How much training and support did you get when first starting?

After 2 mos on the pod, I’m feeling like I’ve not really been educated on how to adjust my settings. The first session I had with the CDE went over how to operate the PDM (basically everything in the online training) and entering in of my initial settings. Then I had my pump start and she went over info about how to handle highs/ketone testing and a small bit on temp basals and exercise. I started right before Xmas and had email contact with the CDE and gave her my numbers (which were often high). She ended up getting sick so I didn’t hear from her too much after that. I was erratic enough that I went on a CGM when I went back for my 1 mo follow up. She reviewed my records on the PDM and gave me some guidelines on trying extended boluses. I emailed her this past week asking about my CGM results and also saying that I didn’t feel like I had enough training to knowledgeably adjust my settings. She said that a quick look at the CGM results made her think some of my basal rates should be lowered to prevent lows (which I’m having some challenges with at times during the day). Said my doctor has the results and I know I"m not going to hear from him until my appt in a few weeks.

I really feel that I haven’t been given enough education to learn how to adjust my basal rates and get my highs down. She said that everyones’ pump experience is different and that I have to build off of the “basic” knowledge that she went over with me. Believe me, I do understand that some of this is going to be trial and error but I feel like I’ve been shown what buttons do what and now I’m expected to simply start “playing”. I feel there has to be a better and more educated way to do this. I want to learn how to effectively manage this myself but feel lacking in the needed tools to do so.

How does my experience compare to the training and education you received when first starting?

My Dr is out of the Joslin Clinic in Boston, having looked into a “pump” 4 or 5 years ago i dediced to revesit the issue after doing research on the OmniPod (i would only consider tubeless options). Joslin has been extremely thorough in giving instructions and training. After going how to program it and how to arrive at basal rates etc they had me utilize the pods/pdm for a week with it filled with saline. I continued to use lantus for the evenings and would bolus based on my bgm readings once calculated in the PDM. After a week the initial settings were slightly adjusted and i went “live”. It’s been about 5 weeks and i’ve had weekly followups with my CDE which have resulted in additional tweakings and the addtion of 3 different basal settings. Joslin has also had me meet with a nutrionist for a refresher course on advanced carb counting and also a meeting to discuss how exercise and working out can be started again now that i’ve adjusted to the pump. Everyone has been very accomodating and responsive and always return calls or emails promptly. I hope this is helpful and i hope you get more comfortable wth your OmniPod use.

Hi David,

Get Pumping Insulin by Walsh & Roberts. It’s the “pumper’s bible.” I read it before I went in for training, and it gave me 99% of the answers I needed.

Thanks very much for the reply. I’ve read other clinic’s pump start schedules (and it seemed similar to what you’ve said) and it seemed like mine was lacking in comparison, your description of how you started has just confirmed that feeling.

Mike

Thanks for referring me to that book-it is an excellent resource. I actually have it and reading it only confirms in my mind that I would like professional guidance to get myself started managing this thing. Yes, I would utilize the book to manage on my own once I’ve got a handle on how to adjust my settings. I personally feel that I shouldn’t have to use a book to figure out how to optimally manage a pump (in addition to not being very clinically sound or effective).

Thanks.

I had the same experience. I think it’s all dependent on your individual CDE. I think I met with her once, sent read outs two or three times and spoke 3 times. The last time I emailed her, her response was more or less “don’t call me, I’ll call you.” I also don’t feel like I really know how to adjust, but I’ll admit, I have number phobia and these ratios seem all weird. I’m ordering “Pumping Insulin” today. I told my Doctor and he said don’t worry, we’ll take care of you but I only see him every 4 months, I’d really like to feel more confident in making adjustments myself.

I also go to the Joslin Center. I think your Dr really dropped the ball. My Dr reviewed my numbers from PDM for the first 2weeks and tweaked numbers many times. After that it was smooth sailing. You should not hesitate to fax your numbers to your Dr, and he should call you back with any adjustments the same day. If not find a new DR.

I don’t know that we got any more training on adjusting basal rates. Some practices don’t want you learning how to do this on your own, and some practices don’t have the time and resources to help patients along. It is frustrating. Adjusting basal rates is much more of an art than a science, everyone is different. It takes a little while to get things dialed in correctly after you go on the pump.

Pumping insulin is a great place to start. Don’t give up on the pump!

Hi David,

My CDE trained me very well. I had to write down everything ( my food, carbs, BG,times etc) and we talked every morning at a set time for 6 weeks! In order to figure out my basals, I had to skip meals and test every 2 hours around the clock and then adjust accordingly. An example: Wake up & test, skip breakfast and continue testing every 2 hours until lunch, then eat lunch and continue testing every 2 hours until morning the next day. Do this for 2-3 days. Then wake up, eat breakfast, test ebry 2 hours but skip lunch. Again for 2-3 days. Then wake up test, eat breakfast & lunch but skip dinner. Do this for 2-3 days. On our morning daily call we would discuss the results in detail and she would help me adjust the PDM accordingly. I am now pretty confident to change my settings when necessary. I also still go see her every 3 months. I think all CDE’s train differently, but this way worked for me. Good luck.

My daughter’s doc does something similar, but we do 6-8 hour blocks with no carbs to see if the basals are correct. If she goes low during that period, we have to lower her basal amount for that time, and vice versa if she goes high. Sounds like you could’ve gotten some extra training, but my daughter’s doc expects us to make changes on our own. She said that any time we see similar readings for three days, it’s a pattern and we should make a change. So, if you’re going low around the same time each day, lower your basal by .05 beginning an hour or two before that time, and see how it goes. You can always change it back. Your doc and CDE can give you advice, but ultimately, it’s a lot of trial and error. One of the CDEs also told me to look at the ration of bolus to basal, and said that these numbers should be roughly equal (there will be variance depending on the number of carbs you eat, but she said it should be around 50/50), and that if it’s wildly different, like 70 percent bolus and 30 percent basal, your basals probably need adjusting.

Apparently from the responses, your “mileage” does vary depending on the CDE! I had the same kind of response from my last email to my CDE too. She said if I had more questions to contact the OmniPod rep. Gave me the feeling that’s all I’m getting from her. The pump offers too many benefits to simply start playing without having a good foundation. I did call my OmniPod rep and she agreed that you need a good foundation before really knowing how to adjust things effectively on your own. She’s trying to arrange more training for me with one of the local reps (she herself is not in VT very often). Maybe you should give that a try yourself. Good luck!

Matt,

I was thinking the same thing about dropping the ball and that’s why I started this thread-to see if my experience was vastly different than others’. No point in faxing the numbers to the doc. I don’t think I’d hear anything until my reg 6 mos appt which is in 2 weeks. When I was going crazy trying to avoid lows late last year before deciding on the pump I contacted him and the response was a letter in the mail a week later. I’m seriously considering going somewhere else.

Yes, there is only 1 person doing the pump trainings where I go so I can imagine she is stretched pretty thin. I do understand there will be trial and error in this process but I still say professional guidance is vital in the beginning so you can learn to manage on your own.

Don’t worry, I’m not giving up on the pump.

Serena,

Thanks for your reply. You’ve given me more concrete info on how to make adjustments than I got from the hospital!

Gail

This way would have worked for me too! I’m glad you feel confident in making changes for yourself and I can see why you do with good training like that.

David,
Don’t know if you’ve ever heard of Gary Scheiner or T1 University, but he’s a CDE with Type 1. He wrote the book, “Thinking Like a Pancreas,” which is very informative. I just looked and T1 University has an online class on fine-tuning your basal rate: http://www.type1university.com/index.php?option=com_eventbooking&view=category&Itemid=26. I don’t know anything about how they run this program, or if it’s worth the price, but for those of you that live in areas that aren’t well-served by diabetes experts, like those at Joslin, it might be worth a try. Has anyone out there given this a try?

Serena,

I actually looked in to the 3 mo pump optimization program that they offer. Sounds just like what I am looking for. It’s 299.00 for the 3 mo program and 135.00 for the initial consult visit. I was thinking it would cost more than that but it’s still no small change. If I can’t get what I need from an OmniPod rep, I’m thinking of going to a different clinic (I found out they give you 3 weekly visits right after starting the pump). when I told them about my situation I was told they could provide the training I needed. If none of those options pan out, I’ll shell out the money for the program.

Yikes – that’s definitely no small change. The class I saw on basals said it was 29.95. I wonder if you have to do all of the classes, or could just pick and choose what you need.
I’d keep after the OP rep, you should be able to get someone. Obviously, in person is better, but maybe the OP rep could walk you through some of your specific questions on the phone or by email?

As to changing clinics, if I didn’t hear from my daughter’s doc or CDE for weeks after submitting numbers, I’d be outta there very quickly. We faxed BS numbers, along with a diet diary daily for several weeks after my daughter started the OP. And, if they felt a change needed to be made, I’d get a call that day. If I ever have a question, I get a call or email back the same day. BUT, I live in the NY metro area, so we have far more choices than a lot of areas in the country. I know a lot of people don’t have many options, but if you do, you might want to give the other place a try. Good luck!

the program I’m referring to is not the type 1 university. You are right about the 29.95 fee for those and it sounds like you can pick and choose among the topics.

The nurses are good about calling me back but they can’t do anything but tell me that my message has been forwarded to the doctor in some cases. They are helpful if it’s something they can assist with. I’ve been pretty frustrated too that I keep pretty meticulous records and I am rarely asked for anything. I got a pump journal from my CDE on my start date and took it with me to my 1 mo follow up but do you think anyone (she or the RD) asked to see it?

I hear you about limited choices and I “thought” I was making a better choice by traveling almost 2 hrs to get to Dartmouth in NH.

It all depends on your dr’s office. My dr just “set me free” with no help at all. My son’s, however, was very hands on. Luckily, I was able to learn from my son’s dr (we went on the Omnipod a few weeks apart). It was sooo hard getting basals correct on my own. My Omnipod rep helped me out a bit, too. I am no longer with that dr’s office!