Re: Zevex pump users--long

[Guest guest]

Barbara

I would think a creative OT could come up with something to stretch

the tubing and probably some aid for the button problem.

Could you use something that you push around while walking. I'm

thinking of a walker or something like is used for oxygen tanks. You

could always go to an IV type pole, but I know I wouldn't like that. I

like my walker, as I am able to sit on it when needed and it has a

basket for carrying things and a bag could also be added.

laurie

> I think there are several people in Mitoldies who use the Zevex pump. Last

> week I switched my Kangaroo for a Zevex to enable ambulatory fluid drip in

> the daytime and we are having several problems that we did not anticipate.

> In fact, we were quite discouraged when the Option Care person came to the

> house and did the demo, as we realized it was going to be

> difficult-to-impossible for me to use the Zevex pump myself. I am wondering

> whether others have encountered these problems and if so, how you have

> solved them.

>

> 1. Threading the tube through the Zevex is very difficult for me even on a

> good day and impossible on a bad day. That's because you have to manually

> stretch the tube around the wheel, pulling it out a good 2 " longer to clip

> the other end into place. When the rep was here, I tried several times and

> could not stretch the tube far enough to snap it in place, and that was an

> average day as far as arm strength goes. On the Kangaroo, all you had to do

> was lay the tube in the track and the mechanical arm did all the stretching

> when it snapped shut. I had not heard any patients mention this feature on

> the Zevex, therefore had no idea the threading would require manual

> stretching.

>

> 2. Even if I could get it threaded, I have a lot of difficulty getting any

> of the touch buttons to work. They require simultaneous pushing and holding

> for 2 seconds to activate, which was not true of the Kangaroo. Sometimes I

> couldn't push the Kangaroo buttons, but the problem is much bigger with the

> Zevex. I push and push until my finger is bent backwards, and the button

> does not respond. (Yes, I also have trouble with microwave buttons, etc.)

> For the rep and my husband, it looks so simple. A light touch and voila! The

> buttons work.

>

> 3. When the pump is in the carrying case (which it would be during the day

> when I am alone), you have to push the buttons through the soft plastic

> window, which is even harder. So even if my husband did the threading and

> loading before he left for work, I would have trouble with the buttons if

> the pump beeps (which it did whenever the tube got crimped in the case). To

> have even a chance of getting the buttons to work, I would have to take both

> the bag and pump out of the carrier and try to get the buttons to respond

> directly. Then reload the carrying case which is not simple for me. There

> are elastic straps, Velcro holders, etc.

>

> 3. The weight of the pump and bag feels much heavier than I had anticipated.

> I am using the Zevex Sportpack carrier, which is much smaller than the

> standard Zevex belt/backpack carrier. The pump and little 500 ml bag total

> only 2.5 pounds, but it feels like a pile of bricks when I try to get up and

> move. I had no idea it would feel that heavy. The weight alone would really

> discourage me from moving around, and adds further to balance problems. This

> inflated weight perception, I realize, is a function of weakness. That's one

> of the features of weakness, in fact, that the objects themselves--shoes, a

> glass of water, a book--feel like they're full of cement. As if the problem

> is with the object and not my body.

>

> 4. I had thought I could wear the Sportpack like a shoulder bag, but with

> the weight it slips off. If I put the strap over my head and wear it

> crosswise, the weight pulls on my neck and aggravates long-standing neck

> problems. I can't wear a belt, and a backpack has to be taken off every time

> you sit down and put back on every time you get up. That too, would

> discourage movement, which I do not want to do. I want to keep moving.

>

> 5. At night the Zevex is beeping a lot more than the Kangaroo, apparently

> because it is more sensitive to tube crimps than the Kangaroo. True, the

> Zevex does not beep with any tilting of the pump as the Kangaroo does.

> However, in our experience, the Zevex is more sensitive to tube crimping.

> With the Kangaroo we had worked out a way to tape the tube to my belly so it

> rarely beeped at night, even if I turned on my side. With the Zevex, I

> cannot turn on my side without triggering beeping. Once it beeps, I cannot

> get the buttons to work (of course!) so I have to wake my husband to push

> the buttons. He sleeps through the beeps and goes back to sleep quickly, but

> I do not. Add sleep disruption to the list of problems!

>

> My doctors want me to pump daytime fluids for several reasons, in addition

> to nighttime formula, so we got the Zevex just for this purpose. Everyone we

> had talked too had only praise for the pump and said it was great, easy to

> use, etc. I realize the " problem " is with my particular physical limitations

> and not the pump. Thus we are trying to think creatively and figure out ways

> to make it work. My only idea at this point is to ask my PCP about a consult

> with an occupational therapist to see if they have any mechanical devices

> that would enable me to stretch the tube and make the buttons work. I have

> no idea if such devices even exist.

>

> Of course, I could go to a power chair around the house and park the weight

> of the bag and pump on the chair. That would solve the weight problem, but

> not the button problem. For several reasons I have been putting off using a

> power chair in the house for a long time and hope to do so longer.

>

> I will post my questions to the tube feeding support group, but there are

> only one or two adults in that group who use the Zevex and they do not have

> muscle disease.

>

> Suggestions?

>

> Thanks.

> Barbara

>

>

>

>

>

>

>

> Medical advice, information, opinions, data and statements contained herein

are not necessarily those of the list moderators. The author of this e mail is

entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with their

physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

>

>

[Guest guest]

Yes, I need a creative OT person. We have an IV pole that we use at night,

but I've tried pushing that around the house and know I can't. The walker is

a good idea. I have one, but I'd have to think about exactly how that might

work to hang the pump on it. Probably Hubby can figure that one out. I have

a tray that clips on it so I can move food and myself at the same time but

no other accessories.

Thanks, Laurie

B

_____

From: [mailto: ] On Behalf

Of Laurie Fitzgerald

Sent: Wednesday, July 06, 2005 12:24 PM

To:

Subject: Re: Zevex pump users--long

Barbara

I would think a creative OT could come up with something to stretch

the tubing and probably some aid for the button problem.

Could you use something that you push around while walking. I'm

thinking of a walker or something like is used for oxygen tanks. You

could always go to an IV type pole, but I know I wouldn't like that. I

like my walker, as I am able to sit on it when needed and it has a

basket for carrying things and a bag could also be added.

laurie

> I think there are several people in Mitoldies who use the Zevex pump. Last

> week I switched my Kangaroo for a Zevex to enable ambulatory fluid drip in

> the daytime and we are having several problems that we did not anticipate.

> In fact, we were quite discouraged when the Option Care person came to the

> house and did the demo, as we realized it was going to be

> difficult-to-impossible for me to use the Zevex pump myself. I am

wondering

> whether others have encountered these problems and if so, how you have

> solved them.

>

> 1. Threading the tube through the Zevex is very difficult for me even on a

> good day and impossible on a bad day. That's because you have to manually

> stretch the tube around the wheel, pulling it out a good 2 " longer to clip

> the other end into place. When the rep was here, I tried several times and

> could not stretch the tube far enough to snap it in place, and that was an

> average day as far as arm strength goes. On the Kangaroo, all you had to

do

> was lay the tube in the track and the mechanical arm did all the

stretching

> when it snapped shut. I had not heard any patients mention this feature on

> the Zevex, therefore had no idea the threading would require manual

> stretching.

>

> 2. Even if I could get it threaded, I have a lot of difficulty getting any

> of the touch buttons to work. They require simultaneous pushing and

holding

> for 2 seconds to activate, which was not true of the Kangaroo. Sometimes I

> couldn't push the Kangaroo buttons, but the problem is much bigger with

the

> Zevex. I push and push until my finger is bent backwards, and the button

> does not respond. (Yes, I also have trouble with microwave buttons, etc.)

> For the rep and my husband, it looks so simple. A light touch and voila!

The

> buttons work.

>

> 3. When the pump is in the carrying case (which it would be during the day

> when I am alone), you have to push the buttons through the soft plastic

> window, which is even harder. So even if my husband did the threading and

> loading before he left for work, I would have trouble with the buttons if

> the pump beeps (which it did whenever the tube got crimped in the case).

To

> have even a chance of getting the buttons to work, I would have to take

both

> the bag and pump out of the carrier and try to get the buttons to respond

> directly. Then reload the carrying case which is not simple for me. There

> are elastic straps, Velcro holders, etc.

>

> 3. The weight of the pump and bag feels much heavier than I had

anticipated.

> I am using the Zevex Sportpack carrier, which is much smaller than the

> standard Zevex belt/backpack carrier. The pump and little 500 ml bag total

> only 2.5 pounds, but it feels like a pile of bricks when I try to get up

and

> move. I had no idea it would feel that heavy. The weight alone would

really

> discourage me from moving around, and adds further to balance problems.

This

> inflated weight perception, I realize, is a function of weakness. That's

one

> of the features of weakness, in fact, that the objects themselves--shoes,

a

> glass of water, a book--feel like they're full of cement. As if the

problem

> is with the object and not my body.

>

> 4. I had thought I could wear the Sportpack like a shoulder bag, but with

> the weight it slips off. If I put the strap over my head and wear it

> crosswise, the weight pulls on my neck and aggravates long-standing neck

> problems. I can't wear a belt, and a backpack has to be taken off every

time

> you sit down and put back on every time you get up. That too, would

> discourage movement, which I do not want to do. I want to keep moving.

>

> 5. At night the Zevex is beeping a lot more than the Kangaroo, apparently

> because it is more sensitive to tube crimps than the Kangaroo. True, the

> Zevex does not beep with any tilting of the pump as the Kangaroo does.

> However, in our experience, the Zevex is more sensitive to tube crimping.

> With the Kangaroo we had worked out a way to tape the tube to my belly so

it

> rarely beeped at night, even if I turned on my side. With the Zevex, I

> cannot turn on my side without triggering beeping. Once it beeps, I cannot

> get the buttons to work (of course!) so I have to wake my husband to push

> the buttons. He sleeps through the beeps and goes back to sleep quickly,

but

> I do not. Add sleep disruption to the list of problems!

>

> My doctors want me to pump daytime fluids for several reasons, in addition

> to nighttime formula, so we got the Zevex just for this purpose. Everyone

we

> had talked too had only praise for the pump and said it was great, easy to

> use, etc. I realize the " problem " is with my particular physical

limitations

> and not the pump. Thus we are trying to think creatively and figure out

ways

> to make it work. My only idea at this point is to ask my PCP about a

consult

> with an occupational therapist to see if they have any mechanical devices

> that would enable me to stretch the tube and make the buttons work. I have

> no idea if such devices even exist.

>

> Of course, I could go to a power chair around the house and park the

weight

> of the bag and pump on the chair. That would solve the weight problem, but

> not the button problem. For several reasons I have been putting off using

a

> power chair in the house for a long time and hope to do so longer.

>

> I will post my questions to the tube feeding support group, but there are

> only one or two adults in that group who use the Zevex and they do not

have

> muscle disease.

>

> Suggestions?

>

> Thanks.

> Barbara

>

>

>

>

>

>

>

> Medical advice, information, opinions, data and statements contained

herein are not necessarily those of the list moderators. The author of this

e mail is entirely responsible for its content. List members are reminded of

their responsibility to evaluate the content of the postings and consult

with their physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

>

>

[Guest guest]

-Have you considered putting it in a backpack with wheels?

The Zevex infinity pump tubing has to be stretched over the wheel too

but it has a plastic thing that you hold so it can be done one-

handed. If you want I'll take some pictures of the pump and bag so

you can see what I mean. The infinity is much lighter too.

Heidi

-- In , " Barbara Seaman "

wrote:

> Yes, I need a creative OT person. We have an IV pole that we use at

night,

> but I've tried pushing that around the house and know I can't. The

walker is

> a good idea. I have one, but I'd have to think about exactly how

that might

> work to hang the pump on it. Probably Hubby can figure that one

out. I have

> a tray that clips on it so I can move food and myself at the same

time but

> no other accessories.

>

>

>

> Thanks, Laurie

>

> B

>

>

>

[Guest guest]

Barbara,

I'm sorry you are having so much trouble with the Zevex. I use

it and do like it. This is my first pump, so I didn't think anything

about stretching the tubing around. This could pose a problem, but

hopefully an OT can think of something.

I used the Zevex backpack for awhile, but then found my own bag

that works. I don't have to mess with any velcro (except for the little

strip to open my bag), or straps. The pump works just as well in there.

I will sometimes drape the bag over the side of my walker, as I still

have one of the regular walkers- no seat or anything. It sometimes wants

to tip the walker over, but I am figuring out how to place it so it is

not tipping it over.

With the beeping, mine tends to go in spurts. It will get in

it's " head " , that there are air bubbles or something, which means taking

the tubing out and sort of tapping it to get air bubbles out. Sometimes

I do want to throw it against the wall or out the window, right Malisa?

:-) But, it usually goes most of the day and night without beeping. I

hope it works out for you.

Smiles,

a

On Wed, 6 Jul 2005 11:56:19 -0500 " Barbara Seaman "

wheatchild@...> writes:

I think there are several people in Mitoldies who use the Zevex pump.

Last

week I switched my Kangaroo for a Zevex to enable ambulatory fluid drip

in

the daytime and we are having several problems that we did not

anticipate.

In fact, we were quite discouraged when the Option Care person came to

the

house and did the demo, as we realized it was going to be

difficult-to-impossible for me to use the Zevex pump myself. I am

wondering

whether others have encountered these problems and if so, how you have

solved them.

1. Threading the tube through the Zevex is very difficult for me even on

a

good day and impossible on a bad day. That's because you have to manually

stretch the tube around the wheel, pulling it out a good 2 " longer to

clip

the other end into place. When the rep was here, I tried several times

and

could not stretch the tube far enough to snap it in place, and that was

an

average day as far as arm strength goes. On the Kangaroo, all you had to

do

was lay the tube in the track and the mechanical arm did all the

stretching

when it snapped shut. I had not heard any patients mention this feature

on

the Zevex, therefore had no idea the threading would require manual

stretching.

2. Even if I could get it threaded, I have a lot of difficulty getting

any

of the touch buttons to work. They require simultaneous pushing and

holding

for 2 seconds to activate, which was not true of the Kangaroo. Sometimes

I

couldn't push the Kangaroo buttons, but the problem is much bigger with

the

Zevex. I push and push until my finger is bent backwards, and the button

does not respond. (Yes, I also have trouble with microwave buttons, etc.)

For the rep and my husband, it looks so simple. A light touch and voila!

The

buttons work.

3. When the pump is in the carrying case (which it would be during the

day

when I am alone), you have to push the buttons through the soft plastic

window, which is even harder. So even if my husband did the threading and

loading before he left for work, I would have trouble with the buttons if

the pump beeps (which it did whenever the tube got crimped in the case).

To

have even a chance of getting the buttons to work, I would have to take

both

the bag and pump out of the carrier and try to get the buttons to respond

directly. Then reload the carrying case which is not simple for me. There

are elastic straps, Velcro holders, etc.

3. The weight of the pump and bag feels much heavier than I had

anticipated.

I am using the Zevex Sportpack carrier, which is much smaller than the

standard Zevex belt/backpack carrier. The pump and little 500 ml bag

total

only 2.5 pounds, but it feels like a pile of bricks when I try to get up

and

move. I had no idea it would feel that heavy. The weight alone would

really

discourage me from moving around, and adds further to balance problems.

This

inflated weight perception, I realize, is a function of weakness. That's

one

of the features of weakness, in fact, that the objects themselves--shoes,

a

glass of water, a book--feel like they're full of cement. As if the

problem

is with the object and not my body.

4. I had thought I could wear the Sportpack like a shoulder bag, but with

the weight it slips off. If I put the strap over my head and wear it

crosswise, the weight pulls on my neck and aggravates long-standing neck

problems. I can't wear a belt, and a backpack has to be taken off every

time

you sit down and put back on every time you get up. That too, would

discourage movement, which I do not want to do. I want to keep moving.

5. At night the Zevex is beeping a lot more than the Kangaroo, apparently

because it is more sensitive to tube crimps than the Kangaroo. True, the

Zevex does not beep with any tilting of the pump as the Kangaroo does.

However, in our experience, the Zevex is more sensitive to tube crimping.

With the Kangaroo we had worked out a way to tape the tube to my belly so

it

rarely beeped at night, even if I turned on my side. With the Zevex, I

cannot turn on my side without triggering beeping. Once it beeps, I

cannot

get the buttons to work (of course!) so I have to wake my husband to push

the buttons. He sleeps through the beeps and goes back to sleep quickly,

but

I do not. Add sleep disruption to the list of problems!

My doctors want me to pump daytime fluids for several reasons, in

addition

to nighttime formula, so we got the Zevex just for this purpose. Everyone

we

had talked too had only praise for the pump and said it was great, easy

to

use, etc. I realize the " problem " is with my particular physical

limitations

and not the pump. Thus we are trying to think creatively and figure out

ways

to make it work. My only idea at this point is to ask my PCP about a

consult

with an occupational therapist to see if they have any mechanical devices

that would enable me to stretch the tube and make the buttons work. I

have

no idea if such devices even exist.

Of course, I could go to a power chair around the house and park the

weight

of the bag and pump on the chair. That would solve the weight problem,

but

not the button problem. For several reasons I have been putting off using

a

power chair in the house for a long time and hope to do so longer.

I will post my questions to the tube feeding support group, but there are

only one or two adults in that group who use the Zevex and they do not

have

muscle disease.

Suggestions?

Thanks.

Barbara

[Guest guest]

Heidi,

I am trying to find a backpack with wheels, as I will soon have 2

pumps and 2 bags! I saw Malisa's when we were in Boston. You were in

getting your PICC line one day that I was there, but I didn't get the

chance to meet you. All I can think of is one of those suitcases on

wheels, but they seem so big. So, your explanation to Barbara would also

help me out!

Thanks and smiles,

a

On Thu, 7 Jul 2005 08:12:13 -0500 " Barbara Seaman "

wheatchild@...> writes:

Pictures would be most welcome, yes! And please explain the " backpack

with

wheels " ? My imagination can't quite stretch that far this morning. All I

come up with is a Dr. Seuss contraption. But hey, I'm willing to try

anything.

Thanks Heidi.

B

[Guest guest]

Aha, tipping the walker. I hadn't thought of that. See what you learn from

people in the trenches?

Thanks, a. I think we will figure out something. Obstacles are there

just to climb over, right?

Barbara

_____

From: [mailto: ] On Behalf

Of a C Koch

Sent: Thursday, July 07, 2005 8:12 AM

To:

Subject: Re: Zevex pump users--long

Barbara,

I'm sorry you are having so much trouble with the Zevex. I use

it and do like it. This is my first pump, so I didn't think anything

about stretching the tubing around. This could pose a problem, but

hopefully an OT can think of something.

I used the Zevex backpack for awhile, but then found my own bag

that works. I don't have to mess with any velcro (except for the little

strip to open my bag), or straps. The pump works just as well in there.

I will sometimes drape the bag over the side of my walker, as I still

have one of the regular walkers- no seat or anything. It sometimes wants

to tip the walker over, but I am figuring out how to place it so it is

not tipping it over.

With the beeping, mine tends to go in spurts. It will get in

it's " head " , that there are air bubbles or something, which means taking

the tubing out and sort of tapping it to get air bubbles out. Sometimes

I do want to throw it against the wall or out the window, right Malisa?

:-) But, it usually goes most of the day and night without beeping. I

hope it works out for you.

Smiles,

a

On Wed, 6 Jul 2005 11:56:19 -0500 " Barbara Seaman "

wheatchild@...> writes:

I think there are several people in Mitoldies who use the Zevex pump.

Last

week I switched my Kangaroo for a Zevex to enable ambulatory fluid drip

in

the daytime and we are having several problems that we did not

anticipate.

In fact, we were quite discouraged when the Option Care person came to

the

house and did the demo, as we realized it was going to be

difficult-to-impossible for me to use the Zevex pump myself. I am

wondering

whether others have encountered these problems and if so, how you have

solved them.

1. Threading the tube through the Zevex is very difficult for me even on

a

good day and impossible on a bad day. That's because you have to manually

stretch the tube around the wheel, pulling it out a good 2 " longer to

clip

the other end into place. When the rep was here, I tried several times

and

could not stretch the tube far enough to snap it in place, and that was

an

average day as far as arm strength goes. On the Kangaroo, all you had to

do

was lay the tube in the track and the mechanical arm did all the

stretching

when it snapped shut. I had not heard any patients mention this feature

on

the Zevex, therefore had no idea the threading would require manual

stretching.

2. Even if I could get it threaded, I have a lot of difficulty getting

any

of the touch buttons to work. They require simultaneous pushing and

holding

for 2 seconds to activate, which was not true of the Kangaroo. Sometimes

I

couldn't push the Kangaroo buttons, but the problem is much bigger with

the

Zevex. I push and push until my finger is bent backwards, and the button

does not respond. (Yes, I also have trouble with microwave buttons, etc.)

For the rep and my husband, it looks so simple. A light touch and voila!

The

buttons work.

3. When the pump is in the carrying case (which it would be during the

day

when I am alone), you have to push the buttons through the soft plastic

window, which is even harder. So even if my husband did the threading and

loading before he left for work, I would have trouble with the buttons if

the pump beeps (which it did whenever the tube got crimped in the case).

To

have even a chance of getting the buttons to work, I would have to take

both

the bag and pump out of the carrier and try to get the buttons to respond

directly. Then reload the carrying case which is not simple for me. There

are elastic straps, Velcro holders, etc.

3. The weight of the pump and bag feels much heavier than I had

anticipated.

I am using the Zevex Sportpack carrier, which is much smaller than the

standard Zevex belt/backpack carrier. The pump and little 500 ml bag

total

only 2.5 pounds, but it feels like a pile of bricks when I try to get up

and

move. I had no idea it would feel that heavy. The weight alone would

really

discourage me from moving around, and adds further to balance problems.

This

inflated weight perception, I realize, is a function of weakness. That's

one

of the features of weakness, in fact, that the objects themselves--shoes,

a

glass of water, a book--feel like they're full of cement. As if the

problem

is with the object and not my body.

4. I had thought I could wear the Sportpack like a shoulder bag, but with

the weight it slips off. If I put the strap over my head and wear it

crosswise, the weight pulls on my neck and aggravates long-standing neck

problems. I can't wear a belt, and a backpack has to be taken off every

time

you sit down and put back on every time you get up. That too, would

discourage movement, which I do not want to do. I want to keep moving.

5. At night the Zevex is beeping a lot more than the Kangaroo, apparently

because it is more sensitive to tube crimps than the Kangaroo. True, the

Zevex does not beep with any tilting of the pump as the Kangaroo does.

However, in our experience, the Zevex is more sensitive to tube crimping.

With the Kangaroo we had worked out a way to tape the tube to my belly so

it

rarely beeped at night, even if I turned on my side. With the Zevex, I

cannot turn on my side without triggering beeping. Once it beeps, I

cannot

get the buttons to work (of course!) so I have to wake my husband to push

the buttons. He sleeps through the beeps and goes back to sleep quickly,

but

I do not. Add sleep disruption to the list of problems!

My doctors want me to pump daytime fluids for several reasons, in

addition

to nighttime formula, so we got the Zevex just for this purpose. Everyone

we

had talked too had only praise for the pump and said it was great, easy

to

use, etc. I realize the " problem " is with my particular physical

limitations

and not the pump. Thus we are trying to think creatively and figure out

ways

to make it work. My only idea at this point is to ask my PCP about a

consult

with an occupational therapist to see if they have any mechanical devices

that would enable me to stretch the tube and make the buttons work. I

have

no idea if such devices even exist.

Of course, I could go to a power chair around the house and park the

weight

of the bag and pump on the chair. That would solve the weight problem,

but

not the button problem. For several reasons I have been putting off using

a

power chair in the house for a long time and hope to do so longer.

I will post my questions to the tube feeding support group, but there are

only one or two adults in that group who use the Zevex and they do not

have

muscle disease.

Suggestions?

Thanks.

Barbara

[Guest guest]

They have smaller versions of the " suitcase with wheels " , that are

essentially backpacks with wheels for kids to take to school. I'm

sure there are different sizes, as my son is in grammar school, and

there are some that have bags smaller than a regular size backpack

(much smaller than luggage).

a, I'm not 100% familiar with the pump, but could you put it

in a bag hanging down from the walker a bit (assuming it won't drag

on the floor LOL)? It would lower the center of gravity (might swing

a bit though) and make it less top-heavy.

I use my daughter's stroller as a " wheeled walker " a lot, the nice

part is that she is now near 30 lbs., so it doesn't tip over, but

when she was a little baby, it was quite a juggling act not to send

her bouncing in the air (I think I weigh a bit more than your pump

though)

Take care,

RH

> Heidi,

> I am trying to find a backpack with wheels, as I will soon

have 2

> pumps and 2 bags! I saw Malisa's when we were in Boston. You were

in

> getting your PICC line one day that I was there, but I didn't get

the

> chance to meet you. All I can think of is one of those suitcases on

> wheels, but they seem so big. So, your explanation to Barbara

would also

> help me out!

> Thanks and smiles,

> a

>

> On Thu, 7 Jul 2005 08:12:13 -0500 " Barbara Seaman "

> writes:

> Pictures would be most welcome, yes! And please explain

the " backpack

> with

> wheels " ? My imagination can't quite stretch that far this morning.

All I

> come up with is a Dr. Seuss contraption. But hey, I'm willing to try

> anything.

>

>

>

> Thanks Heidi.

>

> B

>

>

[Guest guest]

RH,

This is exactly what I was thinking of for Barbara, and what I planned to

use also. I see the kids using different sizes of the wheel backpacks as

they walk home from school.

I am following this tread very closely because I will also be getting a

pump. I was looking at the Zevex pump, but will make sure that I can

properly use it before I submit to it for long term. I heard this kind of

pump doesn't have to stay in an upright position and can be carried almost

any way without it getting bubbles in it, or it setting of the beeper

system. I sure hope it is true.

My doctor is setting me up to start TPN while I wait for my J tube surgery.

I will stay on the TPN for probably 3 months along with my J feeds.

Thanks for thoughts and suggestions, as I am sure the backpacks would work.

Hugs,

Ann-Marie

At 10:28 AM 7/7/2005, you wrote:

>To:

>

>Subject: Re: Zevex pump users--long

>

>

>They have smaller versions of the " suitcase with wheels " , that are

>essentially backpacks with wheels for kids to take to school. I'm

>sure there are different sizes, as my son is in grammar school, and

>there are some that have bags smaller than a regular size backpack

>(much smaller than luggage).

--

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[Guest guest]

Heidi,

What is the max amount of fluids the infinity can hold? And how much does

it weigh on its own? with the bags of formula/fluids?

btw, how are you feeling?

Thanks

Hugs,

Ann-Marie

At 07:44 AM 7/7/2005, you wrote:

>To:

>

>Subject: Re: Zevex pump users--long

>

>

>-Have you considered putting it in a backpack with wheels?

>The Zevex infinity pump tubing has to be stretched over the wheel too

>but it has a plastic thing that you hold so it can be done one-

>handed. If you want I'll take some pictures of the pump and bag so

>you can see what I mean. The infinity is much lighter too.

>Heidi

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[Guest guest]

I am hoping to switch from the zevex enteralyte to the infinity too. They seem

much smaller and lighter and the people who I know who have used them seem to

like them even better than the enteralytes.

I think getting a rolling backpack is a great idea for people who have more than

one pump or who have trouble carrying heavy backpacks. I put my TPN and TPN pump

and my zevex pump and tube feedings all on the bottom of a rolling backpack at

night. During the day, I have a small regular backpack that I put my TPN and

hydration in but it can get really heavy at times.

Malisa

Re: Zevex pump users--long

>

>

>-Have you considered putting it in a backpack with wheels?

>The Zevex infinity pump tubing has to be stretched over the wheel too

>but it has a plastic thing that you hold so it can be done one-

>handed. If you want I'll take some pictures of the pump and bag so

>you can see what I mean. The infinity is much lighter too.

>Heidi

--

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Version: 7.0.323 / Virus Database: 267.8.10/43 - Release Date: 7/6/2005

Medical advice, information, opinions, data and statements contained herein are

not necessarily those of the list moderators. The author of this e mail is

entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with their

physicians regarding changes in their own treatment.

Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

[Guest guest]

The backpack seems to be a good option for many people. The main

disadvantage is that you can't sit comfortably with it on. I need back and

neck support from a chair, so I would have to take it off. I don't walk much

and when I do it's short distances, often from chair to chair, so putting

the backpack off and on whenever I get up or sit down would be not be

practical for me. I am looking for something that does not discourage

getting up and moving around.

A person in my tubefeeding group suggested trying a " frontpack " that would

not have to be removed when sitting. This sounds like the best idea yet for

my particular limitations. I am going to try my small sportpack this way

with the strap shortened and worn like a " necklace. " The weight may still be

too much for my neck, but I'm going to try it. Had I known the weight of the

pump and bag alone would be a problem for me, I might have tried to get

approval for the lighter Infinity. I don't know if they would have accepted

that, given the extra expense, but it might have been worth a try. We had to

work hard to get approval to switch to the Zevex, because it does cost more

than the Kangaroo. I'm also going to see if the tube-pulling gizmo that

comes with the Infinity can be purchased separately and used with the

Enteralite.

Barbara

_____

From: [mailto: ] On Behalf

Of Ann-Marie Mc

Sent: Thursday, July 07, 2005 2:14 PM

To:

Subject: Re: Zevex pump users--long

RH,

This is exactly what I was thinking of for Barbara, and what I planned to

use also. I see the kids using different sizes of the wheel backpacks as

they walk home from school.

I am following this tread very closely because I will also be getting a

pump. I was looking at the Zevex pump, but will make sure that I can

properly use it before I submit to it for long term. I heard this kind of

pump doesn't have to stay in an upright position and can be carried almost

any way without it getting bubbles in it, or it setting of the beeper

system. I sure hope it is true.

My doctor is setting me up to start TPN while I wait for my J tube surgery.

I will stay on the TPN for probably 3 months along with my J feeds.

Thanks for thoughts and suggestions, as I am sure the backpacks would work.

Hugs,

Ann-Marie

At 10:28 AM 7/7/2005, you wrote:

>To:

>

>Subject: Re: Zevex pump users--long

>

>

>They have smaller versions of the " suitcase with wheels " , that are

>essentially backpacks with wheels for kids to take to school. I'm

>sure there are different sizes, as my son is in grammar school, and

>there are some that have bags smaller than a regular size backpack

>(much smaller than luggage).

--

No virus found in this outgoing message.

Checked by AVG Anti-Virus.

Version: 7.0.323 / Virus Database: 267.8.10/43 - Release Date: 7/6/2005

Medical advice, information, opinions, data and statements contained herein

are not necessarily those of the list moderators. The author of this e mail

is entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with

their physicians regarding changes in their own treatment.

Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

[Guest guest]

Thanks Malisa!!

Since I am so small and don't weigh alot I think I will look into the

infinity and see if that will meet my needs.

Hugs,

Ann-Marie

At 04:23 PM 7/7/2005, you wrote:

>I am hoping to switch from the zevex enteralyte to the infinity too. They

>seem much smaller and lighter and the people who I know who have used them

>seem to like them even better than the enteralytes.

>

>I think getting a rolling backpack is a great idea for people who have

>more than one pump or who have trouble carrying heavy backpacks. I put my

>TPN and TPN pump and my zevex pump and tube feedings all on the bottom of

>a rolling backpack at night. During the day, I have a small regular

>backpack that I put my TPN and hydration in but it can get really heavy at

>times.

>Malisa

>

> Re: Zevex pump users--long

> >

> >

> >-Have you considered putting it in a backpack with wheels?

> >The Zevex infinity pump tubing has to be stretched over the wheel too

> >but it has a plastic thing that you hold so it can be done one-

> >handed. If you want I'll take some pictures of the pump and bag so

> >you can see what I mean. The infinity is much lighter too.

> >Heidi

>

>

>--

>No virus found in this outgoing message.

>Checked by AVG Anti-Virus.

>Version: 7.0.323 / Virus Database: 267.8.10/43 - Release Date: 7/6/2005

>

>

>

>

>

>Medical advice, information, opinions, data and statements contained

>herein are

>not necessarily those of the list moderators. The author of this e mail is

>entirely responsible for its content. List members are reminded of their

>responsibility to evaluate the content of the postings and consult with their

>physicians regarding changes in their own treatment.

>

>Personal attacks are not permitted on the list and anyone who sends one is

>automatically moderated or removed depending on the severity of the attack.

>

>

[Guest guest]

Barbara

The backpack on wheels could be set next to a chair and then pulled when up.

What about a front pack that is made for babies?

laurie

> The backpack seems to be a good option for many people. The main

> disadvantage is that you can't sit comfortably with it on. I need back and

> neck support from a chair, so I would have to take it off. I don't walk much

> and when I do it's short distances, often from chair to chair, so putting

> the backpack off and on whenever I get up or sit down would be not be

> practical for me. I am looking for something that does not discourage

> getting up and moving around.

>

>

>

> A person in my tubefeeding group suggested trying a " frontpack " that would

> not have to be removed when sitting. This sounds like the best idea yet for

> my particular limitations. I am going to try my small sportpack this way

> with the strap shortened and worn like a " necklace. " The weight may still be

> too much for my neck, but I'm going to try it. Had I known the weight of the

> pump and bag alone would be a problem for me, I might have tried to get

> approval for the lighter Infinity. I don't know if they would have accepted

> that, given the extra expense, but it might have been worth a try. We had to

> work hard to get approval to switch to the Zevex, because it does cost more

> than the Kangaroo. I'm also going to see if the tube-pulling gizmo that

> comes with the Infinity can be purchased separately and used with the

> Enteralite.

>

>

>

> Barbara

>

>

>

> _____

>

> From: [mailto: ] On Behalf

> Of Ann-Marie Mc

> Sent: Thursday, July 07, 2005 2:14 PM

> To:

> Subject: Re: Zevex pump users--long

>

>

>

>

> RH,

>

> This is exactly what I was thinking of for Barbara, and what I planned to

> use also. I see the kids using different sizes of the wheel backpacks as

> they walk home from school.

>

> I am following this tread very closely because I will also be getting a

> pump. I was looking at the Zevex pump, but will make sure that I can

> properly use it before I submit to it for long term. I heard this kind of

> pump doesn't have to stay in an upright position and can be carried almost

> any way without it getting bubbles in it, or it setting of the beeper

> system. I sure hope it is true.

>

> My doctor is setting me up to start TPN while I wait for my J tube surgery.

> I will stay on the TPN for probably 3 months along with my J feeds.

>

> Thanks for thoughts and suggestions, as I am sure the backpacks would work.

>

> Hugs,

> Ann-Marie

>

>

>

>

>

>

>

> At 10:28 AM 7/7/2005, you wrote:

> >To:

> >

> >Subject: Re: Zevex pump users--long

> >

> >

> >They have smaller versions of the " suitcase with wheels " , that are

> >essentially backpacks with wheels for kids to take to school. I'm

> >sure there are different sizes, as my son is in grammar school, and

> >there are some that have bags smaller than a regular size backpack

> >(much smaller than luggage).

>

>

> --

> No virus found in this outgoing message.

> Checked by AVG Anti-Virus.

> Version: 7.0.323 / Virus Database: 267.8.10/43 - Release Date: 7/6/2005

>

>

>

>

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail

> is entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with

> their physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

>

>

>

>

>

[Guest guest]

HI, Barbara

This old back sufferer is going to put her $0.02 in here. Three

cheers for small rolling luggage! It has been a real life saver for

me. Forgive me if I am missing the point for your needs. I just want

to tell you there is a variety of small " carry on " type of luggage,

some of which also may function as back packs, with wheels. The way

they open varries, and the ease of handles, etc, also varries. I

believe the thought would be for you to keep it on the ground and roll

it, exclusively; at least that is how I interpreted it. It seemed like

such a neat solution! Yet, I do not know the needs you have, and maybe

I am all wrong. I do know when I went out recently to buy one for

traveling I was pleased to see the great variety in shapes, how they

roll and how they open. No longer just the old flat little suitcase

with wheels that the airline attendants had. Some are like large

satchels, others like a large purse, with the zipper down the middle,

but all having the handle and wheels. That apparatus does add weight

to them, so the only approach is to keeping it on the ground. I found

different ones, at good prices, in some of the major " reasonable "

stores like TJMaxx, and Marshals. I would guess they could be found

online also. I will try to look, to see if I can find some examples

online, if you like. Again, if I have missed the point, sorry. I just

want to encourage you to look at them, because they are just so darned

handy and clever, and one might help a little.

Best regards to you always, Barbara.

Sunny

> The backpack seems to be a good option for many people. The main

> disadvantage is that you can't sit comfortably with it on. I need

> back and

> neck support from a chair, so I would have to take it off. I don't

> walk much

> and when I do it's short distances, often from chair to chair, so

> putting

> the backpack off and on whenever I get up or sit down would be not be

> practical for me. I am looking for something that does not discourage

> getting up and moving around.

>

>

>

> A person in my tubefeeding group suggested trying a " frontpack " that

> would

> not have to be removed when sitting. This sounds like the best idea

> yet for

> my particular limitations. I am going to try my small sportpack this

> way

> with the strap shortened and worn like a " necklace. " The weight may

> still be

> too much for my neck, but I'm going to try it. Had I known the weight

> of the

> pump and bag alone would be a problem for me, I might have tried to

> get

> approval for the lighter Infinity. I don't know if they would have

> accepted

> that, given the extra expense, but it might have been worth a try. We

> had to

> work hard to get approval to switch to the Zevex, because it does

> cost more

> than the Kangaroo. I'm also going to see if the tube-pulling gizmo

> that

> comes with the Infinity can be purchased separately and used with the

> Enteralite.

>

>

>

> Barbara

>

>

>

>   _____ 

>

> From: [mailto: ] On

> Behalf

> Of Ann-Marie Mc

> Sent: Thursday, July 07, 2005 2:14 PM

> To:

> Subject: Re: Zevex pump users--long

>

>

>

>

> RH,

>

> This is exactly what I was thinking of for Barbara, and what I

> planned to

> use also. I see the kids using different sizes of the wheel backpacks

> as

> they walk home from school.

>

> I am following this tread very closely because I will also be getting

> a

> pump. I was looking at the Zevex pump, but will make sure that I can

> properly use it before I submit to it for long term. I heard this

> kind of

> pump doesn't have to stay in an upright position and can be carried

> almost

> any way without it getting bubbles in it, or it setting of the beeper

> system. I sure hope it is true.

>

> My doctor is setting me up to start TPN while I wait for my J tube

> surgery.

> I will stay on the TPN for probably 3 months along with my J feeds.

>

> Thanks for thoughts and suggestions, as I am sure the backpacks would

> work.

>

> Hugs,

> Ann-Marie

>

>

>

>

>

>

>

> At 10:28 AM 7/7/2005, you wrote:

> >To:

> >

> >Subject: Re: Zevex pump users--long

> >

> >

> >They have smaller versions of the " suitcase with wheels " , that are

> >essentially backpacks with wheels for kids to take to school.  I'm

> >sure there are different sizes, as my son is in grammar school, and

> >there are some that have bags smaller than a regular size backpack

> >(much smaller than luggage).

>

>

> --

> No virus found in this outgoing message.

> Checked by AVG Anti-Virus.

> Version: 7.0.323 / Virus Database: 267.8.10/43 - Release Date:

> 7/6/2005

>

>

>

>

>

> Medical advice, information, opinions, data and statements contained

> herein

> are not necessarily those of the list moderators. The author of this

> e mail

> is entirely responsible for its content. List members are reminded of

> their

> responsibility to evaluate the content of the postings and consult

> with

> their physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends

> one is

> automatically moderated or removed depending on the severity of the

> attack.

>

>

>

>

>

>