Wednesday, 24 August 2011

The Big One - To Pump Or Not To Pump

So I now get to the biggest question of my recent delve into the online community.  

Firstly a bit of background for my non-local readers - hello by the way, I still love the fact I'm discussing something very personal to me with people from around the world when for the last 30 years I've not really discussed it with anyone outside my very close family. And, I even know some of your 'real' names. - Anyway as I was saying; funding for pumps in the UK is very much down to luck. Firstly you need to live in an area (Local Health Authority) that provides pumps and then you need a Consultant, or Endo, that agrees with your justification for having one. As ongoing costs are free to the user (if NHS approved) this cost is significant. Just like the rest of the world, money is in short supply at the moment, so everything is short-term rather than appreciating saved costs from ongoing care etc. I am extremely fortunate to live in a LHA that provides pumps and indications so far are that the Endo will support my request, if I make one.  So the decision for me is a lot simpler than for a lot of the DOC and I must be thankful for that.
I really sympathise for those less fortunate where the battle for funding/supply is constant, but, this is my story so thankfully, that’s not part of my challenge.

However, the decision to make is still a big one. For me, pumps seem to have been around for a long time developing from the size and convenience of bricks to something a lot more discreet.  I'm going to try and break it down into good and bad points.  However, I'm certain the end decision will be made by the heart rather than the head.

I'll start with the good bits (the pros):

  • Better control - For everyone selling the pump concept, and yes I'll include a significant chunk of the DOC here, I'm told frequently that A1cs improve dramatically and without fail. I can believe testimony but is this because of the pump or because of the amount of control needed to ensure the pumps 'works'?If I do as much testing and carb counting as is required on the pump but without the pump can I achieve similarly fantastic results????
  • Public dosage - The biggest problem I have with MDI is the publicness of shooting up.  Pumping would give the chance to subtly administer my dose without the need to hunch shoulders or visit the bathroom. 
  • Closer to natural - there's no escaping that a continual supply of bolus is a lot closer to the non-Ds norm than basal once a day with boosts whenever I eat.  This has to be better for the body, or that might just be my flawed logic.
  • Less injections - I'll admit the contraption for inserting the needle looks a little scary but it has to be better than injecting at least four times a day. Every day.  My skin wants a rest but I guess I've got the wrong 'thing' for that to be able to happen. 
  • CGM - Although I can't get funding for a permanent CGM, the local clinic loans them out frequently to pump users and this is a big draw. If CGM was available to my current regime the decision would be even more obvious to me. 
  • Tech - I'll admit to being a gadget freak so having another toy to play with does excite me a little. Sorry.  
  • Long-term complications – Again I’m fortunate. After 32 years of not perfect control I still have all my limbs and eyesight.  By changing to a pump and it’s ‘better control’ do my chances of maintaining my toe count improve?

So what in my head is stopping me from signing up straight away (the cons):

  • Always there - This is the biggie. For me multiple injections means I cam sometimes leave the house and just take myself. I can go out relatively clutter free. On a good day I just need my pen. If I'm being vigilant I'll also grab some sweets and if really, really conscientious I'll also take a testing kit.  That's it. Lightweight and disability free for a few hours. Going on holiday I have two pens plus a spare, a testing kit, some needles and spare insulin.  Now compare this with the swag needed by a pumper.  I’ve seen varying amounts quoted but the minimum is at least double of what I take currently.  For me double-kit means double the amount to forget also.
  • Amount of kit that fails - to test my pen I do an air shot of half a unit until I see liquid. Inject. Done.  No air bubbles and I know that if I dial 8 units and feel the plunger go down I can be pretty confident I've delivered 8 units.  Tech goes wrong, and sometimes it won’t do what I tell it. If it’s a pump that fails the consequences take a while to be discovered and then resolved.  And a total pump failure means a whole regime change for 24 hours while waiting for a replacement. 
  • Compulsory testing – i.e. if I want a day ‘off’ on MDI I can check my fasting BG in a morning and do normal carb counting and dosage adjustment through the day to get me to the end without feeling crap.  With pumping if I don’t do the testing how do I know everything is working OK and that I haven’t got a major problem?
  • Outside opinion – I know this is shallow and I know this will vary from person to person but for me it’s quite important.  I’m ‘Dave’. Not ‘Dave the diabetic’ or ‘Dave the bloke with the medical contraption permanently attached’. Just ‘Dave’.  I like that. I like being judged by my bad hair or poor dress sense rather than a pitying look.  I also like being just me for my family.  My wife is very, very dear to me and I don’t want to be the ‘freak with the wire’ that she’s been dumped on.  And do I want to give her a constant reminder that I’m faulty goods?  When I undress at night I’m left with my body with no attachments or signs - apart from pepperpot fingers and occasional bruises.  There’s nothing ‘unnatural’ attached or showing to get in the way of a good night’s sleep. This is a really complex part of the debate and is hard to summarise but for me D is part of me, not what defines me.  By jumping to the permanent attachment am I flipping that?
So that’s it, the main meal part of my debate.  I had hoped that getting all this down would make my decision easier but I’m not sure it does.  The DOC has plenty of examples of pumping working perfectly and finding a MDIer in the mix is often not easy.  However, does that mean it’s right for me?  I’ve had a few discussions recently with some good online friends who are very positive that pumping is the way forward, and I really value their input, but the big cons listed above are holding me back at the moment.

I’m not sure how many of you will have got to the end – I apologise for the length, my head needs to dump now and again – but as you have made it, I’d really, really appreciate your input/feedback and if you can answer any of my very vague questions then all the better!  My next Endo appointment is in two weeks so my head will probably have exploded by then.

Thanks for reading.

Dave

14 comments:

  1. Great post Dave. And you are right it is a complex and intensely personal decision. Factors that mean nothing to one person will weigh heavily on another. I think I was almost exactly in your position about a year ago (My Pump Problem and CGMS Envy: http://bit.ly/c3zPBD ). I've moved my position several times in the last 12 months. Quite where I am 'now' I guess I'll only find out at my annual review, which oddly enough I think is the day before yours!

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  2. Thanks Mike. I've just reread your post and can't argue with any of it. CGM + MDI is (I think) where I'd ideally like to be but that won't happen for LHA policy reasons which means I'm where I am now.

    I'm in Thurs 8th so we'll compare notes afterwards!

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  3. Hi Dave, great post and echos much of the debate in my own mind in recent months. My 5 year old son getting a pump in a few weeks & much as I know this will help control the large swings in blood sugars I know it is not the magic bullet. I do feel an impending sense of sadness that we only have a few weeks left of seeing him free of a device that ge will be attached to 24/7. I also worry about how quickly he could go high if there was a problem with the pump or canula. We do loads of daily tests so hat isn't an issue , it's more an emotional thing that he will look different on the outside. The CGM would be brill for you even if only borrowed for a fe days at a time. Would you have to take the Medtronic or would they offer the new Animad Vibe? I guess you may not have got that far in your thinking yet! Good luck whatever you decide. Louise.

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  4. Hi Lousie,
    Thank for reading, replying and RTing!
    The decision you've made is incredibly hard but for him it must be the right one as smoothing out the highs and lows can only be good for his future. The amount of testing you are doing means that highs will be spotted quickly enough anyway. I'm sure the device will just become normal for him just like injecting has already and in 30 years time he probably won't remember life without it. And...., everyone is different in some ways, he'll just be the one with a cool gadget attached. I know this goes against a lot of my negatives but in your position I think you've made the right decision - and if not, you can always switch back. :-)
    My clinic only supply the Paradigm but the wireless CGM I can borrow makes this an easy decision on choice.
    Thanks again and best of luck for the coming weeks.
    Dave

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  5. Hey Dave

    That is a great review on the pros and cons of using a pump.. Along with the other Mike, we are all in a similar position.

    Go forth and conquer or is it the better the devil you know scenario. I feel that I would regret not giving a pump a proper go if given the opportunity.

    I believe that the majority of experienced pumpers would be able to calm any fears or queries towards potential issues whilst pumping although as I read how you felt I could not help but agree with you.

    Anyhow, I hope you have all your concerns addressed and wish you the best come what may.

    Mike

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  6. Thanks Mike.

    Kind words and I am tempted to try it and then I know properly rather than trying to Excel my way to a decision.

    All the best with your decision.

    Dave

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  7. Great post Dave! I think you've summed up a pretty big decision for most people on MDI considering a pump really well.

    Looking forward to reading how you get on.

    Emma

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  8. Hi Emma.
    I'm pleased to know my concerns were shared by others. Still not sure what to do though.

    Thanks.

    Dave

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  9. great post! As a pumper myself I have to say the positives far, far outweigh the negatives. For the longest time I was against pumping but then realised my control would be better. Now I don't notice its there all the time, I have less stupid highs and I feel better in myself (not counting my recent health shenanigans!).

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  10. Hi Sam

    Thanks for the comments. I'm almost scared to give it a try as so many users say that once you've tried it, you'll not go back. I know that's a stupid reason but I'm trying to balance the argument at the moment!

    Thanks again

    Dave

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  11. I second what Sam said.

    Yes, once you try it you won't go back - but that's a pro, not a con :D

    My quality of life is 100 times better pumping than on MDI. But I've already told you that a million times :)

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  12. Thank you Emma for your, as always, unbiased opinion.

    I think the whole debate in my head has come down to: "If I do as much testing and carb counting as is required on the pump but without the pump can I achieve similarly fantastic results????"
    This weeks results suggest so but as everyone knows one week in D world is no guarantee of everything.

    Keep on trying, I'm sure I'll weaken eventually!

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  13. Great post, Dave! Reading it has actually come at a very convenient time for me too, as I am soon going to be tested for the Dawn Phenominon. If I have got it, as far as I know the only way to 'beat it' is to go on the pump. However, I'm not entirely sure that I'm struck on the idea.

    I know it will be good for my health in the long run (and I know that should be the most important thing) but as an 18 year old girl, I was never sure if I wanted one of those contraptions attached to me 24/7.

    Your post has made me think about things more broadly, so thank you! You're right, it is a massive, head-wrecking decision to even think about, but good luck! I have heard amazing things about the pump nevertheless :)

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  14. Thanks Daisy. Two weeks later and I'm no more convinced either way I'm afraid. I fully understand your concerns and especially when you're starting the next part of your life after school.

    Good luck with whichever way you go, although you're right that health has to be the primary driver.

    I look forward to hearing how you get on.

    Thanks,
    Dave

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