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No more pumping for now.

Discussion in 'Insulin Pump Forum' started by Spiker, Jun 7, 2015.

  1. Spiker

    Spiker Type 1 · Well-Known Member

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    Nearly 18 months since I first hooked up on saline and 14 months since I began using the pump in earnest, I have taken it off and boxed it up. I have an appointment tomorrow and next Thursday with my hospital team to review what to do next, but I just had to stop.

    No disrespect to everyone who has made the pump work for them, but it was not working for me. I would still recommend people to try it, since it does produce excellent results for many people.

    My main feeling is one of relief and overwhelming freedom. I feel like a huge weight has been lifted. I can walk around my own house naked for the first time in a year, go to the toilet without needing four hands. Nothing sticking into me. No more barriers to intimate relations. My girlfriend is relieved too and now admits the pump was always a problem in sex and even just in sleeping together. Trooper that she is, never mentioned it until now, but I could tell. And I am greatly relieved about work, having had a lousy experience of people at work treating me like a freak for having this semi hidden, but in the end obvious, medical device attached.

    With no pump to log all my data I am back on my phone all the time, and setting test reminders on my meter. This is odd after a year of the pump handling all of that in one place. I'm also doing manual calculations of IOB, which is somewhat haphazard. I knew I would miss IOB. I need to find an app or meter with a decent IOB function. Of course it will never be as safe and accurate as a pump's IOB, since the pump is the delivery system and never "forgets" to add a bolus to IOB.

    I am back on Lantus x2 doses, 10/14 split at 0000 and 0800. I can already see it doesn't handle my dawn rise and wakeup rise as well as the pump, which is to be expected. Maybe I will try x2 Levemir.

    For boring reasons I'm injecting Novorapid in pens rather than Humalog as I had in the pump. Just because I have stocks of it and no Humalog cartridges. I probably will get some because it looks like, as I suspected, Novorapid is less effective, lower carb ratio and correction ratio for me, than Humalog. And/or it's just the lower efficiency of MDI delivery vs CSCI (pumping). Humalog cartridges would eliminate one variable so probably a good idea. Even though I hate wasting insulin.

    One good result at my review a few weeks ago is the consultant approved me for Metformin. For years I've argued and been refused. This time I was pushing at an open door. Maybe the policy (at Guy's and St Thomas's) is changing. I will fill the scrip for that once my MDI regime has settled down again. I need to do basal testing this week, then confirm my ratios. Same old same old eh.

    I'm actually enjoying seeing my logging data and analysis in real time on a phone app. While it was convenient to have all my data entered in one place on the pump, I had to upload and use a PC to actually see the data. So that's an improvement. It was infuriating that I would enter data into the Vibe and then couldn't just scroll back to see data I had entered.

    I am not sure if this is a one month pump holiday, or if it's Goodbye. I will decide that after talking to the hospital team.

    The pump failed to stop my long slide in HBa1c that has been going on for a good 5 years now. I'm not blaming the pump, it's a powerful tool. I blame the operator for the lack of results. But, given the lack of results, a pump is a massive inconvenience and pain in the bum (often literally), if it's not delivering a clear benefit. Which for me it wasn't.

    The one thing I would say against the pump, which has to be balanced against the clear benefits many people get, is the much lower overall system reliability compared to pens (MDI). There is very little go wrong with MDI. Component failures are very rare, and low impact. Pump system failures are far more common and much higher impact. Harder to detect, harder to troubleshoot and resolve. There are just so many more components in the system (end to end) than in MDI, and each of the components is more complex and more likely to fail. It's basic systems engineering, it's predictable that failure will be more common.

    And I think it was the psychological toll of the constant fear and repeated incidence of system failure, the stress of trying to understand which component had failed and how to prevent it, that in the end has worn me down. My skin is a battlefield of scars but my mind feels similar. Taking the pump off feels like a massive relief from all that stress and worry. For now at least.
     
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  2. Lesleywo

    Lesleywo LADA · Well-Known Member

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    Good for you Spiker .... at the end of the day only you know what's right for you. Sometimes you don't know how much something is causing you stress (for want of a better word) until the cause is removed and you feel like a weight has been lifted from your shoulders. Quite liberating in fact! Best Wishes :)
     
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  3. Robinredbreast

    Robinredbreast Type 1 · Oracle

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    Good luck Spiker, the pump is a great device and helps so many Type 1's with better and stable control
    ( from what I have read), but it doesn't seem to work for everyone. Give up, give in or give everything and I think you have done that. All the best.

    RRB
     
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  4. Totto

    Totto Type 2 · Well-Known Member

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    Hi Spiker, it does sound as a relief to be rid of the pump. Good luck with bg.

    I, as a T2 obviously have no experience of pumping medicine, apart from the morphine pump my husband was on in the last stages of cancer, but really Spiker, in what way did your insulin pump hinder you from walking around naked in the house? It wasn't tied to a piece furniture or permanently stuck a shirt, was it? I don't get the four hands needed when on the loo because of the pump so maybe I should stop asking questions.
     
  5. yingtong

    yingtong Type 1 · Well-Known Member

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    Hi Spiker,I salute your courage and wish you good luck back on MDI.
     
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  6. masonbason63

    masonbason63 Type 1 · Well-Known Member

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    Very articulate description as to how you've done your best I really understand your feelings on this, a pump is a commitment that doesn't always suit everyone, I know you've had your problems and you can't say you've tried, as you say it could just be a pump break or permanent break. I've been pumping 15yrs but since going on the insight I've struggled that much withh it I've felt like chucking the flipping thing out the blooming window.

    I hope you find control on your new regime and get back to some stability you require,
    Good luck my friend.
     
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  7. Omnipod

    Omnipod Type 1 · Well-Known Member

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    I too came off the pump. Even tho I was on a patch pump and had no tubes, I still had a patch to hide.
    After wearing a pump for a period of about 5 years in total, I now have the most stable blood glucose and the lowest HBA1C since being diagnosed.
    This is down to the Freestyle Libre. I can see what my bloods are doing anytime.
    I think Tressiba has also been a huge factor in gaining a stable blood glucose and it is the only insulin that has helped me with dawn phenomenon.

    Wearing a pump is hard work because you have to monitor it constantly and you still have to keep checking your bloods and adjusting it.

    I honestly believe that the NHS will see savings in diabetic long term care when they make the freestyle libre available on the nhs.

    Since I have been on the FL, I have not seen a dr. My HBA1c is near normal. Complications are reduced and I am in control of my diabetes.
    Even my diabetes clinic have handed me back to my GP for my diabetic appointments
    I cannot even remember when I have had a box of test strips prescribed on the NHS. (I do have a box of strips but would only use them in an emergency)
     
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  8. phoenix

    phoenix Type 1 · Expert

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    If you aren't happy and it's not working in the way you wanted then it's not going to be right for you.
    I can't comment on anything other than my own pump.
    It's a mini med. It's pretty old technology even down to the screen changed by rubbery Sinclair type buttons. My new model is in essence the same as my 7 year old one which wasn't new then.
    It simply does what I want it to do ie vary, and that is mainly reduce, the amount of insulin going in when I'm more active. I can't do that with a long term insulin. All else I could probably do with injections .
    There have been no regular component failures I have a suspicion that only having a small reservoir to fill (180u max) means less likelihood of bubbles. Sets only cause a problem if I leave them in too long (person not system failure) or if I put them on my stomach where the adhesive causes a reaction (a nuisance because it restricts places I can use) In all the time I've had it just one tube has pulled out of the cannula causing a brief period of no insulin.
    It's a good thing that it doesn't often cause problems because the alarm is so feeble that I often don't hear it .

    I don't make use of any of it's data since I haven't the means to download it to a computer and it's not a full record in any case (eg I never put between meals readings in unless I'm going to need to correct )

    Basically, it works for me because it solves my problem. It was a fairly straightforward problem.
    Those physical marks are I agree, very real and take a while to go (suspect longer as you get older) I've been with the same man for 2/3 of my life, we're beyond the point that these things take on a big importance .
    I have never needed four hands to go to the loo. The only scenario, I can think of is when naked and no bit of clothing to attach it to. And the time when I am without clothes for longest is swimming before bed in the summer.(we have no near neighbours) My pump isn't waterproof so I just take it off. The last thing I need is more insulin whilst swimming.

    I think some of your problems are too important to you and your lifestyle to overcome. You really have to be happy about wearing something all day, everyday .I forget mine is there most of the time, you wouldn't be able to do that.
     
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  9. Spiker

    Spiker Type 1 · Well-Known Member

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    @Omnipod like you there is absolutely no doubt, from the evidence, that CGM has a huge positive effect on my HBa1c and stability of blood sugar. Unfortunately I can't afford it. I look forward to the day when the NHS will find more widespread CGM. I would trade pump funding for CGM funding in an instant. But I realise it's not that simple. CGM costs a lot more than a pump.

    When I can afford it I will be back on CGM.
     
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  10. tim2000s

    tim2000s Type 1 · Expert
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    Spiker, I'm not sure it does. The numbers I have seen quoted for a pump are in the order of £7000, which you consider is a four year investment.

    With the Dexcom costs at around £5600 for four years.

    I think the CGM costs for the majority would deliver better results even with MDI and allow nearly 50% more users for the funding.
     
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  11. noblehead

    noblehead Type 1 · Guru
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    @Spiker, although much depends upon if your hospital (or those in the close proximity) offers this pump as a choice but I'm wondering if a patch-pump like the Omnipod would be a better option for you.

    As you know its a tubeless pump so doesn't get in the way for those intimate moments and means you don't have to disconnect for the everyday tasks like having a bath or a shower, the pods are really discreet and are not really visible under clothing so for someone like you who is conscious of wearing a pump it would be ideal, you only have to have the PDM close to you when bolusing and once your basal rates are set you can wonder around without the PDM so don't have to have it clipped to a belt or attached to clothing as you do with a tubed pump, admittedly there are probably better pumps on offer but for the reasons that you've mentioned in your opening post I do think the Omnipod could be a suitable option.
     
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  12. candi-girl

    candi-girl Type 1 · Well-Known Member

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    Have been on mine almost 10 years and have taken it off the past few week. Reading this is just how I feel. I am having the rise overnight on my current 2 doses of levemir but i am working on it and things are getting better. I just feel FREE! and with the pens I know the insulin is getting in. No bubbles, sore sites, blood in tubing etc....
     
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  13. candi-girl

    candi-girl Type 1 · Well-Known Member

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    i'd rather have cgm than a pump, can't afford it tho. i would get a libre but obviously none available :(
     
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  14. Brunneria

    Brunneria Other · Moderator
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    If it gives you that sense of liberation, then it's clearly the best option for you t the moment.

    You're allowed to change your mind again in the future, if circs change, aren't you? ;)
     
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  15. MushyPeaBrain

    MushyPeaBrain Type 1 · Well-Known Member

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    @Spiker thank you for writing this detailed post and well done for being brave enough to stop. I would like to take a pump holiday as I am starting to get site fatigue and am tired fo the hard work with the pump. However I'm scared of MDI as my control has never been better since pumping. How did you make the crossover? Did you take the pump off when you started your Lantus etc?

    @Omnipod I didn't realise you had also come off the pump. I have the libre and have been wondering about a pump break. What made you choose Tressiba? Would they let me try this during a pump vacation? I can't go back to Levemir as it was discovered I was allergic just before starting the pump.
     
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  16. Spiker

    Spiker Type 1 · Well-Known Member

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    @MushyPeaBrain I just took off yet another cannula patch that wasn't delivering properly and, instead of replacing it, I took the pump off. I took a partial Lantus dose based on the number of hours until the next scheduled full basal dose (eg it was 10/24 hrs away from my midnight dose so I took 10/24ths of my Lantus TDD). After that I injected normally. The first day or two was a bit wobbly but nothing serious. I'm doing basal tests now and I will do ratio tests after that. It was basically no big deal. But I DO understand about the fear of going back to MDI. I had been grappling with that fear for weeks even after making a notional "decision" to stop. In the end it was a [series] of component failures (patch, tube, and possibly reservoir) that clinched it. So I didn't so much decide to stop, as give up in frustration. Nothing to be proud of, but that's how it was.
     
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    #16 Spiker, Jun 8, 2015 at 1:14 PM
    Last edited by a moderator: Jun 8, 2015
  17. catherinecherub

    catherinecherub · Guest

    Nothing to be ashamed of either @Spiker.
     
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  18. Robinredbreast

    Robinredbreast Type 1 · Oracle

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    Sometimes it's like that final straw that broke the camels back and certainly not an easy decision to make, even with all the problems that you have been having. Sometimes a battle may be lost, but not the war and I admire you diligence throughout. Nothing to be proud of? I don't see that, I admire all type 1's on a pump, as I am still on injections.

    All the best spiker :)
     
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  19. -Artemis-

    -Artemis- Type 1 · Well-Known Member

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    I'm sorry to hear the pump didn't work for you @Spiker -- but happy you feel happier with it off... And as you say, it doesn't have to be forever; you've options now -- which is also a positive :)

    Good luck going forwards... I have my 1st pump tomorrow...! Will be interesting...
     
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  20. Spiker

    Spiker Type 1 · Well-Known Member

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    Good luck with your pump Artemis.
     
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