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MANY BLIND DIABETICS SUCCESSFULLY USE INSULIN PUMPS

by Ed Bryant

(This article appeared in VOICE OF THE DIABETIC, Volume 15, Number 2, Spring 2000 Edition. Updated January 2005.)

Insulin pumps, which deliver continuous doses of insulin, are being used by more and more diabetics, blind and sighted, to achieve better diabetes control. Unfortunately, there are health professionals who assume it isn't possible for a blind patient, or one with severe vision loss, to operate an insulin pump. These individuals, and some blind people, have the misconception that blindness is synonymous with inability. They're wrong.

Most people with type 1 diabetes, sighted, blind, or visually impaired, can successfully use an insulin pump if they desire. With the pump, they can come closer to "normal," non-diabetic blood glucose, than with any other means short of a pancreas transplant.

Today's pump is the size of a deck of cards, or smaller, and is highly computerized. Insulin runs from the pump, through a tube (catheter or cannula), usually attached to the abdomen or thigh. Insulin is delivered under the skin, through the tiny, flexible tube. The user programs the pump for basal (continuous) delivery, small amounts of short-acting insulin 24 hours a day. He/she also programs the insulin pump for bolus insulin delivery, to receive extra insulin just before eating. Insulin pumps have several different controls and alarms, and your doctor may want you to spend a few days in the hospital for training.

Current insulin pumps are easier to use than their predecessors; they simplify dose computation -- but they do not set themselves. Insulin pump users need to check their blood glucose often, at least four times a day. Since only short-acting insulin is used, no mix of long- and short-acting insulins, it is important the user check blood sugars regularly to avoid really high or low blood glucose. Warning: If the needle, or catheter, comes out from under the skin, there may be no warning alarm to alert the user; dangerous ketones can start building up in about one hour. With little or no insulin in the body, ketoacidosis can develop in just a few hours. Note: Pump users say the needle or cannula rarely, if ever, comes out; and if it does, they can feel what happened. Additionally, if the needle has detached from the skin, then insulin will flow onto the clothing, which will after a while become wet. Most users should also be cognizant of leaking insulin, as it smells very bad. To reiterate, it is important that you closely monitor your blood sugars.

An insulin pump might be what you need if you are having major problems controlling your blood glucose with insulin shots. You might consider a pump if insulin injections do not keep your blood glucose near a normal level, or if you have big glucose swings. Nighttime can be difficult for some, because they have episodes of hypoglycemia, or get up in the morning with high blood sugars before breakfast. The pump can be programmed, so it can deliver less insulin at night and more insulin before dawn, minimizing nighttime lows and before breakfast glucose highs. We should all be monitoring our blood glucose, working toward tight control. We should all be working with our health care team to reach euglycemia, normal blood glucose.

You may be able to wear your insulin pump while bathing or swimming. Some pumps are waterproof, and some come with a water protective case.

Insurance

Some insurance companies will help with the cost of pumps and supplies. They realize better diabetes control means less diabetes complications, less time in the hospital, and a bottom line of less expense for the insurance provider. Your doctor should be able to help show insurance companies the value of covering the cost of pumps and supplies.

As of April 1, 2000, Medicare began helping type 1 diabetics with the cost of pumps and related supplies. For information, telephone: 1-800-633-4227, and ask for "Durable Medical Equipment."

Pump Manufacturers and Costs

Change has become quite rapid; new models and new manufacturers are announced almost every month. Do some research -- much of the "published information" is already incomplete and outdated, and few sources mention all your options. The Internet is a great place to start.

Animas (the R1000 and R1200 pumps)
Frazer, PA
1-877-767-7373 or 1-877-937-7867
www.animascorp.com

Dana Diabecare (the Diabecare II)
New Orleans, LA
1-866-342-2322 (in USA)
Korean-designed, built and sold all over the world
www.danapumps.com
Deltec/Smith's Medical (the Cozmo and Cozmonitor)
St. Paul, MN
1-800-826-9703 (in USA)
www.delteccozmo.com or www.smiths-medical.com
UK-based, the Cozmo includes a coupled meter (the Cozmonitor) and Cozmanager computer software.

Disetronic Medical Systems, Inc. (former manufacturer of the D-tron and H-Tron)
Fishers, IN 46038
1-800-280-7801
Disetronic is now part of Roche Diagnostics. Their new pump, currently "in the pipleine," will be marketed as the "AccuChek Spirit." Roche will sell it; Disetronic will support it, as they do their D-Tron and H-Tron models. It's not available yet; we'll tell you more when it's available.
www.disetronic-usa.com

Medtronic/MiniMed (the Paradigm 515 and 715)
1-800-933-3322
Sylmar, CA 91342
www.minimed.com
Minimed's Paradigm series pumps link (by wireless RF) with a dedicated B-D blood glucose monitor, to ease computation of basal and bolus dose.

Nipro
1-888-651-7867 (in USA)
Miramar, FL 33025
www.nipro-diabetes.com
Osaka, Japan-based Nipro, a newcomer to the U.S. market, offers the Amigo II pump.

On The Way:

The AccuChek Spirit (Roche Diagnostics, mentioned above). Also, under the Aegis of LifeScan, Inverness Medical and Swiss R&D firm Debiotech have been developing a tiny pump that attaches directly to the skin, eliminating the long cannula. Researchers report they plan "to make their pump the size of a credit card." The new mini-pump will require a concentrated insulin not yet perfected. No name has been put forth for the mini-pump, but notes about it are already on the Internet.

Although many blind people successfully use insulin pumps, no pump manufacturer to date has embraced the need to create a tactile or talking insulin pump designed to ease independent nonsighted use. The technology exists; all that has been lacking is manufacturer interest. We, the Diabetes Action Network of the National Federation of the Blind, have been actively lobbying manufacturers to create such equipment.

The insulin pump is an amazing device. If you have type 1 diabetes, and need to use insulin, the pump best approximates the function of a healthy, non-diabetic pancreas. Can a blind diabetic use it, fill it, program it, attach it, independently, without sighted aid? Absolutely.

As I said, there are still people who believe otherwise, and some who just don't know. Who are the "experts" in this case? The blind pumpers who are doing it for themselves. Here's what they had to say about their pumps:

Why should a blind diabetic consider the insulin pump?

Susan Stewart, a blind pump user from Medina, Ohio, says: "I've always wanted to be on the pump; it was a convenience thing. The pump gives me more flexibility. If you're considering an insulin pump, definitely really look into it, because it has given me independence and freedom ..."

Tammy Rupp, a blind pumper from Carrolton, Georgia, says: "The good thing about the pump is you can be really flexible. You don't have to be on a schedule. You can be, but you don't have to be."

Sally York, a blind pumper from Castro Valley, California, and past Board Member of our National Federation of the Blind Diabetes Action Network, says: "My MiniMed insulin pump has given me back my independence. I can't imagine going back to life on multiple injections. I can honestly declare my pump has given my life a positive boost."

What specialized techniques do you use to manipulate the pump without sight?

"With respect to filling the syringe," says Tom Tobin, a blind pumper from Cleveland, Ohio, "I have developed a system that works well without any sighted assistance. First, when filling the syringe, I pull down on the plunger until the bottom of the syringe barrel and the plunger are about the distance from the tip of my index finger to my first knuckle; so as a measuring device, you always have your knuckle.

"Then, as with a regular syringe, I tap the sides of the syringe barrel and then push the insulin back into the vial. I repeat this step until I cannot hear any 'bubbles' escaping when pushing the insulin back into the vial; there should be a 'smooth' sound.

"Next, since air may trap at the top of the syringe itself, I pull a little air into the syringe and push up on the plunger ever so slightly until insulin comes out the tip of the needle; just a little push. That completes filling the syringe.

"Next, while holding the syringe in my left hand, I take the infusion tubing and remove the cover at the end of the tubing that goes over the neck of the syringe, where the needle once was. Make sure there is a snug fit as you tighten down the collar of the infusion set over the neck of the syringe. (I sometimes use my teeth to make sure it is really tight.) Then I put the plunger of the syringe on a flat surface, usually a table top, and begin pushing down on the barrel of the syringe, thus filling the infusion set. I want to stress, this should be done very, very slowly to avoid any pocketing of air in the tubing. If it is done right, there should be no air bubbles at all in the tubing. Letting a drop fall on the back of your hand is fine, although I put the needle guard at the other end of the infusion set between my teeth, and use my tongue to feel when the drop falls. Whatever works for you."

Tom Ley, from Baltimore, Maryland, a blind pumper and former president of our NFB Diabetes Action Network, says: "The process of filling my Mini Med 507 C pump with a fresh supply of insulin can be performed successfully by a person using non-visual techniques. I will cover the subject of inserting the cannula into the skin and securing the cannula with tape. Let me say, at the beginning, that not once in my two years of experience has the cannula ever crimped or otherwise unsuccessfully seated itself under the skin when being implanted. I also find this aspect of the process very easy non-visually.

"It is much like giving a shot in many ways. Once the needle is inserted into the skin, a piece of special tape is used to hold the cannula in place. The tape is designed in such a way that is extremely easy to position correctly without yet exposing the sticky side of the tape. Once the tape is in place, three pieces of paper that cover the sticky part of the tape must be removed. The pieces of paper are pre-folded and shaped by the factory to make locating and removing extremely easy.

"Then, the final step is to remove the needle from the Teflon cannula. One simply must locate the large plastic end of the needle protruding from the skin through a hole in the tape, twist it a quarter of a turn, and pull out to remove. It is possible the cannula might crimp as it is being inserted. However, it is standard operating procedure to check your blood sugar an hour after changing the pump set. If the sugar is abnormally high, then a set of procedures should be followed to remedy the situation. This is no different than what a pump user does any time blood sugars seem unusually high. As said earlier, in two years, I have not yet experienced any problems of this nature when changing my pump set."
"One of the first things I learned was to line up my insulin bottle with the needle and syringe that holds the insulin in the pump," says blind pumper Donna Blake, from Waterbury, Connecticut. "This may have not seemed like much but at that time, I had never seen a Count-A-Dose (tactile insulin measuring device that enables blind people to accurately measure insulin without sight), nor had I heard about any alternative techniques for taking care of insulin and blood sugar needs.

"After I got the syringe filled, I devised a simple way to connect the syringe to the tubing aseptically (in a sterile manner). I placed my thumbs together guiding the hub of the syringe into the Leur lock of the tubing. I drew the syringe back two fingers' width and this gave me the correct amount of insulin for three days. Next, I realized I had bubbles that I did not know about, so back I went to step one. I found by pushing the insulin in and out of the bottle several times (gently), I could eliminate almost all the bubbles-most of the time, all the tiny bubbles.

"In order to ensure that all the air was out of the syringe, I would lightly tap the syringe on the side of a table to bring the bubbles to the top. Then I took the syringe, pulled a bit of air into it, reinserted the needle into the bottle of insulin and shot out the air. I then tapped the needle on the side of the table and pushed the plunger until a few drops of insulin came out (you can really smell the insulin). I connected the tubing and the syringe. I held the syringe and the first few inches of tubing upright and slowly depressed the plunger so the insulin filled the initial portion of the tubing without bubbles. I continued pushing insulin through the tubing until I felt a drop fall out and hit the back of my hand.

"I was almost ready to insert the needle/catheter. I began this stage of the procedure after a shower where I scrubbed the site, where the catheter was placed, thoroughly with soap. I dried this area off with a clean towel, separate from my other towels. Next I prepared the site with a liquid spray called "Sween Prep," a protective skin coating that keeps me from having an allergic reaction to the adhesive placed over the catheter site. While this stuff dried, I placed the syringe in the pump and primed two units of insulin through. This step ensured that the syringe inserted snugly within the pump and I did not miss any dose of insulin.

"When my site was ready to receive the catheter, I inserted the needle just like anyone else with diabetes does giving an injection. After I inserted the catheter, I pulled out the small (25-gauge) needle and placed a protective tape over the catheter and now I could go for about three to four days."

What adaptive features are there to help you?
"It has a tone-activate button," says Tammy Rupp. "You press it, and it has a tone, and you count the tones for each unit you need, to get your insulin bolus. Mine goes in whole units; it can go in half-units, too. And it will automatically count it back to you so you can check it.

"There's also a select button that you use with the activate button, to clear the pump's alarm, if it goes off. There's an alarm for "low battery," for if something's wrong with the infusion set, or if the pump is out of insulin. It beeps six times when you're out of insulin."

Blind pumper Anne Whittington, MBA, MSN, RN, CDE, from San Diego, California, says: "Initially I was on the MiniMed. I found the buttons cumbersome (with my rheumatoid arthritis) and the contrast poor on the screen. In 1993, I switched to the Disetronic pump. The audible alarms and crisp contrast met my needs well."

Susan Stewart says: "My insulin pump has a screen, which I cannot read, that shows date and time, and when the alarm goes off, it tells what the alarm is for. It has four buttons, and one of them is the 'select' button, with which you select whatever screen you want. I use it by counting. Once I hit the activate button, it beeps. And it has the up and down arrows. When I do a bolus before I eat, I push the button. Say I want ten units; I'll push the button up; it'll be 20 beeps. Then I push the activate button again, and it will replay the number of beeps, each 1/2-unit of insulin, that I selected. Another push on the activate button, and it will start giving me the insulin."

What about the cannula? Does it bother you? Is it safe?

Veronica Elsea, a blind pumper from Sylmar, California, says: "The insulin is delivered through a needle or cannula, which is placed anywhere you'd give an injection with a syringe. I only use my abdomen; I find it easier and more reliable. I use a Teflon cannula called 'Tenders,' made by Disetronic. I find them easy to insert and very forgiving. In fact, if you have any neuropathy in your hands, you may actually find these cannulas and cartridges quite a blessing, as they're fatter and larger than regular syringes. The 'Tenders' are inserted at an angle, anything up to 45 degrees or so. I just hold it at a slant, push it in and don't worry about it! As you might expect, once you insert the cannula and remove its insertion needle, it is held in place with tape. With the 'Tenders' infusion set, the tape is part of the cannula, so I no longer find myself holding something in place while searching for a piece of tape somewhere on a table! It's designed for one-handed operation by a sighted person, which means we can do it easily and comfortably with two.

"Only once, during an exuberant 'good morning,' did my guide dog reach up and catch her paw in the tubing. It's a weird feeling when you catch the tubing on something, but it takes real effort to knock out the cannula."

"I'm not afraid the catheter would fall out," says Susan Stewart. "I use three pieces of medical tape holding it in, and never in the months I've been using it has it come out, unless I mean to, when I'm taking it off. You have to really tug on it sometimes to get it off-the tape is very sticky. Although there's no alarm that would sound if it fell out, you would definitely know-you would notice. For one, my shirt would be soaked with the insulin!

"Once you get used to wearing the cannula, and to the need to rotate it, you can tell if something's wrong. I can tell if the tape's loose. Usually on the third day, the tape gets a little looser than the first or second days, since you've taken three showers since you attached it."

"I can honestly say I feel practically no discomfort at all from the cannula that delivers my insulin," says Tom Ley. "I find its presence far more comfortable than taking four insulin injections per day."

Do you have any advice for blind diabetics who are considering
the insulin pump?

"A lot of people say to me, 'Oh, I want the pump and I don't want to get injections anymore,'" says blind pumper Tricia Kline, from Doylestown, Ohio. "They think the pump is the easy way out. And I would say, unless you have the commitment to continue, if you think all you have to do is get a pump, and then you can eat anything you want to, that you don't have to do this and that, and you don't have to do blood sugar testing, unless you are committed to do that and really work at it, you won't succeed with the pump. Its not 'less work.' Sure, some people think you throw out your injecting needles and that, but it's still a big commitment. And unless you're willing to do that, and willing to, and have the confidence to do your own adjustments, you won't succeed with the pump. You have to develop, with your doctor, a sliding scale; like 'if my blood sugar is this much, then I take this much insulin, or if it's low I take this much less.' You get to know your body. But unless you're willing to gain this much confidence in yourself to be able to make these changes on your own, you will drive your doctor crazy."

Anne Whittington says: "Before selecting the company with the best pump for you, consult your diabetes management team members. These team members go beyond your doctor, and include your nurse dietitian, blind rehabilitation specialist, and whoever else may be assisting you in learning about the pump and its day-to-day operation. Also, please speak with customer service representatives from the major companies before you select a pump. Explain to them your needs as a blind person."

"With the MiniMed pump at my side," says Tom Ley, "I'm eagerly beginning a new phase of my life with diabetes. After 25 years, I welcome days free from insulin injections. I'm excited about the prospect of fewer high and low blood sugar incidents, and I will enjoy my new mealtime flexibility immensely. I'm comfortable, confident, and content."