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I might not be eligible for the pump anymore..

Discussion in 'Parents of Children with Type 1' started by emm142, Mar 28, 2012.

  1. emm142

    emm142 Approved members

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    I haven't spoken to my D team about this yet, but it looks like come July (when my warranty ends after being on the pump for 4 years) I may not be eligible to pump anymore.

    According to the guidelines over here: "Insulin pump therapy should only be continued in adults and children 12 years and over if there has been a sustained improvement in the control of their blood glucose levels. This should be shown by a decrease in the person's HbA1c levels or by the person having fewer hypoglycaemic episodes. Such goals should be set by the doctor through discussion with the person or their carer."

    I'm not sure that there has been a sustained improvement in my BG levels, because around 2 years into D things got a LOT more difficult to 'control'. I don't have the records of my a1Cs here, but I can pretty much remember what they have been:

    Feb '08 (before pump): 7.5
    July '08 (before pump): 7.9
    December '08: 6.4
    July '09: 6.5
    December '09: 6.7
    July '10: 7.1
    December '10: 7.4
    July '11: 7.3
    December '11: 7.7

    Whether or not those are the exact numbers, it was basically that pattern.. They went down for a bit, then things went harder to control, my TDD went up, I became ketone prone and lost hypo-awareness. Although I never honeymooned, I think that that was the point where my body lost even more endogenous insulin production. In the breaks I've had from pumping my BGs are INSANE, and I believe that if I went back to MDI it would be incredibly hard to keep my a1C below 8.

    This post is kind of pointless, really just wanted to vent at the fact that it's all going to be decided by how much my numbers have improved when actually my numbers now are similar to pre-pump, but maintaining similar numbers when so many factors have become more difficult actually means that the pump has been successful, KWIM?
     
  2. Lisa - Aidan's mom

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    Hope you can things sorted out and it all works out to your benefit!!
     
  3. Tamara Gamble

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    Your doctor will work with you to help support the continued use of your pump as long as you are doing all of your bg testing and your dosing. You are not in this alone. I remember one of our CDE's telling me that her insulin was three times what it is now in response to her hormones at your age. Take the team approach. Perhaps you've been doing this a long time and alone. Start sending those numbers in weekly and let the office help you. Sometimes we all need a little encouragement, and support when things get tough. Start now, keep your records, they will want to see them. Good luck!
     
  4. betty6333

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    that is terrible!
     
  5. StillMamamia

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    Oh good grief!! And here am I thinking the pump was just another way to deliver insulin, and not as a gauge of how well one is controlled.:rolleyes:

    Who comes up with these rules anyway? I hope your D team can help you with this, Emma. What total nonsense.
     
  6. DsMom

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    I'm so sorry, Emma...that really stinks.:( So, if you do have to go off the pump and your A1c rises...are you then eligible again? Seems ridiculous that you'd have to go through that.

    Hope things work out somehow and you don't have to lose your pump.
     
  7. hawkeyegirl

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    Ugh, Emma. I'm sorry.

    If they find that you're not eligible anymore, would you be allowed to keep your current pump? I bet the folks on this board could get you supplies if you had a pump to use with them?
     
  8. blufickle

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    That is really horrible Emma. I hope things will work out for you and you are able to keep the pump.

    However I can tell you that ONE can keep their A1c's below 8 with injecting insulin. I don't use the pump, I use the syringe. My highest A1c has been a 7.6 and my lowest a 5.3.
     
  9. emm142

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    Thanks everyone! Like I said, this might not actually be a problem at all, I'm just trying how to phrase an email to my D team in the best possible way. :p And yeah, I should be able to keep my current pump, the biggest problem would be when it breaks and can't be replaced.

    I know it's definitely possible to have a low a1C whilst injecting, I'm just not sure how possible it would be for me. My basal needs vary a LOT throughout the day and night, I have hypo unawareness and even on a pump I can't get my a1C below 7, despite testing 10-12 times per day, wearing CGMS and being really proactive with bolusing and setting temp basals as necessary. Sometimes I wonder if I'm just doing it wrong. :confused:
     
  10. mmgirls

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    You have allot going on right now in your life. And I think that if you did not have your pump that your A1C would most likely be higher.

    You need to advocate for yourself, buckle down and try for better numbers in the hopes of keeping your pump and supplies. The fact that you have been able to keep your A1c under 8.0 as a teenager and now a college student I think is a testament to not only you but the use of an insulin pump.

    Talk to your team, it may not be a problem at all, well i hope so.
     
  11. betty6333

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    Personally if my sons a1cs were that awesome when he is your age, I would be thrilled.
    Diabetes is not easy and I would be thankful for a great job done.
     
  12. sarahspins

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    You are really doing phenomenally well... especially considering all the changes you've had in the past year. Don't let a slight increase in your A1C have you thinking otherwise - you are doing an amazing job.
     
  13. Joretta

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    Remember statics on improvement is only as good as how they are presented. Your control your avg a1c, and the events that challenge t1 are all variables that if presented properly can make all positive, after all when you had trouble how do you know mid control would have been any better. Doctors know ways to present for coverage if they want you to have it.
     
  14. Sarah Maddie's Mom

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    Emma, before you or anyone here begins to frame the issue as something you need to "buckle" down on, or whatever, speak to your endo about how they think the new policy will actually be implemented and who has the final say.

    You're exceptionally diligent in your care, don't for a moment let this make you doubt that. :cwds:
     
  15. emm142

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    Thanks again everyone. I'm going to try not to wory until I can get information from then on exactly what it means.

    Thanks Sarah - it's not actually a new policy, this is just the first time I will need a new pump since I am going on 4 years pumping.
     
  16. selketine

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    What is "sustained improvement"? Eventually you can only improve so much and your a1c just won't go any lower safely. I know that isn't your issue but the guideline seems odd and would lead to pumps being taken away from those with the best a1c's as well.

    This seems like the the same catch that people run into trying to get a cgms if they've already had one and the insurance wants to see numerous lows before approving it. But if you're already using it....

    I also think that some people (or people at some times in their life) have harder to control numbers than other people - or at other times. Maybe this is due to hormones, their body chemistry, or whatever.

    Report back when you find out.
     
  17. emm142

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    I don't think it means that you have to keep improving, rather that you have to improve and stay there, whereas I improved for a bit and then my a1C went back to where it had been.

    Beginning to make a list of all the things which have made my D harder to 'control' in the period where my a1C climbed:
    • Hypo unawareness
    • Hypothyroidism, hyperthyroidism and the corresponding med changes
    • Clinical depression
    • Multiple major life changes which made my schedule less predictable
    • Loss of endogenous insulin production (and a corresponding rise in TDD)

    I'll be sure to let you know whether that is enough to explain the rise in a1C! I'm thinking about switching D clinics from the one I go to at home in Essex to one in Cambridge (where I live most of the time and go to university) which is apparently very proactive on pumps, has an awesome reputation and might know more about loopholes in the NHS rules.
     
  18. Helenmomofsporty13yearold

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    Try not to worry until you speak to your team or someone from the government dept. that overseas pump coverage. Here in Ontario, those rules apply to very poor A1C's that are a result of folks not putting any effort into managing their diabetes. You are very diligently managing your d. Your A1C's are great for a teen who is very insulin-sensitive and hypo-unaware. Not many teens have A1C's in the 7's.
     
  19. kiwiliz

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    Surely you will be eligible because you are in full time education. It would be wrong for them to withdraw funding when you have such wonderful control. If for some reason they don't, because everyone gets a new pump every 4 years, there are sure to be some used ones available. Ours failed after 6 years so you might even get two more years from the one you have. If you do get a new one, put your current one aside as a back up. I hope the new team are really supportive. :)
     
  20. emm142

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    Just wanted to provide an update.

    I spoke to my dietician (also the person in charge of my pumping stuff - I know it's weird but whatever, she's lovely) and she seems to think they will be able to get me a new pump. Apparently they submit an application as soon as my pump goes out of warranty, but usually the approval is conditional on the previous pump being broken. So basically, I will (hopefully) be approved for a new pump but I won't actually be able to get it until my current one is broken. That's okay - could be worse! I just hope the reapplication goes without a hitch. And sort of hope that my pump breaks quickly so I can get the Veo, LOL.
     

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