Guest guest Posted July 7, 2005 Report Share Posted July 7, 2005 Hi Barb, I've got a lot going on right now and have been quiet for some time, but I have been reading and wanted to respond to your zevex post. I do use a zevex enteralite. I have many of the same issues that you identify. Some of them I deal with having my PCA set up my tube feedings in the a.m. (I run 24 hours a day at 55ml/hr so it is a very slow process). I do not use the zevex backpack or waistpack system as we found them too difficult to deal with. Instead I purchased a camelback hydration backpack. The pump and my 1200ml bag fit nicely into the insulated compartment and offer much easier access if I have an alarm. I do use a power wheelchair full time and my zevex hangs on the back of my wheelchair along with my curlin pump and hydration. There is no way I could handle the weight even for transfers. As far as the buttons on the zevex go they are difficult. When I first got my power chair they brought me these little hard sticky dots to place over the buttons I was having a hard time pressing. They are clear. I did not need them on my wheelchair, but they are invaluable on my pumps! I find they give me just enough ability to get the buttons pressed and hold them for the time needed. I'm sure an OT would know what they are called. Another thought would be to use the eraser end of a pencil which I've had to do a few times. About the tubing and bags: Do your bags have blue or teal tops? The reason I ask is because zevex changed over to the teal ones about 6 months ago (a very good thing), but occasionally the blue ones are still floating around. My PCA and I had terrible times with those blue bags and the lines kinking. It is much better with the teal ones. In terms of the stretching of the line around the wheel: I'm not sure what to suggest there, but one piece of advice. Don't over-stretch it. I found my PCA was doing this and as a result we were having many more alarms and wasted pump sets than we needed to. Also, one final thought.at night I hook my pumps up to an IV pole is there anyway you could have them connected to the pole throughout the day and have the pole bear the weight of the pump and fluids? Good luck. Kristie Message: 6 Date: Wed, 6 Jul 2005 11:56:19 -0500 Subject: Zevex pump users--long 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 Love and Hugs, Kristie www.caringbridge.org/pa/kristie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2005 Report Share Posted July 7, 2005 Barb, I've done more creative things with cable ties, caribiners and Velcro straps. I'm sure your hubby can come up with something that will work with your walker. Kristie Message: 8 Date: Wed, 6 Jul 2005 12:40:57 -0500 Subject: RE: Zevex pump users--long 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. Love and Hugs, Kristie www.caringbridge.org/pa/kristie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2005 Report Share Posted July 8, 2005 Kristie, my lifesaver! Thank you so much for taking the time and effort to respond. Definitely you understand where I am. I will print and save to show to the OT. The clear sticky button thingy sounds great. I will inquire. Yes, I had wondered about using a pencil or penpoint on the buttons. I suppose my son could explain the physics of it, but something about concentrating the point of effort. My husband is willing to load the pack every morning, which would solve the loading problem. The big problem now is the weight. I really don't see how I could pull a backpack on wheels by hand all day, as some have suggested. I'm just not at a place physically where that is possible. (My husband laughed when I offered this suggestion.) It may mean that if they really want me to use the pump daytime I will have to go to a chair. I will check out the camelback hydration backpack. Thanks for that suggestion. Yes, my bags have blue tops! No wonder we are having so much trouble with beeps. We will ask Option Care to get the teal tops when we order. And I will pass on your advice about not over-stretching the tubes to my husband. That may be contributing to our beeps. We do have an IV pole we use at night. We are still waiting for the zevex pole clamp, so right now we're just hanging the bag on the pole. As for daytime IV pole, I find it very difficult to push my IV pole on our carpet. (I don't suppose my insurance wants to pay for hardwood floors!) But in some ways the IV pole might be easier than wearing the weight or pulling a backpack. Not sure. Again, thanks a bunch. These are great suggestions. I hope things settle down for you soon. Take care, Barbara _____ From: [mailto: ] On Behalf Of Kristie Palmer Sent: Thursday, July 07, 2005 4:58 PM To: Mitoldies Subject: Zevex pump users--long Hi Barb, I've got a lot going on right now and have been quiet for some time, but I have been reading and wanted to respond to your zevex post. I do use a zevex enteralite. I have many of the same issues that you identify. Some of them I deal with having my PCA set up my tube feedings in the a.m. (I run 24 hours a day at 55ml/hr so it is a very slow process). I do not use the zevex backpack or waistpack system as we found them too difficult to deal with. Instead I purchased a camelback hydration backpack. The pump and my 1200ml bag fit nicely into the insulated compartment and offer much easier access if I have an alarm. I do use a power wheelchair full time and my zevex hangs on the back of my wheelchair along with my curlin pump and hydration. There is no way I could handle the weight even for transfers. As far as the buttons on the zevex go they are difficult. When I first got my power chair they brought me these little hard sticky dots to place over the buttons I was having a hard time pressing. They are clear. I did not need them on my wheelchair, but they are invaluable on my pumps! I find they give me just enough ability to get the buttons pressed and hold them for the time needed. I'm sure an OT would know what they are called. Another thought would be to use the eraser end of a pencil which I've had to do a few times. About the tubing and bags: Do your bags have blue or teal tops? The reason I ask is because zevex changed over to the teal ones about 6 months ago (a very good thing), but occasionally the blue ones are still floating around. My PCA and I had terrible times with those blue bags and the lines kinking. It is much better with the teal ones. In terms of the stretching of the line around the wheel: I'm not sure what to suggest there, but one piece of advice. Don't over-stretch it. I found my PCA was doing this and as a result we were having many more alarms and wasted pump sets than we needed to. Also, one final thought.at night I hook my pumps up to an IV pole is there anyway you could have them connected to the pole throughout the day and have the pole bear the weight of the pump and fluids? Good luck. Kristie Message: 6 Date: Wed, 6 Jul 2005 11:56:19 -0500 Subject: Zevex pump users--long 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 Love and Hugs, Kristie www.caringbridge.org/pa/kristie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2005 Report Share Posted July 8, 2005 Button pushing devices for people with arthritis might help you, here are some examples: http://www.lifehome.com/products/7443.asp http://www.grovergear.com/hand-aids.html For pushing more than one button, you could improvise starting with one of the above devices, or build something with lego (I know, sounds crazy but might work) or a wire hanger. I wonder if someone at the manufacturer might have some ideas to help you push the buttons... And if you use the clear dots to raise up the surfaces of the buttons, you might be able to use a stick or bar to push the buttons together. This might be a stupid question, but have you tried pushing buttons with your knuckle instead of fingertip? This enables me to push difficult buttons easier. I studied bioengineering at one point, so I'm always thinking about ergonomic/accessibility type issues LOL. Take care, RH > Kristie, my lifesaver! Thank you so much for taking the time and effort to > respond. Definitely you understand where I am. I will print and save to show > to the OT. The clear sticky button thingy sounds great. I will inquire. > Yes, I had wondered about using a pencil or penpoint on the buttons. I > suppose my son could explain the physics of it, but something about > concentrating the point of effort. My husband is willing to load the pack > every morning, which would solve the loading problem. The big problem now is > the weight. I really don't see how I could pull a backpack on wheels by hand > all day, as some have suggested. I'm just not at a place physically where > that is possible. (My husband laughed when I offered this suggestion.) It > may mean that if they really want me to use the pump daytime I will have to > go to a chair. > > > > I will check out the camelback hydration backpack. Thanks for that > suggestion. Yes, my bags have blue tops! No wonder we are having so much > trouble with beeps. We will ask Option Care to get the teal tops when we > order. And I will pass on your advice about not over-stretching the tubes to > my husband. That may be contributing to our beeps. > > > > We do have an IV pole we use at night. We are still waiting for the zevex > pole clamp, so right now we're just hanging the bag on the pole. As for > daytime IV pole, I find it very difficult to push my IV pole on our carpet. > (I don't suppose my insurance wants to pay for hardwood floors!) But in some > ways the IV pole might be easier than wearing the weight or pulling a > backpack. Not sure. > > > > Again, thanks a bunch. These are great suggestions. I hope things settle > down for you soon. > > > > Take care, > > Barbara > > > > > > _____ > > From: [mailto: ] On Behalf > Of Kristie Palmer > Sent: Thursday, July 07, 2005 4:58 PM > To: Mitoldies > Subject: Zevex pump users--long > > > > Hi Barb, > > > > I've got a lot going on right now and have been quiet for some time, but I > have been reading and wanted to respond to your zevex post. > > > > I do use a zevex enteralite. I have many of the same issues that you > identify. Some of them I deal with having my PCA set up my tube feedings in > the a.m. (I run 24 hours a day at 55ml/hr so it is a very slow process). I > do not use the zevex backpack or waistpack system as we found them too > difficult to deal with. Instead I purchased a camelback hydration backpack. > The pump and my 1200ml bag fit nicely into the insulated compartment and > offer much easier access if I have an alarm. I do use a power wheelchair > full time and my zevex hangs on the back of my wheelchair along with my > curlin pump and hydration. There is no way I could handle the weight even > for transfers. As far as the buttons on the zevex go they are difficult. > When I first got my power chair they brought me these little hard sticky > dots to place over the buttons I was having a hard time pressing. They are > clear. I did not need them on my wheelchair, but they are invaluable on my > pumps! I find they give me just enough ability to get the buttons pressed > and hold them for the time needed. I'm sure an OT would know what they are > called. Another thought would be to use the eraser end of a pencil which > I've had to do a few times. About the tubing and bags: Do your bags have > blue or teal tops? The reason I ask is because zevex changed over to the > teal ones about 6 months ago (a very good thing), but occasionally the blue > ones are still floating around. My PCA and I had terrible times with those > blue bags and the lines kinking. It is much better with the teal ones. In > terms of the stretching of the line around the wheel: I'm not sure what to > suggest there, but one piece of advice. Don't over-stretch it. I found my > PCA was doing this and as a result we were having many more alarms and > wasted pump sets than we needed to. Also, one final thought.at night I > hook my pumps up to an IV pole is there anyway you could have them connected > to the pole throughout the day and have the pole bear the weight of the pump > and fluids? Good luck. > > Kristie > > > > > > Message: 6 > > Date: Wed, 6 Jul 2005 11:56:19 -0500 > > From: " Barbara Seaman " > > Subject: Zevex pump users--long > > > > 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 > > > > Love and Hugs, > > Kristie > > www.caringbridge.org/pa/kristie > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2005 Report Share Posted July 8, 2005 Thanks a lot for the details, Sunny. Very helpful. I will send hubby out to the local dept stores and see what he can find. What would I do without this group? You always help me think outside the box. B _____ From: [mailto: ] On Behalf Of z39z@... Sent: Thursday, July 07, 2005 5:20 PM To: Subject: Re: Zevex pump users--long 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. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2005 Report Share Posted July 8, 2005 Thanks, RH. Much appreciated. Knuckles don't work any better in my case, but I will check out these button links. Maybe I need to enlist my mechanical engineering son. He's the one who dreamed up the mirror on my bookstand for watching tv when lying down. Take care, Barbara _____ From: [mailto: ] On Behalf Of ohgminion Sent: Friday, July 08, 2005 11:47 AM To: Subject: Re: Zevex pump users--long Button pushing devices for people with arthritis might help you, here are some examples: http://www.lifehome.com/products/7443.asp http://www.grovergear.com/hand-aids.html For pushing more than one button, you could improvise starting with one of the above devices, or build something with lego (I know, sounds crazy but might work) or a wire hanger. I wonder if someone at the manufacturer might have some ideas to help you push the buttons... And if you use the clear dots to raise up the surfaces of the buttons, you might be able to use a stick or bar to push the buttons together. This might be a stupid question, but have you tried pushing buttons with your knuckle instead of fingertip? This enables me to push difficult buttons easier. I studied bioengineering at one point, so I'm always thinking about ergonomic/accessibility type issues LOL. Take care, RH > Kristie, my lifesaver! Thank you so much for taking the time and effort to > respond. Definitely you understand where I am. I will print and save to show > to the OT. The clear sticky button thingy sounds great. I will inquire. > Yes, I had wondered about using a pencil or penpoint on the buttons. I > suppose my son could explain the physics of it, but something about > concentrating the point of effort. My husband is willing to load the pack > every morning, which would solve the loading problem. The big problem now is > the weight. I really don't see how I could pull a backpack on wheels by hand > all day, as some have suggested. I'm just not at a place physically where > that is possible. (My husband laughed when I offered this suggestion.) It > may mean that if they really want me to use the pump daytime I will have to > go to a chair. > > > > I will check out the camelback hydration backpack. Thanks for that > suggestion. Yes, my bags have blue tops! No wonder we are having so much > trouble with beeps. We will ask Option Care to get the teal tops when we > order. And I will pass on your advice about not over-stretching the tubes to > my husband. That may be contributing to our beeps. > > > > We do have an IV pole we use at night. We are still waiting for the zevex > pole clamp, so right now we're just hanging the bag on the pole. As for > daytime IV pole, I find it very difficult to push my IV pole on our carpet. > (I don't suppose my insurance wants to pay for hardwood floors!) But in some > ways the IV pole might be easier than wearing the weight or pulling a > backpack. Not sure. > > > > Again, thanks a bunch. These are great suggestions. I hope things settle > down for you soon. > > > > Take care, > > Barbara > > > > > > _____ > > From: [mailto: ] On Behalf > Of Kristie Palmer > Sent: Thursday, July 07, 2005 4:58 PM > To: Mitoldies > Subject: Zevex pump users--long > > > > Hi Barb, > > > > I've got a lot going on right now and have been quiet for some time, but I > have been reading and wanted to respond to your zevex post. > > > > I do use a zevex enteralite. I have many of the same issues that you > identify. Some of them I deal with having my PCA set up my tube feedings in > the a.m. (I run 24 hours a day at 55ml/hr so it is a very slow process). I > do not use the zevex backpack or waistpack system as we found them too > difficult to deal with. Instead I purchased a camelback hydration backpack. > The pump and my 1200ml bag fit nicely into the insulated compartment and > offer much easier access if I have an alarm. I do use a power wheelchair > full time and my zevex hangs on the back of my wheelchair along with my > curlin pump and hydration. There is no way I could handle the weight even > for transfers. As far as the buttons on the zevex go they are difficult. > When I first got my power chair they brought me these little hard sticky > dots to place over the buttons I was having a hard time pressing. They are > clear. I did not need them on my wheelchair, but they are invaluable on my > pumps! I find they give me just enough ability to get the buttons pressed > and hold them for the time needed. I'm sure an OT would know what they are > called. Another thought would be to use the eraser end of a pencil which > I've had to do a few times. About the tubing and bags: Do your bags have > blue or teal tops? The reason I ask is because zevex changed over to the > teal ones about 6 months ago (a very good thing), but occasionally the blue > ones are still floating around. My PCA and I had terrible times with those > blue bags and the lines kinking. It is much better with the teal ones. In > terms of the stretching of the line around the wheel: I'm not sure what to > suggest there, but one piece of advice. Don't over-stretch it. I found my > PCA was doing this and as a result we were having many more alarms and > wasted pump sets than we needed to. Also, one final thought.at night I > hook my pumps up to an IV pole is there anyway you could have them connected > to the pole throughout the day and have the pole bear the weight of the pump > and fluids? Good luck. > > Kristie > > > > > > Message: 6 > > Date: Wed, 6 Jul 2005 11:56:19 -0500 > > From: " Barbara Seaman " > > Subject: Zevex pump users--long > > > > 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 > > > > Love and Hugs, > > Kristie > > www.caringbridge.org/pa/kristie > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2005 Report Share Posted July 8, 2005 Yes, he definitely seems like someone who would help put together a few gizmos to help you out. Sometimes things to help us are right under our noses - I use my bed for a changing table, so I can sit and control the baby better. I couldn't stand up to use a regular changing table, and for a time, I was looking into changing tables that were strong enough to lean on, but finally figured out that the bed (with a changing pad on it LOL) makes it easy to sit down and change a diaper. And it's lower than a changing table, so less fear of the baby falling off if I'm too busy trying to stand up myself. I also use a walker for leaning on when sitting, and one of those " grabbers " to pull the sheet or blanket over me in bed. Take care, RH > > Kristie, my lifesaver! Thank you so much for taking the time and > effort to > > respond. Definitely you understand where I am. I will print and > save to show > > to the OT. The clear sticky button thingy sounds great. I will > inquire. > > Yes, I had wondered about using a pencil or penpoint on the > buttons. I > > suppose my son could explain the physics of it, but something about > > concentrating the point of effort. My husband is willing to load > the pack > > every morning, which would solve the loading problem. The big > problem now is > > the weight. I really don't see how I could pull a backpack on > wheels by hand > > all day, as some have suggested. I'm just not at a place physically > where > > that is possible. (My husband laughed when I offered this > suggestion.) It > > may mean that if they really want me to use the pump daytime I will > have to > > go to a chair. > > > > > > > > I will check out the camelback hydration backpack. Thanks for that > > suggestion. Yes, my bags have blue tops! No wonder we are having so > much > > trouble with beeps. We will ask Option Care to get the teal tops > when we > > order. And I will pass on your advice about not over-stretching the > tubes to > > my husband. That may be contributing to our beeps. > > > > > > > > We do have an IV pole we use at night. We are still waiting for > the zevex > > pole clamp, so right now we're just hanging the bag on the pole. As > for > > daytime IV pole, I find it very difficult to push my IV pole on our > carpet. > > (I don't suppose my insurance wants to pay for hardwood floors!) > But in some > > ways the IV pole might be easier than wearing the weight or pulling > a > > backpack. Not sure. > > > > > > > > Again, thanks a bunch. These are great suggestions. I hope things > settle > > down for you soon. > > > > > > > > Take care, > > > > Barbara > > > > > > > > > > > > _____ > > > > From: [mailto: ] > On Behalf > > Of Kristie Palmer > > Sent: Thursday, July 07, 2005 4:58 PM > > To: Mitoldies > > Subject: Zevex pump users--long > > > > > > > > Hi Barb, > > > > > > > > I've got a lot going on right now and have been quiet for some > time, but I > > have been reading and wanted to respond to your zevex post. > > > > > > > > I do use a zevex enteralite. I have many of the same issues that > you > > identify. Some of them I deal with having my PCA set up my tube > feedings in > > the a.m. (I run 24 hours a day at 55ml/hr so it is a very slow > process). I > > do not use the zevex backpack or waistpack system as we found them > too > > difficult to deal with. Instead I purchased a camelback hydration > backpack. > > The pump and my 1200ml bag fit nicely into the insulated > compartment and > > offer much easier access if I have an alarm. I do use a power > wheelchair > > full time and my zevex hangs on the back of my wheelchair along > with my > > curlin pump and hydration. There is no way I could handle the > weight even > > for transfers. As far as the buttons on the zevex go they are > difficult. > > When I first got my power chair they brought me these little hard > sticky > > dots to place over the buttons I was having a hard time pressing. > They are > > clear. I did not need them on my wheelchair, but they are > invaluable on my > > pumps! I find they give me just enough ability to get the buttons > pressed > > and hold them for the time needed. I'm sure an OT would know what > they are > > called. Another thought would be to use the eraser end of a pencil > which > > I've had to do a few times. About the tubing and bags: Do your > bags have > > blue or teal tops? The reason I ask is because zevex changed over > to the > > teal ones about 6 months ago (a very good thing), but occasionally > the blue > > ones are still floating around. My PCA and I had terrible times > with those > > blue bags and the lines kinking. It is much better with the teal > ones. In > > terms of the stretching of the line around the wheel: I'm not sure > what to > > suggest there, but one piece of advice. Don't over-stretch it. I > found my > > PCA was doing this and as a result we were having many more alarms > and > > wasted pump sets than we needed to. Also, one final thought.at > night I > > hook my pumps up to an IV pole is there anyway you could have them > connected > > to the pole throughout the day and have the pole bear the weight of > the pump > > and fluids? Good luck. > > > > Kristie > > > > > > > > > > > > Message: 6 > > > > Date: Wed, 6 Jul 2005 11:56:19 -0500 > > > > From: " Barbara Seaman " > > > > Subject: Zevex pump users--long > > > > > > > > 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 > > > > > > > > Love and Hugs, > > > > Kristie > > > > www.caringbridge.org/pa/kristie > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2005 Report Share Posted July 9, 2005 Barbara, I had a few other thoughts while lying awake in bed the other night. LOL. Could you use a pair of 90 degree needle nose pliers to pull the plastic block into place? The kind used by beaders (found in arts and crafts stores)? They may give you more leverage (which is the word I couldn't think of the other day). With your IV pole my father replaced the wheels on mine with slightly larger ones. This had made all the difference in the world when it comes to rolling on carpet which we have only in my bedroom. He also flipped the base unit around to give more ground clearance. It was a big help and a relatively easy " fix " . You may find that going to a chair offers you the ability to have more energy in the long run to do other things . I am a lot more independent with mine for sure. Just my humble opinion. Also, don't hesitate to call the folks at zevex . They are most helpful. I have had the most contact with Paola Guitierrez one of the customer service representatives. She goes out of her way to resolve any issues and is very GOOD at her job! Good Luck, Kristie Message: 1 Date: Fri, 8 Jul 2005 08:32:14 -0500 Subject: RE: Zevex pump users--long Kristie, my lifesaver! Thank you so much for taking the time and effort to respond. Definitely you understand where I am. I will print and save to show to the OT. The clear sticky button thingy sounds great. I will inquire. Yes, I had wondered about using a pencil or penpoint on the buttons. I suppose my son could explain the physics of it, but something about concentrating the point of effort. My husband is willing to load the pack every morning, which would solve the loading problem. The big problem now is the weight. I really don't see how I could pull a backpack on wheels by hand all day, as some have suggested. I'm just not at a place physically where that is possible. (My husband laughed when I offered this suggestion.) It may mean that if they really want me to use the pump daytime I will have to go to a chair. I will check out the camelback hydration backpack. Thanks for that suggestion. Yes, my bags have blue tops! No wonder we are having so much trouble with beeps. We will ask Option Care to get the teal tops when we order. And I will pass on your advice about not over-stretching the tubes to my husband. That may be contributing to our beeps. We do have an IV pole we use at night. We are still waiting for the zevex pole clamp, so right now we're just hanging the bag on the pole. As for daytime IV pole, I find it very difficult to push my IV pole on our carpet. (I don't suppose my insurance wants to pay for hardwood floors!) But in some ways the IV pole might be easier than wearing the weight or pulling a backpack. Not sure. Again, thanks a bunch. These are great suggestions. I hope things settle down for you soon. Take care, Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2005 Report Share Posted July 9, 2005 Oh, you have good thoughts in the night! (I get some of my best ideas in the night too.) Yes, yes, the pliers make sense. Definitely worth a try. We will check Hobby Lobby for this particular kind. I did order a " button pusher " from the link that RH provided (thank you, RH!) and I am hopeful that will at last make the buttons " work. " IV pole also makes sense. I think we could manage that kind of fix. We own the pole anyway, so no problem making changes. I hear you on the chair. I am more ready to think about it than my family, but this is usually the case. I WANT more energy, and if the chair could accomplish that, it would improve my life considerably. I have decided to talk to my PCP about it when I see him in a couple of weeks. Also glad to know the zevex people are helpful. The Option Care people have limited experience with zevex pumps, so it's good to know more expert help is available. Thank you thank you! Barbara _____ From: [mailto: ] On Behalf Of Kristie Palmer Sent: Saturday, July 09, 2005 9:04 AM To: Mitoldies Subject: RE: Zevex pump users--long Barbara, I had a few other thoughts while lying awake in bed the other night. LOL. Could you use a pair of 90 degree needle nose pliers to pull the plastic block into place? The kind used by beaders (found in arts and crafts stores)? They may give you more leverage (which is the word I couldn't think of the other day). With your IV pole my father replaced the wheels on mine with slightly larger ones. This had made all the difference in the world when it comes to rolling on carpet which we have only in my bedroom. He also flipped the base unit around to give more ground clearance. It was a big help and a relatively easy " fix " . You may find that going to a chair offers you the ability to have more energy in the long run to do other things . I am a lot more independent with mine for sure. Just my humble opinion. Also, don't hesitate to call the folks at zevex . They are most helpful. I have had the most contact with Paola Guitierrez one of the customer service representatives. She goes out of her way to resolve any issues and is very GOOD at her job! Good Luck, Kristie Message: 1 Date: Fri, 8 Jul 2005 08:32:14 -0500 Subject: RE: Zevex pump users--long Kristie, my lifesaver! Thank you so much for taking the time and effort to respond. Definitely you understand where I am. I will print and save to show to the OT. The clear sticky button thingy sounds great. I will inquire. Yes, I had wondered about using a pencil or penpoint on the buttons. I suppose my son could explain the physics of it, but something about concentrating the point of effort. My husband is willing to load the pack every morning, which would solve the loading problem. The big problem now is the weight. I really don't see how I could pull a backpack on wheels by hand all day, as some have suggested. I'm just not at a place physically where that is possible. (My husband laughed when I offered this suggestion.) It may mean that if they really want me to use the pump daytime I will have to go to a chair. I will check out the camelback hydration backpack. Thanks for that suggestion. Yes, my bags have blue tops! No wonder we are having so much trouble with beeps. We will ask Option Care to get the teal tops when we order. And I will pass on your advice about not over-stretching the tubes to my husband. That may be contributing to our beeps. We do have an IV pole we use at night. We are still waiting for the zevex pole clamp, so right now we're just hanging the bag on the pole. As for daytime IV pole, I find it very difficult to push my IV pole on our carpet. (I don't suppose my insurance wants to pay for hardwood floors!) But in some ways the IV pole might be easier than wearing the weight or pulling a backpack. Not sure. Again, thanks a bunch. These are great suggestions. I hope things settle down for you soon. Take care, Barbara Quote Link to comment Share on other sites More sharing options...
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