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Parents with CF

L

Littlemiss

New member
How do all the parents with CF out there cope with the demands of parenting as well as looking after your own health?

I'm loving being a mum to my little Abby (now 12 weeks), but sometimes it's so hard to find the time to get everything done! Nothing could have prepared me for just how much work it is being a parent.

I'm starting to feel run-down and am putting off a course of abx (something I never would have done before) because I just can't see how I can fit in the extra nebs. The Dr wants to treat me with tobra and aztreonam via neb, which will mean four more nebs every day for two weeks, and Abby can't be in the same room when I do them.

So how do you do it?? Do you have lots of outside help? Do you let your health slide? Or do you just not do other things (like eat? sleep??) to fit it all in?
 
L

Littlemiss

New member
How do all the parents with CF out there cope with the demands of parenting as well as looking after your own health?

I'm loving being a mum to my little Abby (now 12 weeks), but sometimes it's so hard to find the time to get everything done! Nothing could have prepared me for just how much work it is being a parent.

I'm starting to feel run-down and am putting off a course of abx (something I never would have done before) because I just can't see how I can fit in the extra nebs. The Dr wants to treat me with tobra and aztreonam via neb, which will mean four more nebs every day for two weeks, and Abby can't be in the same room when I do them.

So how do you do it?? Do you have lots of outside help? Do you let your health slide? Or do you just not do other things (like eat? sleep??) to fit it all in?
 
L

Littlemiss

New member
How do all the parents with CF out there cope with the demands of parenting as well as looking after your own health?
<br />
<br />I'm loving being a mum to my little Abby (now 12 weeks), but sometimes it's so hard to find the time to get everything done! Nothing could have prepared me for just how much work it is being a parent.
<br />
<br />I'm starting to feel run-down and am putting off a course of abx (something I never would have done before) because I just can't see how I can fit in the extra nebs. The Dr wants to treat me with tobra and aztreonam via neb, which will mean four more nebs every day for two weeks, and Abby can't be in the same room when I do them.
<br />
<br />So how do you do it?? Do you have lots of outside help? Do you let your health slide? Or do you just not do other things (like eat? sleep??) to fit it all in?
 
J

jpetersen

New member
Do you have an eFlow/Trio? HUGE help to do nebs in 2-4 minutes each. More info here than I can type in a forum comment: <a target=_blank class=ftalternatingbarlinklarge href="http://www.cffatboy.com/2010/04/why-you-need-an-eflow-a-k-a-trio-and-altera/">http://www.cffatboy.com/2010/0...a-k-a-trio-and-altera/</a>
 
J

jpetersen

New member
Do you have an eFlow/Trio? HUGE help to do nebs in 2-4 minutes each. More info here than I can type in a forum comment: <a target=_blank class=ftalternatingbarlinklarge href="http://www.cffatboy.com/2010/04/why-you-need-an-eflow-a-k-a-trio-and-altera/">http://www.cffatboy.com/2010/0...a-k-a-trio-and-altera/</a>
 
J

jpetersen

New member
Do you have an eFlow/Trio? HUGE help to do nebs in 2-4 minutes each. More info here than I can type in a forum comment: <a target=_blank class=ftalternatingbarlinklarge href="http://www.cffatboy.com/2010/04/why-you-need-an-eflow-a-k-a-trio-and-altera/">http://www.cffatboy.com/2010/0...a-k-a-trio-and-altera/</a>
 
L

Littlemiss

New member
That is an awesome suggestion! Why did I not think of an eFlow?? No I don't have one yet, but I think under the circumstances the expense is now justified. I'd be able to get my abx done during one of Abby's naps! Thankyou!
 
L

Littlemiss

New member
That is an awesome suggestion! Why did I not think of an eFlow?? No I don't have one yet, but I think under the circumstances the expense is now justified. I'd be able to get my abx done during one of Abby's naps! Thankyou!
 
L

Littlemiss

New member
That is an awesome suggestion! Why did I not think of an eFlow?? No I don't have one yet, but I think under the circumstances the expense is now justified. I'd be able to get my abx done during one of Abby's naps! Thankyou!
 
K

kirstynkoffs

New member
Hi AJ
I'm in aus too<img src="i/expressions/face-icon-small-smile.gif" border="0"> An eflow would be one solution however as we do not have the same programs as the states ie being able to score a free one through the drug companys or claiming on insurence they are fairly painfull to the bank account. Very few states here in aus seem to have access to free or discount ones and there is also the ongoing cost of the heads. In my experience my eflow was great but the time and effort to look after the heads and the cost of them put me off. Another and far cheaper option would be getting some pari sprint neb cups again not all centres use them because they are a little more expensive than the LC plus- maybe you already use these anyway?! For me the time for coliston in the sprint with a well serviced pump was very similar to the eflow a week or two after starting a new head and they can be washed and sterlised easily. You can get a sprint online for about $20 if your centre doesn't provide them. My advice? DO NOT GO THROUGH techni-pro the rip-off merchants who supply all our pari stuff here in aus. You can save so much for both eflow and sprints online.

For all I know you might be able to get a free eflow in which case it's worth a whirl if not my advice would be to get sprints for all your nebs and service your pump!!!

Congrats on your little one btw!!!
 
K

kirstynkoffs

New member
Hi AJ
I'm in aus too<img src="i/expressions/face-icon-small-smile.gif" border="0"> An eflow would be one solution however as we do not have the same programs as the states ie being able to score a free one through the drug companys or claiming on insurence they are fairly painfull to the bank account. Very few states here in aus seem to have access to free or discount ones and there is also the ongoing cost of the heads. In my experience my eflow was great but the time and effort to look after the heads and the cost of them put me off. Another and far cheaper option would be getting some pari sprint neb cups again not all centres use them because they are a little more expensive than the LC plus- maybe you already use these anyway?! For me the time for coliston in the sprint with a well serviced pump was very similar to the eflow a week or two after starting a new head and they can be washed and sterlised easily. You can get a sprint online for about $20 if your centre doesn't provide them. My advice? DO NOT GO THROUGH techni-pro the rip-off merchants who supply all our pari stuff here in aus. You can save so much for both eflow and sprints online.

For all I know you might be able to get a free eflow in which case it's worth a whirl if not my advice would be to get sprints for all your nebs and service your pump!!!

Congrats on your little one btw!!!
 
K

kirstynkoffs

New member
Hi AJ
<br />I'm in aus too<img src="i/expressions/face-icon-small-smile.gif" border="0"> An eflow would be one solution however as we do not have the same programs as the states ie being able to score a free one through the drug companys or claiming on insurence they are fairly painfull to the bank account. Very few states here in aus seem to have access to free or discount ones and there is also the ongoing cost of the heads. In my experience my eflow was great but the time and effort to look after the heads and the cost of them put me off. Another and far cheaper option would be getting some pari sprint neb cups again not all centres use them because they are a little more expensive than the LC plus- maybe you already use these anyway?! For me the time for coliston in the sprint with a well serviced pump was very similar to the eflow a week or two after starting a new head and they can be washed and sterlised easily. You can get a sprint online for about $20 if your centre doesn't provide them. My advice? DO NOT GO THROUGH techni-pro the rip-off merchants who supply all our pari stuff here in aus. You can save so much for both eflow and sprints online.
<br />
<br />For all I know you might be able to get a free eflow in which case it's worth a whirl if not my advice would be to get sprints for all your nebs and service your pump!!!
<br />
<br />Congrats on your little one btw!!!
 
M

mamaScarlett

Active member
If I really need a tune up, I do it. Even if my daughter has to sit in front of the tv-(if I'm desperate), I put a gate around the living room, and put on educational shows for her. And set up a video monitor in the room so I can watch her while I do my therapy in the next room. Then I do my treatments. Thats pretty much what I do now during my therapy.
Except that she's older now (3) and she can play with her toys also while I neb.
But I've established with her from day 1 that therapy time is mommys special time and its her special time to watch a favorite show or play with a special toy.
I have never put off doing my treatments bc of schedule or parenting. I just know if I put it off today it will come back in a worse way for me later. I have put off all other non essential stuff though. If I'm sick, We do take -out food, or have a family member help us with food for the weeks I'm on IVs. I don't worry about the house.
I do nothing besides my treatments, and feed myself and my daughter and take showers. Everything else is put aside till I'm better.
I have lots of family support, so if I need to stay in the hospital she goes to my mother in laws house. Sometimes honestly, its better to go into the hospital for a week to get really good therapy-and come out to do a week or 2 of home IVs.
I remember the first time I had to leave her to be admitted into the hospital. The emotional pain was terrible. But you know what, she was FINE. And I got better. You find a way to get through it. Non-cf parents go on vacation for weeks and leave the kids with grandma, right?-We make it about having a special week at grandma's.
For a typical tune up I stay home. I get as much help as possible, my husband adjusts his work schedule and we get through it. But do not put your health off. I've always viewed caring for my health as part of caring for my daughter. I need to be healthy for her.
I think the emotional side of cf is whats hardest for me. I worry about everything. So I have to keep that in check.
I really try to enjoy my daughter, and enjoy being a parent.
I think bc I know what a miracle it is to have a little one as a woman w cf, I appreciate the happy times more as a parent.
All moms have feelings of guilt, or like they never have enough time for everything. You'll get through it. The first few years are hard. You'll find your rhythm and routine.
 
M

mamaScarlett

Active member
If I really need a tune up, I do it. Even if my daughter has to sit in front of the tv-(if I'm desperate), I put a gate around the living room, and put on educational shows for her. And set up a video monitor in the room so I can watch her while I do my therapy in the next room. Then I do my treatments. Thats pretty much what I do now during my therapy.
Except that she's older now (3) and she can play with her toys also while I neb.
But I've established with her from day 1 that therapy time is mommys special time and its her special time to watch a favorite show or play with a special toy.
I have never put off doing my treatments bc of schedule or parenting. I just know if I put it off today it will come back in a worse way for me later. I have put off all other non essential stuff though. If I'm sick, We do take -out food, or have a family member help us with food for the weeks I'm on IVs. I don't worry about the house.
I do nothing besides my treatments, and feed myself and my daughter and take showers. Everything else is put aside till I'm better.
I have lots of family support, so if I need to stay in the hospital she goes to my mother in laws house. Sometimes honestly, its better to go into the hospital for a week to get really good therapy-and come out to do a week or 2 of home IVs.
I remember the first time I had to leave her to be admitted into the hospital. The emotional pain was terrible. But you know what, she was FINE. And I got better. You find a way to get through it. Non-cf parents go on vacation for weeks and leave the kids with grandma, right?-We make it about having a special week at grandma's.
For a typical tune up I stay home. I get as much help as possible, my husband adjusts his work schedule and we get through it. But do not put your health off. I've always viewed caring for my health as part of caring for my daughter. I need to be healthy for her.
I think the emotional side of cf is whats hardest for me. I worry about everything. So I have to keep that in check.
I really try to enjoy my daughter, and enjoy being a parent.
I think bc I know what a miracle it is to have a little one as a woman w cf, I appreciate the happy times more as a parent.
All moms have feelings of guilt, or like they never have enough time for everything. You'll get through it. The first few years are hard. You'll find your rhythm and routine.
 
M

mamaScarlett

Active member
If I really need a tune up, I do it. Even if my daughter has to sit in front of the tv-(if I'm desperate), I put a gate around the living room, and put on educational shows for her. And set up a video monitor in the room so I can watch her while I do my therapy in the next room. Then I do my treatments. Thats pretty much what I do now during my therapy.
<br />Except that she's older now (3) and she can play with her toys also while I neb.
<br />But I've established with her from day 1 that therapy time is mommys special time and its her special time to watch a favorite show or play with a special toy.
<br />I have never put off doing my treatments bc of schedule or parenting. I just know if I put it off today it will come back in a worse way for me later. I have put off all other non essential stuff though. If I'm sick, We do take -out food, or have a family member help us with food for the weeks I'm on IVs. I don't worry about the house.
<br />I do nothing besides my treatments, and feed myself and my daughter and take showers. Everything else is put aside till I'm better.
<br />I have lots of family support, so if I need to stay in the hospital she goes to my mother in laws house. Sometimes honestly, its better to go into the hospital for a week to get really good therapy-and come out to do a week or 2 of home IVs.
<br />I remember the first time I had to leave her to be admitted into the hospital. The emotional pain was terrible. But you know what, she was FINE. And I got better. You find a way to get through it. Non-cf parents go on vacation for weeks and leave the kids with grandma, right?-We make it about having a special week at grandma's.
<br />For a typical tune up I stay home. I get as much help as possible, my husband adjusts his work schedule and we get through it. But do not put your health off. I've always viewed caring for my health as part of caring for my daughter. I need to be healthy for her.
<br />I think the emotional side of cf is whats hardest for me. I worry about everything. So I have to keep that in check.
<br />I really try to enjoy my daughter, and enjoy being a parent.
<br />I think bc I know what a miracle it is to have a little one as a woman w cf, I appreciate the happy times more as a parent.
<br />All moms have feelings of guilt, or like they never have enough time for everything. You'll get through it. The first few years are hard. You'll find your rhythm and routine.
 
B

beleache

New member
Hi Aj,

I have had lots of help.. including a cleaning lady once a week. I have tried hard not to let my health suffer due to other things including the kids.. I just feel that if I do that it will end up costing me..

My main goal , when I first got dxd was to live to an age where the boys could fen for themselves.. So I did whatever I could to make that happen...

Of course I do know that CF has a mind of its own & that I am very blessed to be my age, but I do think I have done my part (as best I could, i'm far from perfect lol) so I am satisfied with that..

There have been times when I have felt guilty , not doing some things w/ the kids that other parents could do, but I figure they would rather have me around (to bug them lol) for as long as possible..

My youngest son Sean (now 17) was always worried about my dying, so what I always said was that I was doing my best to stay as healthy as I could to be here for him & the family...

Having a newborn/toddler is extremely tiring even for healthy ppl, so get help !!! Whatever ppl offer, take it !

It does get better as they get older... Hang in there & dont put yourself last , that wont be good for you or your little one.

Take care & God Bless <img src="i/expressions/heart.gif" border="0"> joni
 
B

beleache

New member
Hi Aj,

I have had lots of help.. including a cleaning lady once a week. I have tried hard not to let my health suffer due to other things including the kids.. I just feel that if I do that it will end up costing me..

My main goal , when I first got dxd was to live to an age where the boys could fen for themselves.. So I did whatever I could to make that happen...

Of course I do know that CF has a mind of its own & that I am very blessed to be my age, but I do think I have done my part (as best I could, i'm far from perfect lol) so I am satisfied with that..

There have been times when I have felt guilty , not doing some things w/ the kids that other parents could do, but I figure they would rather have me around (to bug them lol) for as long as possible..

My youngest son Sean (now 17) was always worried about my dying, so what I always said was that I was doing my best to stay as healthy as I could to be here for him & the family...

Having a newborn/toddler is extremely tiring even for healthy ppl, so get help !!! Whatever ppl offer, take it !

It does get better as they get older... Hang in there & dont put yourself last , that wont be good for you or your little one.

Take care & God Bless <img src="i/expressions/heart.gif" border="0"> joni
 
B

beleache

New member
Hi Aj,
<br />
<br /> I have had lots of help.. including a cleaning lady once a week. I have tried hard not to let my health suffer due to other things including the kids.. I just feel that if I do that it will end up costing me..
<br />
<br /> My main goal , when I first got dxd was to live to an age where the boys could fen for themselves.. So I did whatever I could to make that happen...
<br />
<br /> Of course I do know that CF has a mind of its own & that I am very blessed to be my age, but I do think I have done my part (as best I could, i'm far from perfect lol) so I am satisfied with that..
<br />
<br /> There have been times when I have felt guilty , not doing some things w/ the kids that other parents could do, but I figure they would rather have me around (to bug them lol) for as long as possible..
<br />
<br /> My youngest son Sean (now 17) was always worried about my dying, so what I always said was that I was doing my best to stay as healthy as I could to be here for him & the family...
<br />
<br /> Having a newborn/toddler is extremely tiring even for healthy ppl, so get help !!! Whatever ppl offer, take it !
<br />
<br /> It does get better as they get older... Hang in there & dont put yourself last , that wont be good for you or your little one.
<br />
<br />Take care & God Bless <img src="i/expressions/heart.gif" border="0"> joni
 
K

Keepercjr

Guest
I'm sorry you're feeling bad <img src="i/expressions/face-icon-small-sad.gif" border="0"> One question - why can't Abby be in the same room? I always do my nebs with the kids in the room. Once in a while even w/ someone in my lap. The amount they would get second hand is so minuscule that it never even concerned me enough give it a second thought. You're not exhaling in her face or anything. You could even have a fan gently blowing your way to make sure the exhale doesn't even go in her direction at all.
 
K

Keepercjr

Guest
I'm sorry you're feeling bad <img src="i/expressions/face-icon-small-sad.gif" border="0"> One question - why can't Abby be in the same room? I always do my nebs with the kids in the room. Once in a while even w/ someone in my lap. The amount they would get second hand is so minuscule that it never even concerned me enough give it a second thought. You're not exhaling in her face or anything. You could even have a fan gently blowing your way to make sure the exhale doesn't even go in her direction at all.
 
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