My Journey to the Pump

My Journey to the Pump

MY JOURNEY TO THE PUMP

by Thomas A. Ley

Tom
Ley is a Past President of the Diabetes Action Network of the National Federation
of the Blind.
Tick. It's my first day with an insulin
pump, and I just received a micro dose of Humalog insulin. I rarely hear my
pump, metering precisely a tenth of a unit of insulin each time... but it ticks
every six minutes, whether I hear it or not.
Today I welcome these ticks, but I haven't
always felt this way. I used to think of pump users as militant diabetics who
spent so much time and energy managing their diabetes that their diabetes took
over their lives. I didn't want to be one of them. After all, my diabetes was
in good enough control, or so I thought. I felt OK, and I never had to rush
to the hospital for care.
So here I sit writing, trying to figure
out what changed inside me. What transformed me and helped me welcome these
ticking sounds?
I have no doubt God led me to this decision,
both through prayer and through new circumstances in my life. First and foremost,
I fell deeply in love with a wonderful lady and her delightful little girl.
Then I began a new job in computer marketing and training. For the first time
in years, I felt determined to do what I must, to live a long and healthy life.
I sought treatment from an endocrinologist with expertise in diabetes. I met
with a diabetes educator who helped me sharpen my meal planning skills. Results
from my regular glycosylated hemoglobin testing motivated me to work diligently
toward tighter control. I increased my blood sugar tests to three per day, and
intensified my insulin therapy, going from two to four shots per day.
What a surprise I had! My diabetes actually
began consuming less of my life! In retrospect, I now realize that for years
I wasn't managing my diabetes; my diabetes was controlling me. How? Unhealthy
food choices sprouted guilt and ruined my fun. Unnecessarily high blood sugars
depressed me and decreased my productivity. Frequent low blood sugar episodes
interrupted my activities and stole my peace of mind. So, despite my best efforts
not to be inconvenienced by diabetes, much of my lifestyle had been adversely
affected by the disease. I discovered that the better my control, the less diabetes
imposed on my life.
Conceptually, the pump makes a lot of
sense. In combination with frequent blood glucose monitoring, it offers at least
the same tight control as my previous regimen of four injections per day. I'm
told some pumpers find it offers better control. And pump therapy only uses
short-acting insulins (R or Humalog). Why is this better for me? When I was
taking NPH (intermediate-acting insulin), I needed to be sure to eat a meal
five to six hours after taking it. My job as a Marketing and Training Manager
requires long hours and frequent solo travel, so scheduling meals was rather
problematic. I often ended up eating whatever was available, to avert low blood
sugar when the long acting insulin peaked. Unfortunately, candy bars, Cokes
and greasy fast food are often the only foods available at airports and conference
exhibit halls.
In theory, the pump simulates a real
pancreas, administering tiny doses of insulin throughout the day. The user self-administers
an appropriate level of insulin just before the meal. Now I can wait until a
nutritious meal is available. I don't need to worry about low blood sugars.
This means a huge improvement in my life.
The advantages of insulin pump therapy
seem obvious, but what about the downsides? I thought there would be many. But,
to my relief, many of my misconceptions concerning living with a pump were false.
Today, a pump is about as obtrusive as a beeper.
In preparation for my pump, I reviewed
a number of educational videos provided by my diabetes nurse educator at Johns
Hopkins. Upon studying the materials from both pump manufacturers, I was surprised
to learn that pumps no longer deliver their insulin through metal needles—today's
"infusion sets" (the tubing between pump and injection site) are soft
and flexible. Only a simple Teflon "cannula" remains under the skin.
Another great feature is the "quick release mechanism" in the tubing
that connects the needle to the pump. In just two seconds I can detach the pump
from the tubing, as easily as undoing a button.
Most impressive is the fact that no one
has ever reported receiving an insulin overdose due to a pump malfunction. What
great information!
As I sit here composing these notes,
I can honestly say I feel practically no discomfort at all from the cannula
that delivers my insulin. I find its presence far more comfortable than taking
four insulin injections per day.
So I decided to get a pump. What did
my endocrinologist, diabetes nurse educator, and family members think? Family
was easy. They wholeheartedly encouraged me, what a comfort! My health care
team was also supportive, but they voiced legitimate concerns about how a totally
blind person might independently operate the pump. Concerns are not prohibitions—they
were open to learning with me. I'm glad my team voiced their questions, and
I'm even more glad we found the answers.
We were all reassured to learn that blind
diabetics around the country successfully use pumps. I reread a few key articles
from VOICE OF THE DIABETIC and passed them along to my team. Along the way I
taught them how to use a plastic straw to make a nifty and accurate insulin
measuring gauge. Together we discovered that one can hear the air bubbles pass
out of a 500-unit pump-filling syringe, and that with a little ingenuity, a
blind person can change "infusion sets" unaided, holding the new cannula
in place with one hand and applying an incredibly sticky piece of tape over
the infusion site with the other.
I've shown my health care team that creative
blind people can find alternative ways to complete necessary tasks. I'm glad
they recognize and respect my independence and sense of responsibility. Perhaps
this will help them encourage other blind diabetics to pursue tight diabetic
control with the pump.
I am grateful to the National Federation
of the Blind for instilling in me the belief that I can live a productive and
meaningful life despite my blindness. Through the organization, I continue to
meet hundreds of blind role models, who actively encourage me to achieve higher
levels of independence. I've enjoyed world-class training through the Louisiana
Center for the Blind, where I learned the skills of blindness. Our colleagues
in the Diabetes Action Network support and challenge one another to manage our
diabetes, and to proceed with grace despite complications. For all of these
blessings, I am truly thankful.
I'm now home from the hospital, having
spent a day and a half at Johns Hopkins Hospital to work out the initial insulin
dosing. With the MiniMed 507 pump at my side, 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... Tick.