Some Tips for Developing a Lasting Relationship With Your Pump Your New Insulin Pump or ... Now That You've got it, What Do You Do With It? Bob Burnett rev. 1.10 updated 3-25-99 Sure, your insulin pump is an inanimate object, but at times, you will wonder if it has a mind of its own. The following tips may help you get used to your "new friend". ______________________________________________________________________ Table of Contents 1. Begin at the beginning - read the manual 2. Know which buttons to push and when to push them 3. Know how to return to injection therapy 4. I think something is wrong ... 5. Symptoms that something is wrong 6. Hypoglycemia 7. Hyperglycemia 8. Check your blood glucose levels frequently 9. Learn your trends 10. Pump mechanical hints 11. I'm a Pump veteran ... (or so I think) 12. Storage of supplies & insulin 13. Who should I tell about my pump? 14. Which brand pump supplies do I need to get? 15. Don't sweat the "small stuff" 16. Stay calm 17. Some useful sites for information, instructions and encouragement 18. Copyright Notice ______________________________________________________________________ 1. Begin at the beginning - read the manual The pump owner's manuals are not written by the same folks who write the instruction manuals for your VCR and computer! Believe it or not, there is some useful information in the manual. They are designed to be easily understood by the "average" pumper. When you first start pump therapy, it really is a good idea to carry the manual with you in your book bag, purse, lunchbox, etc. If you need to refer to it, it's there. If you need it and don't have it, then you're just plain stuck. Brush up on the information in the manual from time to time. Eventually, when you reach "pump veteran status" you will find that you don't need to refer to it often (but don't forget where you put it, just in case) 2. Know which buttons to push and when to push them o You need to know how to respond to pump alarms - they will occur from time to time. Knowing what the alarms mean and how to respond to them may save you some frustration and needless concern. o It makes sense to know how to stop a bolus before you learn how to start a bolus - kind of like knowing where the brakes on the car are located and how they work before you step on the gas for the first time. o If you program a bolus incorrectly, you need to know how to stop the pump before the wrong bolus is delivered. Stopping bolus delivery ... MiniMed 506 or 507 pump: o From the "clock screen" press SEL button twice to get to the SUSPEND screen. The screen will now be blinking. o Press the ACT button to stop delivery of the bolus. The pump beeps, the screen displays the letter -S-, the word STOPPED, and the time which you placed the pump into STOP mode. Note: Your pump will now be in STOP mode, and insulin delivery will be interrupted until it is put back into RUN mode. (Pressing SEL then ACT will restart your pump. Remember to do this, or your pump will remain in STOP mode!) Disetronic H-TRONPlus V100 pump ... You have three opportunities to cancel the bolus with the Disetronic pump: o Before the bolus confirmation beeps: Press the "opposite" button to the one you pressed to program the bolus amount. This will return the bolus amount to 0.0, and no bolus will be delivered. In other words, if you pressed the m button to start the bolus, press the h button to stop it (and vice versa). o After the bolus confirmation beeps (before delivery): Place the pump into STOP mode by pressing the h and m buttons until the pump beeps and the display shows STOP. o During delivery of the bolus: Placing the pump into STOP mode will interrupt bolus delivery. To place the Disetronic into STOP mode, press the h and m buttons at the same time and hold for 3 seconds. The pump will sound three short beeps, then one long beep. The word STOP appears in the display.Note: Your pump is now in STOP mode and insulin delivery will be interrupted until it is put back into RUN mode. To return the Disetronic to RUN mode: Press the h and m buttons at the same time and hold for 3 seconds. The pump will sound one long beep, then three short beeps when the word RUN appears in the display. Remember to do this, or your pump will remain in STOP mode - no insulin will be delivered until the pump is returned to RUN mode! 3. Know how to return to injection therapy Knowing how to return to injection therapy is useful if you decide to take a "pump vacation", or need to interrupt your pumping routine for some other reason (you've totally run out of supplies, have been abducted by aliens, etc). These procedures should have been written down for you by your health care team when you started pump therapy, and they should be reviewed from time to time, just in case. o Short pump vacations of two or three days typically require you to take injections of Regular or Humalog every 3 - 5 hours until pump therapy is resumed. o Typical formulas for this routine suggest injections of Regular or Humalog every 3 - 5 hours of the total amount of basal insulin you would normally require for this 3 - 5 hour time period. (Estimate hourly basal rate times 4 hours if using Regular and times 3 hours if using Humalog. This will compute the amount of insulin needed per injection to replace your basal rate for this time period. Remember that these are estimates - actual rate of onset and duration of insulin activity will vary with each individual. The timing of injections and the amount of insulin required will need to be adjusted based on experience and the advice of your health care team). o Bolus amounts will need to be taken by injection for meals and adjusting high BGs. This regimen will require that you wake during the night for an injection, since you will not have sufficient insulin in your system to carry you until morning. o Pump vacations of longer than three days may require you to return to a combined regimen of long lasting insulin (NPH, Lente or UltraLente) and Regular or Humalog. o It may have been a long time since you used NPH, Lente or UltraLente insulin. The dosages you need today are likely very different from the amount of Regular you are currently using in your pump. The timing of your injections and meals will likely need to be modified as well. If you write this plan down in advance, it will make the return to injections easier if necessary. o Pump vacations should be discussed and planned with your health care team. As you become more experienced over time, these vacations can be easily fit into your overall management plan. 4. I think something is wrong ... There will be times when things just don't seem right. Having a process and procedure in place for diagnosing troubles is useful. Always ... o Check your blood glucose levels o Read the manual! I mentioned this already, didn't I? This is worth repeating... Check the pump ... o Review the bolus history screen Check your infusion set and site. For some hints on site problems, see Is my infusion site the cause of my high blood sugars? o Check for leaks o Check for blocked or crimped tubing o Check for large bubbles in the line "Been there, done that" I remember the first time I had seriously high blood glucose readings, two weeks after starting on my pump. I had low to moderate levels of ketones in my urine (I never show ketones in my urine) and was not sure what had gone wrong - I was in a bit of a panic. My first move was to call the pump vendor and speak to the technical support person - she had me check all sorts of physical things on the pump, had me check my infusion site, etc. What neither one of us thought of checking was the "bolus history" on the pump (this display shows when you took your last bolus and how much of a bolus you administered). If we had checked the bolus history, it would have been immediately obvious that I had forgotten to take my breakfast bolus. Once I realized this and corrected for it, things were on their way back to normal fairly soon. Call for help! o MiniMed Technical Support number (800) 826-2099 o Disetronic Technical Support number (800) 688-4578 These telephone numbers are printed on the backs of the pumps for convenience. Note that the numbers may not be on the back of older pump models. 5. Symptoms that something is wrong Symptoms may include one or more of these indicators: Unusually high or low Blood Glucose (BG) readings o Can indicate improper basal rates, incorrect bolus for amount of carbohydrates consumed, infection or illness; may be a reaction to physical or emotional stress. o Kinks or blockages in the infusion set can also cause unusually high BG readings, without resulting in a pump occlusion alarm. This problem typically results in several readings out of the normal range. On successive BG tests, you may notice a tendency for the BG readings to continue to creep higher, even after corrective boluses have been administered. Alarm(s) from the pump o Can indicate low battery, clogged infusion set, low amount or no insulin remaining in cartridge, etc. An unusual sound from your pump o Can indicate malfunction or damage An odor of insulin o May be due to a leak inside the pump, or a leak in the tubing. Note that insulin "smells like band aids" Pink or red color in the infusion tubing o Often the first hint of blood at the infusion site. Blood in the tubing can interfere with insulin delivery Irritation at the infusion site o Redness, swelling, itching or "burning" at the infusion site may be due to site infection, needle or cannula inserted too deeply or at too steep an angle, possible allergic reaction to the insulin Moderate or high levels of ketones in your urine (THIS IS AN IMPORTANT WARNING SIGN !!!. Failure to respond to ketones in the urine can result in DKA - Diabetic Keto Acidosis). If you are using Humalog in your pump, this becomes even more important, since Humalog leaves your system even more quickly than Regular. Interruptions in delivery can result in more rapid ketone buildup than happens with Regular. An isolated high BG reading should not be cause for immediate alarm - the cause may be simple (incorrect bolus for food consumed, incorrect basal rate, for example) and might be easily corrected. The general rule of thumb used by many health care teams is "don't panic after one single high BG reading". Investigate the suspected cause of the high reading and try to isolate the problem. If another subsequent reading taken 1/2 hour to 1 hour later is still too high, then it may be time to take some additional corrective steps. Additional corrective steps might include any one of these tasks. (Note: Try one thing at a time, determine if it is successful before moving to the next possible "fix".) o Changing the infusion set o Changing the cartridge or reservoir in your pump o Using insulin from a fresh bottle o Administering a supplemental bolus by syringe. One key to successfully managing your insulin pump is to not panic when something is out of the ordinary. If diabetes were always 100% predictable, how interesting would it be? Remember to check your own personal "Action Plan for Trouble" with your health care team. Your team may have different thresholds advised for you to take corrective action and may also have additional procedures for you to follow in case of trouble. 6. Hypoglycemia Low blood sugar may include some or all of these symptoms: o Feeling "shaky" o Rapid heartbeat o Clammy / cold skin o Inability to concentrate o Difficulty focusing your vision o "Tingling sensation" or "numbness" in the tongue or lips o Weakness o Sudden hunger Remember that insulin pumps do not totally eliminate the possibility of hypoglycemia. This situation can still occur and requires appropriate treatment when it does happen. 7. Hyperglycemia High blood sugar may include some or all of these symptoms: o Blood sugar readings above 240 mg/dL o Nausea, vomiting o Muscle, joint aches o Excessive thirst o Blurred vision Hyperglycemia can still occur when pumping and these situations need to be dealt with properly to avoid any serious problems. 8. Check your blood glucose levels frequently Don't simply rely on "how you feel" to determine what your BG levels are. If you guess wrong, and base your bolus amounts or basal adjustment on this wrong guess, you could end up with seriously high or low Blood Glucose levels. Besides your pump, you will quickly develop a strong working relationship with your Blood Glucose monitor ;-) You might find yourself swearing at it when the readings are high, but you will smile at it when the readings are "right on". Your meter will not respond to screaming or swearing (I know, because I still try this). The only thing which will change the numbers on the meter are changes in your blood glucose levels. 9. Learn your trends Learn to work with your numbers, learn your "trends" and patterns. Learn how long it typically takes your system to respond to mealtime boluses and supplemental boluses (a bolus taken to adjust a blood glucose reading which is out of your target range). Since your insulin pump will allow you to adjust your insulin rates precisely, working with this trend data is much easier than it typically is with single or multiple injection therapy. 10. Pump mechanical hints Dealing with the everyday mechanical tasks involved in managing your pump can be confusing at first. These mechanical aspects of pump therapy will soon become "second nature" to you. Priming Priming is done to purge the newly connected infusion set tubing of air. For MiniMed pumps, priming ensures that the pump motor driver arms are seated fully against the reservoir plunger. For Disetronic pumps, priming also ensures that the piston rod is seated firmly against the insulin cartridge plunger to guarantee consistent, accurate delivery. Once the infusion set is primed (for example, after changing an infusion set, cartridge / reservoir) it is usually not primed again until a new infusion set is attached to the pump, when the cartridge / reservoir is changed, or when you need to clear the tubing of a large bubble :-( Disconnecting When you disconnect temporarily for shower or other activity, it is not necessary to prime the infusion set again, since the tubing already contains insulin. However, before I re attach my pump, I will often bolus .5 or 1.0 unit before re connecting. This is a convenient time to check to see that insulin is flowing out of the tubing end, and everything is working o.k.. DO NOT PRIME THE TUBING WHEN IT IS STILL ATTACHED TO YOU. THIS WILL RESULT IN A "SERIOUSLY LARGE" BOLUS, WHICH IS NOT SOMETHING YOU WANT TO DO ACCIDENTALLY!!! If you are disconnected for a period of time, it may be necessary to bolus a small amount to make up for the basal insulin you missed while you were disconnected. The timing and amount of this adjusting bolus will vary among users. It will take some experimenting to discover your limits and ranges. The MiniMed Silhouette (also PureLine Comfort / Disetronic Tender) infusion sets ship with a small clip which is designed to snap into the cannula base (part which is taped to you) when you disconnect for showering or "whatever". This protects the cannula portion while you are disconnected and prevents stuff from getting into the end of the cannula base. There is another plastic piece which clips to the tubing part of the set while disconnected and protects it. If you placed this clip on the portion of the set which is attached to your body, you should be able to bathe with it and not worry about water getting in. This part of the cannula base also tends to seal itself when you remove the tubing end. I view this as a one way "fluid lock". The seal does not allow anything to flow in or out of the seal until the tubing is connected again. For "Quick Release" sets such as those offered by MiniMed, there is a rubber "stopper" which is placed over the needle portion of the Quick Release mechanism while disconnected. This protects the needle from contamination. Most of these sets work just fine for showers, but I'm not a bath guy ;-) If you are a "soaker" who sits for an hour or so in the tub, the adhesive on the tape can start to loosen. In addition, sets with "pigtails" on them, such as the MiniMed Quick Release sets, should be protected from prolonged exposure to hot water. Prolonged exposure to hot water will result in the distillation of the insulin which remains in the tubing. Insulin affected this way will frequently lose its effectiveness. 11. I'm a Pump veteran ... (or so I think) "I've been doing this for awhile", you say to yourself - so what about "Pushing the Envelope"? One of the best pieces of advice for any pumper is "Learn the recommended limits" for your therapy. Infusion set change intervals: You will hear many different stories from many different pumpers about how long they can leave their sets in. Remember that the times recommended by the pump vendors and the manufacturers of the infusion sets are: Recommended infusion set change intervals o Steel needles: Change every 48 hours, or right away if you notice any site irritation, itching, etc., or if blood sugars remain over 240 for two subsequent tests and they do not respond to supplemental boluses. o Soft cannulas (SofSets, Tenders, Comforts, etc): Change every 72 hours, or right away if you notice any site irritation, itching, etc. or if blood sugars remain over 240 for two subsequent tests and they do not respond to supplemental boluses. I know users who regularly exceed these recommended intervals. It's somewhat ironic that one of these people mentioned that the first (and only) site infection she had was when she first started pumping and was "experimenting" to find out how long she could leave the same set in. She exceeded the recommended change interval by about 200 %, and ended up with a nasty site infection. I'm more cautious, change at the recommended times, and have not suffered a site infection since I started pumping in April 1996. Learn YOUR limits... One abbreviation which you will see if you frequent any of the internet mailing lists or newsgroups on the 'net is: YMMV. This means "Your Mileage May Vary". It's a neat way of summing up the fact that you are your own person - your needs are different from other peoples', your reactions to changes in your routine are different than others', and you may not get the same "mileage" out of a recommendation as your new friend in cyberspace. 12. Storage of supplies & insulin Proper storage of your pump supplies will help avoid the little problems which can crop up and spoil an otherwise delightful day ... o Keep your pump supplies in a cool (not cold) location, away from direct heat, such as furnace registers, window sills, etc. The reservoirs and cartridges have lubricant inside them which does not like hot storage environments. Since many of the disposable parts are plastic, they generally behave better when they are not stressed by environmental factors. o Although the supplies are sealed in sterile packages, keep them away from dirt, dust, pet hair, etc. o Keep your insulin cool. Insulin can be stored at "room temperature" when in use for periods up to 30 days (the exact number of days is the subject of endless discussion and debate. Use this estimate as a "rule of thumb" only). It is generally advised to keep unused insulin refrigerated between uses. It appears that the potency, onset time and duration of insulin, especially Humalog, is most consistent when the insulin is not subjected to extremes in temperature when the bottle is in use. 13. Who should I tell about my pump? Other people should know that you are using an insulin pump, but many new users are confused about who to tell ... Certainly anyone who asks is a likely candidate for a conversation about the benefits of your new "friend" (your pump, that is). As a minimum, I recommend telling your co workers and close friends that you are wearing an insulin pump. You may not need to tell them all the details about basal and bolus rates, infusion set differences, tape, temporary basal rates, etc., but let their natural curiosity guide you. Many users find that wearing a pump allows them to be much more "open" about their diabetes. They find themselves eagerly telling all sorts of different people about their pump. There are stories of pumpers stopping complete strangers to tell them about the "joys of pumping" ;-) 14. Which brand pump supplies do I need to get? One of the most frequently asked questions is: "Do I have to use the supplies recommended by my pump vendor?" The quickest answer is "NO". The infusion sets are interchangeable, although each pump vendor prefers that you purchase their brand of supplies. Truth of the matter is that PureLine Comfort infusion sets, and Disetronic Tender infusion sets all work in the MiniMed pump just as well as the Disetronic pump. Try not to be too stubborn about "brand loyalty". If another brand provides the same or better performance, try it out. The pump vendors and many of the supply houses will be glad to send you a sample of a different product to try. The insulin reservoirs and cartridges ARE NOT interchangeable. The MiniMed pump uses a reservoir to hold the insulin, while the Disetronic uses a cartridge. Each performs the same basic function, which is to store the insulin supply inside the pump, but the products are specific to each manufacturer's pump, due to basic pump design differences. The Disetronic pump does offer plastic as well as glass cartridges. MiniMed pumps only use plastic reservoirs. There are no alternative reservoirs available for the MiniMed pumps. There are a variety of different tapes available. Kendall PolySkin (offered as part of MiniMed's supplies), Tegaderm, Hypafix, etc. Each has its own strengths and some have evident weaknesses. Choose one (or more) that you are comfortable with, and go with it. Again, most supply houses and the pump vendors will be glad to send you samples to try. My favorite happens to be Hypafix - comfortable, breathable, sticks when and where you want it to, does not leave a rash, (did I say I really like this tape?). 15. Don't sweat the "small stuff" Details are important, but you can drive yourself nutty worrying about too many small things. Not everything is critical, there is some flexibility, and some days some things just simply work better than other days. Bubbles o Small bubbles in your cartridge or infusion set are o.k. If a bubble in the tubing gets too large it can result in less insulin being delivered. A one inch bubble in the tubing represents approximately 1 unit of insulin which won't get delivered. Clearing bubbles in reservoirs, cartridges and tubing o Tap the reservoir / cartridge while you are filling it to help move the bubbles to the top, where they can be dislodged during priming; o Tilt the reservoir / cartridge while you are filling it and try to make one large bubble out of many small ones. This will allow you to dislodge the large bubble during priming; o Try to let the insulin warm to room temperature before filling your cartridge / reservoir. If you fill your pump with cool insulin, bubbles will appear when the insulin warms. o Fill the reservoir / cartridge slowly and ensure you do not purge air from the reservoir back into the insulin vial by "squirting it" through the insulin remaining in the bottle. This just causes more bubbles. If you find a large bubble in the tubing after you are connected, try to watch it's progress. You can judge how far it moves with each pump "click" or "pulse", and estimate when it will arrive at the infusion site and pass into you. If necessary, an adjusting bolus can then be administered to compensate for the missed insulin. Believe it or not, this is not really that big a deal - your numbers might just look funky until the adjusting bolus kicks in ;-) 16. Stay calm Try not to "freak out" when your blood sugar is at a different level than you expected it to be. You now have one of the best means of dealing with this - an insulin pump. You will find it is flexible, easily managed and powerful. Use it to manage the unexpected. 17. Some useful sites for information, instructions and encouragement o Disetronic Medical Systems, Inc. . Disetronic Medical Systems' main web site. o MiniMed . MiniMed's main web site. o Tape Tips and Other Infusion Site Information . From MiniMed - includes diagram of recommended infusion sites. o Use of Humalog in an Insulin Pump - from John Walsh, author of "Pumping Insulin" and "Stop the Rollercoaster". 18. Copyright Notice Copyright (C) 1999, Insulin Pumpers and Bob Burnett bburnett@twcny.rr.com Permission to use, copy, distribute this document for any purpose is hereby granted, provided that the author's / edi- tor's name and this notice appear in all copies and/or sup- porting documents; and that an unmodified version of this document is made freely available. This document is dis- tributed in the hope that it will be useful, but WITHOUT ANY WARRANTY, either expressed or implied. While every effort has been taken to ensure the accuracy of the information documented herein, the author / editor / maintainer assumes NO RESPONSIBILITY for any errors, or for any damages, direct or consequential, as a result of the use of the information documented herein.