Glucagon Puzzle

Just three of out many practice kits-in-waiting

Just three of our many practice kits-in-waiting

Running theme Bigfoot life is not sure how serious some D-thing is.

Usually answer is: pretty serious or very serious. But have learned some things less serious than initially thought. Example:

  • no longer bring complete site change set with us into Target /walking the dog/etc.
  • don’t weigh glass of milk
  • don’t test 2h PP (could be bc Dexcom)
  • advance lancet approx. 1x/month
  • probably a lot of other things

Travel back August 2011: family reach out-of-pocket maximum bc hospital stay. So September, October, November, December 2011 auto-refill glucagon kits. 2 per month=8 kits.

Extravagant number! Kits everywhere: bedside (each parent), kitchen drawer, kitchen first aid cabinet, bathroom medicine cabinet, wicker creel for to-go times, also in purse, + @school.

Now these 2011-minted kits expiring. Notice one beside bed expire 3/2013. Oops. Find current supply = only 2 freshies. Where keep precious commodity? On person (or in purse/coat pocket during day, bedside while sleep?)  or in perma-location? Need more than 2 so can have more set locations, or 2 is plenty?

One hand, hard take glucagon seriously, because never need/never know of person actually use. Wonder if eventually D-families stop refill glucagon Rx bc seems like overkill? Other hand, someday could need this lifesaving harpoon. How make sure life-saving harpoon is nearby when needed when only have two? But last time refill CVS, high enough co-pay Bigfoot reconsider necessity of >2 kits. Maybe was $100: irrelevant for save life, exorbitant for junk up kitchen drawer w. unneeded equipment.

If only have two: probably best keep one @school nurse and one in kitchen first aid cabinet; try remember take K.F.A.C. one along in car/purse when leave home & up to bed each night. Maybe tape kit to Verio IQ case?

Need help figure out:

1. How many kits do we need?

2. Where should they be stored?

3. If I’m going to have to remember to take it along/put it back, how will I remember?

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49 responses to “Glucagon Puzzle

  1. g

    we have similar problem with inhalers….current status…one at school nurse…one in soccer bag…one in my bag. (use to also have one in medicine basket, one in each car, one at bedside, etc…)

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    • Katy

      Wow! So—the one in your bag—do you put your bag by your bed? Or if you needed it at night would you just run down to wherever your bag is and always remember to not leave your bag in your car? We can figure this out. It’s going to be ahelluva system!

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  2. NicoleP

    You know at least one person who has needed glucagon. Several times…. Ack. I keep my two kits – one in my bag/with person who is with me if I’m out and about and another at home on bedside table. I don’t understand how sugar and water can expire either… Does it turn into something BAD (ahem, elicit white powder drug?)?

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    • Katy

      wow. can i read about that at dLife?

      do you think we should keep the expired ones in active use? is it like how canned goods don’t expire but have to be dated for some legal reason unrelated to spoilage?

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      • I will write you a post about it – though I think there is at least one on there from waaay back – it’s been a couple of years…. From everything I’ve read, it becomes less “potent” after expiration date… I saw a thread on CWD and another on WebMD that says you shouldn’t use them for much more than 6 months after the printed date… ACK!

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      • Katy

        6 months after the printed date? So my 3/2013’s are still golden!

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  3. I don’t know the answers to your questions … other than 3 seems like a good number to me … 1 home, 1 school, 1 in d-bag … I would definitely refill the prescription because you know the minute you don’t have one you will need one!

    also last thought on $$ … we have a very large deductible too … but we know for certain that we will eventually go through that number in less then year … usually we have reached the deductible within 4 to 5 months … so I never really worry too much about how much something costs because the sooner we reach the limit the better … hope that makes sense

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    • Katy

      I guess ideally I would get the most expensive things (lots of insulin + glucagon) before we reach the $3K deductible and then just refill things with the lowest co-pays after reaching 3K? Look out, 2014! I’m figuring out the system!

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  4. Our script is for 2 each kid so I guess I get more options. I don’t fill it more than once a year. (knockwood)
    Two at school. Nurse told me they have to have the kid’s name on it (script wise) for her to use it on them. I would hope she would use whatever she got her hands on – my kid or not.
    One in my purse. I used to not carry one but had a kid threatening to hurl after eating and shooting up ~10 units so got noided out. This one also goes on sleepovers – sometimes.
    One on the top of the bookshelf equidistant from the girls’ bedrooms.
    The expired ones are in a pile. We plan on having a practice race. And I gave one to the nurse to practice with since she had never used one.

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  5. Lisa G

    We carry one in my daughter’s purse/supply bag and keep one in the medicine cabinet. I have never had to use it on a call-911- kind- of- emergency, but used it once back in the day of mdi because I accidentally gave her way to much humalog. I have also used it several times as “mini gluc” shots when my daughter was vomiting and her bg was low. Handy to bring up the blood sugar to a safe level when they can’t keep anything in their stomach, but you need to be able to give insulin to fight ketones.

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  6. For 8 years I never even owned a gluc kit. 2 years ago I started carrying one in my purse, and one at my parents. I was living alone at the time. But then I began to wonder about the one in my purse and the weather fluctuations my purse endures. I never even came close to needing it so I ditched it.
    Now they’re all expired. I still have to pay a lot of money out of pocket for them so I haven’t refilled.
    Ryan keeps one on his side of the bed. It’s expired but how bad could it be?
    I don’t know, I’m debating even buying more.

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  7. kimberly

    The glucagon kit contents can go bad, as they aren’t just water and sugar, but actually a polypeptide hormone w/ a pH specific solution. If a fresh kit isn’t available, I’d rather err by trying an expired one, as opposed to doing nothing. I recently read a heartbreaking story of a boy who died from an anaphyllactic nut allergy because she was advised (by the 911 operator, who really wasn’t qualified to advise) not to use the expired epipen that she had on hand. I can’t imagine having to live the rest of my life wondering if that expired item could have made enough of a difference to save my kids life.

    One thing that concerns me about Glucagon is storage temperature. So I always throw it on top in the cooler when we go to the beach, rather than having it baking in my bag. I also put the glucometer in the cooler, ever since we had one get overheated at the beach to the point where it wouldn’t work for a solid hour. Nerve-wracking! I wish that the kit was insulated to protect it from temperature extremes.

    We’re not in the habit of constantly carrying the kit with us. I try to bring it if we are going to be out of the house for several hours, while doing (or following) a lot of physical activity. We store one or two in our supply drawer, another at school – that’s pretty much it. I try to keep two in the drawer just in case one doesn’t get returned to the drawer immediately upon return. I like to always know that there is one that never moves from it’s assigned spot.

    I like having 3, mostly because I can’t count on ‘the others’ to return it to where it belongs, promptly. If I lived in a bigger home, I’d probably have a few others stashed in choice spots.

    So far, we’ve never used it… but I do know people who have.
    I’d rather have it and not need it, than need it and not have it.

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    • Katy

      “I try to keep two in the drawer just in case one doesn’t get returned to the drawer immediately upon return.” <—that's my kind of system. I like this so much.

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  8. Pancreastic Mom

    We have 2..one in d-area of kitchen for the moment…it will go to the school in the fall. The other goes and stays in the “d-bag” with the meter and test strips and lancing device (with a couple extra lancets just in case we get the whim to change it or I drop it on the floor and the top comes off to expose the lancet) and a couple packs of Smarties or mini-Airheads or whatever form of sugar is on board for the moment. I use a freebie “with-purchase”type cosmetic bag after a couple not-so-great actual d-bag purchases. This works better than trying to fit things into slots that don’t fit what we need them for. The bonus is that it fits in my purse or hers when we leave the house and it has a base on it (it’s short and oblong)that allows it to stand so it sits on the middle of the kitchen table during the day for easy access…and that is halfway between me and her during the night so I pick it up on the way. Anyway….point is, it’s just always there. And, no, we’ve not had to use one yet either.

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  9. I’ve had to use it once. I drank some whiskey and threw up a bunch of food I’d just bolused for. I was low and dropping and drunk and knew I wouldn’t be able to keep anything down, so I did about half the vial. It worked quite well.

    I haven’t had a sip of whiskey since.

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  10. I have around 8. I am willing to share. I reach my pharmacy out-of-pocket max sometime in Quarter 4 of the year and then I go into squirrel mode gathering & stashing as much D-supply as I can. My script is written for 2/month and I get a 3-month supply. So every year I order 6 glucagons whether I need them or not. Someone should start a Secret D-supply exchange so we can post what we have, what we need and help each other out.

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  11. Pam

    Eight seems like a lot! We have 3. One at school, one in the d-bag with meter, etc., and one in our ’emergency/travel box’ stored on my daughter’s closet shelf. We’ve used it once, mini-dosing with an insulin syringe, for a vomiting episode immediately after Christmas dinner. Someone once told us he keeps his home one on top of the fire extinguisher, reasoning that the family would think ’emergency’ and remember where it was.

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  12. As an adult T1D I only have 1 and it is kept in the side pocket of my purse, which is with me all the time. As soon as it expires, I order a new, fresh one and have my fiance practice on the old while I watch (I’m sure that’s not nerve-racking).

    I’m with Jackie above. I’ve only used 2 in the last 18 years and both were alcohol related. Drank too much, too hungover/vomitting, blood sugar dropping. (Still drink today, just not like a 20 year old.)

    Kerri had a guest blogger a while back who told a story of being on a plane and the flight attendants came over the intercom to ask if anyone had a Glucagon. He wasn’t carrying one and was kicking himself for not only NOT having one for himself, but now he was unable to help a fellow diabetic. Luckily, the plane was able to land and the woman made it. If you don’t want to carry one for yourself, perhaps carry one in the off chance someone else will need it.

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  13. mollyjade

    I had to use it (or had it used on me) a few times when I was a kid. That’s how I learned the very hard lesson, do not take a nap when you have a terrible unexplained headache.

    We keep one at home with the D supplies where my husband knows to find it. And he practices with the expired one every year. I don’t keep one at work because I don’t trust that my coworkers know what to do. I’d rather they call 911 immediately than waste time trying to figure out how to use a glucagon kit. The fire department is only two blocks away. Maybe that’s foolish. I don’t know.

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  14. I started to write a comment, but the comment ended up being so long that I’ll probably just publish it as its own blog post tomorrow. But, in summary, I am quite irresponsible when it comes to glucagon. I let them expire, I accumulate new ones (when I remember), and that’s it.

    Stupid, I know. But still, I don’t think there’s a need to take it everywhere – just leave it at home. To be honest, I can’t see a need, while awake, for a glucagon shot. It’s when we sleep that there’s a chance of slipping into a dangerous low. (though Jacquie’s comment above makes me reconsider that…)

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  15. Present for you, Katy: http://www.dlife.com/diabetes-blog/?blogId=8516456 It’s not the greatest gift in the world, but there it is!

    And, if you believe the interwebs opinion on glucagon, it’s not poisonous after 6 months just not as effective either….

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    • Katy

      oh, nicole. i’m crying. your mom. your sweet mom! waiting for the ambulance!
      it is the greatest gift in the world.

      after the comments, here are my THREE glucagon conclusions: i should have 3 kits (unexpired)–one upstairs, one downstairs, one in the D-bag; my family needs a better D-bag/system; and glucagon is serious.

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  16. I think everybody’s pretty much said this – one on person/in d-kit and one at school (almost forgot I had one at school one year and they called us to come get it). Now that I am in college I keep one in my bag (on me 90% of the time) and one in my room, and have pretty much only ever had 2 at a time. The important thing is to make sure you refill them before they expire for obvious reasons.

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  17. Pingback: Disrespecting glucagon | Rolling in the D

  18. I haven’t bought one in close to twenty years. The wife is too scared to get close to me because I flail around. It is a lot easier to call 911. But if I am docile, she squeezes dex-4 gel into my mouth. No, you do not need to swallow.

    Now after seven years of pumping, I’ve learned how my body works. I rarely ever have hypos and even more rarely severe ones. Sub-6er too.

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  19. Katie S.

    I have had T1 for 28 years (I’m 29). Growing up my parents had to use glucagon on me usually 1-2 times a year. (but my last encounter was now 11 years ago! Woo hoo!). We only ever kept one kit in the fridge and never carried it around with us. Then again, all of my seizures occured in the early morning hours (4-6am). I never needed it anywhere besides home.

    For people commenting about practicing and making sure those around you know how to use glucagon, Lilly made a free app that gives step-by-step instructions and lets you “practice” using glucagon on the touch screen. In an emergency you can just set it up to read the instructions to you. My husband has the app on his iPhone and iPad (unsure if there is an android version). Every 3 months it reminds him to “practice”. Also, you can tell the app when your kit(s) expire and it will remind you to replace when needed. I went over the app with my husband when we originally downloaded it to make sure he understood what to do. Just search for “glucagon” in the app store–I think it’s really useful if you need to train someone on how to use it.

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  20. Never had a glucagon kit… 😦 It scares me a bit, but I don’t have insurance and haven’t been working so… Story of my life, I just carry liquid glucose and think good thoughts.

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  21. Since Bubs doesn’t have hypoglycemia awareness, and is rarely alone for long periods (is with you or friends or teachers or someone else that would notice if he was acting strange), my guess is that the chance you will need one is very small, and if you did it would occur around sleep. or possibly heavy exercise. and i also figure the necessity of a glucagon kit goes up when 911 becomes a slower option – so i bring a kit camping or if traveling to rural area. other than that, it is at home, in the same reliable place so people would know where to find it. and i mean, if it happens at home, thought it might feel like an eternity as a parent, as long as you know where to find it, i really think the difference between getting it in 5 seconds on the nightstand table and 30 seconds in a different part of the house is really not much of a difference.

    also, since you have to reconstitute it, my thinking/hope a kit that is a few months’ expired is not a big issue.

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