Finding the Right Infusion Set

Like a lot of others starting pumping, I was having trouble with infusion sets.  When I was looking for information about the different sets, I read that one of the primary reasons people give up pumping in the beginning was because of infusion set problems – I can certainly see that!

A friend of mine was nice enough to send me some Insets (thank you Mary!) before I started using the pump.  Her daughter is now using the Omni Pod.  She suggested taping the end to a deck of cards so I could get a feel for it.  I did that and wore it for 24 hours, no problems.  When I started using the pump, I started having trouble getting those on – I was using 2 or 3 sets per site change.  I was getting pretty frustrated and thought the problem was because of neuropathy in my hands but then I started hearing from other pump users without neuropathy that they were having troubles in the beginning.  I used up half of my three months supply in the first two weeks.  Like magic, the problems seemed to stop after about 2 weeks.

The other problem I was having was the insulin seemed to pucker out at about 43-45 hours and my BS would start to go high.  After doing some Googling, I found that other people using Apidra also had that same problem.  I love my Apidra and there is no way that I am giving that up.  With the gastroparesis, Apidra works the best because of having to take several injections for meals and the Apidra is out of my system long before the other fast acting insulins.  So the supply company sent the doctor another form to allow for more frequent site changes.  I am changing sites every day and a half so I can get the cartridge changed before my BS starts to skyrocket.

Unfortunately, after about 2 weeks on the pump, I was getting hives that kept getting worse.  Nothing else in my environment changed so I finally figured that it had to be the infusion sets – apparently, I have a Teflon allergy!  No problem, I can just use stainless steel sets.  That was also easier said than done because having to use stainless steel sets reduces my selection to only a couple sets.  I stopped using the Insets and the hives cleared up but I did not like having to stop using the pump.

I had previously contacted Animas about getting some samples of different sets to try and they were nice enough to send me some.  They sent me two of their Contact Detach, which were the stainless steel ones.  I messed up both of those trying to get them on so I was not able to try them.  After the hives started, I contacted Animas again and asked if I could get some more of those.  The clinical manager for my area sent me some and also suggested I call her the first time I try to use them.  I did that and I was able to get it on and working.  Yeah, I am back in business!

The Contact Detach does not have an auto-inserter so you just stick it in and it is there – it is easy enough to put on.  My problem with it is that it comes in two pieces that you have to stick together.  There is a protective cap on the one end that you have to remove before you stick them together – it is not very easy to get off and I really had trouble getting that off.  I also wasn’t too thrilled that you have two pieces stuck to you but that part could be livable if I could get the protective cap off!

I read about Orbit Micro online and had requested a sample when I first started using the pump.  I never received it so this time, filled out the form to find a supplier.  I put on there that I had not received the sample and they contacted me and ended up sending the sample of those.  Some people like the Orbit because it spins around.  That is not really an important feature to me, nor is the fact that they have blue tubing, but something that is easy to stick on is very important to me.  You just take the tape off and stick it in, then squeeze the plastic piece that you use to insert and it pops right off – no muss, no fuss.  You attach the tubing to your pump and prime it then it just pops right on the piece that is attached to your body.  Simple enough.

What I don’t like about the Orbit Micro is that there is a little dome over the set because of the ability to turn.  That sucker hurts if you turn over & lay on it!  The tube also comes off the pump very easily and I woke up this morning to a detached tube.  Because the tube pops off so easily, it is also hard to pull the cartridge out of the pump because the tube comes off instead of pulling the cartridge out.  When I use the samples up and go back to the Contact Detach, I am going to save one of the Contacts and cut the end off so I can stick that on the pump just to pull the cartridge out – simple solution!

ICU Medical is the company that makes the Orbit and I am working with them to find a supplier that is in my insurance network.  The supply company that I got my pump and other infusion sets from does not carry the Orbit.  I also checked with the supply company that I use for test strips because they carry some pump stuff and they do not carry them.  So right now, I am waiting and hoping that ICU Medical comes up with a supplier that I can use.

The other problem that I am having is not related to a particular infusion set but scar tissue.  After almost 27 years of injections, I have some scar tissue and it seems most of it is on my right side of my abdomen – I guess that was my favorite side to stick.  I have had a bunch of bad sites on the right side and only one successful one on that side.  Last night, I was watching CSI and they sprayed Luminal to have blood show up.  Since your body does not light up where there is scar tissue, it would be nice if they would come up with a kind of scar tissue Luminal so you could spray and find out where the scar tissue is before you waste a set sticking into scar tissue!  So if there are any mad scientists out there reading this, you would make a lot of people happy with that invention!
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4 thoughts on “Finding the Right Infusion Set

  1. I had the same allergy to the teflon that Kelly does – so I don’t think we’re alone – as I’ve heard of others having the same problem. Where is the teflon though – this is a question I’ve been asked about. Is it surrounding the plastic cannula or??? I have been using the Contact Detach since last January – and LOVE IT. The disconnect feature doesn’t bother me like it does for you Kelly. I did try the Orbit one – but they could only send me the plastic cannula (teflon??) – and it caused the allergy to start up. I also find it less flat then the Contact Detact even if the stainless steel needle isn’t as fine as the Orbit.
    I guess I’m lucky that I’ve been self taught on all my infusion sets – and so far – touch wood – never mucked up – except I lie – the Inset 3 was a right bugger to put in – and again – that issue with the “teflon”. Straight angled infusion sets, stainless steel is what suits me to a T (like the Sure-T that MM users use – and that’s what gained my interest at seeing a friend use one of them).

    • The steel sets are the easiest ones to get in. I think I have even figured out the trick to getting the Contact Detach apart. The guy at ICU Medical told me that they were working on a flatter Orbit because they have had alot of complaints from teens that wear tight clothes.

  2. Wow Kelly! I’m glad you got some sets that work for you now. You sure do seem to have more than your share of problems with the diabetes stuff. I have never heard of an allergy to teflon but a lot of people use the steel sets because they don’t kink. You are supposed to change them every other day, but since you are changing more often than that, you should be fine. Maybe the allergy was causing the problem with infusion, so you might be able to go to 2 days or even 3. I know that some people disregard that 2 day rule and do just fine. I hope that they find you a supplier asap.

    • Thanks Mary! At least the other pump stuff is going really good so I can definitely see the advantages of using it! I think it was on the TuDiabetes Animas group that I read about the Teflon allergies. Animas also mentions it in their write-up for the Contact Detach. I am going to try and keep the sets in longer than the day and a half and just change the cartridge out. If they don’t cause a problem, then I should be OK.

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