Seeking words of wisdom from the more experienced

Okay everybody.  I've been doing the happy dance for a couple days now, ever since my insurance said, "Yup... looks like you would benefit from having a pump" and my doctor saying "DUH... I've been telling them that for awhile now".  So, I go in on 11/1 to get my pump and initial training and get to "push all the buttons" for a week with saline before I go "live".  My question, for all you pumpers, is - what tidbits of advice, secrets, suggestions, etc can you give me that you have learned on your own?  This can be either something your doctor/trainer didn't point out, or something that you have discovered on your own.

{Grandpa Richard - I know I know - change the site every 3 - 3.5 days to help with scar tissue issue.  <grin>}

Congrats on your pump! I went on my pump (Animas Ping) about year and a half ago and I love it; my last A1C was 6.7 which was the lowest it has ever been in the 24 years I've had diabetes. My diabetes educator started me out conservatively which was helpful; she was also great about having me fax in blood sugars and letting me page her as much as I needed to as I adjusted...I think that's key. Get as much help as you need!

After a few months I found that I was comfortable narrowing in on targets and ratios and fine-tuning a bit; for example, I'm a runner and at first I didn't want to change anything but after awhile I became ok with reducing my basal before a run or not bolusing as much for the meal I ate before running or reducing my basal at night after a long afternoon run as I go low in the middle of the night as a result. There's no exact science to it and I'm ok with that; I think you have to give yourself space to experiment and not be afraid. It can be overwhelming to learn about all the ways you can adjust rates, targets, times, etc; again, get as much help as you need.

The most wonderful thing I learned is that it's ok to take the pump off for a bit; I can have it off for a few hours to swim, lay out, or after I exercise, and not see any climbs in blood sugar.

The other thing my educator told me that I appreciated was that if I didn't like it, it wasn't permanent. Fortunately I love it! Overall it's been much easier that I thought and just another thing I have/I do to take care of myself; does that make sense? While I certainly still have readings that are high, being on a pump has given me a better overall feeling of control and as though I am making better decisions about how to address high blood sugars.

I don't know that any of this is particularly helpful! What kind of pump are you getting?

The first time I had to 'launch' the infusion set with the insertion device (I use the quick-serter) I was freaked out. I just could not get myself to push the button! So my pump trainer told me to think of a montra to say to myself as I was doing it. Mine in "I-am-okay".

The best advice I can offer, is read the manual. It makes the training make so much more sense if you have a clue as to what your trainer is telling you. Kinda like the first time you started MDI, there may be a little anxiety or worry. Just think, there are how many insulin pump users out there. If they are all doing it, it cannot be all that bad. Granted the first few times may be odd. I would ask whoever is going to be training you if they happen to have a few different infusion sets you can demo when you first get the pump. I started with one, was not really happy with it. Changed it a month later and was much happier with it.

Also, if the first few days your numbers are erratic that is normal as well. The trainers/educators try to base things on the info they have on hand like insulin to carb ratio, basal patterns, insulin sensitivity, etc. It takes time to actually get everything sorted out as well. So if your numbers seem high in the beginning or unnaturally low that is normal. This is why in the first few weeks of having the pump you need to be ever vigilant of testing often or as much as you are told to do. It will make the full transistion so much easier.

On the more lifestyle of pumping advice. It may take a few days to get used to having the pump on while sleeping. Make sure you put it in a pocket or clip it to your pajamas. There is nothing more annoying than getting up and having the pump try to tangle you as you are trying to wake up and go to bathroom. Make sure you have your tubing tucked in properly, otherwise you will join the welcome ranks of hooked to closet/bedroom door or any other tubing tale.

Adjusting may take time, but remember in the end if you are unhappy most pumps offer a trial period of sorts. But give it the whole time period before you give in. And never be afraid to ask questions. That is what we are here for to help and support others. Oh and make fun of them sometimes too. :-p

Laura - I am getting a green Animas Ping.  Yes... everything you said was helpful.  I'm having my dearest hubby read it all so that he can better understand and help me to remember things as well.

Brian - Funny you should mention reading the manual.  I am putting together a "medical" file (you know the kind with the clasps at the top so dr's can flip through the charts) so I can keep track of my warranty and everything and was thinking about the manual just this morning and how I was going to incorporate it in.  My medical supply people are sending a variety pack of sets with my pump so I can play with them and see which ones work best for me.  I will most certainly keep in mind making sure the tubing is tucked in.  My kittys like to play with everything and I don't want them thinking that a wiggling tube is something they should pounce on in the middle of the night.  I figured my numbers would be rather erratic  for a couple days.  That is the only thing that is helping me be patient.  My daughter is going on a school trip next weekend for 4 days and I am blessed to be one of the chaperones.  So the fact that I get to do that BEFORE trying to learn the pump is what is helping me be patient.  I can't even imagine doing a trip like that right after starting on the pump.  I would have rescheduled the training anyway, but still it worked out all on it's own.  :-D

This is something kind of funny to advise, but I will do it anyways. Don't be afraid to put the pump in different places. By that, I mean if you feel like hiding it in your bra so it is not hanging out, go right ahead. I stick mine all over the place. I have cut holes into things to run the tubes through just to make it easier on me. When I first got it, I always used a holster or a clip but as time went on I found it easier to just shove it places like pockets. I don't do the bra thing very often, but from time to time when I have certain dresses on that is where it goes :)

You will love the pump and the freedom it gives you. Good luck!

keep a supply of back up pump parts.  With my ping, I keep an extra battery cap, and an extra cartridge cap.  You will eventually need these things anyway.

Jason

Amie - I will make sure to have variety.  In fact, I think I might have a contest with my hubby sometimes to see if he can guess where I'll wear it.  :)  That sounds kinda fun.

Jason - You would think that would make sense... but I have to admit, I didn't think of it until you mentioned it.  Thanks!!

I think the most important thing for me is the fact that I am willing to change my numbers. For instance if I notice that I am high a lot during certain periods of the day, I will increase my basal rate...by the smallest amount possible, but it helps. I keep track of many of my numbers, and I regularly change my numbers. I think that's important to remember. That you are the one it's connected to, and you are the one that is impacted when you make changes...don't get me wrong, I'll follow what the doctor suggests, but I often change it because he prefers higher numbers (very annoying to me).

Now I'm NOT suggesting changing anything a lot all at once. I change one thing the smallest amount and see how that affects everything. Once I got past being scared of it, the pump has been very helpful.

Oh, and def, change the site every 3 days...and change locations. I used the same two spots (on the upper but fat area) for the first few years...and those were the ONLY places I used. Yep. I have scar tissue there now. So remember to change locations often!

Good luck!

 

Just wanting ideas from you all,

My son is 13 and has a minimed pump and cgm.  He has been wearing  the infusin set on his stomach and the cgm on his rear for the last year.  We do switch from left to right but there are only so many places in the three inch area. We did just switch the cgm to the front and the infusion site to the rear.  The cgm doesn't always insert so well on the front (maybe not enough fat?)  Where do you all wear yours and do some places work better for you than others?


I guess the only thing that I have to add to what everyone else has said is just "play with it some". I love my pump but because I didn't always have the money to go see the doctor and ask questions....etc etc etc.....I learned that it is really no different than shots, except you don't have to stick yourself so many times a day. You will learn, just like you did with shots, how to get your sugar back down to normal levels and also all the freedom that it gives you. I would also most definitely carry extra supplies, I can't tell you how many times my clumsy self has accidently ripped out my injection site.....(which isn't normal for most, however, I am just rough with everything and I don't pay attention). Don't worry about it, you will LOVE the care-free feeling that you will have after about the first week. =)

Regina,

I move my insulin pump (minimed) all over the place. I have placed it in my leg, arm, stomach, rear-end, anywhere that it doesn't "hurt" me. I know that for me, I actually prefer it in my backside or my stomach. The reasons for that is because I find that when I put it in my leg, I rip out that injection site because I have banged my leg against a desk, or brushed it against the bar getting off a bar stool.....etc. Though, I wear it in my leg when I am playing sports because it is less likely to get ripped out sliding in to a base, or playing basketball.

Congrats on the pump. I know that was months ago, so I hope you are loving it by now. There are so many good bits of information from this group, so the only things I have to add are, find the infusion set that YOU like, , keep an extra one with you and don't change your set within 2 hours of bedtime.

To add to what everyone else has said, lows aren't as bad with the pump, so make sure not to overcorrect and end up high. It took me a while to get used to that.

So I am TOTALLY loving my pump.  The lows aren't nearly as bad (very true Elie... thanks!), and also a lot more rare than before.  Getting the specifics down, and all the cool "secrets" (cereal bolus... coffee bolus) are helping so much.  I'm still doing the happy dance!!  {:-D