Why can't I get a pump?!

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sophieee

sophieee

Well-Known Member
Relationship to Diabetes
Type 1
My blood sugars run consistently high, and as I have Chronic Fatigue Syndrome/M.E, which sometimes leaves me on the sofa all day with no energy to move, I'm not alway able to do my insulin. I DON'T understand why I can't get a pump?! As if I did, my mum could do my insulin for me, just by pressing a button, and all I'd have to do is change it every 3 days. I understand what the doctors say about having to have some understanding of carb counting and things, but surely me getting some insulin, all the time, is better than no insulin most of the time? I don't need to do carb counting to do my novorapid? So surely its the same principle? And I test quite often and I'd be willing to do MORE tests if I have to! GRR so frustrating!
 
Hi hun, I'm having trouble getting a pump too.

I don't need to do carb counting to do my novorapid? So surely its the same principle?
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do you mean that you DO need to do carb counting with novorapid? Because if you mean what you say, well...you DO need to carb count with novorapid. It's very important to get your levels under control.

A pump is a lot of hard work, it won't mean just leaving it until 3 days is up you'll have to undergo a lot of training to understand how things work with it, and also understand how foods affect your blood sugar levels.

It's not a magic 'cure' the pump, I wish it was. If anything, to get started on a pump it will be like going back to the beginning and learning it all again.

Sorry if this sounds harsh, I'm sure others on here will be able to guide you better as I myself am still fighting with my clinic to get a pump too
 
Hi Sophieeee!

As sam says (and Im not sure if it is a typo maybe?) but you do need to carb count and accurately. But that is the beauty of the pump, if something adds up to 78gms for example, you program 7.8units. I am not sure from what you write if you realise that on the pump you still need to bolus.

There is a lot of work to be done to get a pump. I am afraid I dont know much about chronic fatigue syndrome, but if you werent up to programming the buttons I guess there could be an issue with you having a continuous infusion of insulin running. Dont rule it out, but perhaps with some more research? I would appeal to a wider audience....pumps are huge in the USA, maybe post on an american site as well to see if anyone with ME has one and what works for them.

Time to get researching! Good luck with it all.
 
HI Sophie, check out this site: http://www.input.me.uk/ and see what you think of the advice given there. Salmonpuff is right, the pump does require quite a lot of work and your mum would be able to do a certain amount for you. I suspect that getting your levels under better control would also make you feel a lot better about things generally as high levels can really mess with your moods. Have a read of some of the threads in the pumping section to see what kinds of things people have encountered.
 
Hi Sophiee

Have you asked your Drs why you can't have a pump ?

In this area you have to go through a program to see if you are suited to the pump and it to you. That includes psychological evaluation and a carb counting course.

If you know why they are refusing then you have some chance of arguing your corner.
eg if they think your BMs are too high then isn't that one of the NICE criteria. If they think its commitment is there anything that you can do to show you do have commitment ?
 
Hi Sophie,
Using a pump can be hard work to begin with and you absolutely do need to understand how to carb count and work out your ratios for each meal. You dont just press a button to enter insulin - you have to tell the pump how many carbs your about to eat and how much correction or minus correction you need. Your team probably wont give you one until you show you can carb count etc - have you ever seen the dietician and been told how to carb count? It does seem strange that your using Novorapid and not carb counting. Do you think you would be interested in learning how to carb count etc? If you think its something you would be interested in learning then you need to tell your team and perhaps they will help and realise that you are showing commitment to having a pump. It would be irresponsible of your team to give you a pump at the moment as they havent taken the time to sort out the carbs etc with you.🙂Bev
 
Hi Sophieee

From the information you have given us about what you do, ie give novorapid but no carb counting because you don't have to, I am presuming you don't do many tests because you don't have to and your HbA1c is over 9.0, I think your team are letting you down big time.

To get any sort of control on MDI (multiple daily injections ie levemir or Lantus and novorapid at meals) you have to carb count and you have to do more tests than I imagine you have been told to do.

Your team should have taught you to carb count when they put you on MDI. You have to match the novorapid to the amount of carbs you eat. It is easy but you have to get your head around it first so appears hard in the beginning. Once you have mastered carb counting you absolutely most definitely qualify for a pump. If your team won't give you one, they are failing you once again. If they use the excuse of you can't carb count, your answer to that is that they are supposed to have taught you to carb count.

Take a look at the INPUT website you have been given the link to. The guy that runs that is remarkable. I know him personally and he is a really good guy and knows his stuff.

Good luck
 
salmonpuff said:
Hi hun, I'm having trouble getting a pump too.



do you mean that you DO need to do carb counting with novorapid? Because if you mean what you say, well...you DO need to carb count with novorapid. It's very important to get your levels under control.
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When I was first diagnosed 6 years ago, my doctor said to my family and I, that I have to take control of IT, not the other way round. So IT fitted into my life, instead of my life fitting around IT.
And no, I mean I DON'T do carb counting. But that's not to say I don't know how food affects my blood sugars, because I do, it comes with experience. What I mean to say, is if I'm doing 14 units of novorapid with my breakfast, what difference does it make if it's via injection or pump? I don't WANT it as a magic cure, I KNOW that's not what it is. But under the circumstances, that I have M.E aswell, and sometimes I CAN'T administer my own insulin, a pump would be the 'middle man' for my mum to get my insulin into me without actually having to give me my injection
 
Hi Sophieee, it sounds like you are having a tough time of it. I hope you get things sorted to make life easier for you and your family. I don't know a lot about ME so I think maybe you need to keep in touch with your care team too. Good luck with everything.
 
sophieee said:
When I was first diagnosed 6 years ago, my doctor said to my family and I, that I have to take control of IT, not the other way round. So IT fitted into my life, instead of my life fitting around IT.
And no, I mean I DON'T do carb counting. But that's not to say I don't know how food affects my blood sugars, because I do, it comes with experience. What I mean to say, is if I'm doing 14 units of novorapid with my breakfast, what difference does it make if it's via injection or pump? I don't WANT it as a magic cure, I KNOW that's not what it is. But under the circumstances, that I have M.E aswell, and sometimes I CAN'T administer my own insulin, a pump would be the 'middle man' for my mum to get my insulin into me without actually having to give me my injection
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Hi Sophie,
The reason the pump is so effective is because it is far more accurate than injections. When you inject - quite often the body doesnt absorb all you are injecting - for many reasons - but if you have been injecting for a long time you have 'lumpy sites' that stop the insulin from being absorbed etc. Also the very act of pulling the injection pen out can sometimes make you 'lose' some insulin - so your not really getting the 14 units every single time. If you are using a pump it is *so* precise that you can do units of 1/40th so you can give yourself 0.025 of a unit at a time - this means that if you make a small mistake with your calculations - it could be the difference between getting it right and having a fairly big hypo. I dont want to put you off having a pump as i do think you would benefit - but you really do have to be spot-on with your carb counting and your understanding of background insulin. For example, my son is on 8 different basal (background) rates throughout the day - we could never have done this on injections because you can only go down to half a unit which is useless for a growing boy! We need smaller increments than that. My sons hba1c has gone down from 9.6 on injections to 7.1 in 5 months of pumping. But this has taken a lot of hard work and calculations. I do hope you can ask your team about a pump and work with them to start carb counting.🙂Bev
 
SacredHeart said:
1/40th of a unit?! I didn't think it could be that precise? I'm duly impressed
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Hi SH,
Please remember my problems with maths! I *think* 0.025 is 1/40th - but I may be completely wrong - I am paranoid now! Anyone good at maths out there?:confused:😛Bev
 
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