Preparing for transplant - importance of CPT and airway clearance

[nmr8177]

Kevin,

I am so glad to hear that you have had a transplant and are doing well. I know it is probably different for everyone, but I am wondering what your treatment regimen was when you were at about the same stage as my son before you had your transplant. For example, how many times a day did you do breathing treatments, with Xopenex, Saline, etc. Also, did you ever feel that using the vest or doing CPT's did not help you that much, or did it ever make you so out of breath that you couldn't tolerate it?

I think I am just trying to understand why my son would not understand that it is more important now than ever that he try to clear out any junk that is down there. He has gotten very weak over the past month or so and is less active since he found out he needed to be on oxygen all the time. It has been really hard for him to accept but he has, because he feels so bad when he doesn't use it.

He just got off home IV's last week but they did not help much, so he is probably going to have to go to the hospital later this week and start on the stronger drugs - Tobra and Ceftazadime. He was on those in January when he was hospitalized last and they worked well for him. He can't be on those at home until he has been monitored in the hospital first.

I wish he would participate in these forums because he could see that he is not alone and there are lots of other people who have gone through, or are going through, what he is.

Thank you so much for you help!

Naomi

 

[nmr8177]

Kevin,

I am so glad to hear that you have had a transplant and are doing well. I know it is probably different for everyone, but I am wondering what your treatment regimen was when you were at about the same stage as my son before you had your transplant. For example, how many times a day did you do breathing treatments, with Xopenex, Saline, etc. Also, did you ever feel that using the vest or doing CPT's did not help you that much, or did it ever make you so out of breath that you couldn't tolerate it?

I think I am just trying to understand why my son would not understand that it is more important now than ever that he try to clear out any junk that is down there. He has gotten very weak over the past month or so and is less active since he found out he needed to be on oxygen all the time. It has been really hard for him to accept but he has, because he feels so bad when he doesn't use it.

He just got off home IV's last week but they did not help much, so he is probably going to have to go to the hospital later this week and start on the stronger drugs - Tobra and Ceftazadime. He was on those in January when he was hospitalized last and they worked well for him. He can't be on those at home until he has been monitored in the hospital first.

I wish he would participate in these forums because he could see that he is not alone and there are lots of other people who have gone through, or are going through, what he is.

Thank you so much for you help!

Naomi

 

[nmr8177]

Kevin,

I am so glad to hear that you have had a transplant and are doing well. I know it is probably different for everyone, but I am wondering what your treatment regimen was when you were at about the same stage as my son before you had your transplant. For example, how many times a day did you do breathing treatments, with Xopenex, Saline, etc. Also, did you ever feel that using the vest or doing CPT's did not help you that much, or did it ever make you so out of breath that you couldn't tolerate it?

I think I am just trying to understand why my son would not understand that it is more important now than ever that he try to clear out any junk that is down there. He has gotten very weak over the past month or so and is less active since he found out he needed to be on oxygen all the time. It has been really hard for him to accept but he has, because he feels so bad when he doesn't use it.

He just got off home IV's last week but they did not help much, so he is probably going to have to go to the hospital later this week and start on the stronger drugs - Tobra and Ceftazadime. He was on those in January when he was hospitalized last and they worked well for him. He can't be on those at home until he has been monitored in the hospital first.

I wish he would participate in these forums because he could see that he is not alone and there are lots of other people who have gone through, or are going through, what he is.

Thank you so much for you help!

Naomi

 

[nmr8177]

Kevin,

I am so glad to hear that you have had a transplant and are doing well. I know it is probably different for everyone, but I am wondering what your treatment regimen was when you were at about the same stage as my son before you had your transplant. For example, how many times a day did you do breathing treatments, with Xopenex, Saline, etc. Also, did you ever feel that using the vest or doing CPT's did not help you that much, or did it ever make you so out of breath that you couldn't tolerate it?

I think I am just trying to understand why my son would not understand that it is more important now than ever that he try to clear out any junk that is down there. He has gotten very weak over the past month or so and is less active since he found out he needed to be on oxygen all the time. It has been really hard for him to accept but he has, because he feels so bad when he doesn't use it.

He just got off home IV's last week but they did not help much, so he is probably going to have to go to the hospital later this week and start on the stronger drugs - Tobra and Ceftazadime. He was on those in January when he was hospitalized last and they worked well for him. He can't be on those at home until he has been monitored in the hospital first.

I wish he would participate in these forums because he could see that he is not alone and there are lots of other people who have gone through, or are going through, what he is.

Thank you so much for you help!

Naomi

 

[nmr8177]

Kevin,
<br />
<br />I am so glad to hear that you have had a transplant and are doing well. I know it is probably different for everyone, but I am wondering what your treatment regimen was when you were at about the same stage as my son before you had your transplant. For example, how many times a day did you do breathing treatments, with Xopenex, Saline, etc. Also, did you ever feel that using the vest or doing CPT's did not help you that much, or did it ever make you so out of breath that you couldn't tolerate it?
<br />
<br />I think I am just trying to understand why my son would not understand that it is more important now than ever that he try to clear out any junk that is down there. He has gotten very weak over the past month or so and is less active since he found out he needed to be on oxygen all the time. It has been really hard for him to accept but he has, because he feels so bad when he doesn't use it.
<br />
<br />He just got off home IV's last week but they did not help much, so he is probably going to have to go to the hospital later this week and start on the stronger drugs - Tobra and Ceftazadime. He was on those in January when he was hospitalized last and they worked well for him. He can't be on those at home until he has been monitored in the hospital first.
<br />
<br />I wish he would participate in these forums because he could see that he is not alone and there are lots of other people who have gone through, or are going through, what he is.
<br />
<br />Thank you so much for you help!
<br />
<br />Naomi

 

[Buxxfan]

Hello again Naiomi,
I did the Vest and all my breathing treatments twice a day. When I did the treatments with my vest on it did really helped me cough up some junk... I too was not happy about wearing O2 all day but did help. It gave me more energy especially in rehab. Without the oxygen I couldn't have done anything. Even walking to the bathroom wore me out... One of the reasons you really have to stay as healthy as you can is because you don't know how long you are going to be on the list. It could be one week to one year or longer... I do hope your son does try to keep as healthy as possible. Waiting on the tx list is probably the hardest part of the whole transplant process but when you get the call and you start breathing normal it was worth it.

Take Care Naomi!

 

[Buxxfan]

Hello again Naiomi,
I did the Vest and all my breathing treatments twice a day. When I did the treatments with my vest on it did really helped me cough up some junk... I too was not happy about wearing O2 all day but did help. It gave me more energy especially in rehab. Without the oxygen I couldn't have done anything. Even walking to the bathroom wore me out... One of the reasons you really have to stay as healthy as you can is because you don't know how long you are going to be on the list. It could be one week to one year or longer... I do hope your son does try to keep as healthy as possible. Waiting on the tx list is probably the hardest part of the whole transplant process but when you get the call and you start breathing normal it was worth it.

Take Care Naomi!

 

[Buxxfan]

Hello again Naiomi,
I did the Vest and all my breathing treatments twice a day. When I did the treatments with my vest on it did really helped me cough up some junk... I too was not happy about wearing O2 all day but did help. It gave me more energy especially in rehab. Without the oxygen I couldn't have done anything. Even walking to the bathroom wore me out... One of the reasons you really have to stay as healthy as you can is because you don't know how long you are going to be on the list. It could be one week to one year or longer... I do hope your son does try to keep as healthy as possible. Waiting on the tx list is probably the hardest part of the whole transplant process but when you get the call and you start breathing normal it was worth it.

Take Care Naomi!

 

[Buxxfan]

Hello again Naiomi,
I did the Vest and all my breathing treatments twice a day. When I did the treatments with my vest on it did really helped me cough up some junk... I too was not happy about wearing O2 all day but did help. It gave me more energy especially in rehab. Without the oxygen I couldn't have done anything. Even walking to the bathroom wore me out... One of the reasons you really have to stay as healthy as you can is because you don't know how long you are going to be on the list. It could be one week to one year or longer... I do hope your son does try to keep as healthy as possible. Waiting on the tx list is probably the hardest part of the whole transplant process but when you get the call and you start breathing normal it was worth it.

Take Care Naomi!

 

[Buxxfan]

Hello again Naiomi,
<br />I did the Vest and all my breathing treatments twice a day. When I did the treatments with my vest on it did really helped me cough up some junk... I too was not happy about wearing O2 all day but did help. It gave me more energy especially in rehab. Without the oxygen I couldn't have done anything. Even walking to the bathroom wore me out... One of the reasons you really have to stay as healthy as you can is because you don't know how long you are going to be on the list. It could be one week to one year or longer... I do hope your son does try to keep as healthy as possible. Waiting on the tx list is probably the hardest part of the whole transplant process but when you get the call and you start breathing normal it was worth it.
<br />
<br />Take Care Naomi!