Type 1s - If You Don't Pump, Why?

Type 1 and LADA
21

I just wanted to comment on your observation from Glucosurfer. The studies that I have seen suggest that pumping can improve your blood sugar control, but not as much as some people think. For instance, a study called REAL Trend, cited by Medtronics found that patients with poorly controlled T1 diabetes (HbA1c > 8%) on MDI who switched to a pump lowered their HbA1c by 0.55%. Those who augmented the pump with a CGM were able to lower their HbA1c by just under 1%.

This data is backed up by other studies which suggest that perhaps the benefits when your A1c is already 7% or less may be minimal as shown in the chart below.


22

MDI have kept me in control so well that I don't really seek anything else. In the evening I fill two syringes with Lantus, one goes into a snack baggie & the frig, the other goes into me.
In the morning I inject the Lantus in the frig and I fill a few syringes with Humalog that go into a Frio ready to go out - enough that whatever I eat will be covered well.
No site problems, and I just might have those since I'm lean. I'm also lazy and happy. I'm well aware of everything with pumps and have handled great results and problems for others since about late 1980s, but this way suits my way of life. And the Endo shrugs and says, "Fine."

23

The pump calculates all the doses, correction with coverage, its actually an amazing device,since my daughter has been on the pump, her numbers are alot better!!!!!

24

Being attached to something 24/7 is the main one for me. The say you get used to it and it feels natural and all, but it is something I think I would always have an issue with. I like my freedom too much lol.

25

I avoided the pump for years because of the connectivity 24- 7 isssue., thinking I would not like it and that others would notice and stare. I find now, that it is not a problem at all. You do get used to it.. and no one really looks at it. As I have said on many postings.. People are into their own lives and really do not pay that much attention to ours. I never got used to using a pen, and carrying around vials and multiple syringes ( I never reused them, had excellent insurance that paid for them) was more pain than the pump and the CGM which I currently wear. Even though I did rotate, I got lumps bumps in thighs, hips, and tummy from the 6 times a day shots ; and Brunetta is far too vain to have the ugly bumpies persist. Most went away, after I started pumping. No scar tissue from the pump, so far, after almost nine years using it...

God Bless,
Brunetta

26

I have never wanted a pump. I don't like the idea of being tethered to something 24/7. I don't mind taking shots and I know when the syringe is empty I have rec'd the insulin. I have read many discussions from pump wearers that they didn't know that their tubing was clogged and their BG went way up before they were aware of it. I use very little insulin and my insurance wouldn't pay for the pump and supplies. I also don't like all the waste when you have a pump with all the supplies. It seems PWP have to change their connection frequently, it seems like a bother to me. I'll stick W/ MDI.

27

I've been on injections for 25 years. For me, it was not wanting to be attached to the tubing. Plus I just never had a problem with injections; the needles are so small that I hardly feel anything. There's actually less to carry around with MDI because pumpers carry extra pump supplies. Until recently, I never had to deal with DP either so didn't need the dosing flexibility.

Now that I'm struggling to get good control on injections because of DP and hormone swings, I'm moving to the OmniPod next week because of the ability to set multiple basal rates and the ability to deal with fluctuations from hormone swings with short acting insulin only instead of being locked into long acting doses.

I see both sides from the perspective of someone doing MDI and that's working, so why change to something that's going to be more restrictive physically and then also from the perspective of I need the ability to micro-manage in small increments on a pump because MDI isn't getting me where I need to be anymore.

At this time, I still don't think I will ever want to go on a tubed pump. I will hang in there as long as I can with the OmniPod and hope that the technology progresses in that direction.

28

"4) they need to be replaced more often than i think is acceptable

Pump companies and insurance companies "recommend" that pumps be replaced every four years, but this doesn't mean they have to be (with the exception of the Spirit which is set to stop working at four years). I have a Cozmo from five years ago that is still working fine and that I would still be using if not for the fact that it's not covered under warranty anymore and I can't see the screen at all (compared to the Ping). So the problem is not with the pumps and/or their design, it's with the companies wanting to make extra money by having people upgrade to the newest model."

I've been using my little MiniMed 508 pump so long (12 years!) that if I have to call Medtronic for support, they have to track down one of the two (!) people that are trained on the "classic" pumps.

Now that I'm insured, I'll be getting a new pump soon, but only because I want some of the updated features. . .has nothing to do with how often I HAD to get a new one.

Also, the 'being attached to something' thing isn't as bad as you'd think. I'm able to hide my pump wearing everything from shorts and a T-shirt to a formal dress. Oftentimes, when people ask me where my pump's connected, I have to feel my torso, because I've forgotten where it's been placed.

29

Because my parents won't pay for it and I'm barely making it by on my McDonald's wages as is. I've wanted one of these things for about 7 years now (our hospital had an age limit of 12 back in the day) But I guess I'll have to stick to shots for 4-5 more years.

30

I spent 4 years on MDI, and then went to a pump, and have been pumping for almost 13 years. And what I've learned in my many years on the DOC is that you need to do what works best for YOU. All the issues that everyone has brought up vary by individual. I know of people who have tried pumps and HATED them, and others who have LOVED them.

In my case, it's a love affair. First off, I'm lazy, and after I learned HOW to use the pump, I find it LOTS easier than using syringes or pens. Most often I wouldn't think to put my pen in my purse as I rushed out the door, and then friends would spontaneously suggest going out to dinner, and OOPS!! I love the fact that I ALWAYS have my insulin with me, without having to think about it.

Which leads me to mention that I'm so demented that, when I was using syringes or pens, I would forget whether I had taken my shot 2 seconds after I gave it. Not so good. The pump keeps records of when I bolus, so if I forget whether I did or not, I just have to look at the appropriate screen.

Being an old lady, I get to carry a large purse (actually, kind of like a backpack) and it has plenty of room for spare supplies, although I almost never take them along because I live in a city (Reno, Nevada) where nothing is more than 15 minutes away -- 20 at the most, so I could get home quickly if necessary. On long trips, yes, I do carry lots of spare stuff, but it's never been a problem, and I've traveled to places like Italy, Poland, China and Nepal on the pump. You DO have to be careful to have it in your hand luggage, because stowed luggage can and does get lost, but you would do that with your diabetes supplies, anyway.

But still, if you've got a system that works for you, and you're comfortable with it, and you're getting the control you want, why bother to change? Each to his own, right?

31

Great, Michael McClure, I love your philosophy on wastage. I should get the prize for using needles to the max...easily 60 times each. I also can hardly read the numbers. I use a separate one for each type of insulin and leave it in the 3oz juice glass on the fridge door that the insulin vial is in and take it out less than a minute just for the tiny injection. I use so little insulin that a PUMP of the tubeless model which is my dream, would require me to put in twice as much insulin as I use on the days I am active, and it would just about kill me if I gained 10 lbs every 6 months as I have done by going to a higher level. NO I need a pump for the ability to % reduce the basal as Jen mentions. I've been approved for one, but so far the one I want is not available in Canada...the SOLO.
I also agree the wastage issue is scaring me....all the tubing for 10u a day???? It would create lots crystals along the tube, so I predict it is too much trouble. That is why a tubeless one is the only type for me. At 15u TDD I don't gain weight but at 20 and above I gain fast. And if I walk 5 miles per day then I only need 5u TDD...so that is my plan for getting rid of the winter weight.
I joke that I have failed at being me all winter, as walking really is my favourite exercise and it's also my name. So I would really appreciate it if I could set up a petition and have people vote on the value in convincing the pump designers on creating a lower minimum for insulin in the tubeless models. After all, the children deserve good control without insulin wastage. What I did read is that to get good control you can't use the last drop in a pump, so I guess I would have to always try to suck out with a syringe the last amount and put it in the second. "Waste Not Want NOT" was taught to me from a very young age....and here I am 55 years old. I am using a one year old expired penfill vial of Levemir that I got for free, and it works, possibly not as well, but I'm still using 9-18u TDD. I predict I would put the old pump insulin in a separate vial and every two weeks use the old insulin, so I can be aware of whether it is new or old insulin that is the culprit for any problems. That way I would not always contaminate the new insulin. I have saved some empty Lantus 10ml vials, as Lantus is what I have to buy when I have to pay for it, as it is cheaper.

32

If you asked me 1 year ago, after 16 years on MDI, I would have said absolutely no way did I want to connect myself to an insulin pump. No way!!

About 6 months ago when I realised that my control was not ideal, due to my own fault of course, I investigated everything about insulin pumps and 3 months ago I got all set up on an Animas 2020. It is 100% ccovered by private health here is Australia and infusion set costs are about 30 dollars a month, so my theory was that if I didn't like it I would go back to MDI.

After about a week I loved almost everything about the thing. My life is a bit random and I exercise like a madman and the basal flexibility is brillint. I can not eat for a whole day and my levels stay in a straight line, while with MDI I could never guarantee this.

Even though I am still fine tuning basals and my sugars are too high generally, I get no lows which is a fantastic change. It definitely works for me and I would never go back to injecting 5 times a day. It is just so much better for me.

33

I am Type 1 and from the moment I was diagnosed "they" have tried to put me on a pump - I was diagnosed in 1998 - and I have resisted every time.

When I was first diagnosed, an ER trauma nurse lived down the street from us, and she worked with two Type 1s, both on the pump; one of them suffered fatal DKA because the pump was blocked, and this was before the warning bells today's pumps have, and the other had so many problems she gave it up! Neither story was very encouraging to a young girl tackling a new diagnosis and lifestyle change by herself...

I suffered DKA (turns out I had been improperly shown how inject - by an endo that was later deported - and I was not receiveing my insulin as I should have been) in 2001 and when I came out of my coma and was able to function again, they once again tried to put me on the pump...my father offered to pay for it (then I found out why, because you could get the money back for it!) and I still declined, I didn't feel it was right for me (especially at that time as I was now dealing with a brain injury and being reintroduced to diabetes).

Flash foward a few years (and several different doctors later) and I meet my current endo, she asked me if I was interested, I said not at this time and we have yet to discuss it again - that was 4-5 years and a pregnancy ago.

For me it is not the cost - the Canadian government helps with the cost of a pump - and I cannot comment on whether or not a pump is easier or not. Is it being attached to something 24/7 - I think that could be part of it, though I feel pretty attached to my meter and wee bag of tricks (wee bag of tricks: insulin, syringes, etc.) as they come everywhere with me. I think for me it is a greater decision than will it regulate my diabetes better...I know it takes a period of adjustment for the pump (met a gal with one in the ER, she was about my age and three days into the pump...she was in the waiting room with us and she kept dipping into the low 2s, then she would drink a juice box and nothing would change...for 45 minutes we sat there and watched this poor girl -who said she was fine and did not want assistance- and for me that was terrifying) and do not feel right now is the time to change; I know the pump can offer great assistance with diabetes management, but I have fairly tight control and my diabetes has improved dramatically over the last three years (since I became pregnant and had my son), so I'm happy where I am - if it ain't broke don't fix it (and I'm not talking about my pancreas, just my diabetes regime, LOL!) :D

34

I am not linked with a hose to a device. I can swim, bike and have sex without cords. Cost - yes. Ease of use - well I take a needle and still test, so what's the advantage? You still need to test your blood sugars only difference is that I can wear dresses without a device stuck to me.

Better control? My A1c was 7 before that 6.7....so better control? Doesn't seem like it. And it's cheaper!

35

the reason i dont have a pump now (i used to have one when i was still covered under my dads insurance...)is definately because of the cost...yea, when i had one it did kinda bother me to have to be hooked up to something constantly, but that definately isnt the biggest reason i dont have one now. cost alone, is the only reason...just cant afford it....wish i could, cause id go back on it in a heartbeat!! : (

36

Reasons I don't pump:

1. Fear of what would happen if a site went bad. Having no long acting insulin means that pumpers are more vulnerable to DKA and one time in DKA was plenty for me.

2. I don't want to make insurance pay more than it needs to for my care, and there is currently no real reason to think that pumping would improve my health.

3. Adhesive allergy. My skin seems to tolerate the Dexcom reasonably well, but it reacted badly to the minimed sensors (really those sensors tortured me), to the I-Port adhesives, and to numberous band aids and medical tapes. When I used the I-Port, the adhesive caused such swelling that no insulin went through and for the first time since diagnosis I had blood sugars in the 400s and 500s.

4. Thinking about the complexity of a basal profile makes my head hurt. I know what I'm doing now, I guess. I don't really like huge big changes.

I don't really want to have something electronic attached to me, but I guess I tolerate the Dexcom okay.

I figure if a comfortable for me sensor came out with a pump that turned off the basal when there were lows, that was available in the US, then I might switch to pumping, because nocturnal hypoglycemia is a major concern for me. But that's not currently available.