Pump gone wrong

[Scarlett]

Just want to know of any long term Type 1's that have gone on the pump and it failed...only stayed on it for almost a year then the BS went really high all the time-finally gave up.

[JediSkipdogg]

I have not had that happen to me but I have heard of stories like that and generally they are related to...

1) The person didn't change infusion sites often enough and developed a large amount of scar tissue making the pump unusable.
2) The person developed high insulin resistance and the pump just didn't work for them (although I would think the pump would be better unless you carry an IV bag around of insulin, lol)

I know some just can't get the basal rates fine tuned or they just eat out of control on the pump. I will confess to the eating part and admit that is one reason I don't lose weight fast enough. I figure with the pump I can eat all the time, whereas if I were on shots I would eat less but larger meals so I wouldn't have to give more shots.

[Scarlett]

I changed the site every day towards the end of the pump reign-it was too frustrating to bolus and use a syringe and only the syringe worked to lower the BS! It relly got painful since I only used my mid to lower trunk area and ran out of room-I only weigh 130-135 now and I was 155+ when I was on it-I'm average height so there was really no explanation except for hardened tissue! I'm wondering if there are a lot of LONG TIMERS who have rejected the pump as I did.

[Funnygrl]

I've never heard of anything like this.

[am1977]

Sorry the pump didn't work out for you. I can't say that I have always loved it myself, but given the alternative (shots), I'll stick with pumping :wink:. I hated shots... Plus, I feel like I have a little more control over how I manage this disease than on MDI.

Anyway, guess this just proves that pumping isn't a great match for everyone. You got to do what works for you ;)

[msrkBen]

Just want to know of any long term Type 1's that have gone on the pump and it failed...only stayed on it for almost a year then the BS went really high all the time-finally gave up.


Scarlett,

I had the same problem and know of others who can't stand the pump because it doesn't work. I'm on the inhaler now, I'm having great results and I'm very happy. If you don't smoke, I would look into the inhaler especially the novo inhaler because it’s more precise than the Exubura inhaler, it’s coming out soon.

Also the pump leaves scar tissue even if you rotate.

[Cyborg]

Also the pump leaves scar tissue even if you rotate.

I hope that's not the case...

[JediSkipdogg]

Also the pump leaves scar tissue even if you rotate.

We have numerous people with 10+ years of pumping and they don't talk about any scar tissue. It all depends on your body and how well it reacts to something being pushed into it and how often you rotate. If one goes every 4 days I guarantee you there will be scar tissue, which I had at one point because I would go 5 days. I stopped that and it all reversed and healed up.

[someone]

I rotate every 2 days and have no scar tissue.

[Injecto]

If one goes every 4 days I guarantee you there will be scar tissue,


I'm still not so sure about that. A pediatric diabetes doctor at a major local hospital (in a city of 600,000) told us at a meeting that for most people you can go up to 4 days with absolutely no trouble and concern for scar tissue formation, and he is a huge proponent of the pump. Of course there is always variability but that's on an individual basis.

[Dewey]

I'm still not so sure about that. A pediatric diabetes doctor at a major local hospital (in a city of 600,000) told us at a meeting that for most people you can go up to 4 days with absolutely no trouble and concern for scar tissue formation, and he is a huge proponent of the pump. Of course there is always variability but that's on an individual basis.
Injecto, I agree & well said...

Each person's body handles things differently. Some do well with certain infusion sets, while others have allergies to them. Likewise with scar tissue. Just because some might experience trouble with scarring, doesn't mean everyone will.

Scarlett, sorry to hear you've had problems on the pump. Here's hoping that things will smooth over & that you'll find a regime that fits your needs.

[msrkBen]

We have numerous people with 10+ years of pumping and they don't talk about any scar tissue. It all depends on your body and how well it reacts to something being pushed into it and how often you rotate. If one goes every 4 days I guarantee you there will be scar tissue, which I had at one point because I would go 5 days. I stopped that and it all reversed and healed up.

I agree JediSkipdogg it depends on how you react to the meds and supplies etc. I rotated every 2 days like my dr told me but didn't do the trick. I was using that long needle and plus I tried the short needle. It's been too long not sure what they called each one but they had two different types of needles and Mini meds help desk didn't help much either when I was having problems. In 1999, I took myself off the pump.

[Injecto]

We have numerous people with 10+ years of pumping and they don't talk about any scar tissue. It all depends on your body and how well it reacts to something being pushed into it and how often you rotate. If one goes every 4 days I guarantee you there will be scar tissue, which I had at one point because I would go 5 days. I stopped that and it all reversed and healed up.

I'm still not so sure about that. A pediatric diabetes doctor at a major local hospital (in a city of 600,000) told us at a meeting that for most people you can go up to 4 days with absolutely no trouble and concern for scar tissue formation, and he is a huge proponent of the pump. Of course there is always variability but that's on an individual basis.

The reason is because nothing is being put in. Your body doesn't mind items inside of it (hence why we can pierce 90% of our bodies.) The problem is what happens at the end of what is inserted that matters. If there is no other object being inserted, then it is fine. If something else, in the case of an infusion set, insulin, then you cause a problem. The body sees that insulin as a foreign substance and moves over to attack it with scar tissue to prevent it form coming in.

The current problem is the FDA doesn't believe that. They are stuck on the mindset of 3 days max no matter what. Yet in numerous studies (the longest one which Abbott has completed for their Navigator) shows no more signs of damage at 5 days vs. 3 days. The FDA just doesn't believe these studies which now Dexcom and Minimed have done their own of and are both in front of the FDA for.

There have been people that have worn a sensor for upwards of 20 days with no visible damage. Then again, I also know pumpers (from another site) that leave infusion sets in for 30 days at a time with no problems.

The major problem is the FDA has to put some time limit of these things. And with every body there is a different level of resistance and immunity. THerefore they have to decide on a safe level and that's hard for them to figure out. I'm just happy I'm not on the FDA panel.

So then, 4 days isn't really a problem (based on what you said in that "other" thread (http://www.diabetesforums.com/forum/pumping-insulin/17114-cgms-insurance-question.html). Or am I misunderstanding something along somewhere. :confused:

[jen_slc]

I agree JediSkipdogg it depends on how you react to the meds and supplies etc. I rotated every 2 days like my dr told me but didn't do the trick. I was using that long needle and plus I tried the short needle. It's been too long not sure what they called each one but they had two different types of needles and Mini meds help desk didn't help much either when I was having problems. In 1999, I took myself off the pump.

This was my problem also. I pumped for 7 years and then quit. I didn't have as bad problems like Scarlett described, pumping did work for me, although towards the end my control did suffer, but it was the pain that I couldn't stand. I also did everything I was told, rotated every 2 days, rotated sites around my body, everywhere I could, but unfortunately I could only use my abdomen/hip/butt area (I don't have a lot of fat around) and eventually the scar tissue was too much to deal with. I also tried every available set out there at the time. It mentally scarred me so much that I will never go back to pumping. So it does happen. There's no guarantee that you won't build up scar tissue, there's also no guarantee that you will build up scar tissue. Everyone reacts differently.

[Scarlett]

wow-got back on today to find my thread and found a lot of replies-thanks everyone-I'm on Lantus and Novolog now and had had ups & downs ...but...I've increased my water consumption by + 32-64 ozs. daily and find that my BS's are MUCH better with rather than without-I've also noticed that my stress and anxiety levels are far less noticeable (that amazing wonderful natural resource that has been on this earth far longer than we have!) I've also noticed that the more carbs I eat (& shoot up for) the better my BS is that day. If I avoid carbs, my BS is up...strange???

[Cyborg]

I've also noticed that the more carbs I eat (& shoot up for) the better my BS is that day. If I avoid carbs, my BS is up...strange???

Very strange... :hmmmm2:

[mcneely]

How would you know if you have scar tissue?

I change out every 3.5 to 4 days. I use my reservoir until it is completely empty, or until my pump tells me it is...

From time to time when I put on my site, I have a lot of pain. Normally when that happens it is because the canula got kinked or bent slightly. I don't think this is because of scar tissue. I think it is because of bad quality.

Saying that, if you have this experience several times in a row, call up your supplier and tell them. Many times a bad lot is made and we are not warned, which I hate. I have had many bad experiences with minimed and their quick sets and reservoirs. Make sure that is not the case before hand.

So, to my original question, how would you know if you have scar tissue?

[Funnygrl]

If you go up when you don't eat enough carbs, your basal rate and carb ratios are incorrect because it shows that you are using bolus insulin to make up for an insufficient basal rate. It's actually not a very strange, or uncommon occurrence.

[someone]

This is not a strange occurrance. You need to talk to your doctor about getting your basal correct. If your doctor is good, they will probably try to adjust your basal, then tell you to fast for a day to make sure it is correct. If you can't fast a day without your BG having major changes, your basal is definately wrong.

[mark_in_toronto]

I've been using the Minimed Paradigm 522 for just over a month and am near throwing it in the garbage. When it works it's great, but that's about 20% of the time. My HBA1C was 7.0 (on my own without ANY doctor supervision), after seeing endo it will probably be around 9.5. I'm a Type 1, had it 21 years now. I rotate sites, tried 4 different infusion sets, keep getting unpredictable highs with no pump alarms. My endo (a diabetic pump user himself) seems to think scar tissue isn't the cause. But then, he doesn't speculate what MIGHT be the cause...I'm gonna go back on my own (with Humulin R & N) shortly if I'm not given an answer to improve things)! Two injections a day and pretty decent control! It seemed like I'm the only person with this problem....

[xMenace]

Hey Mark,

Welcome.

It's not uncommon to experience these things when you first go on a pump. I was in a similar boat and many on here have been too. But believe me when i say that once you get a handle on things, your control can be awesome. I've gone from 7.3 to 6.5 to hopefully sub-6 soon since last June.

Site rotation is important. There will be bad spots. I have spots I avoid. There will be bad sets too. Please don't overr-eact. I got 911'd trying to learn this stuff.

The biggest thing you need to nail down are your rates, both basal and bolus for all times of the day. We're all different, and you need to work at finding your own.

In my experience there are two types of diabetics: flat-liners and roller-coasters. Flat-liners have it easy. They can run with three or four basal rate, often with little variability between times of the day. Us roller coasters on the other hand, can have many basal and bolus rates. I use 24 different hourly basal rates and I have three bolus rates.

Nailing the rates is fairly easy, but takes some work. Keep in mind there's always variability. And the Dawn Phenomenon (DP) can play a major role. Mine is direct from **** itself.

Basal: the theory I follow is you should be able to skip or delay meals and expect your BGs to remain stable. My first rule of rate setting is isolate the effects. That is very easy to do: don't bolus. So, skip a meal and test every hour. You will see a pattern. Adjust your basal rates to meet this pattern. Make your basal tests 4 or 5 hours - trust me on this one. One problem you as a noob will have is you don't really know your bolus ratios at different times of the day, so making a basal adjustment at 10am may be hit & miss. Err on the side of caution. Nighttime is tough because you need sleep. Test over many nights to build a composite profile. Refer to Dr. Google.

Bolus: so your basals are in the ball park. Now do detailed tests around each meal. Find a good, standard meal and stick to it while you test. My initial tests were hourly, but I am currently doing a half hour test program for my mornings.

Keep the faith. It will take time, but it will be worth it. And if you do end up going back, this process will teach you a whole lot about managing an MDI program.

Chat is always open

[mark_in_toronto]

It's hard to establish basal rates overnight (I still haven't got that down after a month!) when my sugar goes from 6.1 to 16. 7 overnight despite a programmed basal of 1.2 u/h. I seem to have problems with absorption, doesn't matter whether the site is stomach, legs, or upper behind. Now using the 17mm Silhouette, which has worked last 2 days.

My situation (physical work, plus I bike to work) means "establishing patterns" is near impossible as one day I can sit on my behind all day (including driving), then the next I'm physically exerting myself all day long. My bike ride to work can be strenous one day, then easy the next....the "nurse specialist" I correspond with doesn't seem to understand the effect of exercise on blood sugar, which can come much later, meaning I should decrease my overnight basal on occasion, but the "med professionals" are often acting on what they've read in a textbook vs. having experience with diabetes, which is another problem with quite a few diabetes specialists.

I find my sugar can go up drastically from drinking a couple of instant coffees, a point I make repeatedly which my doc ignores. The CDA has info on their webpage: Drinking caffeine in large amounts as coffee over a short period of time has been shown to raise blood sugar. Caffeine does this by enhancing the effect of two hormones (adrenaline and glucagon). These two hormones release stored sugar from the liver resulting in high blood sugar. ...

Anyway my next appt. with him is in four days so I hope things can get better with the pump, maybe they'll find some problem that can make things work.

[Keezheekoni]

I'm gonna go back on my own (with Humulin R & N) shortly if I'm not given an answer to improve things)! Two injections a day and pretty decent control! It seemed like I'm the only person with this problem....

You started pumping when you were originally only on two shots per day? That's crazy. I've never heard of anyone doing that. You have to have MDI pretty down pat before they'll let anyone around here on a pump. If you don't know MDI, carb counting and basal testing, they won't even talk to you...

I know that you said in your next post that it's pretty impossible for you to do any basal testing, which may be a reason that a pump is not for you. However, I think that if you are able to do it, like basal test on days where you are active, record the numbers, then next basal test on the days you're not, record those numbers...it may take a couple of weeks, but that way you can build different basal profiles for different days of the week.

If coffee is your culprit, you may have to switch to decaf as well.

[someone]

You started pumping when you were originally only on two shots per day? That's crazy. I've never heard of anyone doing that. You have to have MDI pretty down pat before they'll let anyone around here on a pump. If you don't know MDI, carb counting and basal testing, they won't even talk to you...

Same thing here. I had to have an extremely detailed log for 2 weeks with all food and its carb along with pre meal, post meal, 12 and 3am tests. Not to mention, my meal plan was static for that period of time. It was truly a pain, but I think it was mainly for insurance purposes. When I finished, I realized I could have just made up all of the data.

[Scarlett]

But xMenace and Mark...what happens when and if you change your activity, eating, stress...etc. your basal is still the same and the bolus' help control that- I was soooooo not into counting and calculating every move in my life that I went back eagerly to MDI's-
now, I'm on Lantus 2x/day almost religiously 12 hrs. apart
Novolog as needed and calculated before eating-
my Novolog/carb ratio was calculated with the pump and I've never changed it -
endo appt. on 5/1 (going to ask him) he's going to tell me to do a log and bring it next time (like he always does)-that why I was asking about CGMS in another thread-I'm thinking of it

[Lloyd]

You started pumping when you were originally only on two shots per day? That's crazy. I've never heard of anyone doing that.


I did that. Straight from 70/30 novolog to a pump.

52 days now on a pump, average glucose 100. 9.3 tests/ day

I had been counting carbs for 15 years, I'm a T2.

-Lloyd

[Laur]

Eating more carbs causes you to bolus for the food. If your sugars are better when you're bolusing, that is an indication that you may not have enough basal and your bolus dose is covering. This has always been the case with me.

[Scarlett]

......is there a way to basal on MDI's? :confused: ...if this is it then I basal w/Lantus-17U/6:30 am and 15U/6:30 pm and sometimes wake up (4-5am) w/lows when I eat popcorn and snack at night-I bolus w/NovoLog

I miss my pump.... sometimes...then again...it was a lot easier to forget to bolus when I had the pump :eek:

[jen_slc]

......is there a way to basal on MDI's? :confused: ...if this is it then I basal w/Lantus-17U/6:30 am and 15U/6:30 pm and sometimes wake up (4-5am) w/lows when I eat popcorn and snack at night-I bolus w/NovoLog

I miss my pump.... sometimes...then again...it was a lot easier to forget to bolus when I had the pump :eek:Yeah, you can test basals on MDI, you do it the same way as pumping. Depending on what time period you want to test out, let's say 2pm-bedtime or all the way through to the next morning. You would have your lunch, start testing every hour at the 2-hr post meal mark and go as long as you can without eating, so no dinner. Still take your Lantus as normal, and Novolog as normal for your lunch meal, but then since you are not eating for your basal test, you shouldn't be shooting up any more Novolog until you stop. If over the afternoon/evening, your BG changes (increases or decreases), this tells you your basal might be a bit off and there's no point in continuing the test. I need to do this for afternoon/evenings and overnight, I just can't bring myself to skip a meal. :D

When you snack at night and wake up at 4am with lows, it could be that your ratio for your snack is too much, or it could be that your evening Lantus dose is too high. Do you always snack at night, do you always bolus for it, or do you eat to prevent a drop in BG through the night? If that's the case, your evening Lantus is definitely too high I think. I have this problem too. It means you should probably do some overnight testing. Maybe try no snacking and therefore no bolus for it, see what BG level you go to bed at, and see where you wake up at. If you're dropping more than 40 points, your Lantus should probably be decreased, especially if you're waking up hypo before morning arrives.

[andypoo]

Scarlett,

I had the same problem and know of others who can't stand the pump because it doesn't work. I'm on the inhaler now, I'm having great results and I'm very happy. If you don't smoke, I would look into the inhaler especially the novo inhaler because it’s more precise than the Exubura inhaler, it’s coming out soon.

Also the pump leaves scar tissue even if you rotate.

Hey msrkben,I was curious about the inhaler,how much insulin do you take in like that,and what kind?Does it bother your lungs?

[andypoo]

I am thinking of using Lantus,can you use your regular syringes or do you use the pens? If you use the pens how many will the supply companies ship out at one time? because don't they have a short expiration period?

[mark_in_toronto]

First, I didn't go straight from two injections a day (Humulin R & N) to pumping, I briefly used NovoRapid & Levemir prior to using a pump - counting carbs is simple if you educate yourself and stay away from the cake and doritos. Second, my problems had nothing to do with basal rates, they resulted from the wrong infusion set my doc & Medtronic recommended, the 9mm Quick Set. After 3 weeks of continuous unexplained highs, I went to the 17mm Silhouette. My results are now constantly in the 5-8 range, good considering my high level of exercise (biking to work & a physically demanding job).

I also had problems with using insulin pens, unexplained highs so I used the common denominator (a small needle or pump cannula seemed to be a problem for me) to make my own diagnosis, which was that a longer pump cannula was needed, and it has fixed my problems. Proof you have to be your own doctor sometimes.

At the time of my original post I was pretty frustrated and ready to give up the pump but I believe I have figured things out on my own no less(without much help from my doc & nurse specialist).

[xMenace]

It's hard to establish basal rates overnight (I still haven't got that down after a month!) when my sugar goes from 6.1 to 16. 7 overnight despite a programmed basal of 1.2 u/h. I seem to have problems with absorption, doesn't matter whether the site is stomach, legs, or upper behind. Now using the 17mm Silhouette, which has worked last 2 days.

My situation (physical work, plus I bike to work) means "establishing patterns" is near impossible as one day I can sit on my behind all day (including driving), then the next I'm physically exerting myself all day long. My bike ride to work can be strenous one day, then easy the next....the "nurse specialist" I correspond with doesn't seem to understand the effect of exercise on blood sugar, which can come much later, meaning I should decrease my overnight basal on occasion, but the "med professionals" are often acting on what they've read in a textbook vs. having experience with diabetes, which is another problem with quite a few diabetes specialists.

I find my sugar can go up drastically from drinking a couple of instant coffees, a point I make repeatedly which my doc ignores. The CDA has info on their webpage: Drinking caffeine in large amounts as coffee over a short period of time has been shown to raise blood sugar. Caffeine does this by enhancing the effect of two hormones (adrenaline and glucagon). These two hormones release stored sugar from the liver resulting in high blood sugar. ...

Anyway my next appt. with him is in four days so I hope things can get better with the pump, maybe they'll find some problem that can make things work.


Ya, you have some interesting patterns.

BGs can go up from intense exercising then fall afterwards. Caffeine can do that, but my endo says it hasn't been proven. But he also says that if it's true for me, then go with it.

Looks like you have A days and B days. You'll have to identify the patterns that fit each.

I use silhouettes too. They have the best apsorption IMO. I also had to learn which sites not to use. Some are nasty. And I can't go over three days. Also nasty.

Keep at it.

[mark_in_toronto]

Ya, you have some interesting patterns.

BGs can go up from intense exercising then fall afterwards. Caffeine can do that, but my endo says it hasn't been proven. But he also says that if it's true for me, then go with it.

Looks like you have A days and B days. You'll have to identify the patterns that fit each.

I use silhouettes too. They have the best apsorption IMO. I also had to learn which sites not to use. Some are nasty. And I can't go over three days. Also nasty.

Keep at it.

You're right, I have to find which sites specifically give me problems, although I just used my leg (which worked last week) and I bleed into the cannula which meant a 16.7 sugar and 2 site changes in 12 hours...I hate changing sites now, not because of the needle but because I (at the time) have a good site and it might mean changing to a bad one, and me having to change my site at 3am. I cycle to work and am fairly lean, so legs are out as an infusion site for the most part, finding sites is a challenge, so much that I just wanted to go back to needles last week when I never worried that 4 hours after supper my sugar might be mid-15's.

Re: caffeine sugar raising effect and "it hasn't been proven"-->the Canadian Diabetes Association says that "Drinking caffeine in large amounts as coffee over a short period of time has been shown to raise blood sugar." Caffeine and Your Blood Sugar (http://www.diabetes.ca/Section_About/caffeine.asp) ... although I can't find any actual study. I asked my dietitian to look for actual published studies on this last week..

Now going to test my sugar, might be 5.0 or might be 12.0....never know and that is what I hate right now regarding finding good infusion sites and pump use.

[Doug]

You're right, I have to find which sites specifically give me problems, although I just used my leg (which worked last week) and I bleed into the cannula which meant a 16.7 sugar and 2 site changes in 12 hours...I hate changing sites now, not because of the needle but because I (at the time) have a good site and it might mean changing to a bad one, and me having to change my site at 3am. I cycle to work and am fairly lean, so legs are out as an infusion site for the most part, finding sites is a challenge, so much that I just wanted to go back to needles last week when I never worried that 4 hours after supper my sugar might be mid-15's.

Re: caffeine sugar raising effect and "it hasn't been proven"-->the Canadian Diabetes Association says that "Drinking caffeine in large amounts as coffee over a short period of time has been shown to raise blood sugar." Caffeine and Your Blood Sugar (http://www.diabetes.ca/Section_About/caffeine.asp) ... although I can't find any actual study. I asked my dietitian to look for actual published studies on this last week..

Now going to test my sugar, might be 5.0 or might be 12.0....never know and that is what I hate right now regarding finding good infusion sites and pump use.
If it were me I would try to find a " Normal " relatively low exertion week to do basal test. Get a ride to work and basal test like there is no tomorrow

That will help you figure out what your body needs for basal insulin "at rest "

Then once you have that down you can use the pump to figure a percent of that for the high energy days. My pump would allow me to name the days
Good Luck

[mark_in_toronto]

If it were me I would try to find a " Normal " relatively low exertion week to do basal test. Get a ride to work and basal test like there is no tomorrow

That will help you figure out what your body needs for basal insulin "at rest "

Then once you have that down you can use the pump to figure a percent of that for the high energy days. My pump would allow me to name the days
Good Luck
One problem Doug...getting a ride to work and doing a basal test "at rest" means a basal assessment for 10% of the time for me. I commute to work by bike, ride bike on weekends also, work is physical most of the time so it's important to stick to my "normal" routine when doing basal assessments I think. I ride year round also..I live close to work and have access to public transit if necessary so there's no point in me owning a car.

Who knew that being active would present so many problems?