Have you dumped the pump?

General
1

Hi everyone,

I started using an insulin pump, after 14 years of being on shots, about 8 months ago. I'm having a hard time adjusting to it and have been thinking about going back to shots for several reasons. But I'm curious about other people's experiences with the pump that may have led you to leaving it behind.

Although this may just be a coincidence, I've been sicker while on the pump that I've ever felt in my entire life. Some of my health problems have been growing worse over time, of course, and maybe the pump has nothing to do with how a multitude of health issues have taken me down and out. My reason for starting the pump and cgms was to help me catch and prevent all the lows I was having. I've got hypoglycemia unawareness, no doubt related to years of striving for very tight control of my blood sugars, with lots of highs and lows always. I thought the pump and cgm would help me finally gain some moderate control over my blood sugars. Instead, the never-ending statistics I get from my pump show only that those blood sugars of mine are always all over the place, with little consistency from day to day or meal to meal. I've been accused by the reps of not watching carefully enough for bubbles, for using bad sites, for basically "doing it wrong," but no matter what I do to correct my mistakes, my blood sugars are still as spastic as ever.

The pump feels like an annoying extra limb to me. I'm constantly dropping it, bumping things into it, getting tangled in it. It seems like it's yelling at me constantly - vibrating about highs, lows, errors, bad sensors, end of sensor, meter now, by god you'd better meter soon, etc etc etc 24/7. The whole process of infusion sites seems like a huge chore every three days. The cgm itself is a nightmare - I'm always dealing with it not working right, either beeping when it shouldn't or not beeping when it should. If I'm lucky, it's probably catching about 50-60% of my lows right now. This is the only reason I'm still trying to get this pump to work out for me, in hopes that it'll catch my lows.

Environmentally, it feels like I've got a much higher ecological footprint with the pump's many supplies than I ever did with just needles. I can't believe the amount of materials and packaging that's required to throw away using these devices. Yes, I was one of those diabetics who used their needles repeatedly in order to save money and cut down on waste.

There has been speculation by my md's that maybe there's an absorption problem going on that's causing my sugars so fluctuate so widely. It's hard to know based on the lack of info from the period before I was using the cgms, when I wasn't so good at being able to tell when I was high or low. I suspect that perhaps my sugars have always varied like this.

I suspect I may be dealing with autonomic neuropathy now and that this is what has finally taken me out of the workplace, pump or no pump. But I'm curious if there are others who haven't loved the pump. I don't know any other type 1s, and the only info I ever get is through the advertising and pump trainers who swear up and down that the pump is the only way to go. I am mostly too tired or too brain-fogged to research this online anymore. I'd appreciate anyone who can tell me about their growing pains with the pump.

Many thanks.

2

I have been T1 for 22 years, about 3.5 years ago I went on the pump, I was on it for three years, and like you I progressively got sicker and sicker.  In Dec. it occured to me that maybe I was allergic to some component of it, so I went back to injections, then started getting a hive every time I did Novolog; so I switched back to Humalog.  My dr and I discovered that since going on the pump my A1C had gone up higher and higher.  In the past five years I have developed a ton of problems, diagnoses include polycystic ovaries, gastroparesis, fibromyalgia, peripheral neuropathy, and hashimoto thyroiditis.  I have been off of the pump for a while now, but things are still getting worse...  I have never tried the CGMS, but think it would probably help me, but I'm afraid things will get worse if I start using the pump again.  I wish you luck with your problems, hopefully the pump will work for you.

3

I tried the Animas Ping pump in October, and on Christmas Eve, dropped it off at the Post Office to return it to Animas. I've been on shots for 16years now, and while I found it easier not to carry around supplies(or rather, less supplies) i found the toll it took on my emotional well-being too much. I also had MUCH less control, and went from one low a week(at most) to no less than 3 a week, usually more like 2 or 3 a DAY; but my highs were also worse and more often.

I found dealing with clothing to be emotionally draining..it took me 3hours and a fit of tears to find something to wear to my xmas staff party(i ended up wearing work pants and a tshirt). it would take about the same time to look for an outfit to go dancing with my girlfriends, or to go on a fancy date with my then new boyfriend. I always ended up in jeans and a t-shirt.

My mom had been supportive in me getting the pump(she and my endo had asked me a few times in highschool if i wanted to give it a try..i was SO against the pump i refused to talk about it..mostly out of fear of having something attached to me 24/7 at the time). Shortly after starting the pump, and seeing me get frustrated/cry and deal with low after low..actually ASKED me to take the pump off and go back to shots.

Sleeping was a pain, excerising was a pain(I had the tubing get loose and catch on a branch once and pull out the site..cuz i hadn't noticed it was caught), cleaning was a pain(again tubing got loose, caught on the railing of the stairs i was vacuuming and almost ripped it out, cuz i hadn't noticed it was caught).

My levels aren't on any kind of routine..I can do the same thing, eat the same thing, exercise the same amount, have the same stress level span over three days, give myself the same amount of insulin..and each day have different blood sugar levels. It made finding a basal rate that wouldn't make me go low one and high the next very hard.

 

Up until I sat down with my endo just before the 3month mark, I wasn't sure if I wanted to keep it or get rid of it. I missed the ease of needles and the freedom but for some reason I didn't think I should give up the pump, despite the fact it is SO fucking expensive if I were to lose my job or when my coverage went back to 80% on Jan 1st with my insurance, I couldn't afford it.

The final straw while sitting in my endo's office talking about struggling to get used to the pump, I had a low. My bloodsugar had been fine all day..but I just dropped. My lows on the pump were much worse than any low I've had while on shots(minus the time I gave myself 21units of novorapid instead of lantus by mistake..). Even if I suspended teh pump and treated my low, it took me much longer to get back to a normal level. Well, we stopped our conversation, my mom and endo shoveled food and sugar into my hands to treat it and i went back to normal. We decided to take me off the pump as of the next morning.

About 4hours later I was at my boyfriends and exhausted from the day, it was about 5pm. I had a nap on his couch and woke up at 6pm, with a blood sugar of 2.5. I had gone to sleep with a normal level, slept for an hour, hadn't moved at all while sleeping on the couch and woke up low. I was so happy to be rid of it(so was my boyfriend, he found it annoying even tho the only contact he had with it was when we were cuddling and originally thought my diabetes was more pain than it is..because i had so many lows and such horrible mood swings due to dealing with the pump!).

My endo and I will be looking at the pump again, but my endo has expressed that until it can test my blood sugar, adjust the insulin accordingly and pretty much do what a pancreas does...he doesn't see a reason to go on the pump if you can gain control with shots and are happy with shots.

4

These are some of the reasons why I've preferred to sick with injections. But to each their own.

On a side note, one of my friends just got a literal pancreas transplant. She'll be in quarantine-type procedures for the next few weeks because her immune system is so suppressed.

5

I did injections for 21 years before switching to the pump.  I've had my pump for 8 months now.  There were times during those first 3 months that I swore I was going back.  I was in tears so many times.  I had absorption problems and it took a long time to find out where on my body to place my sets.  And finding the right infusion set was also a chore.  But now that things are settled, I'm going to keep my pump.

Part of what I hated so much in the beginning was the CGM.  And it was probably the main reason I wanted the pump in the first place!!  However, I found I overreacted to what it was showing me and that resulted in me actually causing highs or lows.  When I have mine on now, I like it.  But when I'm not using it, I dont miss it at all.  It adds more stress than it alleviates sometimes.

If I were you, I would try not using the CGM for maybe a month?  That way you can focus on just getting the pump issues sorted out.  Once that's taken care of, add the CGM back in.  Another thing that helped me was taking 1 month off work - I was able to focus on getting my pump to work properly for me without having to focus on other things during the day.

In the end, you need to do what's best for your long term health.  Let's put it this way: if pumps are sooooo great, why don't all T1's use them?

6

I've been diabetic for 9 years, and I was on the pump for 5. I absolutely HATED the pump. I never got used to the feeling of having it attached to me 24/7. Alot of times when I was working out, my site would come out, since the sweat would make the adhesive come off. I tried using extra adhesive and other things, but it was such a hassle. My site always felt sore too...

I totally agree with Batts about trying to find clothes to wear with it. I was so jealous of girls that could wear cute dresses and skirts and not have to worry about where they could put their pump. Deciding to stop using the insulin pump was one of the best decisions I made. I felt so free when I didn't have to wear it anymore. I bought myself  a dress the first day I didn't have the pump anymore! :)

I know there's lots of people that love wearing the pump, and wouldn't even think of not using, but I didn't like it. I work with a girl that absolutely loves it and wouldn't have it any other way. I just thought the pump was such a hassle and annoying, and I didn't like how people would stare at it and ask me about all the time.

I hope this helps! Good luck with everything!!!

 

7

I have had brief moments like what you describe. I was a diabetic for 25 years prior to going on the pump, and have a fear of needles. I had to draw up my bedtime levimir and sit there and motivate myself to give the injection. Sometimes this took over 2 hours for me to do!

Since being on the pump I would say my life has changed for the better. I feel better, and seem to have more consistent numbers. Have you worked with your CDE, pump company nurse, or others to fine tune your pump? Medtronic on their website has an extensive step by step procedure on how to fine tume the basal rates on the pump. If your basal rates are not correct, then your readings will be all over the place.

I would also work with your doctor on what insulin may be right for you. I had problems with Humalog and switched to Apidra, and most of the problems went away. Also depending on your body type, you may not have the correct infusion sets. I would call or work with your pump company on what other sets they offer and what may work better for your body type. 

Wearing the pump is no different for me than carrying a cell phone. Prior to going on the pump at work I carried my cell phone, and a cordless phone on my belt, so I am use to carrying things around. I was called Batman from several co-workers because they would see my cell phone case, pump, and meter case, and the company cordless all hanging from my belt and/or pockets. I sort of feel naked without my pump, meter and cell phone case on my belt.

I find I am going through less waste on the pump. I am able to recycle all of the cardboard and paper that ships with the supplies, and I don't fill up my sharpes container nearly as fast, maybe at 20% what I was on the syringes.  

8

I injected for 20 years and I've been pumping for 12.  When I first went on the pump I had a difficult time for many reasons - I preferred injecting by hand which ended causing problems with the cannula bending. I hated that it was something people could see.  I was getting a mani/pedi and a woman noticed it and asked me about it and my sugars didn't seem to improve.  So I stopped it for about 6 months.  Then one day I decided to give it another try and I've been pumping since.

The difference- I decided to use the inserta device which helped me.  I change my site every two days instead of  4+ days (my white blood cells just attack and clog up the cannula.)  I also really started to watch what I was eating again.  When I went on the pump I was in my early twenties right out of college.  It was presented to me that the pump would give me more flexibility and I could eat virtually anything I want.  Well, I took that literally.  I thought I could eat anything I wanted at any time I wanted as long as I figured out the carbs and bolused accordingly.  Then I got the reality check that the doctor didn't mean for me to take it so literally.  So back to my traditional "diabetic diet" that I was taught when I was young.  I stopped eating the cookies, pizza, ice cream, potato chips, pretzels, pasta, cereal,etc... (Now, this type of food I'll eat  on very special occasions but not stuff I eat day to day. Before I was eating it day to day.) And my sugars went right into check.  My a1c's have been in the high 5's since I was in my mid twenties.  A few times I went into the low 6's but then I knew it would be time to buckled down again.  Since I got the CGM it has help even more to "flat line" my sugars (my daily goal is to have a straight line on the graph with no ups or downs) (my a1c have stayed relatively the same).  But just to have the sugars more even has improved my energy, alertness, etc... 

So the pump is a p.i. a to get use to cause you have to do your basal testing, etc... But once it's figured out and you know your sensitivity, your carb ratios, you know how your body reacts to what foods or to what type of type of exercise (low impact, etc) then it falls into place.  The accuracy of the pump is unmatchable by injection and if I choose not to eat until tomorrow I know I'm not going to low (I may be hungry but I won't be low) which is the flexibility that I like.

9

[quote user="jaco1199"]

So back to my traditional "diabetic diet" that I was taught when I was young.  I stopped eating the cookies, pizza, ice cream, potato chips, pretzels, pasta, cereal,etc... (Now, this type of food I'll eat  on very special occasions but not stuff I eat day to day. Before I was eating it day to day.)

[/quote]

sorry to side track...you don't eat cereal? as in even not the "healthy" stuff like plain cheerios? what exactly is this "diabetic diet" they have you on? are you allowed to eat anything? this is the first I've heard of ANY "diabetic diet" that doesn't let you eat cereal..

10

Hi.....The pump didn't like me......I tried two different pumps and neither one worked out.....I had extreme reactions to the infusion sets.....really bad hives and hard lumps under my skin from the tubing.....I say that it is totally your decision...the pump isn't for everyone.  If you had better control with injections, go back to those. 

11

Hi,

You are not alone in having doubts about the pump's awesomeness.  I currently using pump therapy, but I am always debating if it's really worth it since I hate it so much.

I wrote a ton about it in a previous thread: http://juvenation.org/forums/p/6050/65246.aspx#65246

Good luck!

12

Hello,

You know there are so many negative things on here. I myself have been on the pump for 4 of the 11 years I have been diabetic. I feel that I have let myself slip with control becuase of the convience. Either way I am not a great diabetic. I really like my pump. I hate CGM. alot! But my pump has been great. The only thing that sucks is when i got married int he summer i had to strap it to my leg. it sucked. but give it a good try and try without the sensor. I found I hated that the most.

13

I probably could eat cereal but not in the morning. I'm simply too resistant in the am so I avoid carbs all together in the am. (If my sugar is low I'll treat it with glucose tabs but I avoid the carbs).  My best time of day for me to eat carbs is between 10am-5pm.  In the evening if I eat a lot of carbs I spike when I'm sleeping.  When I was younger my doctor had me on a low carb, high protein diet.  From the beginning (this is 1978) I was told to stay away from pastas, pizza, white breads (bagels, muffins, etc...), potato chips, pretzels and yes cereal. So my mother just followed that advice and I ate alot of peanut butter, chicken, fish, eggs, etc... and a lot of vegetables and  fruit once or twice a day.  At this period of time the diet had to be strick.  You had to eat at exactly the same time everyday and eat exactly the same amount of calories (protein exchanges, starch exchanges, etc.).  So I went back to that type of diet. (The great thing about the pump and insulin like Lantus is that you don't have to eat at the exact same time everyday.  It offers great flexibility that way but I don't feel it offers that much flexibility in what I can eat.)  Perhaps it's just my body but if I eat more than 25 at one time, even if I'm eating protein at the same time my sugar will spike (I'll see it go to 160+) then drop back to a normal range.  I just can't get the graph (my blood sugar) to be a straight line so I just avoid the carbs as much as I can (I'll still have days the line isn't straight but if I eat too many carbs there's no way its happening).  So of course I eat a lot of things but I just don't eat the high carb foods on a day to day basis. 

14

My dearest infogirl,

I have been a T1 diabetic since I was 10 mos old.  Yes, so long that I use the anti-pc term 'diabetic', rather than "person with diabetes".  I have been using a Medtonic Minimed infusion pump for going on 9 years now.  Prior to the pump, I'd been living with injections for 35 years.  The principle reason I decided to try the pump was that I was tired of injecting myself 7-8 times a day (my regimen at that time was Lantus @ bed and Humalog with food; and I'm a snacker!). 

There were many things I identified with immediately reading your post -  I too have hypoglycemia unawareness; I abhor all the trash the pump entails (none of it, save the paper on the back of the infusion set package, is recyclable); my pump trainer and I suspect I have minor gastroparesis; and I want to throw the f-ing thing against the wall when I have my CGMS sensor on because it beeps and whoops and bugs the crap out of me!

My only direct suggestion to you is to find another pump trainer because you are NOT doing it wrong.  I was fortunate that my trainer is not only a CDE, but she's had Type 1 diabetes for nearly as long as I have.  And at 45 years old, there aren't many people out there who can say they've been had it for 44 years!  I can only guess that your trainers are making you think that it's your fault but not trying to work closely enough with you to find solutions to the obstacles you've encountered.

Here are some things that I've learned and hope you can use -

Keep a log.  What you do with the pump (settings, dose delivery), and meal time, total carbs, what you are eating, what your mood is, and other medically-related items (allergy flare, have a cold, dental appt, menses, etc). This will help you see the trends.  And you mentioned the never-ending statistics - your log book will help you correlate those stats

Through a LOT of trial and error, I found I have to play with the basal rate settings.  There's no one that works all day or every day.  So I am constantly refining mine. The Minimed 522 has 3 basal patterns available, and I have all 3 set up and ready to go. 

I definitely had to account for the dawn effect, so I set a rate for about an hour before I get up, for an entire unit an hour.  My rates drop significantly from there - I'm only getting .3 u throughout the afternoon, and I still need a snack with no bolus!   Weekends are completely different, because we sleep later and eat at different times than during the work week.   You should be able to make out a general pattern of where your glucose is from those print outs of stats.  Try to level out the lows, 1st.  Then you work on the highs.

You need to know your biorhythms - I know that I become more insulin resistant 3 days prior to menstruating.  And, as I mentioned before, that I need virtually no insulin through the late afternoon.  I've also begun experimenting with different bolus rates for different times of the day and have had lots of success.  My insulin/carb ratio is 1:6 until noon and 1:7 until midnight.  I've also changed the fixed bolus (used only when I change my set) suggested for the cannula I use from .5 units to .2, because a new site with fresh insulin means I absorb it quicker; I also set a temp basal for about 6 hours after I change sites to get less than 100% of the basal I have set (still tweaking that amount and duration) because I'm so much more sensitive to the newer insulin.  You may also try reducing your basal starting an hour before you exercise, removing it during your activity, and then setting a reduced basal for the hour following your exercise in order to prevent the LBS alarms from going off.  I've concluded to get the most out of my bolus, I need dose 30 to 15 min before eating.

I've also learned that all carbs are not treated the same.  Pizza and french fries require a different tactic than yogurt or bread.  Learn to use your square and dual wave bolus settings.  I use the normal bolus for BG corrections and my oj when I first get up.  Otherwise, I split everything else.  Dependent upon how much fat is in your meal, i.e., Pizza, I either front-load my dual wave or extend the back-end delivery.  Most meals, I split my dose so that I get 60-70% of the bolus up front with a 30 min delivery of the remainder.  That's to counter the gastroparesis (it takes 25 min for my glucose to rise when I treating lows with 4 oz of juice).  Pizza and french fries, since the high fat content makes the carbs metabolize so much more slowly, get 50-60% of the bolus up front and the rest over a 2-2 1/2 hour tail. 

Now onto the CGMS sensor.  There are so many things I could say about that little piece of technology that are unfit for print so I'll just leave to your imagination.  For the first year I tried it, I couldn't get more than 2 days of readings before the sensor error and bad sensor messages started to display. But know that I've persevered and have finally gotten IT to work for ME.  Make sure that the batch of sensors is not bad - have you called the manufacturer to troubleshoot them?  Also, it really is imperative to store them at the right temperature!  I basically froze mine by keeping them in the wrong part of the refrigerator.  

I've also tried different ways to put the sensor in:  the manual instructs a 45 degree angle; my pump trainer told me to go in at 60 degrees;  I think I'm going deeper than that, tho not quite in at 90 degrees, and I'm hitting a better place to get a constant flow of interstatial fluid, so my readings are good and for a longer period.  I also found that I need to insert the sensors high on my abdomen (away from my infusion set rotation sites).  I've also changed the settings for the alarms - I set it to go off when I drop lower than I normally go and set longer snooze durations to give more time for your low BS treatment to work.  And at my doctor's advice, I only use the sensor once a month, rather than all the time.  I choose different weeks so I'm not always getting the same set of data.

There's so much more I could say to try be helpful, but bottom line is JUST DON'T GIVE UP.  The pump itself is not a magic bullet, but the technology that it provides you is a miracle in itself.  It will work with you, you just need to take the time to make it.

15

"you'll never have a straight line graph of blood sugars.  and a post prandial spike to 160 is pretty f-ing fantastic. "

Actually I do keep the line pretty straight - I can have days that my blood sugar range (coming from the cgm) is 100-115 which I'll have for maybe two consecutive days then most days I range from 65-120 (which is pretty straight but not quite). I stay in nice control until the hormones kick in which is my 6 days of slowly becoming more & more insulin resistant -more & more moody, tired, lethargic, hungry & more ups and downs of the bs.  Then back on track again.  Carbs are the major culpit that make my blood sugar rise - so I take as much carbs out of the equation as I can.

16

jaco1199 - I envy your control and congratulate you!  I'm curious, tho, how do you live without carbs?  They are immediate energy, which your body needs, not to mention whole grains and fiber which have other benefits.  No fruit?  No milk? No starchy vegetables?  Not to mention, chips, cookies, and chocolate.  Or red wine, beer, cocktails?  How's your cholesterol?  I agree, not gorging on carbs is the key to the whole equation.  But removing them from your repertoire instead of learning how to counter their affects with exercise and insulin just doesn't seem fair.

17

Batts -

a long time ago, in a galaxy far away, there was the American Diabetes Association's recommended diabetic diet.  It was all about 'exchanges':  Milk exchange, meat exchange, bread, fruit, vegetable, fat, and free exchanges.  They grouped foods according to protein, carb, and fat components.  And then they told you how many you could have at each meal.  Like for me, I could have 1 milk, 1 bread, 1 fruit, 1 fat, and 1 meat for breakfast.  So that could be 8 oz of milk and a 1/2 cup rice krispies, 4 oz oj, 1 tsp butter (or add that to my milk to drink whole (4% milkfat milk) and 1 egg.  Now it's SOOOOOOOOOOOO much easier.  Count your carbs, period.  Now I'd add the carbs (12+19+15 = 44) and dose for that (1:6 ratio, or 7.3 unit) and adjust the bolus for how much fat (not much in my example meal).

18

[quote user="nannimae"]

Batts -

a long time ago, in a galaxy far away, there was the American Diabetes Association's recommended diabetic diet.  It was all about 'exchanges':  Milk exchange, meat exchange, bread, fruit, vegetable, fat, and free exchanges.  They grouped foods according to protein, carb, and fat components.  And then they told you how many you could have at each meal.  Like for me, I could have 1 milk, 1 bread, 1 fruit, 1 fat, and 1 meat for breakfast.  So that could be 8 oz of milk and a 1/2 cup rice krispies, 4 oz oj, 1 tsp butter (or add that to my milk to drink whole (4% milkfat milk) and 1 egg.  Now it's SOOOOOOOOOOOO much easier.  Count your carbs, period.  Now I'd add the carbs (12+19+15 = 44) and dose for that (1:6 ratio, or 7.3 unit) and adjust the bolus for how much fat (not much in my example meal).

[/quote]

I'm aware, I was started on a "exchange" type diet when i was dx 16years ago...but I was allowed to eat cereal, and pasta, and pizza....and cookies. i've never heard of a diet specific to diabetics, not just one person, that didn't allow them to eat cereal. i would call that a personal diet..not a "diabetic diet".

19

I remember exchanges, they sucked! I am so glade that the doctors have found that carb counting can work as well or better than the exchange diet.

My mom who didn't have prime custody of me and my brother from my 2nd grade year on, still thinks in exchanges, and a lot of the other old school diabetic care like eating at specific times! I have to remind her that diabetic care has come a long way over the years, insulin's have improved, and our knowledge of how the body operates is much better than in 1982 when I was dx at age 2!

I love my mom and all, but she just doesn't get it.

20

Exchanges DID suck.  "Oh, you're not hungry?  Here, eat this anyway."

I can remember one specific lunch when I was probably 10 - my mom had packed stuff up for me with one of those blue ice packs.  The meat was evidently right next to it, and subsequently froze by lunchtime.  Whoever our lunch monitor at school was saw I wasn't eating it, and told me she could microwave it to defrost it for me - and she ended up waaaay overdoing it.  I don't ever recommend eating over-microwaved, rubbery summer sausage.  It's way gross.  And she made me eat it!!