Treatment Routine Problems - Finding Time!

[HollyCatheryn]

I just wondered if anyone had any good suggestions or could offer their approach to making sure you actually do what needs to be done to stay healthy, i.e. daily treatments.I've just been upped to 3 tx a day from 1 and added TOBI and Pulmozyme. Now I'm supposed to do Albuterol, TOBI, Pulmozyme with 30 minutes of Vest every AM, Albuterol with 30 minute of Vest at midday and Albuterol, TOBI and 30 minutes of Vest every PM! This is a huge challenge for me. Perhaps I sound like a wimp to the rest of you.  I'm a mom and it just seems too hard to find the time. I've gotten the AM one just fine since I've been doing that one all along. I just added the extra aerosols - no big deal. But, getting the PM one, it seems as if I have to wait until everyone is in bed before I start and then it gets so late! I've been doing it, but the timing! Something has to give! And the midday one has yet to materialize. It's like - oops! I forgot to mention that I'm supposed to exercise every day too - I get up and feed us, then do tx, then we exercise (take long, brisk walk or whatever), then we get home and eat lunch, then it's naptime for Murren (daughter) at which time I usually nap too, then we get up and do household stuff, then Daddy comes home, we have dinner and family time (hubby doesn't like me to do tx during our time cause I can't talk or hear and he can't concentrate), then they get ready for bed, then I'm up all alone doing tx late at night again. Maybe there's some time during the day that I'm wasting or using inefficiently. I don't know. Anybody have ideas that work for them? Any one with a family have suggestions for how to get tx in with a small child around and a hubby and a house to care for?I want to take care of myself, but I'm having a tough time figuring out how to make it work. If nothing else, thanks for letting me vent.<img src="i/expressions/face-icon-small-confused.gif" border="0">

 

[HollyCatheryn]

I just wondered if anyone had any good suggestions or could offer their approach to making sure you actually do what needs to be done to stay healthy, i.e. daily treatments.I've just been upped to 3 tx a day from 1 and added TOBI and Pulmozyme. Now I'm supposed to do Albuterol, TOBI, Pulmozyme with 30 minutes of Vest every AM, Albuterol with 30 minute of Vest at midday and Albuterol, TOBI and 30 minutes of Vest every PM! This is a huge challenge for me. Perhaps I sound like a wimp to the rest of you.  I'm a mom and it just seems too hard to find the time. I've gotten the AM one just fine since I've been doing that one all along. I just added the extra aerosols - no big deal. But, getting the PM one, it seems as if I have to wait until everyone is in bed before I start and then it gets so late! I've been doing it, but the timing! Something has to give! And the midday one has yet to materialize. It's like - oops! I forgot to mention that I'm supposed to exercise every day too - I get up and feed us, then do tx, then we exercise (take long, brisk walk or whatever), then we get home and eat lunch, then it's naptime for Murren (daughter) at which time I usually nap too, then we get up and do household stuff, then Daddy comes home, we have dinner and family time (hubby doesn't like me to do tx during our time cause I can't talk or hear and he can't concentrate), then they get ready for bed, then I'm up all alone doing tx late at night again. Maybe there's some time during the day that I'm wasting or using inefficiently. I don't know. Anybody have ideas that work for them? Any one with a family have suggestions for how to get tx in with a small child around and a hubby and a house to care for?I want to take care of myself, but I'm having a tough time figuring out how to make it work. If nothing else, thanks for letting me vent.<img src="i/expressions/face-icon-small-confused.gif" border="0">

 

[anonymous]

Well the only thing I can suggest is to use a inhaler for the albuterol instead of doing a treatment. That is how I get away with doing 2 TOBI a day both with vest for 20 mins and 2 pulmozyme a day. I do 2 puffs of albuterol before each one

 

[anonymous]

Well the only thing I can suggest is to use a inhaler for the albuterol instead of doing a treatment. That is how I get away with doing 2 TOBI a day both with vest for 20 mins and 2 pulmozyme a day. I do 2 puffs of albuterol before each one

 

[anonymous]

Hi Holly Catherine,
I don't think you sound like a wimp at all, that is a lot of treatments! And when you are a mom, it is doubly hard I think. I use the vest twice a day for 30 minutes each, and like you am always good about the morning treatment. In the evening, however, I am tired and my family is home and there is a lot to do, in addition to my wanting to spend time with my husband and 14 year old son. After dinner, my husband now very thoughtfully does the dishes, and tells me to go do my vest. Usually I am done about the same time he is, so we don't miss out on too much time with each other. This is something he just started doing recently, and it is a tremendous help! It is much harder to skip a treatment if your family 'reminds' (or nags) you to do it! My son also is good about reminding me. As for the noon time one, that would be a huge challenge, especially where you have a young child at home with you. Could you look at a book with your daughter while you are doing your treatment? Maybe that sounds lame, but I found that once I started a routine with my son (when he was younger anyway!) it helped and he got used to it and my treatments. I hope this helps, I can truly apprecaite your challenges. Good luck and take care. Kim

 

[anonymous]

Hi Holly Catherine,
I don't think you sound like a wimp at all, that is a lot of treatments! And when you are a mom, it is doubly hard I think. I use the vest twice a day for 30 minutes each, and like you am always good about the morning treatment. In the evening, however, I am tired and my family is home and there is a lot to do, in addition to my wanting to spend time with my husband and 14 year old son. After dinner, my husband now very thoughtfully does the dishes, and tells me to go do my vest. Usually I am done about the same time he is, so we don't miss out on too much time with each other. This is something he just started doing recently, and it is a tremendous help! It is much harder to skip a treatment if your family 'reminds' (or nags) you to do it! My son also is good about reminding me. As for the noon time one, that would be a huge challenge, especially where you have a young child at home with you. Could you look at a book with your daughter while you are doing your treatment? Maybe that sounds lame, but I found that once I started a routine with my son (when he was younger anyway!) it helped and he got used to it and my treatments. I hope this helps, I can truly apprecaite your challenges. Good luck and take care. Kim

 

[kybert]

youre not a wimp. if i had to do that many treatments id probably stop doing them all together. im one of those people who stop everything when unrealistic expectations are placed upon me. i second the inhalers. they arent as good as nebs but if they do the job then theres nothing wrong with it. also, if pulmozyme isnt necessary dont take it. i use to take it but there were times when id run out for like a month. i noticed no difference. to be sure my doc said to go back on it and stop it again and once again no difference. so we decided an extra neb wasnt really worth the trouble. can these vests be moved around? [eg has long enough tubing, electrical cords etc, whatever is on those things!] you could probably kill 2 birds with 1 stone and ride an exercise bike with the vest on? i dunno how the vests work so ignore that last one if its plain obvious you cant move with it on lol.

btw, did i end up telling everyone why you cant get the vest in australia? if not, apparently the sale of it is illegal here. yes, something that can save lives is illegal. if you were to bring one over from the us for personal use then thats ok, but as for the company selling to australians thats a no no. stupid aint it? also, if we were to privately ship them here wed have no support or instructions either. <img src="i/expressions/face-icon-small-mad.gif" border="0">

 

[kybert]

youre not a wimp. if i had to do that many treatments id probably stop doing them all together. im one of those people who stop everything when unrealistic expectations are placed upon me. i second the inhalers. they arent as good as nebs but if they do the job then theres nothing wrong with it. also, if pulmozyme isnt necessary dont take it. i use to take it but there were times when id run out for like a month. i noticed no difference. to be sure my doc said to go back on it and stop it again and once again no difference. so we decided an extra neb wasnt really worth the trouble. can these vests be moved around? [eg has long enough tubing, electrical cords etc, whatever is on those things!] you could probably kill 2 birds with 1 stone and ride an exercise bike with the vest on? i dunno how the vests work so ignore that last one if its plain obvious you cant move with it on lol.

btw, did i end up telling everyone why you cant get the vest in australia? if not, apparently the sale of it is illegal here. yes, something that can save lives is illegal. if you were to bring one over from the us for personal use then thats ok, but as for the company selling to australians thats a no no. stupid aint it? also, if we were to privately ship them here wed have no support or instructions either. <img src="i/expressions/face-icon-small-mad.gif" border="0">

 

[anonymous]

HollyCatheryn,
My thought is that you probably should fit at least one of these treatments in while your hubby watches the little one in the evening (in another room, so as not to distract him). Wouldn't that just be 20/30 minutes? Sometimes, I, too do my treatments after everyone's asleep, but it sure makes for a late night and for us CFers, our rest is every bit as important as all the other stuff we have to do. That's just my suggestion. I know my husband is fine with that. That gives he & my daughter some time to bond too.<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

HollyCatheryn,
My thought is that you probably should fit at least one of these treatments in while your hubby watches the little one in the evening (in another room, so as not to distract him). Wouldn't that just be 20/30 minutes? Sometimes, I, too do my treatments after everyone's asleep, but it sure makes for a late night and for us CFers, our rest is every bit as important as all the other stuff we have to do. That's just my suggestion. I know my husband is fine with that. That gives he & my daughter some time to bond too.<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[HollyCatheryn]

I know what you mean Kylie. I used to be just like that. When the docs would tell me to do something that I didn't think made sense or things that weren't feasible, I'd just go home and do what I felt like doing. Boy, I hadn't really given much thought to how much my attitude and perspective has changed in the last 7-8 years! HA!Inhalers are a good idea, I'll need to check on that. As for portability...the Vest has to be one of the least portable things they could possibly prescribe! I've asked my Dad when he comes up if he would take measurements and build a cabinet for my Vest and compressor with heavy-duty castors on the bottom so I can roll around to other rooms of the house. It's just to heavy and awkward to drag or carry. I hope he can make one that's out of light materials since the Vest is already so heavy. I also want doors and drawers so I can keep everything contained in one spot and so I can close it all up neatly. Right now, I've got a big basket, my compressor and vest stuff all just stacked in a corner of the living room when it's not in use. When it is, I'm spread out all over it seems. OH! Any suggestions for hubby? He is having a really hard time adjusting to this new routine. I think he really resents it as a reminder of CF in our lives. Like I said at first, this is the first time I've had to do more than one tx a day (aside from hospital stays) and always before, he's been gone to work when I do that one, so all he really sees of CF in our lives regularly is my taking pills. We used to watch a little TV in the evenings after dinner, and I tried doing my vest then, but nobody could hear anything and he got really frustrated. I hope you all don't get the impression that he's a bad guy. He's not. He's great and totally supportive. I think he's just having as hard a time transitioning to this new phase as I am. But, I got mine all out in one whack at the beginning by being mad and sad that my body has changed. I've had to face my mortality before, but he really hasn't and I think that's why this is so hard. Used to, he could forget for months at a time that I even had CF. Thanks again for letting me vent. Sometimes just getting it out helps. Any suggestions are very welcome.

 

[HollyCatheryn]

I know what you mean Kylie. I used to be just like that. When the docs would tell me to do something that I didn't think made sense or things that weren't feasible, I'd just go home and do what I felt like doing. Boy, I hadn't really given much thought to how much my attitude and perspective has changed in the last 7-8 years! HA!Inhalers are a good idea, I'll need to check on that. As for portability...the Vest has to be one of the least portable things they could possibly prescribe! I've asked my Dad when he comes up if he would take measurements and build a cabinet for my Vest and compressor with heavy-duty castors on the bottom so I can roll around to other rooms of the house. It's just to heavy and awkward to drag or carry. I hope he can make one that's out of light materials since the Vest is already so heavy. I also want doors and drawers so I can keep everything contained in one spot and so I can close it all up neatly. Right now, I've got a big basket, my compressor and vest stuff all just stacked in a corner of the living room when it's not in use. When it is, I'm spread out all over it seems. OH! Any suggestions for hubby? He is having a really hard time adjusting to this new routine. I think he really resents it as a reminder of CF in our lives. Like I said at first, this is the first time I've had to do more than one tx a day (aside from hospital stays) and always before, he's been gone to work when I do that one, so all he really sees of CF in our lives regularly is my taking pills. We used to watch a little TV in the evenings after dinner, and I tried doing my vest then, but nobody could hear anything and he got really frustrated. I hope you all don't get the impression that he's a bad guy. He's not. He's great and totally supportive. I think he's just having as hard a time transitioning to this new phase as I am. But, I got mine all out in one whack at the beginning by being mad and sad that my body has changed. I've had to face my mortality before, but he really hasn't and I think that's why this is so hard. Used to, he could forget for months at a time that I even had CF. Thanks again for letting me vent. Sometimes just getting it out helps. Any suggestions are very welcome.

 

[anonymous]

Hey Holly--
Just a suggestion here...have you ever tried the flutter? It doesn't take nearly as much time as the vest and i feel that It does more good. Basically the flutter forces you to cough so you actually end up getting more stuff up. Well at least that has been my experience with the two. Maybe at night you can do the flutter instead of the vest. that could save you some time and allow you to spend more time with your hubby!

 

[anonymous]

Hey Holly--
Just a suggestion here...have you ever tried the flutter? It doesn't take nearly as much time as the vest and i feel that It does more good. Basically the flutter forces you to cough so you actually end up getting more stuff up. Well at least that has been my experience with the two. Maybe at night you can do the flutter instead of the vest. that could save you some time and allow you to spend more time with your hubby!

 

[ladybug]

Hi, Holly!
I found it really interesting what you said about your husband and that he doesn't see CF as much other than taking some pills and really doesn't seem to want reminders all the time. My hubby is very similar! I'm usually the one doing all the research and remembering to do things like treatments and meds, etc. It seems that he doesn't really care to be a part of the ongoing education and treatment of CF... don't get me wrong, he is an AWESOME husband and the best man in the world, but I too think the CF and mortality and everything of it is just too much for him and he likes to think of me as healthy and "normal" because I look healthy and normal (most of the time). Anyway, I just thought I'd let you know that I know how you feel about that and you're not alone. I try to push facts and info. on my hubby about CF and tell him to research it online, etc. and that seems to just make him feel worse and me feel worse for having to "instruct him" to find out about CF when I feel like he should WANT to know all about it.

So, that said, I will get to your original question. I don't have kids, but I also struggle with finding time to do 2-3 vest treatments a day along with nebs during each one. I usually do the morning one when I get up and an afternoon one only when I feel ill. I also do the evening one after hubby goes to bed. Sometimes, on weekends, that can get to be 1-2 AM before i hook up! I also found putting the vest in another room has been helpful for me (us) because then he can watch his tv or do whatever he wants to do without having to watch me do my treatments (not that he would care about that) and its quieter that way. Then, in our bedroom, I hook up to the vest and cranked MY tv up and do my own thing. I don't know if this is an option with a child, but like another poster mentioned, your hubby could have time alone with the child for the half hour you're in the other room. I also wonder if your child could color or do things like that next to you while you do it? That way, she's there with you, but you're not having to entertain her. I don't know. Just a thought.

Either way, I give you alot of credit for raising and family and taking such good care of yourself. We have gone back and forth on the idea of having our own child, but the thought of the toll it would take on my body really scares me. I look up to those CFers that have done it and are now successful in raising children. Good for you! That is a full time job on top of the full time job of taking care of your CF!

Please keep us posted how you decide to manage your time. I'll keep trying to think of ideas and share them with you if I come up with something new.
<img src="i/expressions/sun.gif" border="0">

 

[ladybug]

Hi, Holly!
I found it really interesting what you said about your husband and that he doesn't see CF as much other than taking some pills and really doesn't seem to want reminders all the time. My hubby is very similar! I'm usually the one doing all the research and remembering to do things like treatments and meds, etc. It seems that he doesn't really care to be a part of the ongoing education and treatment of CF... don't get me wrong, he is an AWESOME husband and the best man in the world, but I too think the CF and mortality and everything of it is just too much for him and he likes to think of me as healthy and "normal" because I look healthy and normal (most of the time). Anyway, I just thought I'd let you know that I know how you feel about that and you're not alone. I try to push facts and info. on my hubby about CF and tell him to research it online, etc. and that seems to just make him feel worse and me feel worse for having to "instruct him" to find out about CF when I feel like he should WANT to know all about it.

So, that said, I will get to your original question. I don't have kids, but I also struggle with finding time to do 2-3 vest treatments a day along with nebs during each one. I usually do the morning one when I get up and an afternoon one only when I feel ill. I also do the evening one after hubby goes to bed. Sometimes, on weekends, that can get to be 1-2 AM before i hook up! I also found putting the vest in another room has been helpful for me (us) because then he can watch his tv or do whatever he wants to do without having to watch me do my treatments (not that he would care about that) and its quieter that way. Then, in our bedroom, I hook up to the vest and cranked MY tv up and do my own thing. I don't know if this is an option with a child, but like another poster mentioned, your hubby could have time alone with the child for the half hour you're in the other room. I also wonder if your child could color or do things like that next to you while you do it? That way, she's there with you, but you're not having to entertain her. I don't know. Just a thought.

Either way, I give you alot of credit for raising and family and taking such good care of yourself. We have gone back and forth on the idea of having our own child, but the thought of the toll it would take on my body really scares me. I look up to those CFers that have done it and are now successful in raising children. Good for you! That is a full time job on top of the full time job of taking care of your CF!

Please keep us posted how you decide to manage your time. I'll keep trying to think of ideas and share them with you if I come up with something new.
<img src="i/expressions/sun.gif" border="0">

 

[HollyCatheryn]

Thanks Sonia. It hard to feel isolated sometimes. Like noone else understands. We've settled into having dinner a little early, at about 6:00, we do the dishes immediately afterward. Then I start my tx at about 7:00pm, it lasts until about 7:45 (if I'm doing TOBI too) or 7:30. Then we have some time before we start getting Murren (daughter) to bed. We try to have her in bed 8:30-45. It gets screwed up if we go out for the evening to be with family. And that's always hard because she's up late and needs to be put to bed right away, then I have to start my tx afterward. But, that's our groove for the moment. I still haven't managed to work in a tx at midday. Any ideas about that one? Honestly, I'm not sure I even need a tx at midday unless I'm sick, but that was what the doc said and I'm of the mind (especially because I'm new to the clinic and to his practice) to go ahead and do everything and then try to negotiate down. BTW, off topic, but I just started taking Mucinex ( 2 guafeneisin tablets, twice a day) and I'm really pleased. My cough is more productive, with less work. I feel like I'm really moving junk now. I used to feel like I'd cough and cough and cough and not move anything. I'd just feel it rattling down there.

 

[HollyCatheryn]

Thanks Sonia. It hard to feel isolated sometimes. Like noone else understands. We've settled into having dinner a little early, at about 6:00, we do the dishes immediately afterward. Then I start my tx at about 7:00pm, it lasts until about 7:45 (if I'm doing TOBI too) or 7:30. Then we have some time before we start getting Murren (daughter) to bed. We try to have her in bed 8:30-45. It gets screwed up if we go out for the evening to be with family. And that's always hard because she's up late and needs to be put to bed right away, then I have to start my tx afterward. But, that's our groove for the moment. I still haven't managed to work in a tx at midday. Any ideas about that one? Honestly, I'm not sure I even need a tx at midday unless I'm sick, but that was what the doc said and I'm of the mind (especially because I'm new to the clinic and to his practice) to go ahead and do everything and then try to negotiate down. BTW, off topic, but I just started taking Mucinex ( 2 guafeneisin tablets, twice a day) and I'm really pleased. My cough is more productive, with less work. I feel like I'm really moving junk now. I used to feel like I'd cough and cough and cough and not move anything. I'd just feel it rattling down there.

 

[NoDayButToday]

The midday treatment is hard- if I'm feeling a bit down healthwise, I do them, and it feels like I'm scheduling my life around treatments, not the other way around. The only thing I can think of, depending on how long Murren naps, is to do the treatment when you first put her down, and then take your nap afterwards? Or, after Murren wakes up, maybe she can watch a special video or use special toys while Mommy does her treatment? I can definitely symapthize with you because the midday treatment is a pain. Hope I'm of some help <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[NoDayButToday]

The midday treatment is hard- if I'm feeling a bit down healthwise, I do them, and it feels like I'm scheduling my life around treatments, not the other way around. The only thing I can think of, depending on how long Murren naps, is to do the treatment when you first put her down, and then take your nap afterwards? Or, after Murren wakes up, maybe she can watch a special video or use special toys while Mommy does her treatment? I can definitely symapthize with you because the midday treatment is a pain. Hope I'm of some help <img src="i/expressions/face-icon-small-smile.gif" border="0">