I am beginning to feel that an insulin pump isn't right for me. It's been almost two weeks since I started using my insulin pump and I still have no clue if my basal and bolus rates are correct.
I have worked with a certified diabetes educator (CDE) from Roche to get my basal rate set. The first few days were challenging. I got a lot of hypos, requiring lots of treatment with smarties. The CDE considered the data unreliable since treating hypoglycemia doesn't allow us to see how low I would have gone with the rate and how much we should scale back. Of course I can't allow my BG go too low since the complications are immediate. I started using the pump in the middle of the week1 and I had a family event on the weekend2 so doing the "skip-a-meal" test wasn't something I thought I could do.
We tried for the next week but the results were mixed. It was also a very busy week3 at work. I had a number of back to back meetings all week but I tried to eat pretty much the same thing every day. I still had a lot of hypoglycemia but we thought we had made progress on the midday basal rate. We just needed to work out the basal rate for breakfast and dinner.
We modified a number of things including insulin/carb ratios and basal rates for different times of the day and I had fewer hypos that week. But I now had more hyperglycemia.
The CDE recommended I add some fibre to my fruit/vegetable blends. She thought the blends had too much sugar and not enough fibre. She also recommended drinking milk to add a fat to help slow digestion. I don't drink milk. I don't like it and I don't feel well afterwards. I was also advised to have my morning coffee later in the day instead of at breakfast. Somehow coffee might be raising my blood sugar in the morning.
On Roche's site one of the benefits of using a pump is stated as thus:
Plan your life, not your insulin scheduleAccu-Chek
The more I modified my diet and lifestyle to make the numbers works the more I became disenchanted with the pump. My normal breakfast is a blend of spinach, flax or chia seed, and berries or other fruits in a Vitamix. Total number of carbohydrates is about 17-20g. The flax, spinach and chia seed add healthy amounts of fibre. I don't eat eggs, toast and bacon for breakfast. I'd probably throw up if I did.
My lunch is usually a sandwich; a few slices of deli meat, low-fat cheese, lettuce, some may or mustard, between two slices of multi-grain bread. About 40g or carbohydrates. My wife insists on cooking dinner but I will occasionally eat a Trader Joe's packaged meal. A cooked meal may include one serving of brown rice or quinoa, vegetables, and organic fish or organic chicken. The only other meat we eat is grass-fed organic meat but we do that occasionally. We rarely eat out.
Does that sound like the a diet that needs to be modified? Do I really need to chuck my Vitamix and starting eating shit for breakfast? Do I really need to skip a meal and pop and aspirin for the resulting headache while listening to my stomach growl?
Does it make sense that went to bed with a BG of 101 on Saturday night and woke up with a BG of 140? Does it make sense that I went to bed Sunday night (last night) with a BG of 140 and woke up with a BG of 65 on Monday? Does it make sense that I ate the same things for breakfast on Sunday and Monday (this morning) and yet my 2HR post-prandial BG on Sunday was 140 and now (Monday) my BG is headed below 80?
Accurate carb counting is critical for getting the most from your pump.Excerpt From: John Walsh, PA & Ruth Roberts, MA. “Pumping Insulin.
The only way I know of to get accurate carb counts is to eat prepackaged processed foods. Surely this can't be a good thing! I am beginning to think the entire diabetes medical industry is full of shit. Am I supposed to stop eating home made meals unless I weigh and measure every ingredient and then compute nutritional information? Can I now only eat home cooked meals that come from a recipe book that includes nutritional information? Do I only eat at fast food and chain restaurants that have nutritional information available? Are all the local restaurants verboten? Explain to me how a pump fits in with my existing lifestyle or do I need a new one?
I feel the way I felt when I was just diagnosed. I feel like I don't know my body. I don't feel like I have control of my diabetes. I spend more time thinking about my diabetes with the pump then I did when I was on multiple daily injections. I find myself constantly checking the CGMS to see if I am headed for a hypo so that I can set a temporary basal. I find myself testing more often because I started to doubt the CGMS. I feel like I spend more time planning my insulin schedule than my life.
We have been unable to get anything sorted out in the almost two weeks since I started using this pump. Nothing makes sense to me anymore. I have lost control and that is pissing me off. I am disappointed. I am back where I was eight years ago when I was first diagnosed.
But, not wanting to be accused of not given pumping a chance I have decided to give it one more week before I call it quits on the insulin pump. I have set the range on my CGMS to between 80 and 200 so that I won't get "buzzed' by my CGMS in the middle of meetings and the middle of the night. Today and tomorrow, I will eat the same EXACT thing for ALL my meals. On Wednesday, I will skip breakfast. On Thursday I will skip lunch. And on Friday I will skip dinner. Hopefully I won't throw up from eating the same thing for every meal. Hopefully the hunger headaches won't affect my work. Hopefully I can get some restful sleep.
If we don't have a reliable set of observations to work with and we can't get my life back, then I am done with pumping. I will send this unit back to Roche. I will not change my diet and lifestyle to suit this device. It seems to me that is the antithesis of the supposed benefits.
I've read that a lot of people do well on the pump but I think and insulin pump may not be the best thing for me.
I am curious to know how you ended up with the accu-check pump. Were you given a choice or were you limited by the doctor or cde? After 30 years of injections my father was put on an Accu-check pump about 18 months ago. He had a terrible time and returned it. About 6 months ago, he started seeing a new doctor who said he needed a pump. When my dad refused and let him know about his experience on the Accu-check, this new doctor told him that my dad's experience with the Accu-check pump and the doctors that prescribe them is not uncommon. He convinced him to try again. With a different pump and much better support, he saw big improvement almost immediately. 6 months later, he loves it! His control and a1c have never been better.
I chose my pump based on feedback from various forums. I think the choice of pump is mostly irrelevant and your Dad'd experience is typical of any first time insulin pump user. An insulin pump isn't for everyone. There is a learning curve and it requires vigilance and discipline to use it.
In order to have success with the pump, you will have to check your blood glucose (BG) often during the day and count your carbohydrate grams. That alone deters a lot of people. I had no problem adjusting to that since I was already testing my BG often and counting carbohydrates since my diagnosis. My frustration with the pump was mostly related to working out new basal and bolus rates. It's like starting out all over again as though I was just diagnosed. It took me 3 weeks but I have it worked out and with minor tweaks I am loving the freedom the pump offers.
Here are some articles that might help:
http://www.everydayhealth.com/health-center/diabetes-should-i-get-an-insulin-pump.aspx
http://www.diabetes.org/living-with-diabetes/treatment-and-care/medication/insulin/getting-started.html
http://www.diabeteswellbeing.com/insulin-pumps/
http://www.diabetesforecast.org/2014/Jan/insulin-pumps-2014.html
Good luck to you and your dad.
Sounds like a rough start! Way to give an honest, full-hearted shot though. I'm interested to hear how the 3rd week goes - I know some people can take a couple months to get everything figured out.
I agree though - I'm not sure the pump is for everybody. I tried it and couldn't justify its use, though for different reasons.
Good luck!
Hi Sarah. Indeed a bumpy start. I don't like feeling like a quitter. I want to know that I gave did all I could -- without changing my diet -- to make it work.
Another factor is the infusion set. Some sets produce inconsistent results for people depending on your fat distribution, weight, set placement. It is a lot in the beginning. I don't get why your CDE wants to modify your diet so much. If you have that much hypoglycemia, it sure sounds like your basal is too high, but what do I know,
The CDE was modifying my diet in ways that make no sense to me. She think coffee raise my BG so I should bolus for an imaginary 5g of carb when I drink coffee. I drink my coffee black (fresh ground beans every morning in the French Press).
I'm not sure the basal is too high or too low. I do know we started at .90/hr and now it's at 0.60/hr for some parts of the day and 0.75/hr for other parts of the day etc. I have no freaking clue what's going on. We lowered it and my nighttime BG was stable for a week before this weekend when it both trended high and then low on two separate nights. I'm ready to give up. I just don't understand any of this and why we are making the changes we are making. I don't like not understanding and not being in control.
What was your reason for going on the pump/CGM in the first place? I think the ramp-up time for pump therapy takes more time than the ramp up for MDI, because there are more options to consider (such as the potential to change basal rates for multiple segments of the day, whereas the use of long-acting is about changing the dose amount for 1 or 2 times a day, depending if you split your long-acting into two shots/day). To be able to do all the "skip a meal" tests needed to assess basal adjustments, I would expect it to take 6 weeks or more to start to feel more sense of control. Erasing those immediate hypos is, of course, the safest way to proceed. If that means a few hypers until things get sorted, so be it. Still, it is true that not everyone finds the pump a useful diabetes management tool. Best wishes as you continue to give it a try and see if the pump and CGM are aids or distractions.
Hi Kelly,
Thanks for responding.
Adjusting for my BG upwards to avoid the hypos would means setting my target range to between 100 and 300. That can't be a good thing to do for 6 weeks! Hyperglycemia makes me drowsy. It's just not acceptable to sit in a business meeting with a glazed look on my face, while trying to avoid to fall asleep. It's also not encouraging to test my BG and have the glucose meter nag me to do a test for ketones.
I did not understand that it would take 6 weeks to set all the basal rates. Perhaps my expectations were not set up front. Had I known, I would have delayed getting the pump until the summer. Work and family life is less hectic then.
So far the results are inconsistent. I don't have a useful basal rate dialed in for ANY time of the day and even my bolus rate also produces inconsistent results. I'm frustrated because it seems that we've made no progress at all. I'm sitting at work right now with the CGMS going off since 10:30. My BG has been below 70 since then. I ate the same exact amount of oatmeal that I had for breakfast but the CDE set my lunch time and breakfast basal rate to different values.
So with so many variables, is it practical to expect results?