cf Delta 508
 
H

hwilson19

New member
At the moment, i'm not very good, cut a long story short. Over the last 12 months my FEV1s have decreased from 68% to now 34%, i have become hypersensitive to IVs and no benefit at all. had a Bronchoscopy in May and a "washout" of my lungs, mucus was creamy and not too sticky as they say. I have increased exercise and doing TOBI nebs twice a day same as DNAnse. I just get the feeling of what im doing is making me worse rather than better. What am i doing wrong??!!! Some days my chest feels ok and i'm not feeling what the machine says i'm supposed to be feeling. surely if they were that low i couldn't do 30 mins on treadmill with normal breathlessness but yet some days can't even walk far without keeling over. I'm confused!! And at the moment i am home after being admitted for 2 weeks of IVs after FEV1s were 38%, after a week of IVs and steriods they went up to 40% but had them done again 4 times on tuesday and now 34%,nothing changed in that week except i increased my exercise. Feeling pretty chessed off and utterly baffled atm. Doctors don't know what up they are just experimenting on me with different drugs, i know they are trying but some days i could strangle them!

Any suggestions.

Hannah Wilson 17 w/cf Delta 508
 
H

hwilson19

New member
At the moment, i'm not very good, cut a long story short. Over the last 12 months my FEV1s have decreased from 68% to now 34%, i have become hypersensitive to IVs and no benefit at all. had a Bronchoscopy in May and a "washout" of my lungs, mucus was creamy and not too sticky as they say. I have increased exercise and doing TOBI nebs twice a day same as DNAnse. I just get the feeling of what im doing is making me worse rather than better. What am i doing wrong??!!! Some days my chest feels ok and i'm not feeling what the machine says i'm supposed to be feeling. surely if they were that low i couldn't do 30 mins on treadmill with normal breathlessness but yet some days can't even walk far without keeling over. I'm confused!! And at the moment i am home after being admitted for 2 weeks of IVs after FEV1s were 38%, after a week of IVs and steriods they went up to 40% but had them done again 4 times on tuesday and now 34%,nothing changed in that week except i increased my exercise. Feeling pretty chessed off and utterly baffled atm. Doctors don't know what up they are just experimenting on me with different drugs, i know they are trying but some days i could strangle them!

Any suggestions.

Hannah Wilson 17 w/cf Delta 508
 
H

hwilson19

New member
At the moment, i'm not very good, cut a long story short. Over the last 12 months my FEV1s have decreased from 68% to now 34%, i have become hypersensitive to IVs and no benefit at all. had a Bronchoscopy in May and a "washout" of my lungs, mucus was creamy and not too sticky as they say. I have increased exercise and doing TOBI nebs twice a day same as DNAnse. I just get the feeling of what im doing is making me worse rather than better. What am i doing wrong??!!! Some days my chest feels ok and i'm not feeling what the machine says i'm supposed to be feeling. surely if they were that low i couldn't do 30 mins on treadmill with normal breathlessness but yet some days can't even walk far without keeling over. I'm confused!! And at the moment i am home after being admitted for 2 weeks of IVs after FEV1s were 38%, after a week of IVs and steriods they went up to 40% but had them done again 4 times on tuesday and now 34%,nothing changed in that week except i increased my exercise. Feeling pretty chessed off and utterly baffled atm. Doctors don't know what up they are just experimenting on me with different drugs, i know they are trying but some days i could strangle them!

Any suggestions.

Hannah Wilson 17 w/cf Delta 508
 
D

Diane

New member
This is probably a stupid question but have they donea sputum sample to make sure what they are giving you iv is what your bugs are sensitive to? Have they done blood cultures ? Is it possible you have a fungal infecton in your lungs? Do you have allergies and are they being correctly treated? Do you have fevers also? Sounds to me like something else is going on with you that they havent found yet, but i'm no expert. I hope you can get to the bottom of it soon.
 
D

Diane

New member
This is probably a stupid question but have they donea sputum sample to make sure what they are giving you iv is what your bugs are sensitive to? Have they done blood cultures ? Is it possible you have a fungal infecton in your lungs? Do you have allergies and are they being correctly treated? Do you have fevers also? Sounds to me like something else is going on with you that they havent found yet, but i'm no expert. I hope you can get to the bottom of it soon.
 
D

Diane

New member
This is probably a stupid question but have they donea sputum sample to make sure what they are giving you iv is what your bugs are sensitive to? Have they done blood cultures ? Is it possible you have a fungal infecton in your lungs? Do you have allergies and are they being correctly treated? Do you have fevers also? Sounds to me like something else is going on with you that they havent found yet, but i'm no expert. I hope you can get to the bottom of it soon.
 
D

Diane

New member
This is probably a stupid question but have they donea sputum sample to make sure what they are giving you iv is what your bugs are sensitive to? Have they done blood cultures ? Is it possible you have a fungal infecton in your lungs? Do you have allergies and are they being correctly treated? Do you have fevers also? Sounds to me like something else is going on with you that they havent found yet, but i'm no expert. I hope you can get to the bottom of it soon.
 
D

Diane

New member
This is probably a stupid question but have they donea sputum sample to make sure what they are giving you iv is what your bugs are sensitive to? Have they done blood cultures ? Is it possible you have a fungal infecton in your lungs? Do you have allergies and are they being correctly treated? Do you have fevers also? Sounds to me like something else is going on with you that they havent found yet, but i'm no expert. I hope you can get to the bottom of it soon.
 
H

hwilson19

New member
Yeah they have done countless sputum samples, though the only thing is my sputum can tell the doctors what i am sensitive to but my body has other ideas when they try the IV antibioctics, like im ok on oral Cipro but not IV as it makes me sick as a dog. ruled out Aspergullis and fungal infection and micro aspirations. I dont suffer with fevers, bloods are fine. I don't now anymore and that seems to be the case with me, mysterious and unknown.
 
H

hwilson19

New member
Yeah they have done countless sputum samples, though the only thing is my sputum can tell the doctors what i am sensitive to but my body has other ideas when they try the IV antibioctics, like im ok on oral Cipro but not IV as it makes me sick as a dog. ruled out Aspergullis and fungal infection and micro aspirations. I dont suffer with fevers, bloods are fine. I don't now anymore and that seems to be the case with me, mysterious and unknown.
 
H

hwilson19

New member
Yeah they have done countless sputum samples, though the only thing is my sputum can tell the doctors what i am sensitive to but my body has other ideas when they try the IV antibioctics, like im ok on oral Cipro but not IV as it makes me sick as a dog. ruled out Aspergullis and fungal infection and micro aspirations. I dont suffer with fevers, bloods are fine. I don't now anymore and that seems to be the case with me, mysterious and unknown.
 
H

hwilson19

New member
Yeah they have done countless sputum samples, though the only thing is my sputum can tell the doctors what i am sensitive to but my body has other ideas when they try the IV antibioctics, like im ok on oral Cipro but not IV as it makes me sick as a dog. ruled out Aspergullis and fungal infection and micro aspirations. I dont suffer with fevers, bloods are fine. I don't now anymore and that seems to be the case with me, mysterious and unknown.
 
H

hwilson19

New member
Yeah they have done countless sputum samples, though the only thing is my sputum can tell the doctors what i am sensitive to but my body has other ideas when they try the IV antibioctics, like im ok on oral Cipro but not IV as it makes me sick as a dog. ruled out Aspergullis and fungal infection and micro aspirations. I dont suffer with fevers, bloods are fine. I don't now anymore and that seems to be the case with me, mysterious and unknown.
 
B

beleache

New member
Do you have asthma? and are you on meds for it if you do? I went through a rough time w/ an asthmatic exacerbation (neither myself or my drs knew i had this problem) and am now feeling better w/ added meds..

I am also allergic to Avalox IV and not to Cipro (oral) which i believe is the same drug or in the same family..

I hope you get some answers soon.. take care <img src="i/expressions/heart.gif" border="0"> joni
 
B

beleache

New member
Do you have asthma? and are you on meds for it if you do? I went through a rough time w/ an asthmatic exacerbation (neither myself or my drs knew i had this problem) and am now feeling better w/ added meds..

I am also allergic to Avalox IV and not to Cipro (oral) which i believe is the same drug or in the same family..

I hope you get some answers soon.. take care <img src="i/expressions/heart.gif" border="0"> joni
 
B

beleache

New member
Do you have asthma? and are you on meds for it if you do? I went through a rough time w/ an asthmatic exacerbation (neither myself or my drs knew i had this problem) and am now feeling better w/ added meds..

I am also allergic to Avalox IV and not to Cipro (oral) which i believe is the same drug or in the same family..

I hope you get some answers soon.. take care <img src="i/expressions/heart.gif" border="0"> joni
 
B

beleache

New member
Do you have asthma? and are you on meds for it if you do? I went through a rough time w/ an asthmatic exacerbation (neither myself or my drs knew i had this problem) and am now feeling better w/ added meds..

I am also allergic to Avalox IV and not to Cipro (oral) which i believe is the same drug or in the same family..

I hope you get some answers soon.. take care <img src="i/expressions/heart.gif" border="0"> joni
 
B

beleache

New member
Do you have asthma? and are you on meds for it if you do? I went through a rough time w/ an asthmatic exacerbation (neither myself or my drs knew i had this problem) and am now feeling better w/ added meds..
<br />
<br /> I am also allergic to Avalox IV and not to Cipro (oral) which i believe is the same drug or in the same family..
<br />
<br /> I hope you get some answers soon.. take care <img src="i/expressions/heart.gif" border="0"> joni
 
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