Omnipod made diabetes a larger part of my life
Insulet's goal to "make diabetes a smaller part of your life" is an admirable value. Yesterday I decided, after giving the Omnipod a five month trial, that Omnipod was making diabetes a larger part of my life!
I have been having trouble with pod-change highs and this community has given me lots of advice on how to deal with them. Thank you for that. I think I found an effective workaround using a 7 unit syringe bolus at the time of the pod change. That seemed like a drastic amount compared to many others here but it worked for me.
I also experienced problems with unilateral pod deactivations and occlusions. It was an occlusion early yesterday morning that made me decide to finally give up on the Omnipod.
The night before I went to bed with normal blood glucose but was awakened in the middle of the night with a 180 alarm. I took a correction dose via the pod and went back to sleep. When I rolled out of bed in the morning the pod sounded a continuous screech. I quickly checked the PDM and discovered an occlusion report.
My CGM showed that I was over 200 for the last eight hours. In years past I survived these situations with few symptoms other than the usual grogginess and the more general "blah" feelings.
Now, however, my gastroparesis rears its ugly head. I'll save you the impolite details but I doesn't take much imagination to understand the nature of my distress. It was no way to celebrate Thanksgiving Day!
I pulled the final occluded pod off of me and hooked up my old Animas Ping, out of service since last July. It took me until noon to get my BGs back into the normal range; I spent over 12 hours above 200. Yesterday's occlusion was the final straw for me. I gave the Omnipod plenty of time to prove its merits. For me, at least, it failed. While my experience with tubed pumps also included occasional absorption problems, the Omnipod was giving me these problems a couple times every week. I was adding hours and hours of unnecessary hyperglycemia.
I understand that the Omnipod system works well for many here. I think that's great! When I started on the Omnipod last July, however, I was well aware that a significant slice of attempted Omnipod therapy adoptions failed. I read about them here and elsewhere.
The system, however, intrigued me. It's use of wireless technology and elimination of tubing attracted me to try the system. Access to new sites also motivated me. Insulet offered to sell me the PDM for $200 and bypass my insurance. That allowed me to try the system without having to make a four year commitment. I am now especially grateful for that. I am still eligible to buy a replacement for my four year old Animas Ping and my insurance will cover it.
I read many idiosyncratic reports about not wearing the pods cannula down, problems on certain body locations. It seems everyone had their own personal list of do's and don'ts that sometimes seemed capricious and superstitious.
I made many calls to customer service, sometimes for my personal education, to learn how to effectively use this device. The customer service was very good about replacing pods when one of them failed. The thing that I could not understand was Insulet's deliberate decision to keep me in the dark as to the actual meaning of the alarm codes that they wanted me to read to them. I'm very much a hands-on technical "under the hood" kind of guy. I want to know how something works and why!
I filled out an Insulet online survey recently and I wrote a few sentences in the box supplied for general comments. I gave some details about my pod change hyperglycemia. The form asked if I wanted to be contacted by Insulet and I responded "yes" and filled in my email address. I never did get a response to that.
I know, I know, I know. We all go to great lengths acknowledging that each of our diabetes varies. But my experience with the Omnipod is congruent with many before me. Omnipod suffers from some significant (and yet to identified/recognized) design flaws that Insulet doesn't seem to want to talk about. (What's up with those large size air bubbles that I found in several of my discarded pods??!) I just wanted to go on the record here so that future Omnipod prospects will see the challenges that one person experienced. And maybe my experience will influence, in a positive way, the future development of this patch pump.
Tags: Insulet, Ominpod, alarm codes, occlusion, pod change hyperglycemia, pod deactivate
Replies to This Discussion
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Permalink Reply by smileandnod on -
This has been a really interesting thread to read and I've really enjoyed that everyone has been so respectful of each others feelings.
I've been on OmniPod almost a year now. I'm Type 1 for about 26 years, so about 25 of those years on MDI. I resisted pumps of any type before I switched to OmniPod because I didn't want to be attached to anything and my endo felt I would only see incremental improvement in control as I was doing well with MDI - Humalog and Lantus.
As I approach menopause, hormone fluctuations have caused wild bg swings. I experienced some very scary drops overnight on Lantus during this time with MDI. I had to try something so OmniPod was the next step, with the ability to vary my basal rates and not be "locked in" to a long acting insulin dose... as in once you take the injection, you can't un-do it. About the same time, I also began using Dexcom.
In the first few months of OmniPod use, I had some issues with post pod change highs too, but I've never had an occlusion alarm at all. What I have found, about 10 months in, is that I know which sites on my body give me the best results with my pods. When I use those sites, I rarely have any type of post pod change and I have consistent results except for when the hormones are flaring - and I can usually tell it's hormonal due to other symptoms.
My abdomen does not work well for me for pods or for Dexcom sensors, I guess because of using my abdomen for injections for so long. The combination that works best for me is pod on my hip, Dexcom on my upper arm. This combination works well for me and is hidden by clothing so I can at least pretend to the world that I'm "normal".
This frank conversation has reaffirmed for me that there is no delivery mechanism that is without cons, for me anyway. If I could go back to MDI and get the results I had for many years, I would do it in a heartbeat... but I would lose the ability to vary basal rates and make quick changes throughout the day through temp basal rates. And my last experiences with Lantus would scare me in trying long acting insulin again. And then there's the math.
And the tubed pumps would come with that much more in the way of "stuff" and supplies, learning to sleep with tubing and a pump either attached to my pjs or floating around. All of the extra stuff, for me, equates to spending even more time focused on Diabetes. At least the automated insertion of the OmniPod takes part of the hassle away.
I completely empathize with Benjamin's description of wanting to feel free because that says it so well. I wish you all the best in finding your way.
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Permalink Reply by Terry on -
smileandnod - Thank you for adding another "face" to the truth about the Omnipod. I'm glad that you thought the discussion here is respectful. I prefer that but I was concerned that some of the responders seemed threatened with my Omnipod failure.
I happy to read that you've found a system that works for you. I think that it's important that long term T1Ds have to experiment with using alternate sites for infusion and/or CGM sites. I've tried my lower back for the pump site with limited success. Right now I have the Dexcom on my upper arm but I'm not thrilled with the correlation to my fingerstick BGs. I'm going to keep trying with these alternate sites because I don't have much choice, except to going on MDIs. I haven't done that in 25 years or so.
You mention that you used Lantus. Did you ever try Levemir?
Your struggle with BGs with respect to menopause sounds difficult to me. I guess I should count my blessings, as a male, that I don't have that challenge! Good luck to you.
By the way, I like your screen name "smileandnod." I'm thinking that that is a great way to deal with endocrinologists that just don't get it. Sometimes what you don't say is more important than what you do...
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Permalink Reply by MaryMary on -
Terry, It's silly to me that anyone would feel threatened. A while back there were lots of people posting on a different site about problems and thinking that some pods were defective. I always thought that at any time we could be opening a box that was really bad, so I paid attention to those threads.
I am seriously ticked off with Insulet right now because I am trying to get a new PDM by the end of the year and I had to make 5 phone calls to them to finally get a fax sent to the endo. They don't even know their own product and programs! We used the cut the cord program that has only a two year warranty, but I had forgotten that until I was thinking about it the day the FDA announcement was made. When I called Friday everything was supposed to be taken care of. Fax never received, so called again and again and kept being told they would send it again. Then I was told that they were looking into it because she was still in warranty. The girl had to go ask her supervisor if I was correct. I could have read it to her from their own website. So, 9 phone calls later, the doctor finally got a fax. I have no idea if there will be enough time now to get this done. If not, it will cost me $800.00 out of pocket and they may just lose a customer.
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Permalink Reply by garidan on -
Or you'll be first in list to receive the new PDM and new pods: they'll change them for free. Did you brake yours ?
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Permalink Reply by MaryMary on
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You will only get a new PDM free if you are in warranty. The warranty for the "cut the cord" program is 2 years, or the length of time left on your current pump warranty, whichever is more. Once the warranty is up, you need to go through insurance in order to get another one. Most people do that, even though it isn't broken. Otherwise you will have to wait for the process when something does go wrong with the PDM. If you are in warranty, they will ship out one that same day.
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Permalink Reply by barend on -
Sorry to hear your sad story. In Europe Ypsomed is the distrbutor of Omnipod. After having started in July this year I must say they are accurate in solving any problem. Exampl: I had a box of trouble pods. I called and within 1 hour I received a complete new box. If it would help you you could get my old PDM It's useless to me now as I am on the next generation. I trust shipping costs will be less than $800. I am not sure though whether the language can be changed. (Dutch-> English)
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Permalink Reply by MaryMary on
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Thanks for your offer, but I am hoping that they will get this taken care of for me. If not, I may just insist that they do the upgrade free anyway, because they are the ones that messed this up. I should have been notified that the warranty was about to be up.
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Permalink Reply by Scott Wilkins on -
I've had problems of this type with other medical products. Turns out there is a mad circle between your doctor, your insurance and the medical supplies distributor. So your problem could be at any of those three. Insulet may be the issue, but so also could be your doc and insurance. So cover your ground at both of those too, if you've not done so already. Get ready to be really upset though, as the insurance companies seem to be trained to confuse rather than help. Mine turned out to be a lazy doctor's office manager who kept dropping the ball on paperwork with insurance, who was not helping much either.
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Permalink Reply by Scott Wilkins on
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"Truth"?!?!? You confuse opinion with facts. Stop being so anal. You only make yourself out to be bad.
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Permalink Reply by Terry on
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Thank-you to everyone for participating in this thread. It's actually gone on much longer than I thought it would. I really like reading threads where many different people can add their point of view. I learned not only about myself but also about other's struggles.
I also learned that sometimes people can write things that are neither helpful nor illuminating. Unfortunately, this anonymous medium that we use allows bad behavior. It's the price we all must pay to enjoy the benefit of a site like TuDiabetes.
Most of us get that we are not competing in some grand online game called "diabetes." We don't see each other as competitors where if "they" win then we lose. But some, unfortunately, don't share the ethos that we're all in this together! When another D poster shares a victory, we all win. When someone else tells their tale of struggle or a failure, we can commiserate and share the burden but we can also ***learn*** from them.
Peace.
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