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Feeling let down.

Discussion in 'Insulin Pump Forum' started by Overit, Jun 23, 2016.

  1. Overit

    Overit Type 1 · Newbie

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    I've been on a pump for a year, I wasn't giving a choice as it was one off the shelf as I lost hypo awareness and had two fits in a month. They ran my bloods at between 9-10 for 6 months to avoid these hypos before hand (under the nurses advice) I'm on animals vibe.

    Since being on the pump my DSN nurse went off sick, as they lowered my blood sugars too quickly and I ended up with retinopathy in both eyes (since had endless laser sessions and two operations, still under a consultant monthly.) as a result I lost my business and income. I had an appointment a week after I lost my vision as the blood was so thick in my eyes it was like black clouds which moved, I found it impossible to do simple things like test my blood sugars and bolus on my pump. I feel really let down as I understand my pump has a voice activated bolus feature I was never told about in my meeting. So I would have my blood sugars tested in the morning at 6am by my husband and he would give me my breakfast and bolus for me, then I had to wait until he got home at 6pm before I could have my blood sugars retested and have a meal again. To be honest it was 4 months of hell! Luckily my sight is a lot better than it was.

    That has annoyed me but I seen my consultant and a trainee last week my 2nd appointment since going onto the pump and I was just told you need to lower your average and I have been given no advice!

    I run high low and everything in between,I believe my basal and carb ration are wrong. But I have no idea on how to correct these. I'm looking for advice really! My pump settings are the same as the day I received my pump, my bloods seem to have no patten I can see?? My Trainee DSN nurse doesn't have much experience with pumps, I phoned and asked about CGM and was point blankly told no.. I can't afford to self fund now as as I said I lost my business after I lost my sight!

    It's all getting me done and now feeling so fed up and I don't know which way to turn!
     
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  2. catapillar

    catapillar Type 1 · Well-Known Member

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  3. Overit

    Overit Type 1 · Newbie

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    Thank you for the recommendation.
     
  4. donnellysdogs

    donnellysdogs Type 1 · Master

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    I would speak to the pump companyand ask if they have a rep in your area that could offer some training.
    Explain as you have done here.
    I know of one lady that had a rep visit her.. Accuchek Rep...
     
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  5. Jaylee

    Jaylee Type 1 · Moderator
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  6. donnellysdogs

    donnellysdogs Type 1 · Master

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    I did pump and had great help from my pump manufacturee..
     
  7. azure

    azure Type 1 · Expert

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    I can definitely understand why you're feeling let down. That sounds an awful time that you've had : (

    My first thought is could you change hospitals? My hospital has a 'pump team' and pump clinics. I've found them very good.

    My second thought is that in the meantime you need to do a basal test to get your basal right (the foundation of good control) and then gradually take a look at your ratios. Hopefully that way you can smooth out your control. It won't necessarily be quick because if a number of things are 'off', it may take a while to tweak them, but you should see an improvement.
     
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  8. himtoo

    himtoo Type 1 · Well-Known Member
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    agree with the basal testing

    here is a link to the basics of basal testing. http://www.salforddiabetescare.co.uk/index2.php?nav_id=1007

    as a general rule I tend to test my blood sugar about 9-10 times a day
    and I do basal testing at night about every 4-6 weeks to ensure that my basal rates are still correct.

    do try and take things 1 day at a time - and there is lots of support here too !!
     
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  9. Juicyj

    Juicyj Type 1 · Expert
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    Can you also see if your trust holds 'pump refresher' sessions, I am with Worcs and they do them once a year, also recommend reading Pumping Insulin, which is available on Amazon.

    As @himtoo has said take each day at a time, small steps and please message on here if you need support ;)
     
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  10. Snapsy

    Snapsy Type 1 · Well-Known Member

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    @Overit what a horrid experience - I'm sorry to hear of your pump problems. I agree with the above advice to contact the pump company directly so you can speak to a rep. Take care.
     
  11. azure

    azure Type 1 · Expert

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    @Overit Just wanted to add that obviously there are certain times when it's not wise to basal test eg pregnancy, as one example, because you'll be missing food.
    .
    Another, less 'scientific' way is simply to aim at getting control and not worry so much about whether you're adjusting the basal or bolus as long as you get sugars in range. You can do this a meal at a time by eating the same meal at the same time for a few days and testing (exactly the same meal). You can also set an alarm to get up in the night and test to see how your basal is covering you at night. That's a simple way to improve control.
     
  12. noblehead

    noblehead Type 1 · Guru
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    Some great replies.

    @Overit, as you have Diabetic Retinopathy you have to aware that sudden improvements in diabetes control can make the condition worse so improvement should always be made over a longer period of time, your consultant should be aware of this and I would advise you to speak with them and your Ophthalmologist and seek their guidance on this matter.
     
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  13. Overit

    Overit Type 1 · Newbie

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    Thank you all for your repays I took the first step first thing this morning, and spoke to another hospital with a DSN nurse who specialises in pumps, she arranged for my notes to be transferred to her hospital and set up a meeting with her and a consultant at 12! Tomorrow :)
    She called me back at 6.20 tonight and She said she had looked through my notes and that she will loan me some CGM equipment for a month or two to get my basal right, and has scheduled telephone appointments twice a week to discuss readings! I cannot believe the difference in two teams it does mean traveling 24 miles but I will travel 100 if I needed too at least it's getting seen too!
     
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  14. Mrs Vimes

    Mrs Vimes Type 1 · Well-Known Member

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    Think like a pancreas by Gary Scheiner may help. God love you, you must be so frustrated by all of this. Basal testing is the first thing I'd do to be honest.
    I play with my animas vibe all the time responding to dawn phenomenon and mental out of the nowhere insulin resistance. If you end up reducing your insulin and gaining tighter control you know yourself you will have to do it slower.
    Then to work out the bolus for a certain meal, I may eat the same meal a couple of times and test to find out the correct bolus.
    If you have to wait all day for your partner to come home wouldn't you be entitled to some sort of support? Sorry if it's a daft question.
     
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