Insulin Pump Issues

BLC
By BLC Latest Reply 2009-07-18 09:12:00 -0500
Started 2009-06-15 10:18:20 -0500

Hello Everyone! I am new here and feel blessed to have found this site with such an abundance of information and support. I am a type one diabetic on an insulin pump but I don't know that I want to pump anymore. I had much better control on Novolog and Lantus shots. Since going on the pump one year ago this week my A1c had progressively increased. I think my A1c was somewhere in the 8s this time last year and at my last check-up it was 9.1…ugh. I am wondering what you all think about me asking my doctor if I could go back on shots. The pump seems to be a success for most people but its just not working for me…I seem to always be the exception to the rule…lol. Also I have horrible itching and minor swelling at my infusion sites and it drives me crazy. Once I remove my infusion set I can't help but scratch it. And recently got a small infection where my infusion site was (its better now). I just do not care much for the pump. I actually am using double the insulin on the pump than I was on shots. My doctor told me I would more than likely use less (once again…the exception to the rule). Since being on the pump I have went from 146 pounds to 182! The thing is always falling off me and the line is always getting caught in stuff. Should I ask my doctor about going back on shots? Thanks so much for everyone's support. You all have been a great help to me so far.


34 replies

king of hill
king of hill 2009-06-30 12:21:16 -0500 Report

I have a discount supplier for insulin pump supplies. They accept payment from my insurance for full payment on my medtronic mini-med cartridges and infusion sets. Message me for info.

anitamusser
anitamusser 2009-06-22 21:27:24 -0500 Report

I am type 1 and on the pump. the biggest problem i have is the infusion sets. The little piece of plastic that goes into the stomach always seems to bend and does not let my insulin go thru. I have tried almost every type of site. I called the Diabetic Supplies company and they are going to send me a set where it is not plastic that remains in the stomach but a needle which will be much stronger and i think will work better for me

thomas draves
thomas draves 2009-06-24 20:43:07 -0500 Report

well officially today i became apumper. I posed that question to my trainer and i was told that if we bend too much a site on the side may help and has helped some, the other thing that has caused problems like u described is pulling on the tube, r u using the 2' or the long tube. the 2 discussions i'm tracking helped give me some presight into possible problems and waht to ask and talk about. my sights are targeted to the cgm,,,, I NEED IT!
u know what's funny for 6 years i've targeted 80 to 160 now today it's 80-120 i think that this is too steep a change for me, as my acitivites and the stress levels or my activities changes regularly, almost by the minute. One minute i can be breaking concrete, the next painting trim on windows and doors. Previousely i have had to begin working at 150-175 to get 3 good hours of work without going low.
anyone else have similar issues

Richard157
Richard157 2009-06-25 13:51:36 -0500 Report

Yes Thomas, when I was younger I ran higher on purpose while I was working on my house, mowing lawn, etc. My A1c's were higher then too. I am 69 now but I still work like that about 3 hours per day. Pumping has enabled me to stay in the interval 70-120 about 90% of the time when I am not doing all that work (winter time) and 70% of the time during good weather when I am much more active.

Desdemona
Desdemona 2009-06-21 16:31:56 -0500 Report

I used Minimed the first time I pumped. That lasted about 2 years. I had skin irritations, sites that bled, and was constantly told that I "can't take that cell phone in here" when I went to work(I was working at a prison at the time). It felt like I was on a leash. I've been on the Omnipod since October - my A1c dropped .2 in the first month. Maybe you just got on the wrong system? And, yes, you will gain weight if you're not EXCEEDINGLY careful! It's just too easy to get complacent. I'm not accusing you, OK? But sit back- take the emotion out of it- and take a long hard look at the problems you're having. Have you contributed to them? If the answer is no- then tell your dr. that you've changed your mind. You are the only one who has to live with your condition- and are the only one who's decisions count.

thomas draves
thomas draves 2009-06-22 20:51:09 -0500 Report

well I will have to find out about this navigator and i greatly accept ur input. I'm also looking for both good and bad esponses/experiences with this/ these systems as they are new. My bg level is out of control. Minimed is coming and giving me a 2 hr orientation with this unit (mm522). my center at QHC has anywhere from 2 to 5 of the minirecorder implants every week. this gives a detailed mapping graph of bg levels over 24 hr period. and is analyzed with a patient sheet giving actual levels, what was eaten and what meds were taken. Mine wint haywire in afternoons, and usually stabilized in night or after morning dose of novolog. my monthly chart shows 2-5 days perfect and then days of off the wall. by the way this also seems to coincide with my bipolar and moods too, anyone else know about this or have similar problems?????

thomas draves
thomas draves 2009-06-20 22:04:24 -0500 Report

I am 46 yrs old and have been type I for 6 yrs now. I use Novolog and Lantus, found that Flexpen and Solostar give me the ability to "shoot up in public" and not be stared at by everyone as a DRUG ADDICT! I love this freedom, I often travel on mass transit and can take control at these times. But my problem is A1C lowest I every got was 8.0, 30 stress filled days later was back to 9.2.
Biggest thing I see is stress. next is if I'm home or at friends home my 42 basil is too much and I get too many lows, but if I'm out on road it's almost not enough.
Yesterday I received my Medtronics 522 in the mail. Weds 6/24 I get my training. My endo and support is Diabetic Center for Excellence at QHC, Queens, N.Y. I Love It There! Great staff, Great Doctor, classes and support groups up the wazoo! they are the most accomodating and supportive org that I have been to.
My endo visit is Fri 6/28 and that is when I get my scrips for supplies.
I am appreciative for learning about irritations and infusion site change info that I read.
I feel that I need this treatment, and with the addition of my new One Touch Ultralink that is wireless to my pump it can help me all I have to do is carb count. There is one other Option that I feel I NEEEED it is a real-time glucometer. I can add this option for $1,000. It too is wireless and I have already had the trial recorder unit twice for a 3-4 day period. I found no discomfort from the second trial at all and even forgot that I had it implanted. Took showers, and was active in all aspects and respects with my life. My activity levels range from idle to strenuous in severity as I am a self employed contractor/handyman.
Does anyone else have anything to say about the pump with the added sensor, did u use the wireless link glucometer. Did u know that the realtime glucometer needs to be finger sticked only 3-4 times dily for proper calibration, gives instantaneous BS readings with a view and has user programmable alarms for lows and highs.
To me this seems to be almost an artificial pancreas for people with our problems!
DO YOU HAVE ANYTHING TO ADD FOR ME OR OTHERS? DO YOU HAVE THE UNIT I HAVE, THE REAL-TIME SENSOR OR KNOW ANYONE THAT HAS IT?????????????????
i'd appreciate any addl info and some others may benefit from this like i think that i will.

Richard157
Richard157 2009-06-21 09:48:28 -0500 Report

Hello Thomas, I hope you get your pumping going smoothly very soon now. I have the MM 522 and got off to a very bad start because my endo in Poughkeepsie, NY gave me numbers to start with that were completely wrong for me. I had terrible highs for 24 hours and I went back on injections until I was normal again. Then I completely reprogrammed the pump with my own numbers even though I was new at it. After a few days things were much better. You have a good staff in Queens so you should not have this problem. The only other problem I had was with scar tissue. I have been Type 1 for 63 years and pumping for only 2 years. For the first 61 years I used injections and I almost always used my upper abdomen. Scar tissue had built up under the skin there and absorption of the insulin was slow and sometimes there was none at all. That caused a "No Delivery" alarm on the pump. I have permanent scar tissue on my upper abdomen and can never use it again. I now ROTATE between lower abdomen and upper legs. Rotation permits healing of one body part while the other is being used. I am no longer experiencing problems and my pumping is going great!!!

My endo permitted me to use the Navigator CGMS for one week. I only wore the sensor since it cmmunicated with the pump.It was a loaner from her office. I had trouble with it because I was given very poor instructions. My insurance is covering my pump and supplies but they will not cover a CGMS because I have good control and the endo will not write a letter of approval unless her patients are having poor control. I do still have a few highs and lows and I would like to be able to detect them before they become troublesome. Overall though I cannot complain. After 63 years of diabetes I have no complications at this time. Pumping is great!!!

Richard

thomas draves
thomas draves 2009-06-22 20:53:41 -0500 Report

thanks for the feedback i'm new in the neighborhood so i don't have this scarring problem but the insight that catheter doesn't need to be in stomach is greaT!!!!! will check into navigator too keep in touch! , i will

Least
Least 2009-06-28 12:17:07 -0500 Report

Hello Thomas,

I've been on a Medtronic/Minimed Paradigm for the last three years, and before that other models. Recently I tried the constant glucometer, for about a week, and was really disappointed. Although it claims to only need calibrated three to four times a day I found it was difficult to time and properly calibrate, one bad check - as in its off by more than twenty - and the whole system lost most of its accuracy. The machine would wake me up throughout the night with low or high alerts and when I checked I was normal. To be responsible and feel like I was actually putting the machine to use I would check when it alarmed, regardless of my lack of low/hi symptoms, but it was nearly always off. I ended up going through twice as many strips a day (up to twenty) while on the constant glucometer.

To be fair I must admit that I have read many reviews from people who liked the constant glucometer, and most doctors I've talked with are surprised at my reaction to it. But the same doctors, and even the trainers who set me up on it, admit that it has room for allot of improvement. I think it depends on the person - for me it didn't help and was actually a hindrance. If you've tried it and like it I'd say go for it! If you haven't tested it, or haven't over time, I would advise further research and a test try. It's not worth a major investment otherwise. I was very blessed - my insurance paid for mine, and I feel rather guilty with it sitting upstairs in the closet…But the insurance sure doesn't want to cover and extra ten strips a day! That's facts they can't argue with. I guess I'll just wait for a better model to come out.

Nan H.
Nan H. 2009-07-17 20:08:13 -0500 Report

I have had a CGMS (Continuous glucose monitoring system) for 1.5 years now, along with the 522. First, the good news: I love it. My A1c went from 10.8 to 6.4 in about 2 months (I was 10.1, got the sensor a month later, and the next A1c was 6.4). It makes a huge difference in my life. However, there are significant differences to know about. A few comments for you:
1. When using the CGMS, you *cannot* use the wireless feature on the meter. It can make the readings on the monitor wrong (very wrong, and very dangerous - I can tell you from first hand experience. The monitor said my BS was 110, so I drove; it was actually 26, and I crashed my car. Everything was fine eventually, but I was extremely lucky). You can't calibrate the monitor (give it a blood sugar reading) if your blood sugar is changing rapidly (after eating, going low, etc.), as it causes problems with the calibration. So, if it's time for you to calibrate, and your blood sugar is changing rapidly, you can't do it. This can mean losing data. Also, if you do enter a blood sugar when you were changing rapidly and didn't know, then the monitor can read inaccurately (that's what happened to me in the scenario above). This is only mildly annoying, but means that whenever you bolus, you have to manually put in the reading.

2. Yes, after you get it working right, you will only have to check your BS twice a day (three times the day you put the sensor in). I check additionally whenever I think I'm low, but that's just a double check. Since I've learned the "rules" of the system, it's not really necessary.

3. The low and high alarms are fabulous. Fabulous.

4. Very few insurance companies will pay for the sensors. They cost a lot to pay for out of pocket. You can typically wear them longer than they say (I wear one for a week, and then it stops working. I've heard of some who use the same one for two weeks, but I can never get mine to work that long) I still feel it's worth it, and I have every anticipation that this will change, but have no idea when.

5. The FAA states that you cannot use it on a plane. Should that matter? No. But I can tell you right now that everyone I know who uses one all the time forgets how to do things without it. It makes flight travel really hard.

6. Placement. The infusion site and sensor site must be 3 inches apart. While this doesn't sound like a problem, it can be hard to find a place for both the site and the infusion set where your clothes won't interfere, or have it pull out, or anything else.

7. The needle for the CGMS is huge. I mean it, huge. It makes me scared, and lots of people report nausea when it is inserted. It's bearable, but not fun.

It can be done, but it takes a lot of work and a lot of understanding. It's a really different ball game than just BS monitoring alone.

roger
roger 2009-07-18 09:12:00 -0500 Report

1-7 are fact have the same with mine but i can only use mine for the 3 days or i get a big red bump and starts to hurt after the 3rd day .i have tryed every thing to change this but on day 6 i have all i can do to take it out with out crying.but with being stuck to the 3 days i still do better with my bg becouse of it hope this helped
roger

roger
roger 2009-06-18 18:49:19 -0500 Report

this sounds like me but in my case it is my falt.the pump lets me cheet . i eat too much of the things i should not have and give my self a zap to cover it. is this what you are doing? also the dr told me the more insulin you use the more weight i would gane. as for the site change more often i try not to go over 72 hours and so i dont i do not put as much in to start so i run out befor i get to 72 hours. and after last scar over cancer.did not find any. i am trying to do better all the way around. but do talk to your dr even if it is just a call to let hin know how you are feeling becouse stress will make bg go up on its own . good luck
roger

BLC
BLC 2009-06-18 23:15:39 -0500 Report

Thanks Roger, I do feel the stress of just having diabetes and of course daily regular stress tend to shoot my bs up. I appreciate your response.

Amy Tenderich
Amy Tenderich 2009-06-20 12:30:44 -0500 Report

I've also heard of many people who say they "eat worse" on the pump, because it's "easier" to do so. I think each of us has to find our own individual best method of being a "good" diabetic best that we can on a daily basis -- whether that's the pump or no pump.

Amy Tenderich
Amy Tenderich 2009-06-18 16:30:18 -0500 Report

I think it's perfectly fine to go back on shots if you are happier / more comfortable. I actually know quite a few people who've done that.

ali eletre
ali eletre 2009-06-18 16:11:28 -0500 Report

Hi BLC
I am type one to and I use shots before that I was taking bills for about 7 years, what ever you used pump or shots its up to you, and you must discussed that with your doctor.. if you feel that shots are good for you ask your doctor to go back.. but which better this is the doctors opinion but there is accepting from you inside!!! How you feel about each method.. I think the choice must be yours.

BLC
BLC 2009-06-18 23:13:12 -0500 Report

Thanks so much. Its so nice to get on here and see how other diabetics view my situation. I appreciate all of you so much.

lipsie
lipsie 2009-06-16 04:12:28 -0500 Report

I am type 2 also and don't have any idea about the pump either but I also feel that it's your body and what works for one may not work for another. So on that note, speak to your doctor about changing back if thats what interest you. Good luck, keep us updated k? *Hugs* Sheila

Judimar
Judimar 2009-06-15 23:50:03 -0500 Report

Welcome to DC!

I'm a type 2 diabetic so I have no idea about the pump. I think it is important to be happy in whatever you do. Definitely speak to your doctor about your concerns.

Glad to have you here with us,

Judi

ewskis
ewskis 2009-06-16 00:27:51 -0500 Report

You have probably heard this before. Think of your pump as a tool to help control your BG levels and get them in better control. For my self I have found that I am checking my BG more often that I did with MDIs I recommend that you talk with your endo or diabetes care provider to make sure your settings are correct and about the itching have you tried using a barrier under your set or something like an iv prep.
Just some suggestions And for Sarge a lot of people I have got to know that are on the pump all say why did I wait so long I love my pump.

Sarguillo
Sarguillo 2009-06-15 17:41:28 -0500 Report

Either method you choose and use, I hope you regain your control. Could some of your issues be in how you view your pump? To some, its a god send and works wonders for them. Did you expect it to be the final answer and let you relax your attention to what you eat? Or did you not learn how to program your pump correctly? Either one can throw you off your game if not taken into consideration. Please dont take this the wrong way, I am not pointing fingers at you, Just pointing out a few issues that I know have come up with other pumpers. I myself take shots and hope I can sustain myself on shots for as long as I can. I know one day I might be on a pump, it may or maynot happen. May you find your control soon. Good luck.

BLC
BLC 2009-06-18 23:09:35 -0500 Report

Thanks for your reply. You know the more I think about it I really didn't have a lot of training on the pump. Most of my training was videos off the internet. And before getting on the pump I hated the idea of it. I guess that feeling never really changed. Thanks for helping me to look a little deeper into what may be the problem.

Richard157
Richard157 2009-06-15 14:38:27 -0500 Report

I have been pumping for 2 years and I have the best control I have ever had. The complications that I had before I started (neuropathy and retinopathy) were getting worse but they have now disapperaed. I don't have nearly as many highs and lows as I had before pumping. I see very few people on the diabetes websites who say they are doing worse while pumping unless they are still learning what it is all about.

Did you have a good pump trainer? Did someone give you good programming to get started? If your basals, carb ratios, insulin sensitivity levels, etc are not accurate in your programmibg then it is only natural you will have poor control. You have to spend a lot of time learning all the details and a lot of trial and error (tweakibg) is necessary to get things going smoothly. It took me several months to have good control after starting to pump. There is a book by John Walsh called "Pumping Insulin" that is highly recommended.

patbranam
patbranam 2009-06-15 13:30:30 -0500 Report

My husband has been on the insulin pump for three years now he is not well controlled with it but loves the convenience of not having to take as many shots durning the day as before.

I think that you should go with what makes you the most comfortable and secure. After all I feel that your comfort is the most important tool in coping with this condition.

Melissa Dawn
Melissa Dawn 2009-06-15 12:25:24 -0500 Report

I'm sorry to hear the pump hasn't been super successful for you. I've been on the pump for about 2 years now and have watched my A1c's go lower and lower each time. Still, if you are having problems with it — its your life and your body, so do what works best. If you are getting infections from the sites, that may be contributing the the higher A1c's.

Some things that have helped me improve my A1c using a pump:

1. I have lots of different basals. This annoys my doctor sometimes, but it helps me. I test my blood sugar sometimes with an average of 8 times a day. This has helped me really fine tune the basal.

2. Testing in the middle of the night, while obnoxious helps. The thing about the pump that makes it such a great tool is that whenever I test, if I am even a tiny bit high, I can take insulin. If I wake up at all in the middle of the night, I test my blood sugar and adjust — if it happens a lot, I look at the pattern and change the basal.

3. You may need to change your infusion sight more frequently. I was having major problems with the pump for awhile and finally figured out what the pattern was — the third day my insulin absorption was very bad. I got my doctor to rewrite my Rx so that I now change the site every 2 days. I have less skin irritation (I was having some of that too) and my numbers are a lot better.

Good luck with whatever you decide. I love my insulin pump and the freedom its given me — but if you can control better with shots, its worth it.

BLC
BLC 2009-06-15 16:52:21 -0500 Report

Thanks for your tips…I'll try some of those and see how they work out with me. I think a lot of my problem my just be regular, old diabetic burnout…I appreciate your reply.

John Crowley
John CrowleyCA 2009-06-15 11:03:08 -0500 Report

First of all, welcome BLC!

My son has been on the pump for over 4 years now. He also had better control on shots. But for him the convenience of the pump has kept him trying to make the pump work better. We've seen some recent success by focusing on bolusing 10 minutes before eating. That made a big difference in A1c.

But I think the pump is way too expensive an option to stick with if you don't like it. You don't even need to think twice about asking your doctor to switch therapies. It's your body, your disease, your choice. If you had better control on shots, you liked shots better (not to mention that it's more affordable), then by all means, you should be on shots.

That's just my two cents.

Here's some stuff I wrote about lowering A1c on the pump. Just for food for thought.

http://www.diabeticconnect.com/discussions/2943-a1c-success-and-the-importance-of-insulin-timing

BLC
BLC 2009-06-15 16:53:52 -0500 Report

Thanks so much for your input. Your article was very interesting. Your son is very blessed to have a dad who is such an advocate for him. Thanks again for your response.