Zevex pump users--long

[Guest guest]

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