My ongoing saga

So in keeping with my committment to have every possible pump problem in the first couple months to get it out of the way…I haven’t even heard of this one before: I went to prime my pump and no drops came out. It just kept running the count of units down with no drops. Where did it go? Needless to say the set failed.

One more question: I’ve been extracting insulin from Apidra pens since I had several and can’t order vials until the 6th. (I had no idea how much would be wasted!). I notice whenever I extract some the plunger comes nearly all the way up, so even though the pen is full I can only use it to fill my cartridges like 2-3 times. Any way to get the insulin below the plunger so I don’t waste so much? (I hope I explained that well enough, I’m very unmechanical)

i got started on apidra tuesday after my doctor’s appointment and they gave me two pens while the pharmacy is filling the RX for the vials so i’ve been doing the same thing with the pens. remember, the pens are a smaller volume than the vials. so there’s not nearly as much insulin in there to get out. when the plunger moves, it’s moving right behind the insulin and that’s all there is.
which, since they gave me two pens and the pharmacy hasn’t shipped yet, means i’m going to run out and have to go back to novolog. which i am already not looking forward to. been more stable on the apidra these last two days than in the the last two years.
as for the insulin not coming out when you prime… never experienced that so i’m at a loss. the only thing i can think of is that it wasn’t sealed at the connection between the cartridge and the tubing? did you look to see if there’s any insulin inside the cartridge housing?
sorry to break the late night diabetic tradition we’ve started, but i’m going to bed now, will check back tomorrow to see how it turned out.
good luck

Yes, we have started a late night tradition - I noticed that you have been the first responder to my nighttime questions a few times!

On the pens…duuuuhhhhh! Of course! There is only 300 units in a pen, and I draw up 100 or more to fill the cartridge. Wow, it always seemed like there was so much in the pens when I used them for boluses. I definitely have to see my doctor and have him prescribe more for my 3 month supply. I’m sorry you’re going to run out, marti, but I’m glad Apidra is working better for you!

Not sure what you mean by insulin inside the “cartridge housing” - you mean inside the part of the pump where the insulin goes? That can’t be good for the pump! I just re-did the set. But if my blood sugar continues high, I’ll have to check. If I waste anymore insulin I’m going to have to go back to shots for a week too. Sigh.

Just checked, down from 191 to 124. So I guess all is well.

I’ve had the no drop saga. This is what I do when that happens. As soon as it feels like it’s gone too long. I stop priming, take out the whole cartridge. I rewind again and then load the cartridge again and then prime again. It usually works. I have come to believe it’s not a problem with the set so much as the way the cartridge loaded. When I’ve done this, I have never had a problem with the set after.

Thanks, Donna. I should have asked before I wasted 100 units…lol

I overcorrected last night and proceeded from 124 to 52 and stayed stuck there till 5AM. Good thing I had a good book. I think my ISF is the next thing that needs changing.

Another question: What length of time after starting pumping did everyone go before things were stable…at least as stable as they ever get for us? My Type 1 Women’s group all agreed they only have problems about 5% of the time, so I’m looking forward to that day of the learning curve evening out!

For me it took about a month and a half but I was a little OCD when I first started. I think what really helped me is that I have never had much of a problem with fasting for a complete day and night which allowed me to lock in my basal and correction factors rather quickly and then it was only a matter of the I:C ratios. The rest of it was just figuring out some of the other nuances of the pump like the combo boluses and of course figuring the best way for me to manage the infusion sets (placement, type etc…) which for you seems to be a bigger issue for you than it was for me.
Keep on slugging through. As long as you continue to use a systematic approach that point will come for you, so keep working like you have been :slight_smile:

i’ve never been stable. tuesday they decided i am officially 'brittle’
which is why the switch to apidra. it’s been great. three hypos and i was able to recover in under an hour instead of having to keep up with the sugar while waiting for the novolog to wear off.
hoping the apidra will help me keep from having what my doc calls ‘rabbit ears’ on my BG graph. it’s just impossible to predict what my gastroparesis will do.
the hives are annoying but that happens anytime i switch insulins. i’m actually allergic. i love how they are required to say ‘do not take this is if you are allergic to insulin’ - let’s see, my other choices are coma and death. i choose hives.

i’d think if it was leaking that much you’d be able to smell it though

Thanks for the info, MossDog. I’m definitely OCD about my diabetes management though I’d prefer just “OC” (minus the disorder part) as I think it is “a normal (even healthy) reaction to an abnormal situation”.

I’m at a few days short of two months and still juggling variables but I see the light at the end of a tunnel. (Nobody mention trains, please!). It probably would have been quicker if I’d done the basal testing thing right instead of waiting to see patterns and then changing it over days. I got programed into me on MDI that each change should sit for 2-3 days; I realize that isn’t as necessary with the pump, but don’t want to overshoot.

Yes, the sets are hard for me, mechanical things (for lack of a better word) are not my strong suit. But yes, I got my left brain throttle full speed ahead so I’ll get there (with a little help from my friends).

I’m really sorry you are struggling, marti; it seems quite unfair of the diabetes gods (devils) when you work so hard at it. But it does sound like the switch to apidra was a giant step in the right direction for you. There is a line in Pumping Insulin where John Walsh says that eventually anyone can use the tools of a pump to get stable blood sugars. I don’t know, that might be a tad overly-optimistic but it’s a great thing to hear, no? I looked for the line again and couldn’t find it but it’s in there somewhere!

Yep, hives would be my choice as well but that doesn’t mean it doesn’t suck!

yeah, i have that book. i had such high hopes… hehe
but considering my rabbit ears used be ~450 - 20 and since the pump became ~350 - 30 and then the past year with the CGMS are more like ~280-45… every little step counts.
this pic is a little weird looking if you think of it as a CGMS graph for the navigator - due to running low on sensors and paying out of pocket, i am taking a break from it for a week and this is all fingersticks instead, so it’s a little jumpier. even if i am testing ~30 times a day
but you can see where i started the apidra and while it’s not a miracle, it’s enough improvement that i can feel it.

I’m a graph ignoramus and even I can see a significant difference there! Wow! I didn’t know it could make that much difference, but I would think with your dealing with gastoparesis, the timing of the insulin would be a considerable factor.

I just got off the phone with Medco and they suggested I have the doctor prescribe a 30 day supply of vials I can take right to the pharmacy and then a 90 day supply to have on my mail away. I asked about getting the pens in addition as I’ve pretty much gone through my backup and they said just have him specify “using both”. Now all I have to do is figure out how much? I’m around 25 TDD and I guess-timated 3 vials for 90 days. Guess what I went through that in less than 1 1/2 months! Some of it is I didn’t know about priming using up insulin, but I also wasted a lot because I threw away insulin in cartridges instead of using them till they were near empty or extracting what is left in the old cartridge into the new cartridge. I told you I wasn’t mechanical…lol. I even somehow pulled out the plunger instead of the little blue things…ok…I did that twice!

Just for an idea if anyone can tell me how much they order for 90 days (and what your average TDD is) it might help me be a bit closer to the ballpark!

Can’t your doctor just call in a 30 day supply you can get at the drugstore for Apidra, marti? I know it costs a bit more but you are on such a good path with it, it would be a drag to have to interrupt.

It’s funny when I thought I might have to go back to pens for a week or two, even though the pump is still a bit of a struggle, I was unhappy! I have an appointment for Monday; my regular PCP is on vacation next week hopefully the substitute doctor is “trainable”…lol

I think that your estimate of 3 vials for 90 days is right. If you are using 25 units/day on average that would be 750 units per month which would give you another 250 units/month for waste/priming/whatever is in the cartridge at the end of 3 days (I do not try to save it). You will just have to be careful about how much you put in the cartridge to begin with- maybe 90 units or so- that way you would have about 80-83 left for use after priming if you use 23" tubing. You would have to throw away whatever is left in the vial at the endo of 30 days regardless. I use about 50 units a day so I always just fill the cartridge with 200 units so it makes it easy for me. I need 2 vials per month.

With regards to the substitute doctor- I find when I am seeing a new doctor if I start talking about what my different basal rates are and my correction factor and my I:C ratio etc… Usually about hallf way through the basal rates they get a deer in the headlights look and say “it sounds like you know about it more than I do” and give me whatever I request for the diabetes. :slight_smile:

Thanks, Moss Dog. Your first paragraph was pretty much what I thought originally when I requested the 3 vials, but ran out halfway through! But yes, I have been learning the right amount to put in the cartridge to begin with, and if I have a problem with the set I extract what’s left or just re-use it if it’s a fair amount. And my idiot moments have been going down…a little. I think I’m going to ask for 5 to be sure. I actually prefer the 43 inch tubing, which I would guess wastes a tad more.

Your second paragraph cracked me up because that is exactly how I approached my regular doctor. I handed him my sheet on which I had typed basal doses and I:C ratios for bolus and he frowned at it and asked for a translation to write the script. (As in 2-5 units 3x a day). He acknowledged I’m his only type 1 and just signed the form the Animas rep handed him with the recommended basal doses. I’m very grateful when I hear the horror stories people have trying to get their pumps. I think after I confessed to my doctor that I had been actually living in Guatemala during the first year of our relationship he figured he was ahead of the game with me in the same country.

I like the 43" tubing as well and notice on average it takes 13-16 units depending on how fast I am at releasing the button when I see insulin. It can’t hurt to have some extra insulin around just in case …

I have been lucky like you to have PCP’s that for the most part allow me to dictate at least my diabetes care. It was not difficult for me to get a pump either. I am for the most part fairly level headed but think I might blow a gasket if I had to go through some of the things I hear of people having to go through to get a pump. Simply insanity.

I agree. When some people are told there control is “too good” and other people are told there control is “not good enough” for a pump, there’s a problem.

There’s probably not much risk in the Animas Group of starting one of those endless political debates, so I’ll venture to say that to me it is utter insanity how much control there is regarding individual medical decisions and how infantalizing the system is. When I lived in Guatemala I could walk into any pharmacy and buy whatever I needed. It was entirely up to me how much or how little doctor care I sought. I could also walk into any lab and order what tests I wanted for a very nominal cost and pick up the results two days later to show to my doctor and/or keep. All medical records were in my possession and it was my responsibility to bring the correct tests or whatever to see my doctor or a specialist. Living in that system for two years made me so aware of how ridiculous things are here. My endo in Guatemala admitted she had never heard of LADA, and just said, “you are type 1”. I showed her Using Insulin and she was disappointed it wasn’t published in Spanish so she could have her other patients read it. (Of course I told her about the Spanish version of this board!

Ah. So that “five drop law” is somewhat arbitrary? I wondered about that and had started taking my finger up after a count of 4. I’ve been losing about 25 units to prime, so I’ll just release when I see insulin.

I would love to participate in medical care like you describe.

Unfortunately personal responsibility is something that seems to be lost these days. Can’t tell you how many times I hear it is anyone elses’s fault but the person who is most responsible. I have really been trying to impress personal responsibility on my children but they see all their friends get a free pass and that is hard for them to understand.

Have to say I have never heard the 5 drop rule. Anyone else taught this? I release right when I see insulin and have never had any problems.

Medical care in Third World Countries obviously leaves other things to be desired, but it definitely is different than the U.S. in terms of the control issues. Also my doctor usually spent at least 1/2 hour with me. He didn’t take appointments just had office hours from 3-7, so I always was waiting outside the door when it opened. 1/2 for your turn is nice, but not so much fun if there are 3-4 people ahead of you!

I think personal responsibility will be a great foundation for your children as they grow up even if they complain about it now! I teach Community College online and it’s always a balance between holding my students to high standards and not letting them flounder when they need some hand-holding.

The “5 drop” thing is in the Owner’s Manual for the Ping and the Quick Reference Guide I use for changing sets. When you don’t know the reasons for things you tend to follow directions exactly, but the whole point is just that the insulin fill the tubing so if it’s coming out…it’s full. Duh! I’ve been shocked with how much insulin I’ve been going through and since I pay the same for “three months supply” might as well get more. Thanks for all your help!

As far as diabetes management on the pump goes, though I think there are certainly good reasons to have a good professional team, but it can also lead to unintentionally abdicating that responsibility. If someone else does all the settings for the pump as some people report, then you can’t help but think of those settings as “fixed”. If you do them on your own, on the other hand, then you think of the old computer saying, “garbage in, garbage out”. So when something isn’t working as you want it to, you look to one of the variables you can change. Like I’ve been over-correcting and realize I need to change my ISF and Duration of action to fix this.