Hallelujah - I am OFF THE PUMP and never going back! And recommendations for new pump users or potentials

I want to share with you what happened to me. I got on the pump because of frequent urgings by my endocrinologist in October 2009. I also caught the flu that month. Suddenly, I was stricken with uncontrollable blood sugars and the most severe fatigue I've ever had. In February 2010, I had to stop working because I couldn't get out of bed anymore. I had several (in my house) trainings by a Medtronics trainer named Angela (I believe she's left the company now) about how to use the pump and cgm device. I'm a gadgety person anyway, so at first, I liked the idea of the technology. But I was so darn sick. Many times, me and my family wondered if the pump was somehow making me sick - nothing  and no one - including more endocrinologists seemed able to answer the question as to why I couldn't get good control with my pump.

Finally, in about March this year, I went back to my original endocrinologist at Mayo Clinic and we went over everything. She took at very close look at my pump settings as guess what? A setting had been set incorrectly by my medtronics trainer. She'd put my active insulin setting at 6 hours, meaning if I had a high of 598 4 hours after I ate, the pump would not give me any insulin for it. This explained a lot. She reset it to either 3 or 4 hours and I tried the pump for another few weeks, but decided ultimately that this thing is not for me.

Things I hated about the pump: Having to change it every 3 days. The scars and bruises from the insert sites. Having to watch what I wore and how I wore things, to figure out how to wear the pump with it. I love long skirts, which meant wearing a child's arm cuff around my thigh which eventually lost its elasticitiy, was quite expensive, and fell down my leg all the time. Wearing it to bed and constantly having to wake up to move it with me. Getting the cord wrapped around door handles and the like. The sudden battery warnings - and you better have more than one triple a battery on you that's new, just in case one of them isn't liked by the pump. How the pump calculated things in a way that made it so I couldn't do it in my head anymore - I was chained to the pump and what it said was the right dose, even though I was always high afterwards. How, no matter how many times we increased the insulin I was getting, my sugars still ran high. How I gained 45 pounds in a year.

Why I hated the cgm device: Sometimes it took all day just to get it working, and if you were really motivated to get that sucker to "wet" properly (which could take up to 3 hours), meant starving yourself all day just to get it going for 3 days and then, guess what? You have to do it all over again for the next three days. The pain of inserting it, the scars it left on my body. Trying to find a place to put it that wouldn't be near my waistline (where clothes my push on it & disturb it), which usually meant I had to try to reach around to my butt to put it there. I couldn't put it in my lower abdominal area because I have all this lipidemia (or whatever it's called) that could cause problems with the device.

But the absolute worse thing of all about the cgm, that no one explains to you, is that if you have a low blood sugar and the cgm doesn't catch it because it's off doing its own math in la-la land, you have no proof that you had a low blood sugar. Which means the device can't warn you and feeds the pump the wrong info when you upload (if it didn't catch it). This happened to me on the pump one day last winter. I felt funny, like I had a migraine coming on, and decided to check my bs just in case. I have hypoglycemia unawareness, which was why I wanted the cgm device in the first place - to help me catch them. My blood sugar was at 19. I apparently had a diabetic seizure, they say, because my vision has been messed up ever since. I can't see up close anymore without reading glasses, and I'm only 36! They said it would go back to normal, but it's half a year later and it's still the same.

So I got a bottle of Lantus from my Mom, called my endo and said I have the supplies until you can call it into my pharmacy - I'm taking a long if not permanent vacation from the pump. She agreed that I'd given it my all and it wasn't working.

I am so much happier now. My regime is back to its simple way - just needles and insulin and a glucose meter and test strips. There is nothing on my body anymore - that was a HUGE issue for me; I was embarrassed by my own body and felt like a cyborg or something. I don't get the bruises and scars from the needles I got from all that Medtronics equipment. I check my blood sugar and eat when I want to. I'm not anywhere as hungry as I was when I was on the pump. My blood sugars have gone from 400-600 to 80-300s, depending on the day and how good I am at carb guessing. I'm on a different carb ratio than I was before I started the pump and am tweaking it on my own. I feel in control again and I love it.

My original problem, the hypoglycemia unawareness, wasn't solved with or without the pump. Which is why I'm thinking about getting a diabetes alert dog when we move to a better location. I think that's the only thing "on the market" that would really work for me - a dog is a living breathing thinking animal, and I'll bet their intelligence far outweighs the current technology by far because they can smell the difference in you when you go low.

 

My recommendations

I urge anyone who is having lasting problems with your pump to check with your endocrinologist and make sure it was set up properly. Don't stop asking questions. And if it doesn't work for you, don't fret - it doesn't work for a lot of people, although I know pumpers who would rather die than give up their pump. Keep in mind, too, that they are pushing pumps at type 2s more and more, which means the device will be used differently by that user group. I know I've been treated like a type 2 several times by doctors in my life, so make sure if you get on a pump, that your trainer understands you are insulin dependent. And I have to say, everyone makes mistakes, but this trainer I had was adamant that my active insulin setting at 6 hours was correct - we talked about it at least 2 times. Consider that even the trainers might not know everything, no matter how confident they seem. If, during training, you have questions you feel uncomfortable asking the trainer, bring those questions to your next appointment with your endo. It took me a year and a half to find out what was wrong with my pump and I had half a dozen endos/p.a.'s whose care I was under, and NONE of them caught it but my doctor at Mayo.

I'm sorry you had such a bad experience with your pump and with the pump trainer. We are fortunate that our endo reviews our pump settings at every 3 month appointment and is certainly willing to answer questions or discuss the changes I think should be made in my son's pump settings. The six hour setting would be very unusual - since most of the short actings are labeled to last 3-4 hours. IMHO, that is just WEIRD and would have been different than what you were doing on shots - where you are probably told to just wait 3 hours after a correction before giving another one. I would guess that would be the main reason why you would have had trouble calculating your own doses. I just feel bad that you had such a bad experience for so long. If corrected sooner maybe your experience with the pump would have been more positive. That said - I think your reasons for not liking the cyborg aspects of it are completely respectable reasons in and of themselves to decide that the pump is not for you.

I am only familiar with the Ping from Animas, but I am surprised that you were not able to over ride settings in the pump on your own - that it was dictated by the CGM and pump. Our pump calculates everything but I could punch in whatever I please if I decide I don't like what the pump has calculated. It is also possible to use the Ping much more like shots just using a Normal bolus where you just punch in the amount you want. I am surprised the MDT pump would not allow that.

Best wishes and I hope a quick return to better health now that you are on a care regimen that you are happier and more comfortable with.

I think I could have over-rode the pump settings, but once it started calculating things on its own, I no longer knew HOW it was making its calculations, and therefore didn’t know what to put in to override its decisions. When my new endo told me what my carb ratios were on the pump and what I should be at now that I was going back to using needles, I was surprised and how much less insulin I was getting from the pump than I was back in the days when I was without the pump. I’ve had to tweak things a bit in order to not keep going as high as I was with the pump, but am happy to say that my ability to manage my diabetes is better than what a machine can do currently. I am what they call a “brittle” diabetic - my sugars swing widely all the time and there’s no way to get good consistency with a pump, at least as far as I experienced.

My one fear, though, is still the lows I can’t catch. But, like I said, I think getting a therapy dog may be the answer.

I was given approval for a pancreatic transplant, but when I went to the information session about it, it was like they were trying to sell me a cadillac. I had done my research, asked smart questions, and decided that if being alive in 5 years is considered a success story, I’m not interested. The risk of cancer is so high from those immune suppressant drugs. I couldn’t believe how little I was told of the risks without me asking pointed questions about it taken from my research.

I think I was told, originally, to wait two hours before checking my blood sugar after eating, if I was planning to eat and take insulin again. So I agree with you, it was definitely WEIRD that the settings were so different. But I felt like (at the time I got the pump), what do I know about pump technology? Maybe it works completely differently, since it’s giving you some insulin all the time. But obviously, we were right and the pump trainer was being weird about this. I wish I could say it was a one time anomaly, but she repeatedly stuck with that setting as being the correct one.

I appreciate your feelings of empathy for what I went through. I guess I think of it as a learning experience. Just like when I was first diagnosed in the mid 90s with type 1, I was on a terrible regimen of, I believe they were called, Insulin R and N (NPH?). I was on that regimen for about 5 years, felt horrible all the time, gained a ton of weight, and had about given up on myself when I heard about this new insulin called Humalog, and that it was fast-acting. I had to go to my university health clinic to find a doctor willing to put me on it (my endo at the time was very conservative and refused, stating if I couldn’t control my sugars now, what made me think I could do any better with anything else?). But when I got on Humalog and Lantus together, my life completely changed. I lost all the extra weight, I could eat or not eat when I wanted to and I was fine either way - it was like I had my life back. My dad said to me at that time how sorry he was for me that it took so long for me to find a better solution. But I saw it then and see it now more as, thank God I found a better solution at all! What if I had gone the rest of my life without looking for a way to feel better, believing my doctors that this was as good as it would get for me? This is the lesson I learn again and again - to trust my instincts and be persistent about getting good health care. Although it’s a difficult balance, because sometimes I don’t know if I should just give up and accept the state of my health, or continue looking for answers. The continuous searching for a better state of being can be, in itself, completely exhausting. Intuition has got to fit in there somehow.

Anyway, thanks for writing back. I appreciate the feedback! :slight_smile:

WOW info girl,

 

You should not be using a pump .. too many problems.  I have been for 12 years and have NEVER had a single problem .. not even with the CGM system.  No one touch my pump except me.  I always carry a needle, lantus, and novlog and test strips with me. 

It is a pain in the butt!! But i get a level of freedom I did not have before.

The CGM is not perfect ... I know 20 minutes BEFORE my sensor knows I am having a hypo ... I only depend on it for "normal values" -- says a few pricks of the finger.  I still test 6X a day .. ++++ the CGM

The pump is not for everyone ...

Sorry it did not work for you.

 

Scott