MANY BLIND DIABETICS SUCCESSFULLY USE INSULIN PUMPS

by Ed Bryant

Photos (5 total, in order):� portraits.� Captions (in

order):� Tom Ley, Donna Blake, Sally York, Anne Whittington,

Veronica Elsea.

Insulin pumps, which deliver a continuous dose 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.� Too many health

professionals, and some blind people, have the misconception

that blindness is synonymous with inability.

This article is intended to educate both the health

care community and blind diabetics, to show them that most

people with type 1 diabetes can successfully use an insulin

pump if they desire.

Today's pump is about the size of a deck of cards, and

is computerized.� Insulin runs from the pump, through a tube

(catheter or cannula) which is 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.

Insulin pump users need to check their blood glucose at

least four times a day.� Since only short-acting insulin is

used, 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 is

no warning alarm to alert the user; and ketone 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

Disetronic Medical Systems, Inc.

5151 Program Avenue

St. Paul, MN 55112

telephone:� 1-800-280-7801

website:� http://www.disetronic-usa.com

They offer the H-tron Plus which costs $4,995, and

comes with a second, backup pump (after 30 months, you send

the first pump back for servicing, and use the backup).

Their much smaller pump, the Dahedi, about 2/3 the size and

weight, should cost about $5,000, and has simple, two-button

programming (but no backup pump).� Disetronic says this pump

will be available in May.� Their newest insulin pump, the D-

Tron, scheduled for later this year, will offer computer

interfacing, increased programmability, vibration and audio

alarms, plus compatibility with insulin pen cartridges (no

price data yet).� Supplies for any current pump, including

test strips, cost about $300 per month.� Disetronic does not

currently provide adaptive instructions on audiocassette--

and when I asked them, they said they were afraid of

"litigation."

MiniMed Technologies

12744 San Fernando Road

Sylmar, CA 91342

telephone:� 1-800-933-3322

website:� http://www.minimed.com

They offer the MiniMed 508.� It costs $5,495.� Again,

supplies, including test strips, should cost about $300 per

month.� This pump allows remote control setting with a key-

ring sized "control unit," and a "vibrating" mode can be

chosen, instead of the beep, for both settings and alarms.

Minimed is currently working with our Diabetes Action

Network to produce an audiocassette of instructions for

blind pumpers.

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 that you can be

real 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 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 that 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, that 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 the 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 that 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

that 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 of the bubbles--most of the time, all of the tiny

bubbles.

"In order to ensure that all of 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.��

Visually-impaired pumper Anne Whittington, MBA, MSN,

RN, CDE, from Augusta, Georgia, says:� "Initially I was on

the MiniMed 504.� 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 new "Tenders," 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 that 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 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.� It's

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.� Both Disetronic and MiniMed

have very helpful service personnel."

"With the MiniMed 507 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."