Insulin Pump Therapy Demystified

GABRIELLE KAPLAN-MAYER is a writer, performer, and educator. She is the author of several plays and one-woman shows. A 1993 graduate of Emerson College with a B.F.A. cum laude in performing arts, she also earned a master’s degree in Jewish studies at the Reconstructionist Rabbinical College. Gabrielle currently teaches playwriting for the Philadelphia Young Playwrights Festival and is a consultant in the creative arts for the Auerbach Central Agency for Jewish Education. She has had diabetes since she was ten years old and has been on the pump since 1999.

FOREWORD

BACK IN 1984, when home blood glucose monitoring was just beginning to reach the mainstream (my first meter was the size of a sandwich and took two minutes and a pint of blood to give a reading), I was lucky enough to be diagnosed with the “condition” known as type 1 diabetes. Back then, the four magic words were: diet, exercise, insulin, and monitoring. You took your insulin (two shots a day were the norm) and conformed the rest of your life to the peaks and valleys of your insulin program.

Today I run my own practice specializing in intensive diabetes management. The four magic words have been replaced by a simple four-word phrase: THINK LIKE PANCREAS. It is this mantra by which I teach patients how to self-manage their diabetes. To manage this disease properly, you simply have to know how to match your insulin to your needs. And nothing enables us to think like a pancreas more than using an insulin pump. Pumps afford us the opportunity to administer boluses of insulin with extreme precision on an as-needed basis. They also allow us to fine-tune the level of basal insulin to match diurnal variations in endogenous glucose production and insulin sensitivity. The result is a combination of improved glycemic control and a freer, more flexible lifestyle.

People of all ages use insulin pumps to match their insulin doses to their precise needs. Momentary adjustments can be made for variations in food intake, physical activity, and emotions. Accommodation can easily be made for fluctuations in hormone production that accompanies events such as illness, growth, puberty, pregnancy, and menopause.

For me, the pump has brought a level of control that I could not achieve with injections. And I’m not talking about HbAlc; mine has not changed much from the time I was on shots to the time I’ve been on the pump. I’m talking about quality blood sugar control: fewer highs and lows, and more readings within my target range.

I enjoy many forms of exercise, from long-distance cycling to boxing to basketball. When I took insulin injections, low blood sugars were common after I worked out. Some were severe enough to require visits to the emergency room. The pump lets me adjust for both the immediate and delayed effects of exercise. In eight years of pump use, I’m proud to report zero episodes of severe hypoglycemia.

Meal scheduling was also a challenge with insulin injections. Who can eat all three meals at the same time every day? I no longer have to worry about dropping low if a meal is delayed. Now I can occasionally work through lunch, take my wife out for a late dinner, or miss breakfast to play with the kids, work around the house or (gasp!) even sleep a little late.

Using an insulin pump is by no means simple. It takes adequate preparation, training, and follow-through. Having trained more than five hundred people on insulin pump therapy, the characteristics and skills that I have found to be most valuable are: (1) frequent blood glucose testing; (2) detailed record keeping; (3) good carbohydrate gram counting skills; (4) an ability to self-adjust insulin doses properly; and (5) a true desire to give the pump a try. Very few people are 100 percent convinced that the pump is right for them until they have given it a fair trial period. The first few weeks can be somewhat frustrating. But once you get over the initial mechanical adjustments and start seeing your blood sugars stabilize, you’ll be hooked. More than 90 percent of all people who have ever tried an insulin pump are still using an insulin pump. (In my practice, because of the intense education that precedes and follows pump initiation, that number is closer to 99 percent.) In fact, the most common complaint I hear about pump therapy is “I wish I had tried it years ago.”

Why, then, are so many people with insulin-dependent diabetes still taking injections? It probably has a lot to do with misinformation. People tend to fear what they do not understand. Physicians are no exception—ask doctors who are unfamiliar with pump therapy, and most will discourage you from using it. Those familiar with it are almost sure to give it the thumbs-up.

It is also a lack of understanding among people with diabetes that has kept the number of pump users so low (approximately 10 percent of those with insulin-dependent diabetes are using pump therapy). That’s where this book can be so valuable. Besides the nuts and bolts of what a pump is and how it works, this book delves into the art and science of living with an insulin pump. Gabrielle Kaplan-Mayer has done a masterful job of touching on all the “touchy” subjects that deter non-pump users and challenge those new to pump therapy. Everything from insurance issues to concealing the pump in one s clothing to “what to do with it” during sex.

Speaking of sex, I was once delivering a lecture on pump therapy to a group of pharmacy students, and was asked if I could have sex with the pump. I looked the promising young pharmacist right in the eye and responded, “I suppose, but I’d rather have sex with my wife.”

Gotta keep a sense of humor about this stuff! Enjoy the book.

Gary Scheiner M.S., C.D.E.
Owner, Integrated Diabetes Services
Wynnewood, Pa.

INTRODUCTION
We’re in This Challenge Together!

I WAS DIAGNOSED with juvenile, or type 1, diabetes on January 2, 1982, when I was ten years old. For weeks I had been suffering from typical symptoms—constant thirst, frequent urination, lack of energy. I remember feeling “not quite right” but couldn’t articulate what was wrong. I was totally shocked—as was my family—when the results of a urine test proved I had a chronic illness.

When I heard the word “diabetes,” all I knew was that it was an illness of some kind and thought it must be serious. I was scared I might die. When I entered the hospital that day, doctors and nurses explained that diabetes was a livable condition, that I’d have to take insulin shots and watch what I ate, but that otherwise I’d be okay. All day long, I kept wondering, “Will I still be able to live a normal life?” From as early as I remember, I wanted to be a mom someday. Would I live a long time with diabetes? Would I be able to do the normal things everyone gets to do? Would I grow up and get to have a family of my own?

Initially, I adapted pretty well to living with diabetes; I practiced giving insulin shots to an orange and injected insulin into my own skin on the second day after I was diagnosed. Back then, the doctors gave me strips to test my urine. Chemstrips were still a few years away. I gave up eating cookies and candy altogether and indulged only in a once-a-week ice cream cone. Despite feeling “different” from my friends who didn’t have diabetes, I managed all right for those first few years.

One day (I was maybe twelve years old), I was reading Diabetes Forecast magazine. There was an article in it about complications: blindness, kidney failure, retinopathy. I was shocked. No one had ever talked to me about this stuff before! I asked my mom if it was true, that all of these terrible things happened to people with diabetes. She told me that they were working on cures for the complications and that these things wouldn’t happen to me. I don’t know what else you would tell a child. Still feeling shocked and scared, I didn’t know if I should believe her. Over the next few years, technology helped me to improve my care—within four years of my diagnosis, I had a blood sugar meter and better syringes. Research came out saying that tight control helped to prevent complications. My doctors worked with me to teach me how to keep as tight a control—keeping my blood sugars as close to the normal range—as possible.

During my late teen years and the start of college, I became angry at my diabetes and was sick and tired of the work I had to do to keep tight control. I wanted to eat and drink whatever I wanted, just like my friends. I experimented a lot and ignored my diabetes. Caught up in the romance and passion of youth, I decided it was better to “live hard and die young” than to put up with a life of carefully scheduled meals and constant shots and testing. I would go days on end without pricking my finger and would skip meals when I felt like it. Somehow, amazingly, I never got too sick or suffered a severe hypo-or hyperglycemia episode.

By the time I graduated college, my constant rebelling had lost its sexiness and I realized that like it or not, my diabetes was here to stay. I’d have to figure out some way to deal with it if I wanted to pursue my dreams of becoming a writer and getting married and having a family. For the next few years, I tried really hard to work with my diabetes. I saw different doctors. My body was going through some major hormonal changes. I started getting severe premenstrual symptoms seven to ten days before my menstrual cycle: depression, bloating, cramps. Worst of all, my blood sugars would go out of control no matter what I did. I could be 120 one minute, and a few hours later test at 320. I saw this pattern develop month after month. It took visits to several doctors before I found one who believed me and would work with this condition! Still, adding extra shots of regular insulin during those days never quite cut it. I became resigned to feeling simply miserable, physically and emotionally, two weeks out of every month. I imagined the complications that were starting in my body because my sugars were running high. This fear made me even more depressed and tense.

During the two weeks that I wasn’t suffering from PMS, I still had trouble with my morning blood sugars. My doctor explained that I had something called the “dawn phenomenon”—during the very early hours of the morning, my blood sugar would rise for no expected reason. We tried working with multiple injection therapy—adjusting my evening NPH insulin and taking an extra shot of regular before bed. I would get up at 3 A.M. and check my blood sugar. I had frequent episodes of low blood sugar during the night, but when we cut back my insulin, I had days upon end of waking up with sugars over 200. Many days I felt like a zombie, going through life in a slow, blurry daze, and I wanted to give up. I had gone from taking two shots a day and testing once or twice a day to taking five or more insulin shots a day and testing every few hours . . . and still my hemoglobin A1cs averaged around 8.5, well outside the normal range. I had embraced my diabetes, wanted to work with it and achieve healthy control, yet I was at the end of my rope, at a complete loss about what to do.

I had recently moved to Philadelphia to pursue graduate school and met a new endocrinologist, Ned Weiss. At our first meeting, Dr. Weiss and I talked about my diabetes, its effects on my quality of life, and my future plans. He suggested insulin pump therapy as the best alternative for me. He knew it would help me improve my diabetes control. . . and so improve my whole life. But I would not consider this option. I refused. The little I knew about insulin pumps (which was next to nothing) freaked me out. I was not about to attach some mechanical device to my body. That was all I needed! No thanks. I’d rather suffer and struggle through.

A few months went by. I was trying to keep up the busy pace of working and going to graduate school full-time. Finally, I became so frustrated with my diabetes control, I began to consider the pump. I decided that if I was going to make this kind of major decision about my life, I needed information. I read the brochures the pump companies produced; I studied John Walsh’s Pumping Insulin. But while the brochures helped me learn about the basics of each particular pump and John Walsh’s book helped me to understand the basics of how pump therapy worked, I wanted to know more. How would this (what felt monumental) choice affect my whole life—my sense of self, my body image, my relationships with others, my depression?

I embarked on a quest for knowledge and information to help me make the most informed decision about whether the pump was right for me. I learned that a major part of the process would be facing and breaking through my self-created fears and obstacles that were keeping me from choosing pump therapy. In the chapters ahead, I will share my process, and the stories of many other people with diabetes who’ve chosen insulin pump therapy, with you.

Choosing pump therapy has been one of the greatest choices I’ve ever made in my life. I have been pumping now for three and a half years. . . and I feel fantastic! I am a healthy, active, nondepressed person. My A1cs have stayed in the normal range, and I feel better than I have in my entire life. I am living my dreams in my personal and professional life, and feel optimistic about my future.

I know for sure that I would not be in the same shape if it weren’t for my decision to try pump therapy. I have written this book in the hope that the stories and experiences of those who have chosen pump therapy will inspire you or your loved ones with diabetes to seriously consider this life-altering option for optimal diabetes control.

This is a book for the whole person with diabetes—examining the emotional, social, and spiritual as well as physiological dimensions of choosing to live with an insulin pump. Divided into five sections, Insulin Pump Therapy Demystified will guide you through the issues affecting the decision to choose pump therapy; explain (from the point of view of over seventy-five pump users) what it’s really like to live with the pump; discuss what you need to do to prepare for successful pump therapy; delve into issues of maintenance for ongoing pump therapy success; and will also provide a specialized guide for insulin pump therapy for specific life situations—kids, teens, pregnant women, and senior citizens.

For my book, I spoke with countless diabetes educators, researchers, and experts, whose wisdom is invaluable. However, the bulk of the “expertise” comes from people just like you, whose own sharing of their experience adjusting to pump therapy can make your transition that much easier. Because insulin pump therapy is still a relatively new field, and because there have been comparatively few clinical trials on it (less than twenty worldwide, compared to thousands of studies on heart disease), pump therapy is a truly experiential process that requires the patient to take command of his or her diabetes care.

The good news is that all the clinical trials conducted so far have proven that insulin pump therapy, when practiced by motivated and educated pump users, leads to better control than multiple injection therapy. At the June 2002 annual meeting of the American Diabetes Association, three studies presented demonstrate that pump therapy is the most effective way to maintain tight blood sugar control, and can result in fewer diabetes-related complications. But pump therapy is not a cure for diabetes; the pump is not a magical device that you attach to and are able to leave your blood sugars worries behind. No, pump therapy—especially during your initial stage of adjustment—demands that you keep good records, accumulate data about how specific foods and activities affect your insulin requirements, and work closely with a physician or educator to find the correct amount of basal insulin that works for you. With pump therapy, the patient must be ready to go through a period of trial and error that can bring with it an initial feeling of frustration and doubt. But the thrill of pump therapy—despite this sometimes challenging stage—is that you, the pump user, will be in the driver’s seat, in charge of your diabetes in a way that is simply not possible with any other insulin therapy.

Proper education about both the mechanics of the pump and the physiology of how pump therapy works in your body is essential before you get started. Especially if you have lived with diabetes for a long time and know intuitively how to draw up an injection and how long-acting insulin interacts in your body, it is important to bear in mind that you will be learning a whole new way to work with your diabetes. My Buddhist friends would say that this relearning requires a “beginners mind”; that is, you have to let go of your comfort and expertise with the old system and get ready to try something that may feel very different and new.

It is critical that you find a health care provider who is experienced with pump therapy (I will discuss how to do so later in the book). Unfortunately, millions of people worldwide with diabetes are still taking injections because their physicians are not up-to-date with the latest research on the pump. In other words, imagine that someone comes to you and asks what the best device is on the market for watching movies in your home. Would you suggest they buy a Betamax player? Of course not—it’s a dinosaur. Yet, while the pump is clearly the DVD player of diabetes treatment, many health care providers still prescribe the old regime.

The decision to choose pump therapy may feel overwhelming right now—and you are not alone in that feeling. My hope is that this book will address any fears and concerns, and will provide you with the direction to find the resources that you need to make a happy, healthy transition to pump therapy.

Best of luck! And happy pumping!