Fev1 Lower than 20%

[alikey1]

Ok guys we are new to the forums im the wife of a CF parter and he's 29 and has done it all...Meds are tobi,pulmizime,hypertonic saline,albutorol,enzymes. Now we had a check up after a scare in the hospital he has the left lung lobe tear and had blood streaming into the lungs. the after not being ale to cough for a week to stop the lobe from tearing again. We are about a month out of the hopital and now the PFT test shows FEV1 is 17.5% and now showing inprovment...What am i to expect does anyone know? Im getting scared that we are looking at transplant time OR can people get it back up to some what nomal.We do the treament 4 times a day now. Any advice would be greatly apprieciated.

Thanks in advance for listening.
Wife 33 W/O CF Husband W/CF 29

 

[alikey1]

Ok guys we are new to the forums im the wife of a CF parter and he's 29 and has done it all...Meds are tobi,pulmizime,hypertonic saline,albutorol,enzymes. Now we had a check up after a scare in the hospital he has the left lung lobe tear and had blood streaming into the lungs. the after not being ale to cough for a week to stop the lobe from tearing again. We are about a month out of the hopital and now the PFT test shows FEV1 is 17.5% and now showing inprovment...What am i to expect does anyone know? Im getting scared that we are looking at transplant time OR can people get it back up to some what nomal.We do the treament 4 times a day now. Any advice would be greatly apprieciated.

Thanks in advance for listening.
Wife 33 W/O CF Husband W/CF 29

 

[alikey1]

Ok guys we are new to the forums im the wife of a CF parter and he's 29 and has done it all...Meds are tobi,pulmizime,hypertonic saline,albutorol,enzymes. Now we had a check up after a scare in the hospital he has the left lung lobe tear and had blood streaming into the lungs. the after not being ale to cough for a week to stop the lobe from tearing again. We are about a month out of the hopital and now the PFT test shows FEV1 is 17.5% and now showing inprovment...What am i to expect does anyone know? Im getting scared that we are looking at transplant time OR can people get it back up to some what nomal.We do the treament 4 times a day now. Any advice would be greatly apprieciated.

Thanks in advance for listening.
Wife 33 W/O CF Husband W/CF 29

 

[alikey1]

Ok guys we are new to the forums im the wife of a CF parter and he's 29 and has done it all...Meds are tobi,pulmizime,hypertonic saline,albutorol,enzymes. Now we had a check up after a scare in the hospital he has the left lung lobe tear and had blood streaming into the lungs. the after not being ale to cough for a week to stop the lobe from tearing again. We are about a month out of the hopital and now the PFT test shows FEV1 is 17.5% and now showing inprovment...What am i to expect does anyone know? Im getting scared that we are looking at transplant time OR can people get it back up to some what nomal.We do the treament 4 times a day now. Any advice would be greatly apprieciated.

Thanks in advance for listening.
Wife 33 W/O CF Husband W/CF 29

 

[alikey1]

Ok guys we are new to the forums im the wife of a CF parter and he's 29 and has done it all...Meds are tobi,pulmizime,hypertonic saline,albutorol,enzymes. Now we had a check up after a scare in the hospital he has the left lung lobe tear and had blood streaming into the lungs. the after not being ale to cough for a week to stop the lobe from tearing again. We are about a month out of the hopital and now the PFT test shows FEV1 is 17.5% and now showing inprovment...What am i to expect does anyone know? Im getting scared that we are looking at transplant time OR can people get it back up to some what nomal.We do the treament 4 times a day now. Any advice would be greatly apprieciated.

Thanks in advance for listening.
Wife 33 W/O CF Husband W/CF 29

 

[nick9742]

Is this the first time it has dropped and stayed this low? Unfortunately with numbers like that I would think if they do not go up soon and by a pretty good margin it is definitely time to get a transplant and probably has to be done ASAP. My numbers have been that low once after an accidental suicide attempt and being on a ventilator. They were 17% for 2 weeks but were up to 21 in 2 weeks and back up to 25 in a month. Now I'm at 36% a year later...but I was barely able to survive while I was below 20..and it wasn't easy. Hopefully he can get on the transplant list soon enough if he doesn't go up. Good luck with everything.

 

[nick9742]

Is this the first time it has dropped and stayed this low? Unfortunately with numbers like that I would think if they do not go up soon and by a pretty good margin it is definitely time to get a transplant and probably has to be done ASAP. My numbers have been that low once after an accidental suicide attempt and being on a ventilator. They were 17% for 2 weeks but were up to 21 in 2 weeks and back up to 25 in a month. Now I'm at 36% a year later...but I was barely able to survive while I was below 20..and it wasn't easy. Hopefully he can get on the transplant list soon enough if he doesn't go up. Good luck with everything.

 

[nick9742]

Is this the first time it has dropped and stayed this low? Unfortunately with numbers like that I would think if they do not go up soon and by a pretty good margin it is definitely time to get a transplant and probably has to be done ASAP. My numbers have been that low once after an accidental suicide attempt and being on a ventilator. They were 17% for 2 weeks but were up to 21 in 2 weeks and back up to 25 in a month. Now I'm at 36% a year later...but I was barely able to survive while I was below 20..and it wasn't easy. Hopefully he can get on the transplant list soon enough if he doesn't go up. Good luck with everything.

 

[nick9742]

Is this the first time it has dropped and stayed this low? Unfortunately with numbers like that I would think if they do not go up soon and by a pretty good margin it is definitely time to get a transplant and probably has to be done ASAP. My numbers have been that low once after an accidental suicide attempt and being on a ventilator. They were 17% for 2 weeks but were up to 21 in 2 weeks and back up to 25 in a month. Now I'm at 36% a year later...but I was barely able to survive while I was below 20..and it wasn't easy. Hopefully he can get on the transplant list soon enough if he doesn't go up. Good luck with everything.

 

[nick9742]

Is this the first time it has dropped and stayed this low? Unfortunately with numbers like that I would think if they do not go up soon and by a pretty good margin it is definitely time to get a transplant and probably has to be done ASAP. My numbers have been that low once after an accidental suicide attempt and being on a ventilator. They were 17% for 2 weeks but were up to 21 in 2 weeks and back up to 25 in a month. Now I'm at 36% a year later...but I was barely able to survive while I was below 20..and it wasn't easy. Hopefully he can get on the transplant list soon enough if he doesn't go up. Good luck with everything.

 

[nicolaj]

Two years ago my FEV1 dropped to 15%.

I totally understand how you feel,and i no how scary it is.Transplant was mentioned to me,which totally freaked me out!! Because it was such a shock,i decided to try on my own to improve my readings on my own.

The drop of my FEV1 was very sudden and i started using different nebulised antibiotics like Tobi and Meropenem to help(trust me,this was a big change for me,going from no nebs to doing nebs four times a day!)

Anyway,over about a year or so ive managed to get my FEV1 to 30%, double of what it was,which im very proud of. I no they will never be what they were (about 60%),and i accept that, And thats why even though my FEV1 has risen, ive decided to go ahead with transplant.

What worries me about your husband is that hes been doing all his meds,like the hypertonic saline etc,so theres not much more he can phisically do. I needed a kick up the ASS to do more treatment,and i got results, but what more can your husband do that hes not already doing?

One thing i will say though is please be patient and get your husband to continue doing all his treatments. Its only been a month since hes been out of hospital,and like you said hes not been able to cough for a week,which really wont help with his FEV1.

Is your husband on good medication to stop the bleed?

I agree with nicky that if you dont see an improvement, transplant is a serious option to consider. I no you must be so scared of the un known, so was i and i still am, but i think you should start to think about it. What harm can it do? Even if your husbands FEV1 does rise,at least you was prepared!

Please dont hesitate to send me a Private Message anytime

TAKE CARE!

Nicola xxxxx

 

[nicolaj]

Two years ago my FEV1 dropped to 15%.

I totally understand how you feel,and i no how scary it is.Transplant was mentioned to me,which totally freaked me out!! Because it was such a shock,i decided to try on my own to improve my readings on my own.

The drop of my FEV1 was very sudden and i started using different nebulised antibiotics like Tobi and Meropenem to help(trust me,this was a big change for me,going from no nebs to doing nebs four times a day!)

Anyway,over about a year or so ive managed to get my FEV1 to 30%, double of what it was,which im very proud of. I no they will never be what they were (about 60%),and i accept that, And thats why even though my FEV1 has risen, ive decided to go ahead with transplant.

What worries me about your husband is that hes been doing all his meds,like the hypertonic saline etc,so theres not much more he can phisically do. I needed a kick up the ASS to do more treatment,and i got results, but what more can your husband do that hes not already doing?

One thing i will say though is please be patient and get your husband to continue doing all his treatments. Its only been a month since hes been out of hospital,and like you said hes not been able to cough for a week,which really wont help with his FEV1.

Is your husband on good medication to stop the bleed?

I agree with nicky that if you dont see an improvement, transplant is a serious option to consider. I no you must be so scared of the un known, so was i and i still am, but i think you should start to think about it. What harm can it do? Even if your husbands FEV1 does rise,at least you was prepared!

Please dont hesitate to send me a Private Message anytime

TAKE CARE!

Nicola xxxxx

 

[nicolaj]

Two years ago my FEV1 dropped to 15%.

I totally understand how you feel,and i no how scary it is.Transplant was mentioned to me,which totally freaked me out!! Because it was such a shock,i decided to try on my own to improve my readings on my own.

The drop of my FEV1 was very sudden and i started using different nebulised antibiotics like Tobi and Meropenem to help(trust me,this was a big change for me,going from no nebs to doing nebs four times a day!)

Anyway,over about a year or so ive managed to get my FEV1 to 30%, double of what it was,which im very proud of. I no they will never be what they were (about 60%),and i accept that, And thats why even though my FEV1 has risen, ive decided to go ahead with transplant.

What worries me about your husband is that hes been doing all his meds,like the hypertonic saline etc,so theres not much more he can phisically do. I needed a kick up the ASS to do more treatment,and i got results, but what more can your husband do that hes not already doing?

One thing i will say though is please be patient and get your husband to continue doing all his treatments. Its only been a month since hes been out of hospital,and like you said hes not been able to cough for a week,which really wont help with his FEV1.

Is your husband on good medication to stop the bleed?

I agree with nicky that if you dont see an improvement, transplant is a serious option to consider. I no you must be so scared of the un known, so was i and i still am, but i think you should start to think about it. What harm can it do? Even if your husbands FEV1 does rise,at least you was prepared!

Please dont hesitate to send me a Private Message anytime

TAKE CARE!

Nicola xxxxx

 

[nicolaj]

Two years ago my FEV1 dropped to 15%.

I totally understand how you feel,and i no how scary it is.Transplant was mentioned to me,which totally freaked me out!! Because it was such a shock,i decided to try on my own to improve my readings on my own.

The drop of my FEV1 was very sudden and i started using different nebulised antibiotics like Tobi and Meropenem to help(trust me,this was a big change for me,going from no nebs to doing nebs four times a day!)

Anyway,over about a year or so ive managed to get my FEV1 to 30%, double of what it was,which im very proud of. I no they will never be what they were (about 60%),and i accept that, And thats why even though my FEV1 has risen, ive decided to go ahead with transplant.

What worries me about your husband is that hes been doing all his meds,like the hypertonic saline etc,so theres not much more he can phisically do. I needed a kick up the ASS to do more treatment,and i got results, but what more can your husband do that hes not already doing?

One thing i will say though is please be patient and get your husband to continue doing all his treatments. Its only been a month since hes been out of hospital,and like you said hes not been able to cough for a week,which really wont help with his FEV1.

Is your husband on good medication to stop the bleed?

I agree with nicky that if you dont see an improvement, transplant is a serious option to consider. I no you must be so scared of the un known, so was i and i still am, but i think you should start to think about it. What harm can it do? Even if your husbands FEV1 does rise,at least you was prepared!

Please dont hesitate to send me a Private Message anytime

TAKE CARE!

Nicola xxxxx

 

[nicolaj]

Two years ago my FEV1 dropped to 15%.

I totally understand how you feel,and i no how scary it is.Transplant was mentioned to me,which totally freaked me out!! Because it was such a shock,i decided to try on my own to improve my readings on my own.

The drop of my FEV1 was very sudden and i started using different nebulised antibiotics like Tobi and Meropenem to help(trust me,this was a big change for me,going from no nebs to doing nebs four times a day!)

Anyway,over about a year or so ive managed to get my FEV1 to 30%, double of what it was,which im very proud of. I no they will never be what they were (about 60%),and i accept that, And thats why even though my FEV1 has risen, ive decided to go ahead with transplant.

What worries me about your husband is that hes been doing all his meds,like the hypertonic saline etc,so theres not much more he can phisically do. I needed a kick up the ASS to do more treatment,and i got results, but what more can your husband do that hes not already doing?

One thing i will say though is please be patient and get your husband to continue doing all his treatments. Its only been a month since hes been out of hospital,and like you said hes not been able to cough for a week,which really wont help with his FEV1.

Is your husband on good medication to stop the bleed?

I agree with nicky that if you dont see an improvement, transplant is a serious option to consider. I no you must be so scared of the un known, so was i and i still am, but i think you should start to think about it. What harm can it do? Even if your husbands FEV1 does rise,at least you was prepared!

Please dont hesitate to send me a Private Message anytime

TAKE CARE!

Nicola xxxxx