Moderated by Allison Blass
Insulin pumps have the ability to dramatically improve the way a person manages their type 1 diabetes. In this round table discussion, a group of bloggers living with type 1 diabetes discuss the challenges and benefits to using an insulin pump and how it has helped them. Two bloggers also share their reasons for switching back to multiple daily injections after using the insulin pump. If you are thinking about going on the insulin pump, this round table will give you an idea of what it is like to take the leap.
What’s your story behind deciding to go on an insulin pump?
Kerri: After 17 years on injections, I was up to nine injections a day. The scar tissue on my sites was atrocious, insulin absorption was becoming questionable, and I was experiencing two or three serious low blood sugars a week, one of which caused the paramedics to be called. I felt out of control, yet exhausted from the effort of attempting to control my diabetes. One evening, after taking an injection in my arm and watching most of the insulin come coursing back out thanks to a scar tissue pocket, I lost my patience. I called my doctor, left her a harried message and the next day, my endocrinologist called me back and three weeks later, I was wearing my MiniMed insulin pump.
Bernard: Sometime after learning about them a group of us from Massachusetts attended diabetes advocacy training at Lilly headquarters in Indianapolis. There were people attending from all over the U.S. I was standing in line for lunch on the first day and talking to a woman from another part of the country and noticed she was wearing an insulin pump. So I started asking her about life on the pump. She was able to give me all sorts of details about living with the pump including showering and exercise. Most importantly for me at the time, when I asked her about it she didn’t mind explaining about what to do with the pump when having sex. That kind of information wasn’t easily found elsewhere.
Sandra: When our son was diagnosed, and for many months after, he didn’t need much insulin. He was extremely insulin sensitive, which meant his blood sugar tended to go low a lot. The problem, it seemed, wasn’t the insulin, but rather the delivery mechanism itself–the syringe was simply too blunt a tool. That’s what we were thinking when we arrived at a weekend diabetes camp for newly-diagnosed families and saw an insulin pump for the first time. We were all pretty blown away by what this thing could do.
What were some of your concerns about the insulin pump?
Gina: The main thing I worried about was if there was an actual needle that was going to stay inside of me. Once I found out it was pulled out I felt much better about the whole thing. I also wondered about where I was going to put the pump when I slept. I just ended up clipping it to my pajama pants and I don’t even notice it anymore. The last worry was what to do in the summer at the beach or at the pool, which still has been a challenge for me. A day at the beach or pool for me is a constant battle. You really need to keep on top of how long you stay in the water or even in the sun. You should keep the pump in an insulated bag or under a towel out of the sun.
Kerri: To be honest, I was mainly concerned with an external symptom of diabetes. Before pumping, no one knew I was diabetic unless I told them. But after weighing the pros and cons of pumping insulin, I realized that a pump would be the most effective way to manage my diabetes. In my 21 years with diabetes, deciding to pump was the best decision I have ever made.
Amy: Having something attached to my body all the time. That was my one and only concern. When I started the OmniPod, I was elated at how easy it was to use, and how I could set temp basals and carb presets and all the details to make control easier. I’m very happy with it. The only drawback is hot baths and jacuzzis. I sure wish I could just jump in with no concerns. In other words, I wish I could disconnect now and then.
Sandra, what concerns did you have about putting your son on an insulin pump?
Sandra: I think I was most concerned about how Joseph would feel once he was connected to it for real–when he had to wear it all the time. You see, while I was confident the pump would work so much better for him than shots, I had a hard time emotionally accepting that my son would be connected to a medical device. It seemed so invasive and at the same time, such an outward sign of his disease. I guess I thought that if it was this hard for me, it would be that much more difficult for him. But thankfully, I was wrong–Joseph loved pumping almost immediately. We all did.
What were some of the challenges you faced when you went on the pump?
Scott J: I think the main challenge was thinking of “backup.” This was a new scenario for someone who is used to the “safety net” of long-acting background insulin. While I have only once in my diabetic pumping life been admitted for DKA (which turned out to be a bad vial of insulin rather than anything wrong with the pump), it was a real concern and something I needed to be prepared for.
Sandra: Ironically, the most difficult part about going on the pump grew out of the very reason we migrated to it in the first place–its precision. Suddenly we had a tool that allowed us to really fine-tune our son’s insulin dosages. But in order to do this, we also had to do a lot more work: reading everything we could find on pumping, attending training, logging regularly, interpreting numbers, trends–learning to think like a pancreas. It was (and sometimes still is) exhausting.
Bernard: Although there was a huge improvement over shots, I quickly found the earlier pumps didn’t allow low enough basal rates for parts of the day. The pump also allowed me to eat more and skip meals. For a long while I used that freedom to overeat, which wasn’t a good thing. That’s still a challenge for me, which I work hard to avoid.
What is your favorite part about being on an insulin pump?
Scott J: Freedom and flexibility, as well as not having to do so much math. I plug in the numbers and the pump calculates everything based on settings (insulin/carb ratio, correction factor, duration of insulin action) I’ve worked hard to get programmed as close to perfect as possible.
Sandra: I love that Joseph always has his insulin right there with him–that wherever he is, if his blood sugar goes high, he can bolus a correction; if he wants to eat something, he can cover it. I also love that we can lower Joseph’s basal rate when his blood sugar is dropping at night. (Heck, we can stop his insulin delivery altogether!) And finally, I am so dang happy that he gets only one poke every three days (vs. the five to six per day he got while on shots).
Manny: The favorite thing about the pump for me is the increase in control and the betterment of quality of life, reducing the number of “shots” from approximately 24 every three days, to one (the change in the site). I am not really a lover of needles, so the thought of being able to take fewer injections has been a huge deal for me.
Was there a time when the insulin pump came in handy in a particular way?
Bernard: I was wearing an insulin pump on our second adoption trip. This made the 24 hours of travel from the U.S. to China much simpler to deal with. One day while in China we took a six-hour drive from one city to the next. Having the pump allowed me to take this long trip without needing to stop for a meal. This meant we got there earlier to meet up with our new daughter!
Gina: It has been particularly handy lately for my gym workouts. I have been fine tuning temporary basals before, during, and after workouts to help prevent hypoglycemia.
Scott J: I can bolus discretely any time, rather than having to choose to go somewhere in private or risk drawing attention to myself in not-so-private settings to do a shot. I can also bolus as I go, for those situations where it is more snacky or not-main-dish type stuff. I end up being able to more accurately dose for those things.
Manny: One of the things I like the most about it is the ability that it gives me to conveniently cover meals that are high in protein or fat, like eggs, meat or fish, through the use of the square wave feature. This was a feature I learned to use about a year into being on the pump and I learned about it when I started attending an insulin pumpers group. I highly recommend attending these and connecting with other people with diabetes online too as a means of becoming a better informed diabetic and better managing one’s diabetes.
Scott and Allie, you two are the only bloggers in the round table who aren’t on insulin pumps. Why have you chosen not to be on a pump?
Scott S: I did not find that wearing an insulin pump did much for me except cost me more time and money. Plus I hated wearing that thing all the time. This was before Omnipods existed, which may have made a difference. Contrary to all of the promises I hear all the time, an insulin pump does not necessarily improve control (particularly if you already have good control) and the medical literature indicates that pumps benefit people more if their control is poor to begin with, their basal rates vary considerably throughout the day, or they need dosage precision in less than 1/2 unit. Also, I found it uncomfortable to sleep wearing a pump and woke up tangled in tubing on more than one occasion.
Allie: I’m no longer on the pump. I began using the MiniMed pump in March 1999 and stopped using it in June 2007. It was a luxurious eight years, but I decided that my diabetes control became quite lax on the pump. I got too lazy with a pump acting as my enabling device. It’s a great thing for some people with diabetes; for others, it’s “set-it-and-forget-it.” I realized that for me, I need to be more hands-on in my diabetes control, so I went back to daily injections.
What do you prefer about using multiple daily injections?
Scott S: I like being able to inject and go in a few seconds versus being attached nonstop to a battery-operated device. For me, the main issue is what is more comfortable, and does it deliver comparable control? For that reason, I concluded that a pump was more trouble than it was worth, but your own experience may differ for any number of reasons.
Amy, I’m sure a lot of people are interested to hear more about the OmniPod. How is it different from a traditional insulin pump?
Amy: The OmniPod, from Insulet Corp. of Bedford, MA, is an innovative new insulin delivery system that’s entirely wireless. Traditional pumps house your insulin in a controller device, and pump it into your body via plastic tubing. But the OmniPod has separated these two functions. The insulin reservoir is housed in a small “pod” that’s worn directly on your skin, which is controlled via a wireless hand-held device called the “Personal Diabetes Manager” (PDM), that also doubles as a blood glucose monitor using FreeStyle test strips. So when you’re using the OmniPod, you get pump therapy with no tubing attached to your body. And you also need only carry the one integrated diabetes management device, instead of a separate pump and glucose monitor.
Kerri and Gina, both of you are getting married soon. How are you incorporating your insulin pump into your wedding dress?
Gina: I asked the designer to make a pump pocket. Where the bodice and bottom of the dress meet inside, he sewed in a pocket the dimensions of my pump, a Minimed paradigm, and from the outside he made a slit in one of the seams where I can stick my hand in to get to the pump. It really made me happy to have this because I had no idea what I was going to do otherwise. One less thing to think about the day of the wedding!
Kerri: My seamstress created a pocket in the right hand seam of my dress that is sealed shut with a slip of velcro, allowing me to slip my hand in and access the pump as needed–but no one will see it unless I opt to show them. When the pocket is shut, it’s completely invisible, yet it’s very easy for me to get to. Diabetes will be managed on my wedding day, but it definitely will not be the focus.