Barriers to your care?

[Incomudrox]

If you have a few minutes to answer this servey that would be fantastic. If you have any suggestions on how things can be improved in care or made easier possibly by drug manufactures what would they be?
<strong>What is your biggest barrier (of these given choices.)</strong>
<strong>What is your daily routine like? Tell everyone!</strong>
<strong></strong>
<strong></strong>

 

[Incomudrox]

If you have a few minutes to answer this servey that would be fantastic. If you have any suggestions on how things can be improved in care or made easier possibly by drug manufactures what would they be?
<strong>What is your biggest barrier (of these given choices.)</strong>
<strong>What is your daily routine like? Tell everyone!</strong>
<strong></strong>
<strong></strong>

 

[Havoc]

I don't tolerate many of the medications used for maintenance, which is a problem for my compliance. I'm sure my docs would prefer me to do something, especially when sick, but I just can't tolerate HTS or pulmozyme. Tobi I can tolerate better, but I've never seen a huge benefit from it to justify the hassle.

ETA: For the moment, you can't "quick reply" to this thread. You have to use the reply function and open a new window.

 

[Havoc]

I don't tolerate many of the medications used for maintenance, which is a problem for my compliance. I'm sure my docs would prefer me to do something, especially when sick, but I just can't tolerate HTS or pulmozyme. Tobi I can tolerate better, but I've never seen a huge benefit from it to justify the hassle.

ETA: For the moment, you can't "quick reply" to this thread. You have to use the reply function and open a new window.

 

[Anomie]

We don't feel like Tobi is doing much for our daughter either, which is why we're considering switching her to Cayston.

 

[Anomie]

We don't feel like Tobi is doing much for our daughter either, which is why we're considering switching her to Cayston.

 

[mamerth]

I am allergic to Pulmozyme so that is out for me. I tried Tobi years ago. I barely tolerate HTS... I do it off and on. I have never been offered Cayston. I respond best to oral and IV drugs.

I do all my treatment (vesting) and I am trying to start exercising.

 

[mamerth]

I am allergic to Pulmozyme so that is out for me. I tried Tobi years ago. I barely tolerate HTS... I do it off and on. I have never been offered Cayston. I respond best to oral and IV drugs.

I do all my treatment (vesting) and I am trying to start exercising.

 

[JustDucky]

Some meds that my doctor wants me on, I am not covered for or I would have to pay a huge amount for them. Cayston is one such med. I have been on Colistin for a few years now, does well but my doc wants to alternate that with Cayston to get good PA coverage and I haven't been able to. Enzymes are really expensive too, thankfully I don't need too many and my doc is lucky enough to find samples of them to give me so that I don't have to pay for them. So I guess for me, cost is a huge factor as I am on a very strict budget. I get sick and need more than the usual meds, then it can be costly to me.

Jenn 40 w/CF

 

[JustDucky]

Some meds that my doctor wants me on, I am not covered for or I would have to pay a huge amount for them. Cayston is one such med. I have been on Colistin for a few years now, does well but my doc wants to alternate that with Cayston to get good PA coverage and I haven't been able to. Enzymes are really expensive too, thankfully I don't need too many and my doc is lucky enough to find samples of them to give me so that I don't have to pay for them. So I guess for me, cost is a huge factor as I am on a very strict budget. I get sick and need more than the usual meds, then it can be costly to me.

Jenn 40 w/CF

 

[MCGrad2006]

My biggest barrier is not finding the time to exercise. I work full time at a small boutique, so my hours vary greatly from day to day and week to week. Ideally I would like to find a consistent time when I can work out, but that doesn't happen, so then I don't work out. If I am in early, I cant bring myself to wake up 3 hours early to do treatments, work out, shower, etc. 2 hours is already pushing it, And then when I get home, I cook and clean up, so I find I am very tired. On days I go in late, I can usually squeeze something in if I try hard enough (depends on how many chores need to be done). But like I said, its not consistent. If I had a better schedule, where I could work out at the same time each day, I would be more apt to do it.

 

[MCGrad2006]

My biggest barrier is not finding the time to exercise. I work full time at a small boutique, so my hours vary greatly from day to day and week to week. Ideally I would like to find a consistent time when I can work out, but that doesn't happen, so then I don't work out. If I am in early, I cant bring myself to wake up 3 hours early to do treatments, work out, shower, etc. 2 hours is already pushing it, And then when I get home, I cook and clean up, so I find I am very tired. On days I go in late, I can usually squeeze something in if I try hard enough (depends on how many chores need to be done). But like I said, its not consistent. If I had a better schedule, where I could work out at the same time each day, I would be more apt to do it.

 

[Ratatosk]

DS' issues have more to do with not having time to do other things. Because we stress the importance of treatments and medications, we tend to not have as much time for other activities. He is enrolled in gymnastics and has taken swimming, tennis and skating lessons in the past; however, during the school year it's vest/nebs, dinner, homework and some time to play.

Unfortunately the poor kid is 8 years old and unlike other children his age, he has yet to learn how to ride a bicycle without training wheels. This past weekend we spent time playing outside and worked with him on his bike. And despite swimming lessons during the summer, he still hasn't learned how to swim and again with homework, meals and treatments, there just isn't time during the school year. <img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[Ratatosk]

DS' issues have more to do with not having time to do other things. Because we stress the importance of treatments and medications, we tend to not have as much time for other activities. He is enrolled in gymnastics and has taken swimming, tennis and skating lessons in the past; however, during the school year it's vest/nebs, dinner, homework and some time to play.

Unfortunately the poor kid is 8 years old and unlike other children his age, he has yet to learn how to ride a bicycle without training wheels. This past weekend we spent time playing outside and worked with him on his bike. And despite swimming lessons during the summer, he still hasn't learned how to swim and again with homework, meals and treatments, there just isn't time during the school year. <img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[Jennyvb17]

I find it is not only "not having enough time" but not having the energy in the time that I have. If I could work less I could get more rest, do better treatments day and night. Now I skip in the evenings all together, and go to bed at 8pm exhausted.

 

[Jennyvb17]

I find it is not only "not having enough time" but not having the energy in the time that I have. If I could work less I could get more rest, do better treatments day and night. Now I skip in the evenings all together, and go to bed at 8pm exhausted.