So, as some of you may know, I have been dithering over the ‘to pump or not to pump’ question for quite some time now (read – if i’d made a decision I’d have one by now!) So, in an attempt to answer my last few questions, and confirm my place on the waiting list, I present to you my issue.
Having had multiple discussions with my DSN about the process of starting a pump, I have been told over and over again how much work it is and that you have to be prepared to put in the effort. So, looking for opinions of those who have been through it, how much work are we talking here? I take on board that it’s a re-education process, but I already do carbohydrate counting, I’m going on a DAFNE course in August, I do MDI, I (almost always) test multiple times a day. I mean we are required to deal with diabetes and it’s impact on our life every day, so am I underestimating it or can I go with my instincts here and assume I’ll be more than capable of coping?!
Sounds to me like you’re more than ready for it – the work generally is no harder than injecting.
The only new bit is sorting out your basal rate that can be changed from hour to hour. The more you put into it (fasting BGs over 6 or 8 hours at a time to establish the levels) – the more you get out of it (better baselines.)
I’d say the work is no harder, but I have found there’s much more of it. I test far more than I did (was doing 5-6 a day, now more like 8-9 a day), and I have found I’m far more sensitive to outside changes that were previously masked by the sledgehammer effect of Lantus (stress, hormones, illness, tidetimes etc) – hence there’s more work to keep things steady.
But as @stephen says, the more you put in, the more you get out. Carb counting has to be even more precise in my experience (ydmv!), allowing for even gentle exercise (wandering round the shops) has to be catered for in a way never before required, but once you know what your needs are and when, you’ll be perfectly able to cope.
I found starting a pump a bit like starting MDI for the first time – I had to learn a lot of new things; like using temporary basals – I found that a 50% lowering of basal levels for two hours worked really well for hard exercise (as always I needed to find this out through trial and error) and that pasta is best server with a dual wave bolus. But saying that I didn’t have to learn all the basic diabetes stuff again, so it took me about 2 months to get really good on the pump.
I think your instincts are right. It is extra effort because you’re moving from something you’re familiar with, to something that’s new, so you’ve a lot to learn. The basics don’t change, but there is a lot of trial and error and testing to get settled. I think it took me about 3 months from starting on the pump to being as comfortable as I was on MDI – eg I was back on autopilot rather than thinking about things.
I’ve tested more since I’ve had a pump, I think mostly because there is a real benefit in doing so – I have so much flexibility with the pump to adjust my basal rates, get my carb ratios right etc that the extra data I get from testing allows me to make changes and get better results.
So, it is a change and all change requires effort, but it’s not that hard. It just requires a bit of extra time and energy while you get it up and running. And the more effort you put in at the start – doing the research by reading Pumping Insulin, basal testing to get your levels right etc – the quicker it all settles down. Where I’ve seen people hate pumps is where they’ve gone into it thinking a pump will change their lives all by itself with no extra effort from them, and the reality has been incredibly disappointing – my pump has strong views on this – https://www.shootuporputup.co.uk/2010/10/from-one-pump-to-another/
On my experience I think your instincts are right too. We were told over and over about how hard work it would be and how you need trained well and must have done DAFNE etc before getting a pump. It’s my son who has type 1 and has a pump. He got it just after turning 17, a year ago.
As he was too young for DAFNE he got one to one with a dietician who taught him DAFNE principles. His 1:8 ratios were changed to 1:10, he was to stop counting veg and other stuff he would normally count in to his cho total and all in all DAFNE principles made him high and ill! Absolute waste of NHS money when he could carb count and had good control already. His pump training consisted of going through the quick start guide with the DSN and we were left feeling is that it? First impression was this so called ‘complicated device’ was not that complicated, we thought there must be more to it!? Marc put his all in to making MDI work for him, but it never really did, it could be soul destroying when you try so hard but still get silly numbers, highs or hypos appearing from no where! So although there is definitely a transition period when you start a pump, and you feel knackered with all the testing required to set basals and levels aren’t great for a while, it is so worth it. As levels start to settle down and you are not testing all the time you really see the benefit of the pump. Marc levels are so much better since pumping. Most days he will normally not go over 10 mmols when as before most days he would go over 10! If he gets a high or hypo now it’s easier to understand where it came from and so easy to correct.
I know everyone is different and the change to a pump can be frustrating for some, (I have heard many people say they had days they wanted to throw the pump out the window at the start) it can take a while to set your basals but from day 1 Marc has not looked back. He feels much better and has more energy, he feels more normal and life is more flexible. I say go for it, if you don’t like it and it’s not right for you, you can always go back to MDI after giving it a good go first though! I think everyone should try a pump so they can make an informed decision on the treatment they prefer.
Well I am officially on the waiting list for one – although apparently no one knows what’s happening with funding at the moment, so who know what’s going to happen there! I’m pretty sure from everything you’ve all said that it would be worth trying it at least.
Also @aileen, just wondering here but did Marc attend a youth day thing in glasgow a while ago? I’m just wondering if I’ve met him before – and possible you too (Scottish Exec time travelling diabetes thing?!) Anyway – I am also planning to attend the thing on Tuesday, I don’t really feel like waiting two years for a pump!
Hi Carrie, yes he did! It’s a small world! Did you say hi to him at the time travel thing, if so I remember you? He was going to come on Tuesday, but has supported study at school which he missed last week so can’t miss it again really. Martyn (who was at the youth day) is coming though. What clinic do you attend? Think there will be quite a bit about pumps on Tue, so glad you can come : ) Great news you have decided to give a pump a try. My group (iPAG) are campaigning for better access to pumps in Scotland.