Feelings on the vest/time/care

[AnnaH]

Yes. I mean, I'm very greatful for the meds, but it's constant. Over 3 hours, Every. Single. Day. I find ways to make it work, but it's a pain in the ass. Sometimes you just want a day off, and you can't do that. The fact that i will have to do this every day until I get a transplant or die is kinda overwhelming sometimes.

I feel bad complaining, because the treatments drasticly improve our lifespans, and as a result of these meds, I fully expect to live into adulthood. If I had been born earlier i wouldn't make that assumtion.. It's worth it, but that dosn't make it any less inconvient.

 

[AnnaH]

Yes. I mean, I'm very greatful for the meds, but it's constant. Over 3 hours, Every. Single. Day. I find ways to make it work, but it's a pain in the ass. Sometimes you just want a day off, and you can't do that. The fact that i will have to do this every day until I get a transplant or die is kinda overwhelming sometimes.

I feel bad complaining, because the treatments drasticly improve our lifespans, and as a result of these meds, I fully expect to live into adulthood. If I had been born earlier i wouldn't make that assumtion.. It's worth it, but that dosn't make it any less inconvient.

 

[AnnaH]

Yes. I mean, I'm very greatful for the meds, but it's constant. Over 3 hours, Every. Single. Day. I find ways to make it work, but it's a pain in the ass. Sometimes you just want a day off, and you can't do that. The fact that i will have to do this every day until I get a transplant or die is kinda overwhelming sometimes.

I feel bad complaining, because the treatments drasticly improve our lifespans, and as a result of these meds, I fully expect to live into adulthood. If I had been born earlier i wouldn't make that assumtion.. It's worth it, but that dosn't make it any less inconvient.

 

[AnnaH]

Yes. I mean, I'm very greatful for the meds, but it's constant. Over 3 hours, Every. Single. Day. I find ways to make it work, but it's a pain in the ass. Sometimes you just want a day off, and you can't do that. The fact that i will have to do this every day until I get a transplant or die is kinda overwhelming sometimes.

I feel bad complaining, because the treatments drasticly improve our lifespans, and as a result of these meds, I fully expect to live into adulthood. If I had been born earlier i wouldn't make that assumtion.. It's worth it, but that dosn't make it any less inconvient.

 

[AnnaH]

Yes. I mean, I'm very greatful for the meds, but it's constant. Over 3 hours, Every. Single. Day. I find ways to make it work, but it's a pain in the ass. Sometimes you just want a day off, and you can't do that. The fact that i will have to do this every day until I get a transplant or die is kinda overwhelming sometimes.

I feel bad complaining, because the treatments drasticly improve our lifespans, and as a result of these meds, I fully expect to live into adulthood. If I had been born earlier i wouldn't make that assumtion.. It's worth it, but that dosn't make it any less inconvient.

 

[jfarel]

I definitely know what you mean. I too am doing 5-6 hours of vest and treatmetns per day. I have no clue how you work!!!! What time do you get up in the morning. I don't see how you have time to do all that and still sleep and manage to cook meals.

I was doing all that just like you, but I wasn't working 40 plus hours, I worked 30 tops. Now I'm paying for it, because it was just too much for me. I'm taking a couple months off and getting a g-tube. W/ Low pft's and very low weight I just don't have time w/ work and everything else to eat the way I would have to in order to gain weight and get my health improved.

 

[jfarel]

I definitely know what you mean. I too am doing 5-6 hours of vest and treatmetns per day. I have no clue how you work!!!! What time do you get up in the morning. I don't see how you have time to do all that and still sleep and manage to cook meals.

I was doing all that just like you, but I wasn't working 40 plus hours, I worked 30 tops. Now I'm paying for it, because it was just too much for me. I'm taking a couple months off and getting a g-tube. W/ Low pft's and very low weight I just don't have time w/ work and everything else to eat the way I would have to in order to gain weight and get my health improved.

 

[jfarel]

I definitely know what you mean. I too am doing 5-6 hours of vest and treatmetns per day. I have no clue how you work!!!! What time do you get up in the morning. I don't see how you have time to do all that and still sleep and manage to cook meals.

I was doing all that just like you, but I wasn't working 40 plus hours, I worked 30 tops. Now I'm paying for it, because it was just too much for me. I'm taking a couple months off and getting a g-tube. W/ Low pft's and very low weight I just don't have time w/ work and everything else to eat the way I would have to in order to gain weight and get my health improved.

 

[jfarel]

I definitely know what you mean. I too am doing 5-6 hours of vest and treatmetns per day. I have no clue how you work!!!! What time do you get up in the morning. I don't see how you have time to do all that and still sleep and manage to cook meals.

I was doing all that just like you, but I wasn't working 40 plus hours, I worked 30 tops. Now I'm paying for it, because it was just too much for me. I'm taking a couple months off and getting a g-tube. W/ Low pft's and very low weight I just don't have time w/ work and everything else to eat the way I would have to in order to gain weight and get my health improved.

 

[jfarel]

I definitely know what you mean. I too am doing 5-6 hours of vest and treatmetns per day. I have no clue how you work!!!! What time do you get up in the morning. I don't see how you have time to do all that and still sleep and manage to cook meals.

I was doing all that just like you, but I wasn't working 40 plus hours, I worked 30 tops. Now I'm paying for it, because it was just too much for me. I'm taking a couple months off and getting a g-tube. W/ Low pft's and very low weight I just don't have time w/ work and everything else to eat the way I would have to in order to gain weight and get my health improved.

 

[wanderlost]

I am only doing 40 minutes of care a day - twenty minutes of vest time 2x a day and whatever nebs need to be done get done in that time (right now only HTS). and even that seems like too much. Last night I had to do the Vest with a baby sitting on my lap - bah. I am not working right now and it is hard to imagine working treatments in with work too (I didn't do any treatments when i was working before, so it was a moot point then). And I am not really doing much in the way of exercise right now - though I would like to, and so getting that time in too seems mind boggling. It is the reason I am hesitant to look into pulmozyme or nebbed albuterol or anything - I just don't feel I have the time. I'm not sure where to draw the line between necessary Cf care and overkill. I don't think I will ever stop the vest or HTS, I have found them to be too valuable - so we're only looking at adding in more rather than taking away. oy.

 

[wanderlost]

I am only doing 40 minutes of care a day - twenty minutes of vest time 2x a day and whatever nebs need to be done get done in that time (right now only HTS). and even that seems like too much. Last night I had to do the Vest with a baby sitting on my lap - bah. I am not working right now and it is hard to imagine working treatments in with work too (I didn't do any treatments when i was working before, so it was a moot point then). And I am not really doing much in the way of exercise right now - though I would like to, and so getting that time in too seems mind boggling. It is the reason I am hesitant to look into pulmozyme or nebbed albuterol or anything - I just don't feel I have the time. I'm not sure where to draw the line between necessary Cf care and overkill. I don't think I will ever stop the vest or HTS, I have found them to be too valuable - so we're only looking at adding in more rather than taking away. oy.

 

[wanderlost]

I am only doing 40 minutes of care a day - twenty minutes of vest time 2x a day and whatever nebs need to be done get done in that time (right now only HTS). and even that seems like too much. Last night I had to do the Vest with a baby sitting on my lap - bah. I am not working right now and it is hard to imagine working treatments in with work too (I didn't do any treatments when i was working before, so it was a moot point then). And I am not really doing much in the way of exercise right now - though I would like to, and so getting that time in too seems mind boggling. It is the reason I am hesitant to look into pulmozyme or nebbed albuterol or anything - I just don't feel I have the time. I'm not sure where to draw the line between necessary Cf care and overkill. I don't think I will ever stop the vest or HTS, I have found them to be too valuable - so we're only looking at adding in more rather than taking away. oy.

 

[wanderlost]

I am only doing 40 minutes of care a day - twenty minutes of vest time 2x a day and whatever nebs need to be done get done in that time (right now only HTS). and even that seems like too much. Last night I had to do the Vest with a baby sitting on my lap - bah. I am not working right now and it is hard to imagine working treatments in with work too (I didn't do any treatments when i was working before, so it was a moot point then). And I am not really doing much in the way of exercise right now - though I would like to, and so getting that time in too seems mind boggling. It is the reason I am hesitant to look into pulmozyme or nebbed albuterol or anything - I just don't feel I have the time. I'm not sure where to draw the line between necessary Cf care and overkill. I don't think I will ever stop the vest or HTS, I have found them to be too valuable - so we're only looking at adding in more rather than taking away. oy.

 

[wanderlost]

I am only doing 40 minutes of care a day - twenty minutes of vest time 2x a day and whatever nebs need to be done get done in that time (right now only HTS). and even that seems like too much. Last night I had to do the Vest with a baby sitting on my lap - bah. I am not working right now and it is hard to imagine working treatments in with work too (I didn't do any treatments when i was working before, so it was a moot point then). And I am not really doing much in the way of exercise right now - though I would like to, and so getting that time in too seems mind boggling. It is the reason I am hesitant to look into pulmozyme or nebbed albuterol or anything - I just don't feel I have the time. I'm not sure where to draw the line between necessary Cf care and overkill. I don't think I will ever stop the vest or HTS, I have found them to be too valuable - so we're only looking at adding in more rather than taking away. oy.