Hey everyone, i have been hospital free for about a year and half. which is really good, but i am in that study for the eflow which is just like tobi, on for 28 days off for 28 days. But i have been congested on and off for like 3mths but not bad enough to go in. I have been goin to get my lung test done every 4wks for the study thing and they have been normal. so my whole thing is this, i have a 2yrs old and i think i want to go in get the picc line and see if i can just come home with it since im really not sick sick, I don't want to get to the point where I'm to sick and be able to take care of her, cuz that happen her 1st christmas i couldn't even help her open presents so i was a mess and kept crying telling my mom i don't want to do this anymore, i want to be ther for her and everything else. So do u think i should just call my doc and say hey i think i should just get a tune up for the sake of my baby. or just wait till they tell me. He is also the kinda of doctor that will put me on anti pills first and if that doesn't work then i get the picc line.
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Do you go into the hospital 3-4 times a year even if your feeling well?
- Thread starter Marcy
- Start date
I use the ( I think this is what you are talking about) Eclipse balls. They are balls filled with your medications and you hook the tubing from the ball to the tubing in your picc line and then release this plastic thing that is pinching the tube and the medicine goes into your picc line via gravity. It is great. I can put the balls of medicine when it is infusing in my pocket or a fanny pack type thing and walk around or whatever. If that is what your talking about in terms of Eclipse balls, I love them
Jennifer 34 years old with CF and CFRD
Jennifer 34 years old with CF and CFRD
I use the ( I think this is what you are talking about) Eclipse balls. They are balls filled with your medications and you hook the tubing from the ball to the tubing in your picc line and then release this plastic thing that is pinching the tube and the medicine goes into your picc line via gravity. It is great. I can put the balls of medicine when it is infusing in my pocket or a fanny pack type thing and walk around or whatever. If that is what your talking about in terms of Eclipse balls, I love them
Jennifer 34 years old with CF and CFRD
Jennifer 34 years old with CF and CFRD
I use the ( I think this is what you are talking about) Eclipse balls. They are balls filled with your medications and you hook the tubing from the ball to the tubing in your picc line and then release this plastic thing that is pinching the tube and the medicine goes into your picc line via gravity. It is great. I can put the balls of medicine when it is infusing in my pocket or a fanny pack type thing and walk around or whatever. If that is what your talking about in terms of Eclipse balls, I love them
Jennifer 34 years old with CF and CFRD
Jennifer 34 years old with CF and CFRD
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i> Darby, What clinic
do you go to if you don't mind my asking? Have you ever tried the
eclipse balls instead of a pump? Thanks.</end quote></div><br>
<br>
I go to Dr. Carey in Tulsa, OK. He's a big fan of the Danish
school of CF treatment.<br>
<br>
Yes, I've used the balloon medicine ball things, although the name
"eclipse" doesn't ring a bell. Those things are
great because they are much more discreet, but I used them with a
different doc and a different pharmacy than I am using now.
Like Giggles said, you can put them in your pocket and no one
is the wiser.<br>
<br>
I believe I have to use the pump now because It takes each IV
dose 3 hours to infuse, where the balloon things are usually
more like half an hour (at least they were for me).
do you go to if you don't mind my asking? Have you ever tried the
eclipse balls instead of a pump? Thanks.</end quote></div><br>
<br>
I go to Dr. Carey in Tulsa, OK. He's a big fan of the Danish
school of CF treatment.<br>
<br>
Yes, I've used the balloon medicine ball things, although the name
"eclipse" doesn't ring a bell. Those things are
great because they are much more discreet, but I used them with a
different doc and a different pharmacy than I am using now.
Like Giggles said, you can put them in your pocket and no one
is the wiser.<br>
<br>
I believe I have to use the pump now because It takes each IV
dose 3 hours to infuse, where the balloon things are usually
more like half an hour (at least they were for me).
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i> Darby, What clinic
do you go to if you don't mind my asking? Have you ever tried the
eclipse balls instead of a pump? Thanks.</end quote></div><br>
<br>
I go to Dr. Carey in Tulsa, OK. He's a big fan of the Danish
school of CF treatment.<br>
<br>
Yes, I've used the balloon medicine ball things, although the name
"eclipse" doesn't ring a bell. Those things are
great because they are much more discreet, but I used them with a
different doc and a different pharmacy than I am using now.
Like Giggles said, you can put them in your pocket and no one
is the wiser.<br>
<br>
I believe I have to use the pump now because It takes each IV
dose 3 hours to infuse, where the balloon things are usually
more like half an hour (at least they were for me).
do you go to if you don't mind my asking? Have you ever tried the
eclipse balls instead of a pump? Thanks.</end quote></div><br>
<br>
I go to Dr. Carey in Tulsa, OK. He's a big fan of the Danish
school of CF treatment.<br>
<br>
Yes, I've used the balloon medicine ball things, although the name
"eclipse" doesn't ring a bell. Those things are
great because they are much more discreet, but I used them with a
different doc and a different pharmacy than I am using now.
Like Giggles said, you can put them in your pocket and no one
is the wiser.<br>
<br>
I believe I have to use the pump now because It takes each IV
dose 3 hours to infuse, where the balloon things are usually
more like half an hour (at least they were for me).
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i> Darby, What clinic
do you go to if you don't mind my asking? Have you ever tried the
eclipse balls instead of a pump? Thanks.</end quote></div><br>
<br>
I go to Dr. Carey in Tulsa, OK. He's a big fan of the Danish
school of CF treatment.<br>
<br>
Yes, I've used the balloon medicine ball things, although the name
"eclipse" doesn't ring a bell. Those things are
great because they are much more discreet, but I used them with a
different doc and a different pharmacy than I am using now.
Like Giggles said, you can put them in your pocket and no one
is the wiser.<br>
<br>
I believe I have to use the pump now because It takes each IV
dose 3 hours to infuse, where the balloon things are usually
more like half an hour (at least they were for me).
do you go to if you don't mind my asking? Have you ever tried the
eclipse balls instead of a pump? Thanks.</end quote></div><br>
<br>
I go to Dr. Carey in Tulsa, OK. He's a big fan of the Danish
school of CF treatment.<br>
<br>
Yes, I've used the balloon medicine ball things, although the name
"eclipse" doesn't ring a bell. Those things are
great because they are much more discreet, but I used them with a
different doc and a different pharmacy than I am using now.
Like Giggles said, you can put them in your pocket and no one
is the wiser.<br>
<br>
I believe I have to use the pump now because It takes each IV
dose 3 hours to infuse, where the balloon things are usually
more like half an hour (at least they were for me).
debs2girls
New member
Darby, my daughter goes to Dr. Carey. We live not too far from his office. Do you live close by?
I havent seen his Danish treatment side. I have to beg him to do anything...well almost.
I havent seen his Danish treatment side. I have to beg him to do anything...well almost.
debs2girls
New member
Darby, my daughter goes to Dr. Carey. We live not too far from his office. Do you live close by?
I havent seen his Danish treatment side. I have to beg him to do anything...well almost.
I havent seen his Danish treatment side. I have to beg him to do anything...well almost.
debs2girls
New member
Darby, my daughter goes to Dr. Carey. We live not too far from his office. Do you live close by?
I havent seen his Danish treatment side. I have to beg him to do anything...well almost.
I havent seen his Danish treatment side. I have to beg him to do anything...well almost.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>
Sonia-
In answer to your question, yes whenever I do IVs my lung function is higher for about a week and then I go to baseline. I kind of always wondered what the point was to get IVs if all it was going to do was make me better for a week.
Sue 24w/CF</end quote></div>
Thanks for the reply, Sue. I'm glad I'm not alone, though not glad this is happening to either of us. I don't think it has to do with needing to be on antibiotics for longer since my FEV1 does in fact go up 5-10% and I do start feeling much better, but it is inevitable that as soon as the picc is out my FEV1 starts to fall. Odd. Anyway, thanks for getting back to me. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Sonia-
In answer to your question, yes whenever I do IVs my lung function is higher for about a week and then I go to baseline. I kind of always wondered what the point was to get IVs if all it was going to do was make me better for a week.
Sue 24w/CF</end quote></div>
Thanks for the reply, Sue. I'm glad I'm not alone, though not glad this is happening to either of us. I don't think it has to do with needing to be on antibiotics for longer since my FEV1 does in fact go up 5-10% and I do start feeling much better, but it is inevitable that as soon as the picc is out my FEV1 starts to fall. Odd. Anyway, thanks for getting back to me. <img src="i/expressions/face-icon-small-smile.gif" border="0">