Almost 12 years diabetic - 4 months on the pump, general thoughts (dislike)
Hello all, this is my first post on this site. I found it while browsing for others who don't necessarily think the insulin pump is the best invention since sliced bread. I'll share my feelings and maybe others can tell me if I haven't given it enough time, or maybe I'm doing something wrong.
I have been diabetic since 19, I'm 31 now. I resisted the pump for many, many years at many different doctors disapproval. Finally, I gave-in last October. I think I hate it. Yes, it does have its benefits, but I'd like to express some frustration. Mainly, I wanted to have a continuous glucose monitor. If I'm going to wear one of those around, I might as well just have the full-on pump for all the reasons they tell me are good. I was setup with the Medtronic Paradigm, with continuous glucose monitoring.
In the beginning, things seemed to work rather well. Changing sites and sensors took me a lot longer and hurt a lot more than the shots I was used-to taking. Not having to carry insulin pens with me was nice, and the CGM is great (when accurate). Then, come November the pump put me in the ICU. I changed infusion sites in the morning before work. By lunchtime I felt horrible and went home. My blood sugars were on a steady climb since breakfast and were pushing 300. I bolused additional insulin throughout the morning, but to no avail. After I started throwing up I called my doctor, who told me to get to the ER. An IV drip of insulin and 24 hours later, I was feeling just fine. It turns out the infusion tube kinked inside of me, so I was not getting insulin. However, the pump never indicated to me that it was having a delivery problem. The medtronic rep recommended I use a different type of infusion set, which I have been.
Fast forward to December and January. I start experiencing similar problems, but fix it with a manual bolus from an insulin pen before it puts me in the hospital. Then I install a new infusion site and go on. After having this happen a few times, it was suggested to try sites on my upper buttock, instead of the abdomen. I have done that 4x now, twice it has not worked (including now).
The first time I moved the site there, no problems, everything was great. 3 days later, I swtiched sides. One day in, and I started having some pain. 2 days in, there was swelling and a bump forming, as well as high blood sugars. I removed the infusion site - with some blood, pain, and signs of infection. I sited a new infusion on the other side of my body. That one worked fine.
Which brings us to yesterday. I inserted the infusion set and went through the day normally. I woke up this morning with some pain and signs of bleeding from the infusion site. "Great," I thought. By lunchtime today I was +300 on the CGM, and relying on an insulin pen until I can get home from work and change sites again.
It seems that the sites will bleed or bruise, and that reduces or eliminates the ability for them to absorb insulin. It's very frustrating that this device I am supposedly relying on is only working 2/3rds of the time, and I end up taking shots anyway.
Here is my laundry list of complaints about the pump:
Are these normal new frustrations? Most things I read before going on the pump seemed to be that people connected to it, magically their management was better, and they fell in love with using it. I don't know how this is possible, I am debating getting rid of it! 4-6 shots a day and 7 finger-pricks was way less involved than trying to manage this thing. Will it work today, or won't it? I better make sure I bring an insulin pen, just in case.
I will admit the upside of being able to skip/delay a meal instead of being on a very specific timed eating schedule. I'm not sure if this outweighs my negative feelings though.
I guess I'm just ranting and looking to see if I'm being irritable (remember, my BG is high) or if the pump is not the wondrous device I was lead to believe it would be.
I have been diabetic since 19, I'm 31 now. I resisted the pump for many, many years at many different doctors disapproval. Finally, I gave-in last October. I think I hate it. Yes, it does have its benefits, but I'd like to express some frustration. Mainly, I wanted to have a continuous glucose monitor. If I'm going to wear one of those around, I might as well just have the full-on pump for all the reasons they tell me are good. I was setup with the Medtronic Paradigm, with continuous glucose monitoring.
In the beginning, things seemed to work rather well. Changing sites and sensors took me a lot longer and hurt a lot more than the shots I was used-to taking. Not having to carry insulin pens with me was nice, and the CGM is great (when accurate). Then, come November the pump put me in the ICU. I changed infusion sites in the morning before work. By lunchtime I felt horrible and went home. My blood sugars were on a steady climb since breakfast and were pushing 300. I bolused additional insulin throughout the morning, but to no avail. After I started throwing up I called my doctor, who told me to get to the ER. An IV drip of insulin and 24 hours later, I was feeling just fine. It turns out the infusion tube kinked inside of me, so I was not getting insulin. However, the pump never indicated to me that it was having a delivery problem. The medtronic rep recommended I use a different type of infusion set, which I have been.
Fast forward to December and January. I start experiencing similar problems, but fix it with a manual bolus from an insulin pen before it puts me in the hospital. Then I install a new infusion site and go on. After having this happen a few times, it was suggested to try sites on my upper buttock, instead of the abdomen. I have done that 4x now, twice it has not worked (including now).
The first time I moved the site there, no problems, everything was great. 3 days later, I swtiched sides. One day in, and I started having some pain. 2 days in, there was swelling and a bump forming, as well as high blood sugars. I removed the infusion site - with some blood, pain, and signs of infection. I sited a new infusion on the other side of my body. That one worked fine.
Which brings us to yesterday. I inserted the infusion set and went through the day normally. I woke up this morning with some pain and signs of bleeding from the infusion site. "Great," I thought. By lunchtime today I was +300 on the CGM, and relying on an insulin pen until I can get home from work and change sites again.
It seems that the sites will bleed or bruise, and that reduces or eliminates the ability for them to absorb insulin. It's very frustrating that this device I am supposedly relying on is only working 2/3rds of the time, and I end up taking shots anyway.
Here is my laundry list of complaints about the pump:
- See the above story
- I was told it would eliminate many of the highs and lows I was seeing with shots - it may have reduced some their severity, but has probably increased their frequency, especially lows
- My A1C went from 6.7 before to 7.3 in the 3 months after starting the pump
- I hate the constant reminder of "hey, you have diabetes" every-time I see the thing.
- Having to unhook and be extra-vigilant when: showering, swimming, etc. - not to mention the scarring and sensors/infusion sets stuck to me.
- Getting tangled in the cord
- Changing basal rates because I am doing something active (exercise, work, etc)
- Just generally feeling like less of a normal person because this thing is always connected to me
Are these normal new frustrations? Most things I read before going on the pump seemed to be that people connected to it, magically their management was better, and they fell in love with using it. I don't know how this is possible, I am debating getting rid of it! 4-6 shots a day and 7 finger-pricks was way less involved than trying to manage this thing. Will it work today, or won't it? I better make sure I bring an insulin pen, just in case.
I will admit the upside of being able to skip/delay a meal instead of being on a very specific timed eating schedule. I'm not sure if this outweighs my negative feelings though.
I guess I'm just ranting and looking to see if I'm being irritable (remember, my BG is high) or if the pump is not the wondrous device I was lead to believe it would be.
Replies to This Discussion
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Permalink Reply by Tom T on -
It sounds like it's time for a pump vacation (aka trial separation)! The pump has it's pros and cons, for sure. Most of us who glow about the pump easily forget about the transition period because we're so deeply in love with it now. It took me at least 6 months, if not a year, to adapt to the pump. In that time I took at least 2 pump vacations (usually a few weeks) that I can recall. Each time I went back to the pump with renewed interest because it did have pluses (more flexibility, more convenient though certainly more physically cumbersome). Eventually I went back to the pump and have been on it solid for at least 5 years (except when I plan to scuba) and wouldn't given it up. Then again, I never had the site issues that you're having. I do sometimes drift up as my site starts to crap out, but I've never gotten to DKA (knock on wood). If I had had your experiences, then I may have felt differently about going back.
I don't think you're just being cranky. You're giving it a fair shot. Take a break for a while before you burn out on it. See if you miss it. The pump isn't for everybody. If you were 'happy' on MDI and you were doing well, then there is nothing saying that you've got to pump. I think the idea that gives better control is a bit of a stretch. It makes it EASIER to achieve better control but it's still work. But you were putting the work in before and so I don't think that this will be about control for you, but about what works. If that makes sense.
Rant any time, it's healthy and normal!!!
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Permalink Reply by barbraann on -
I agree completely. Spent 36 years with T1 before I finally broke down and got an Omnipod. I was put off by the tubing and having to wear the thing 24/7, like you said, it's a constant reminder - something you don't have with the pens. And when you stick a pen in and inject you KNOW it's going in.
I've been on the Omnipod for about 4 months and most of the time I don't know it's on. I just keep the PDM in my purse. I also carry an extra pod. The good thing is it's one unit, all contained so if I have to change it out it's pretty simple and I've even done it in restaurants! It's DEFINITELY not easier, just more precise with more options. The only thing I can say that I love is the fact that I can exercise and dial in a temp basal so I'm not consuming tones of calories trying to keep bs up. I'm hoping to lose a bit of weight this way.
It's definitely not for everyone. "If it ain't broke, don't fix it!" I kept my A1c's under 6 the entire time on shots, had no problem shooting up in public, and could bolus according to my carb intake - just like pumpers, so I never felt the need to change. Don't let anyone talk you in to using one unless you really want to and NEVER FEEL GUILTY about not pumping! At least you gave it a shot! (pun intended :))
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Permalink Reply by Karen on -
I go back and forth in my mind that the grass in greener on the other side.
I have been type 1 for 44 years and never ever got use to shots, and have been pumping insulin for 8 years. I rarely have a bad site, but if I did and had the episodes like you are experiencing I would be back on shots in a heartbeat.
Sounds like you need a pump vacation and perhaps if your basal was Lantus, you would not have to be on such a tight eating schedule.
I was on NPH and regular for years and remember the schedule, but with my year of twice a day of Lantus and humalog for meals (poor man's pump) I felt pretty good control.
I find with the pump I have quite a few lows, especially with any type of movement, so I am not totally thrilled by pump usage. With all insulin delivery, less is always best, less carbs, less insulin, yada, yada, yada.
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Permalink Reply by acidrock23 on -
I sort ofl liked shots because I liked to pretend I was Keith Richards. Re the pump, I liked it pretty much immediately but, if you don't and were happier with your results injecting, you shouldn't feel shy about going back? I like not lugging all the junk around though. Occasionally I don't have any clothes on and it's hard to find somewhere to put it but other than that, I really don't notice it.
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Permalink Reply by acidrock23 on
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Yes. I had 2x syringes, R w/ duct tape around it. I would use them until the numbers wore off, do R IV when my BG got a bit high, sometimes with strobe lights going. I also just took the E string off my Telecaster so I could play around w/ the GDGDBD tuning after I read his bio too. Unfortunately, the little dog will not tolerate my giant Ampeg so I can't quite get the full effect. One of these days, she'll have to be groomed...heh heh heh...
"It's just a shot away..."
I don't mind syringes at all...
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Permalink Reply by Lila on -
Do you often find yourself in situations where you don't have any clothes on for a protracted period of time?
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Permalink Reply by Zoe on -
Speaking for myself , yes, I sleep nude. What I do is wear my pump inside a spibelt around my waist, pulled tight enough not to drift around, but not so tight it constricts. I put it on the edge of my hip towards my back as I sleep mainly on my stomach or side. Works for me.
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Permalink Reply by Natalie ._c- on -
When I used to sleep nude, I just let the pump float in bed with me, and never had any problems -- if I wanted to find the pump, I just followed the tubing.
HOWEVER, I had a cat who chewed through the tubing not once, not twice, but THREE times, so I started wearing pajamas with the pump on the waistband and coiling up the tubing in the pants.
Ya do what ya hafta!
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Permalink Reply by SWEETS on -
Hi There~
I know what you mean. I was on the pump for 2 years and I ended up hating it, the "pager" hanging off of me, the feeling of my body being "wounded" in a way, having the hole in me. I really like just the needle and lantus. My endocrinologist said that he had a few type 1 marathon runners who just used needles. So I have become an athlete. I recommend it. I may go back onthe pump for a while at some point soon but the needles and the freedom are heaven. AND I predict they will have that debiotech jewelpump (tubeless mini) out soon. Keep yo Head UP!
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Permalink Reply by barbraann on
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Interesting. Are you T1 or 2, do you only take lantus? No fast acting with meals? That's the one area I found helpful on a pump was being able to run without a low. I can't imagine trying to do a marathon with a tubed pump! That thing bouncing around for twenty some miles! Yikes.
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