Since I’ve started sharing my journey to acquire, complete training on, and ultimately manage my diabetes with an insulin pump, I’ve been receiving all kinds of feedback across various social mediums. Thank you for that. One interesting comment that keeps popping up is a sense of surprise at my patience through all of the hoops and hurdles I’ve encountered along the way. A number of people have added that they didn’t have to wait nearly as long as I am to start pumping insulin, be it immediate training, or skipping training altogether. If possible, I’d like to take an informal poll here, to round out this particular branch in this discussion.
If you’ve ever worn, or are currently wearing an insulin pump: When did you start wearing your first insulin pump? How long did you (have to) wait after you received your first insulin pump before you started on insulin? Did you meet with a CDE before hand? Did you jump in without formal training? What additional resources, if any, did you consult in your first weeks?
Given the resources available at the education center and medical offices I’m part of, waiting is my most prudent path forward. Yes, it’s excruciating waiting this long, especially with my insulin just sitting in my fridge. And yes, I am about to marry a current t:slim user and could get all the “training” I need from her. But this is my decision to make. I feel it’s safer to work within the system so there’s a formal record of the process taken to start pumping insulin. On the remote chance that something goes wrong, or I end up in some kind of emergency, I need my medical team to have the most up-to-date information at their disposal. Waiting to start insulin on their terms is the smart thing to do.
But enough about me, if you have a moment, I would appreciate your feedback. I’d love to get a sense of the variety of approaches you all have taken to get to where you are with your diabetes management.
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Probably not that helpful because I went on the pump in 1993, but – I had to actually be in the hospital for 5 days with constant monitoring. So, to me, two weeks of saline and other educational exercises doesn’t seem out of the question. Admittedly, some of the crap you’ve put up with so far would have made me bonkers though – so maybe I’m the out of touch one. Whatever you decide to do – good luck! Congrats on taking the next step!
When did you start wearing your first insulin pump? = after being on MDIs for about 8 years.
How long did you (have to) wait after you received your first insulin pump before you started on insulin?= Was supposed to wait 2-3 weeks until I could meet with the pump rep, but I worked out basals and ratios ahead of time with my endo, so I started using the pump the week before my official training.
Did you meet with a CDE before hand? = No, just the pump rep.
Did you jump in without formal training? = Yes.
What additional resources, if any, did you consult in your first weeks? = online training resources, my endo, a friend who had the same pump.
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I started pumping in december 2000 after being fed up with having to feed my long-acting insulin all the time. I wanted a system where I could adapt my basal rates to my real needs. While waiting to receive my pump in the mail, I read John Walsh and Ruth Roberts’ Pumping Insulin (at the time the 3rd edition) cover to cover. A few days after receiving it and having watched all the accompanying videos, I met with a CDE and pump trainer for 3 hours. We filled a cartridge and inserted an infusion set together. We calculated some initial basal rates and she gave me some tips on adapting them.
Then I was on my way, just with her phone number in my pocket in case of big troubles over that first weekend. So for me, no saline, no extra waiting. This system suited me just fine but I know many who receive and are thankful for a little more hands on support before making the switch and for the first few months on the pump. My main support was through the insulin-pumpers forum which was the only real online pumping community at the time. (note: I was living in Canada at the time).
I feel your frustration during this process. I hope it gets smoother from here!
My response became a bit long to write as a comment, so I posted it here: http://wp.me/p2aBl3-1fA (hope you don’t mind the link)
I started pumping in July of 2011, and I did not receive my pump at home. The manufacturer sent it straight to the endo/CDE, and once it got to them, I went down for a two-hour formal training meeting with my CDE. I had to go back one week later to tweak my dosages, but otherwise I was mostly given a crash course and them told to email/call with any questions.
I am a CDE and Certified Pump Trainer. I wish some of my patients had posted their experience here so I would know what is actually thought of the process we go through.
When someone is interested in a pump, or has questions, I meet w them, ask why they are interested and learn about their reasons for wanting a pump, their current “baseline knowledge” about living with diabetes, what they already know about pumps, current A1C, #of times/day they check BGs, current insulin regimen, any physical barriers (like low vision, or arthritis or neuropathy in the hands) and comfort with carb counting.
Then I review a packet I made that has 4 pages of info. P1 describes what pumps are and how they work (handy to share w friends/family). P2 lists the current pumps and their websites, and a list of “requirements” before the doctor will sign the order for the pump. P3 lists benefits and risks of pump therapy (the benefits section is obviously way longer than the risks). P4 lists the paperwork and self training, then in person training process.
The “requirements” are that a person knows the pump is an awesome tool but is not a cure, the A1C is low enough to show the person is taking basal and bolus insulin without fail (A1C is negotiable), someone is checking BGs often enough to troubleshoot/prevent DKA and so we can determine and adjust settings, can keep records (in paper or electronic format) so we can assess carb counting and determine settings, an ability to get through the bulk of the pre-pump checklist, and a willingness to meet w the CDE several times-as often or as many times as someone needs/wants until they are empowered, full of knowledge and real world experience, and we (patient, CDE, doctor) feel comfortable/confident this person will be healthy and be very successful on the pump. The process could take 2 pre-pump visits, 1 start and 1 follow up pump start visit if someone has been doing a lot of research on their own. It could take a year if someone wanted to take their time or couldn’t/doesn’t want to learn on their own…
Thank you for your input on this one Tavia. I appreciate you taking the time to give the reasons for your process, and trust that your patients leave fully informed and educated. Based on what you’ve commented, I’ve gone through the same process you’ve outlined if my first endo visit counts as the first pre-pump session. My biggest concern at this point is the length between visits. Two weeks on saline seems like a bit much – even if that’s the soonest I could return to the education center given their resource constraints.
I got my first pump in 2006 (Medtronic) after being on MDI for a million years 😉 For the few months prior to the pump, I worked more closely with my CDE at the time on carb counting and correcting and the like. I don’t recall the exact time frame but once the order for the pump was in, I met with her and she hooked me up with saline. I did that for a week I believe before I was put on insulin. That was the only formal training I had. I may have asked some questions to the group I interacted with on MySpace. I know!! That was that. When I switched in 2009 to the Animas, I actually had no formal training whatsoever. I got the pump delivered, set it up myself and started using it. There was definitely a mix up because it turned out my CDE was supposed to train me, not Animas, but she never reached out to me. Glad I didn’t wait on that one! But I know that’s a different scenario coming from another pump. Sorry you’re having to wait so long. You’re definitely more patient than I would be 🙂
I was diagnosed on a Thursday in 2009, was given some insulin pens right away (long and short acting) and instructed how to use them, as well as insulin vials. Saturday a CDE came to my house with a loaner pump which I started on right away (with insulin, not saline!), the next Tuesday my own pump was delivered and it was perfect timing as it was time to change my site anyway! So the process was very, very quick for me, but I did get alot of training and support. It also helped that my little brother had had Type 1 for years already.
When I switched from the minimed to the t:slim I did have to wait about a week after I got the t:slim to do the training with a nurse. I didn’t use my t:slim before doing the training, for some of the reasons you’ve considered here, but I did try doing a cartridge/site change on my own and felt pretty comfortable so it did just seem like a formality.
You’re really patient. I would have had a conniption if any of my endos ever told me to spend 14 (!?!) days on an insulin pump with only saline in it. I try to be really proactive in my betes management, and so it’s really important that my endo/CDE respect the fact that I’m an intelligent, capable person, who can actually figure out alot of things on my own–I just need the support/guidance, and the medical background for explanations of mechanisms.
Hey, Chris — I’m on the same page as many others, in not quite understanding all the mandatory hoops you’re having to jump through. I get precaution and safety, sure. But it sounds to me like “textbook patient’ing” by your doctor’s office. You may be a new pumper, but you’re not quite a newbie to the pump world like many newly-dx’d or others may be. I would hope any practice would be willing to have a dialogue and meet half-way, instead of “their way or the highway.” But, it’s their show I supposed. For me: I started pumping in 2001, when there were only 2 pumps on the market. I received my pump a few days ahead of then, and only waited because I was too nervous at the time to put sites in without having someone show me IRL first. All smooth from there. One thing that I think would help alleviate some of the frustration people have is not allowing them to get their pumps before training; if it’s so mandatory, the pump companies should send the pump directly to the rep or doctor so you can’t get it before and start using (and also won’t be tempted by it).