- Meet Consumers/Patients
Bright Ideas from Our Readers
We have received a barrage of tips from our readers lately. With the hope they make your life easier or more affordabe, we are sharing them with you on these pages. Please note the Oley Foundation has not tested any of these products and is in no way endorsing them. As always, check with your physician before making any changes in your health care.
Homemade Mini IV Stand Convenient to Use
I began on HPN about three years ago, infusing overnight using a standard IV pole to hold the formula and the pump. The pole had the advantage of hanging the formula bag upright so any air bubbles in the bag would rise rather than entering the pump. It also had the advantage of making the bag and the pump visible. If the pump sounded during the night, it was easy to reach over and remedy the problem. The disadvantage of the IV pole was that it was noisy on our wood floors when I had to get up in the night to use the bathroom, and carrying the IV pole up and down stairs with the formula bag attached was a cumbersome task.
When I changed health care companies, my new company provided me with an ingenious backpack that could be carried by a single handle like a brief case. The formula bag fit inside along with the pump, and the line extended out of the case through a small hole. This was much more convenient to carry with me, but I had to carefully bleed the formula bag of any bubbles, and if the pump went off in the night, it meant opening the bag and fishing the pump out of its clever Velcro pocket. I also could not see at a glance how much formula remained in the bag. It was awkward plugging and unplugging the AC adapter into the pump, so I started using batteries and I soon found I was amassing dozens of half spent 9 volt batteries.
It seemed to me I could have the best of both worlds, and I ended up making what is essentially a small IV stand. (see photo). My wife calls it "Standly.” I made my first Standly from some scrap one-half inch copper pipe and fittings left over from a previous plumbing job. I cut the pipe with a tube cutter, and soldered it together with a propane torch. Because I wanted to pack Standly in a suitcase, I did not solder the two joints that connect the top to the base. Instead I used a bolt and nut on each side so I could take Standly apart.
The top part of Standly is 10 inches wide and about 19 inches high. (The dimensions are not crucial.) The base is 6 inches by 9 inches. It requires 8 copper right angle elbows and 2 tees. The price of the materials would be under $10.
The pumps I have used (Sabretek & Verifuse) have both had threaded holes in the back. I found a bolt that would screw into that hole (probably metric—your hardware store could help you). I took two pieces of Velcro, punched a hole in the end of both pieces with a paper punch, and put the bolt through the Velcro holes and attached it to the pump. Now I could wrap the Velcro strips around Standly’s copper pipe to hold the pump. To keep the pump where I want it, I fastened a radiator hose clamp on the pipe, and rest the Velcro on top of the clamp. (It is really simpler than it sounds.) I drilled a hole in the top of the frame, and put in a threaded hook with a nut on which to hang the formula bag. To carry Standly, I cut a 7 inch piece of old belt and used a bolt and nut on either side to affix the handle to the frame.
I found that the formula bag would swing precipitously when I carried Standly, so I took the rest of the old belt, and stapled (using a heavy duty stapler) a piece of Velcro to each end of the belt. Now I wrap the belt around the frame and bag to hold the hanging formula bag in place. I took some more strips of Velcro and wrapped them around the copper pipe to use as line guides to keep the tubing from getting snagged.
After using Standly nightly for a couple of months, I think I can pronounce it perfect—at least for me. It cost under $10; it is light and portable; I don’t have to worry about air bubbles; and both the bag and pump are readily visible and accessible. In addition, it is easy to plug and unplug the AC adapter when getting up in the night. Standly travels readily, is easy to store during the day, and is completely stable with my four-liter bag of formula hanging from it.
Pleased with the results, I made a second Standly, this time using one-half inch plastic plumbing pipe and glue. The pipe is easily cut with a hacksaw, and it takes no skill to apply the glue. I found that assembling this Standly was a little tricky because, in gluing only one joint at a time, it is difficult to get everything square. However working in plastic is easier for someone without skills or tools. I found the end result was perhaps not quite as sturdy for my four-liter bag, but perfectly satisfactory in use.
I can truthfully say that it has taken me longer to write this account of putting Standly together than it actually took me to do the job. If you have questions, you can write to me at the address below.
Parent Likes Catheter/Tube Holder
My daughter, Stacey has been TPN-dependent since age five due to chronic intestinal pseudo-obstruction. She is now 20 years old. Over the years we have had many problems with her line getting pulled, and she would end up with site infections. We tried taping, of course, but the tape irritated her and her skin. We tried tape, rolled gauze, and even taping the line to the inside of the shirt. Then a friend told me about Baboo’s patches and I decided to give them a try.
We have used the Baboo’s Patch for several months. They are easy to use and great protection for the consumer’s line and skin. The patches come in packages of three. They iron onto the inside of the consumer’s shirt. Each patch has a velcro area for attaching the consumer’s central line and IV tubing; or if used for a G- or J-tube, attaching those tubes. None of the velcro touches the consumer, it is protected by a soft fabric. There are two areas of velcro on each patch allowing for the multiple lines. My daughter likes to attach her CVC on one side and the IV tubing down the other side. We have been able to attach a double lumen line with multiple infusions into this one patch. The tubing does not slip. Using these patches has protected her skin because we no longer have to tape the line or tubing to her chest.
The patches aren’t movable from shirt to shirt. We solved that though by attaching them to a light t-shirt and her favorite shirts. If Stacey wants to wear a shirt without a patch, she just wears the t-shirt underneath.
Valerie, the mother of "Baboo” and inventor/owner of the patch, is very open to suggestions and ways to improve the lives of "our” children. When she first modified the patch to include velcro, my daughter had a problem with the design. We emailed Valerie with the problem. She immediately responded, accepting our input graciously and modifying the patch. This newly-modified patch is now available.
Using the patches has made our life much easier and the line is protected from pulling, hanging, etc.
Swimwear Covers Tubes Well
More than one female consumer has called the Oley office to rave about the two-piece swimwear offered by Lands’ End. According to callers, the mail order company sells a large selection of quality, two-piece (and one piece) swim suits that offer consumers easy access to their tubes, catheters and ostomies, while at the same time making these appliances less visible to others at the pool or beach. If you are interested, and thinking of purchasing the swimwear on-line, please consider going through the iGive.com mall (http://www.iGive.com). It costs no more for you, and Oley will receive a donation.
2/6/2017 » 2/10/2017
Feeding Tube Awareness Week
2/18/2017 » 2/21/2017
Oley exhibit at A.S.P.E.N.'s Clinical Nutrition Week