My first impressions with an insulin pump

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1

Posted 06/22/2009

See updates below

I started on the Minimed Paradigm 722 with Continuous Glucose Monitor on Thursday and it has been 3 days and 4 nights so far.

The insulin pump:

Very easy to bolus and correct high BG readings. This is about the only positive thing I can say about the insulin pump. When I was on Lantus + Humalog, I never bothered to correct if my BG was <=200 mg/dL. I always relied on my Lantus to eventually bring it down to an acceptable range. I am aware of the damage caused any time sugar levels are above normal and that my goal should be to limit these high BG excursions to as small a time period as possible - but I always reasoned to myself that when I try to take a Humalog shot to correct my BG I invariably ended suffering a hypo a few hours later and then overcorrecting that hypo. I’ve been on too many such rollercoasters and they are something I try to avoid - even if that meant higher BGs and higher A1Cs. And I hate hypos. Really really hate them.

I am still not used to the pump connected to me 24/7. I experience a lot of discomfort when the tubing tugs at my skin or shifts. I changed my infusion set yesterday and was aghast to see the wound when I removed the canula - unlike an invisible hole of an injection site there is a big gaping hole in my skin! How long does it take to heal? And can I use the same site again? This sight alone almost made me give up the pump immediately. I’ll give it some more time.

All spontaneity when playing with my kids is lost. This is another big reason I’m contemplating giving up the pump. I have 2 small children - barely toddlers - and I can’t play around with them like I used to. I have to mind my tubing whenever I pick them up. I cannot pick them both up like I used to - I can only carry one on the side that is not connected to the pump. I can no longer lie on my back and have my kids on my chest - I tried that and my insertion site got a couple of kicks and made me wince. Just writing this makes me feel like removing my pump and going back to multiple daily injections.

The CGM:

What a waste! That’s all I can say about the CGM. And here’s why:

It’s not accurate. I know, it is supposed to be used to see how the BG levels trend, and warn when the levels exceed the limits you set. I can know the trend if I just checked my BG more often. I still have hypo awareness and I don’t need the CGM to warn me about those. As for hyperglycemia - I check my BG after meals until I see the levels dropping anyway.

What good is the warning when the readings are so wrong? My CGM warned me that I was having a low and displayed 65 mg/dL . I did not feel like I was at 65 so I checked with my meter - 109 mg/dL. My CGM readings showed a steady 135 mg/dL 2 hours after lunch. I doubted the readings and checked with my meter - 244 mg/dL! These are just a couple of instances - there have been many more during the brief time I have been wearing the CGM. I especially hate it when the CGM shows a smooth line of 134-136 mg/dL after eating when in reality I’ve reached >250mg/dL.

My conclusion is that CGM is not useful to me. It is definitely not useful when my goal is to achieve tighter control because the readings are so unreliable. And the postprandial readings are always lower than the actual readings and expose me to high BG by giving me a false sense of control.

I’m going to talk to my doctor and get rid of the CGM. In addition to being a pain to insert and remove, it is totally useless to me in my quest to achieve optimum control with my insulin pump.

Conclusion:

I hate the pump. The only useful thing is the ease of bolusing. I hope to achieve tighter control because I hate giving myself injections of 1 unit and could never achieve the tight control I always wished for. I’ll stay with the pump for at least 6 months to see how it affects my HbA1C and how much of a hinderance it is when I interact with my kids.

I see no use for the CGM. If only it was accurate and reflected actual BG levels. Plus it’s a pain to insert and remove.

Update 06/23/2009:

Thank you all for the comments and suggestions. I have had some more time to get used to the pump and I find that it is indeed a very good thing I did by switching to the pump. In my 3 days of CGM readings, I discovered some patterns there during which my basals needed to be adjusted - couldn’t have realized this without the CGM readings. Though I still feel it is inaccurate, all I was looking for was how the steady BG levels varied during the day and night. I removed the CGM yesterday and I’m thinking that I’ll put another sensor in and monitor the levels for a week or so until I get my basals sorted out. I’m getting more accustomed to having the tubing on me and the occasional tug doesn’t bother me so much anymore. I have put a small piece of tape to hold the tubing after the insertion site so that it stays in place and doesn’t stress the canula. My BG control is already much better than during my MDI days - the highest I’ve seen so far is 291 mg/dL. I’m still playing around with my carb ratios and insulin sensitivity to get the bolus wizard right.

I can see that my post shows a lot of frustration with the pump and CGM - that was how I felt about it and I’m not going to change what I wrote. But I will add updates or, if the content is substantial, new posts as I learn to live with my pump.

Once again, thanks for your support.

Update 06/24/2009:
I guess I will stick with the CGM for now. Reading the blog mentioned below and the comments there convinced me that I should not be so negative about the CGM or the pump. Go have a read at Continuous Glucose Monitoring with Medtronic/MiniMed Updated | The Misanthropic Principle

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How discouraging!

I’m equally averse to being tethered to tubing. If I were you, I’d stick it out a while longer in case I got used to it. Lantus/Humalog works really well for me but I am tired of the daily needle jabs! Down the road, you might consider a tubeless pump like Omnipod. Minimed is also currently developing a tubeless pump. As far as CGM, people do say the performance can vary from sensor to sensor, so try a few more sensors to see if it gets better. The sensor technologies used by different CGM systems are different and you may get better results from a different system.

3

Hi John! Sorry to hear that the pump start has not been encouraging!

The pump definitely takes some time to get used to. When I started on it, my doctor made me promise to stick with it for six months and she said to expect it to be harder in the beginning and get easier later. I found her advice to be just right in my case.

The pump isn’t for everyone, but it can offer some real advantages. In addition to the ease of bolusing, you can have different basal patterns for different days and times of the day. But in order for this to be effective, you need to invest a lot of time into getting your settings right (basal rates, carb ratio, etc). This means lots of testing in the beginning.

Suggestions for some of the struggles that you are facing:

  1. you can wear your pump under your clothing so that you don’t need to worry about the kids catching on the tubing. For example, I sometimes wear my Minimed 722 pump on my upper calf using a sport MP3 player holder. Or try a SPIbelt or similar holder and wear the pump in a way that you can tuck most or all of the tubing in (if you buy a SPIbelt, use the code: tu10 to get a 10% discount).
  2. You might want to try a different type of infusion set. I can lay on my infusion set with NO pain (and I often do). I use 6mm Quicksets, but I know when I used 9mm Quicksets they hurt a lot more. I also have read great reviews about the Sure T infusion set. You should be able to get samples from Minimed or your pump rep.
  3. If you don’t already have it, I HIGHLY recommend the book Pumping Insulin by John Walsh. It’s a comprehensive guide to pumping that taught me a lot about how to use the pump effectively.

I have never used the CGM, but I have heard very mixed reviews about the effectiveness of the Minimed CGM. But some people have found it to work well. I once heard a recommendation that you should not over calibrate (only twice a day when it requests it) and that you need to be sure to calibrate when your blood sugar is relatively stable.

Hope that you have more encouraging experiences with the pump! It does take work, but I have found it to make my life a lot easier and give me much better control!

4

Hi Kristin. Thanks for the comments. I’m definitely sticking with the pump for at least 6 months. I agree that programming basals is also a big plus for the pump - I forgot to mention it in my post. I’ll have another post about this in 3 months, when I get back my first post-pump HbA1C.

I use the Silhouette infusion set and I wear it on my abdoment. When this is the case, it becomes a very sensitive issue when I play with my kids, especially when I pick them up and carry them. Unfortunately, I can no longer carry both of my kids at once, like I used to before the pump. I’m usually very active and playful with my kids and suddenly this is no longer the case.

I use an old cell phone case worn on my belt for the pump. Do you put the infusion set on your calf? What insertion points do you use? I am not aware of any other places other than the abdomen area.

I have ordered the book by John Walsh and I will be reading it this week.

As for the CGM, the Minimed rep told me that it carries only the previous 6 calibration readings in memory and if the calibrations are not done when the sugars are ready the readings go all over the place until the 6 readings are again from stable sugars. I have been careful to calibrate only 3-4 times, and that too only when I have very steady readings (+/- 3 mg/dL according to the sensor). But the inaccuracy really makes it worthless.

Thanks also for the dual bolus tip. I’ll try it when I have pizza next.

5

For infusion sites, I was told to ONLY use the abdomen. The truth is that I find that to be the LEAST comfortable. After consulting with other pumpers, I started using other sites and I found that the absorption is JUST as good. My doctor still tells me to only use the abdomen (so I put the infusion set there before I go for my endo visits :wink: … ). The most important thing it to rotate the sites so that you don’t develop scar tissue.

Any other time, I use the upper buttocks, lower back (“love handles”), or upper thighs. I particularly like to use the Silhouette on the upper buttocks and upper thighs. I use the Quickset rather on the love handles and abdomen. I highly recommend testing out the other infusion sets and seeing which one you prefer. Minimed might send free samples of each if you ask.

As a general rule with the Silhouette, the less fat that I have in the area, the smaller the angle that I insert with (I insert by hand). Could it be painful because you are inserting it too deeply? In any case, your infusion set should not be painful (maximum when you insert and 30 minutes afterwards), in my opinion.

Here is a blog post about the pump holders that I use. You have to scroll down to see the one that I use on my calf. I’m not sure if the same one would fit around a man’s calf as well, but you could find something similar. Also, I know about a holder called “Invisapump”. I think it works for men, but not women. I ordered one and it didn’t work for me. In fact, I would be willing to mail it to you, as I will never use it. If you would like to try it out, then send me a private message with your mailing address and I will send it.

6

I guess I must be used to my pump since I had it a year before my daughter was born. I haven’t noticed myself doing anything different since having my daughter who is almost 4 months old than I did before. I carry her on the side where my pump is all the time.

7

John, here is a picture of some underwear Manny has for his pump. He can probably tell you where he got it.

If you cut a small hole in the top of your pants pockets, you can slip the pump in a pocket without exposing the tubing to the outside, where it can get caught by things like little one’s fingers, etc.

8

I got those through KPP (Kangaroo Pump Pocket). As a member of TuDiabetes, you can get a discount for them if you follow the instructions under “Clothing” on this page:
http://tudiabetes.com/notes/Discounts#clothing

9

I bought some similar boxers from PlayUnderwear. They hold my MM722 with no problem!

10

@Kristin
Thanks for the information…I test out other insertion sites when I run out of abdomen sites. I’ll also ask Minimed to send me the other infusion sets.

@Cody Turner
Thanks for your input. I guess that since the pump is so new to me, I am very hesitant to even touch the tubing myself. Once I get used to that feeling I hope I’ll disregard the presence of the tubing and just be myself with my kids. This makes me hopeful.

@Manny Hernandez, @Kristin
Thanks for the information about KPP, PlayUnderwear and the discount information. I’ll definitely look them up and buy a couple. Anything to help manage the tubing and keep it out of harm’s way is good.

11

Hello John,

Hang in there …my pump nurse suggested to me , when I was so ready to pull the tubing out , because I was so frustrated : put the date on the calendar and look at again 2 weeks later …almost 8 years for me now. And you have 2 foreign things to deal with : pump and CGMS …how about trying to master the pump first and then look at the CGMS ? I don’t think I would have been able to handle both technologies at the same time. However everyone is different . Do you use the long or short tubing ?Would one be easier for you than the other?? You can safely touch the tubing without doing harm …just don’t let the cat chew on it, ha, ha !!
All the Best :wink:

12

Some of the best advise I got when moving over to the pump, was “don’t expect to like the pump immediately, it will take about a month” and for good reason, learning how it works, finding the best place to wear it, etc. and it did take time, but the benefits of the pump when using the dual, square or normal bolus, is so valuable.

You’ve just started the journey, it gets better. The pump has given me a great amount of freedom and has allowed me to not have to plan every moment of my day. I believe it has allowed me to be much more healthier in the long run. Good luck!

13

Been on a pump nearly 4 weeks. Totally loved it from the second I got hooked up. If your settings are right, then learn to trust your pump. If you trust it and it’s consistantly wrong at certain times ot foods, then maybe your settings need review.

If you’re still worried about the tubing after you try things that have been suggested, you may need some extra security by putting some micropore/other tape on the tubing just near the site leaving a little slack between the site and the tape. Then it’s the tape bit that gets pulled first.

The tubing is very sturdy - least in the Inset IIs I use. You can even bend it and it’ll survive. If i get worried it’ll catch, then I tuck it in somewhere. You can be quite inventive about that. Carrying 2 toddlers shouldn’t be a problem either. Lock your pump, or place i elsewhere.

If you’re playing with you kids, eg without a shirt on, then tape the tubing flat to your body so little fingers and toes can’t get caught and pull. Of course not so great if you 're taping over body-hair.

Try some of the suggestions, especially near site-change time, just in case. You may find that your setup is much sturdier than you think. Eventually your kids can learn they need to be a little careful around your site. Love-handle placement would be great for you too.

14

John- You’ve gotten some good advice here. The best I can offer is how I use the pump. I got he pump a few years ago when I was a stay at home dad. I played with the girls everyday, and still do. I use a pc of tape about 3-6 inches from the infusion set, with a little loop in it. That stops it from pulling between the pump and the tape. And then I tuck the tube under my clothes and hang the pump on my belt, using a pager like case. I have other cases, some have a hook so they can swing lower and so on. I have never had a problem with an infusion set like you are having so I agree that switching set types is probably a good idea. My girls have climbed all over me with the pump on with no issues. Pulling the set out can be nasty, but it heals fairly quickly, and like shots you get used to it.
Also, if you are worried about the tubing and what it can handle try pulling on it to see if you can break it. It will pull out of you before it breaks. I have yanked on it, caught it on a door knob and it has yet to show any damage.
It took me about 3 months to get used to the pump and trust that it isn’t going to break. Now my pump is just part of me, I don’t normally think too much about it. But even now when I don’t play with the kids as much, I still use the tape, if I don’t it drives me nuts.
Good luck!

15

The MiniMed CGMS is not accurate, even they say it. It has a 15 minute or so delay. I have never tried one, but I know people who have and from what I have seen, its not my cup of tea. I do like the dexcom (sp?) CGM though.

pump takes some getting used to. I don’t use any clips, I wear the pump in my back pocket and I tuck the tubing into the waist of my pants. Works best. I work with toddlers and they never notice it (they pull on it if it is out). Or I wear it in my bra, but thats not really an option for men.

I sleep with it next to me. I can not sleep with it attached to any article of clothing.

16

i’ve been on a pump for 7 years, that is what I find works best.