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
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