Fev1 Lower than 20%

A

alikey1

New member
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
 
A

alikey1

New member
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
 
A

alikey1

New member
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
 
A

alikey1

New member
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
 
A

alikey1

New member
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
 
F

fr3ak

Guest
I am surprised that your hubby hasn't been approached well before this to consider transplant...

Usually they start talking tx once your FEV1 dips to around 30-40% to allow time to wait...

If it hasn't been brought up then I would recommend bringing it up with the Drs yourself (you or your hubby) and find out if he is eligible etc...

I received my lungs when my FEV1 were around 10% and it was an extremely hard slog surviving on that amount of function! which I am sure you are fully aware of...

Unfortunatley once the damage is done and your functions are so low it is highly unlikely that your function will dramatically change...

Sorry to be a downer, but given the info you have provided I would say get on the list as quick as you can!

Good luck
 
F

fr3ak

Guest
I am surprised that your hubby hasn't been approached well before this to consider transplant...

Usually they start talking tx once your FEV1 dips to around 30-40% to allow time to wait...

If it hasn't been brought up then I would recommend bringing it up with the Drs yourself (you or your hubby) and find out if he is eligible etc...

I received my lungs when my FEV1 were around 10% and it was an extremely hard slog surviving on that amount of function! which I am sure you are fully aware of...

Unfortunatley once the damage is done and your functions are so low it is highly unlikely that your function will dramatically change...

Sorry to be a downer, but given the info you have provided I would say get on the list as quick as you can!

Good luck
 
F

fr3ak

Guest
I am surprised that your hubby hasn't been approached well before this to consider transplant...

Usually they start talking tx once your FEV1 dips to around 30-40% to allow time to wait...

If it hasn't been brought up then I would recommend bringing it up with the Drs yourself (you or your hubby) and find out if he is eligible etc...

I received my lungs when my FEV1 were around 10% and it was an extremely hard slog surviving on that amount of function! which I am sure you are fully aware of...

Unfortunatley once the damage is done and your functions are so low it is highly unlikely that your function will dramatically change...

Sorry to be a downer, but given the info you have provided I would say get on the list as quick as you can!

Good luck
 
F

fr3ak

Guest
I am surprised that your hubby hasn't been approached well before this to consider transplant...

Usually they start talking tx once your FEV1 dips to around 30-40% to allow time to wait...

If it hasn't been brought up then I would recommend bringing it up with the Drs yourself (you or your hubby) and find out if he is eligible etc...

I received my lungs when my FEV1 were around 10% and it was an extremely hard slog surviving on that amount of function! which I am sure you are fully aware of...

Unfortunatley once the damage is done and your functions are so low it is highly unlikely that your function will dramatically change...

Sorry to be a downer, but given the info you have provided I would say get on the list as quick as you can!

Good luck
 
F

fr3ak

Guest
I am surprised that your hubby hasn't been approached well before this to consider transplant...

Usually they start talking tx once your FEV1 dips to around 30-40% to allow time to wait...

If it hasn't been brought up then I would recommend bringing it up with the Drs yourself (you or your hubby) and find out if he is eligible etc...

I received my lungs when my FEV1 were around 10% and it was an extremely hard slog surviving on that amount of function! which I am sure you are fully aware of...

Unfortunatley once the damage is done and your functions are so low it is highly unlikely that your function will dramatically change...

Sorry to be a downer, but given the info you have provided I would say get on the list as quick as you can!

Good luck
 
C

coltsfan715

New member
I would definitely approach the topic of transplant with your husband and his doctor if it is something that he is interested in pursuing. If for no other reason than to gather information at this time. I was never approached with the talk of transplant - I MYSELF I had to bring it up to my doctors. I asked them about it when my lung function FEV1 was at roughly 29-30%. I was told at that time that I should start an evaluation if I was interested. I was listed at 25% FEV1 and transplanted when I was at about 22-23% (after 2.5 weeks of IVs) 18% when sick.

As mentioned above it is hard once your lung function gets so low to improve large amounts. It is possible to get to a functional point. I know of a woman that went for an evaluation and was listed and began the pulmonary rehab program at our clinic and is now still listed but on the high end of lung function (in regards to transplant). She went from barely being able to walk for a minute straight (and that may even have been too much) to now being able to jog for 15 minutes on a treadmill. I am not sure what her lung function was or is, but I know she was able to improve somewhat - but again she is still considered listable in regards to needing a transplant.

I would at the very least suggest pulmonary rehab with your doctor and see what they can help you with. They SHOULD NOT have a problem getting that set up for you and him and it will help him build some strength back while being supervised by trained resp therapists and physical therapists and such - in the even that he has a problem.

Best of Luck to you.

Love Lindsey
 
C

coltsfan715

New member
I would definitely approach the topic of transplant with your husband and his doctor if it is something that he is interested in pursuing. If for no other reason than to gather information at this time. I was never approached with the talk of transplant - I MYSELF I had to bring it up to my doctors. I asked them about it when my lung function FEV1 was at roughly 29-30%. I was told at that time that I should start an evaluation if I was interested. I was listed at 25% FEV1 and transplanted when I was at about 22-23% (after 2.5 weeks of IVs) 18% when sick.

As mentioned above it is hard once your lung function gets so low to improve large amounts. It is possible to get to a functional point. I know of a woman that went for an evaluation and was listed and began the pulmonary rehab program at our clinic and is now still listed but on the high end of lung function (in regards to transplant). She went from barely being able to walk for a minute straight (and that may even have been too much) to now being able to jog for 15 minutes on a treadmill. I am not sure what her lung function was or is, but I know she was able to improve somewhat - but again she is still considered listable in regards to needing a transplant.

I would at the very least suggest pulmonary rehab with your doctor and see what they can help you with. They SHOULD NOT have a problem getting that set up for you and him and it will help him build some strength back while being supervised by trained resp therapists and physical therapists and such - in the even that he has a problem.

Best of Luck to you.

Love Lindsey
 
C

coltsfan715

New member
I would definitely approach the topic of transplant with your husband and his doctor if it is something that he is interested in pursuing. If for no other reason than to gather information at this time. I was never approached with the talk of transplant - I MYSELF I had to bring it up to my doctors. I asked them about it when my lung function FEV1 was at roughly 29-30%. I was told at that time that I should start an evaluation if I was interested. I was listed at 25% FEV1 and transplanted when I was at about 22-23% (after 2.5 weeks of IVs) 18% when sick.

As mentioned above it is hard once your lung function gets so low to improve large amounts. It is possible to get to a functional point. I know of a woman that went for an evaluation and was listed and began the pulmonary rehab program at our clinic and is now still listed but on the high end of lung function (in regards to transplant). She went from barely being able to walk for a minute straight (and that may even have been too much) to now being able to jog for 15 minutes on a treadmill. I am not sure what her lung function was or is, but I know she was able to improve somewhat - but again she is still considered listable in regards to needing a transplant.

I would at the very least suggest pulmonary rehab with your doctor and see what they can help you with. They SHOULD NOT have a problem getting that set up for you and him and it will help him build some strength back while being supervised by trained resp therapists and physical therapists and such - in the even that he has a problem.

Best of Luck to you.

Love Lindsey
 
C

coltsfan715

New member
I would definitely approach the topic of transplant with your husband and his doctor if it is something that he is interested in pursuing. If for no other reason than to gather information at this time. I was never approached with the talk of transplant - I MYSELF I had to bring it up to my doctors. I asked them about it when my lung function FEV1 was at roughly 29-30%. I was told at that time that I should start an evaluation if I was interested. I was listed at 25% FEV1 and transplanted when I was at about 22-23% (after 2.5 weeks of IVs) 18% when sick.

As mentioned above it is hard once your lung function gets so low to improve large amounts. It is possible to get to a functional point. I know of a woman that went for an evaluation and was listed and began the pulmonary rehab program at our clinic and is now still listed but on the high end of lung function (in regards to transplant). She went from barely being able to walk for a minute straight (and that may even have been too much) to now being able to jog for 15 minutes on a treadmill. I am not sure what her lung function was or is, but I know she was able to improve somewhat - but again she is still considered listable in regards to needing a transplant.

I would at the very least suggest pulmonary rehab with your doctor and see what they can help you with. They SHOULD NOT have a problem getting that set up for you and him and it will help him build some strength back while being supervised by trained resp therapists and physical therapists and such - in the even that he has a problem.

Best of Luck to you.

Love Lindsey
 
C

coltsfan715

New member
I would definitely approach the topic of transplant with your husband and his doctor if it is something that he is interested in pursuing. If for no other reason than to gather information at this time. I was never approached with the talk of transplant - I MYSELF I had to bring it up to my doctors. I asked them about it when my lung function FEV1 was at roughly 29-30%. I was told at that time that I should start an evaluation if I was interested. I was listed at 25% FEV1 and transplanted when I was at about 22-23% (after 2.5 weeks of IVs) 18% when sick.

As mentioned above it is hard once your lung function gets so low to improve large amounts. It is possible to get to a functional point. I know of a woman that went for an evaluation and was listed and began the pulmonary rehab program at our clinic and is now still listed but on the high end of lung function (in regards to transplant). She went from barely being able to walk for a minute straight (and that may even have been too much) to now being able to jog for 15 minutes on a treadmill. I am not sure what her lung function was or is, but I know she was able to improve somewhat - but again she is still considered listable in regards to needing a transplant.

I would at the very least suggest pulmonary rehab with your doctor and see what they can help you with. They SHOULD NOT have a problem getting that set up for you and him and it will help him build some strength back while being supervised by trained resp therapists and physical therapists and such - in the even that he has a problem.

Best of Luck to you.

Love Lindsey
 
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