Adults with pumps - genuine questions

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Not sure Bruce can change the cannulas, would never be sure he'd washed his paws and under his claws properly. Also dread to think what my little angel would do to me if he could adjust the controls 😱

The nurse is happy to visit to inject me on days where I can't manage, my issue is I've been ferociosouly independent all my life, I don't want to have to depend on people now. When I do it's not for me.

But having the consumables changed once a week isn't to much of an issue for me.

A daft question here, is Novorapid compatible with pumps or doesn't it matter which bolus you're on?

Plenty to ponder on. Hopefully will never need to make the decision, but much appreciate the facts.

Northerner, it's a shame he have such a postcode lottery, being where I'm located has always served me well in terms of finding the best healthcare. The level of care in the NHS has never been my issue, the harmonisation of the standard is the problem.

As we've covered elsewhere, splitting into regions is all well and good, delivering local control. That's where the problem also kicks in, priorities for different PCTs. If the NHS took a long term pragmatic look at conditions such as diabetes and made the right technologies, training and resources available to all diabetics then the return in the medium and long term will be considerable.

But they don't, they won't, they will pay all the lip service we want to listen too, but on the ground for many of us the level of service often hasn't changed, less still improved in the past 5 years.

My healthcare team are great, I'm so lucky, from GP to all consultants, but there have been battles I've taken on, that others won't and that is wrong, I shouldn't have to battle for what I have right to, and others should have the same offered to them.

The most significant diabetes care related factor for me was the repeat dispensing prescription serice - where I agree with my GP the next six months worth of repeats, take the full set to my chemist and then go and collect them on or around the 13th of each month.

For others I am sure there are many other changes and improvements they've seen - or I hope so.

Of course I'd like to see this online, so I can have a maximum number of x, y and z drugs prescribed over the next six months, then order them a week in advance online from my pharmacy, then I wouldn't end up with a spare box of needles or Novarapid every six weeks. That saving would be considerable for the NHS and to track all prescriptions electronically, well, surely it will pay for itself in countering fraud?

Sorry, off topic! 🙄
 
Thanks for all the discussion. I wasn't trying to find problems with pumps, to say they weren't as good as MDI, but I don't think people think that, just to raise some issues that genuinely puzzled me - and it seems, several others. Always good to keep up to date with treatment options - a bit like when I found glasses for short sightedness didn't suit me (around 14 years old), so started on hard contact lenses, and only changed to hard gas permeable some 8 years later. For others who need the comfort of soft lenses, there are many types, from daily wear disposable to "leave in eyes day & night for a month". For me, the cheapness & lower infection risks of hard gas permeable lenses which last me at least 2 years, plus minimal solutions, suit me fine. Perhaps there's a theme here... old reliable, trusted technology, with fewer costs / resources - for me, costs are still important, whether it's me paying for my sight aids or the NHS paying for my insulin, pens, blood testing consumables etc. If I, or anyone else, need more expensive kit, then they should have it, but I don't feel it's unreasonable to try the cheapest options first.
 
Hi,

Just to pick up quick on Einsteins question, yes Novorapid is compatable with a pump. I use it in mine. Its great having the one insulin for background and bolus. I get 4 vials on prescription and that is enough to last me 3 to 4 months. Its great to move away from the services of my pharmacy for just a bit 🙂

Lou
 
Thanks Lou,

Makes a few options more interesting to consider. But I still feel there is a lot of messing around to switch from MDI.

My problem is I don't like change. So moving from a combination I know is hard going. I do not understand why the manufacturers of Novarapid won't allow other pen manufacturers to make their pens with with their insulins. 🙄
 
Hi

Coming into this late but reading all the replies with interest. Rose is on a pump and has been for the past 2 years. Before that she was on 3 injections, then 4 and then 5. Without a doubt the best control we have had has been from the pump. We also got our little girl back for that i am eternally grateful.

The pump will be up for renewal in 2 years time, for which a replacement will be ordered before the 2 years is up so it should just be a switch over. We have only ever had one motor error and then the pump (through talking to medtronic USA) were able to sort the pump out over the phone. We would have had to inject novorapid overnight (i wanted to do this rather than use Levemir) as the new pump would have been with us in the morning if needed. My friend's little boys pump broke last week (22nd) They were able to get a loan pump from the hospital for overnight and the new pump was replaced the next day.

The pump, for us, gave us back our family, it isn't like that for everybody but for us i am very very grateful that the PCT fund it. As for when Rose gets older, it will always be her choice of whether she wants to continue with the pump or not and we will support her with whatever the decision. As for now, she doesn't want to give it up and we know she is getting the best control that we can give her with the best technology for her. As parents, we cannot hope for more.
 
Great thread Copepod, thanks!

Thought it also worth throwing in that pumps have been used for many years in the States, albeit not with the same technology -- but they've been there for 20 years or more, in some form or another. So many of these questions have been addressed in various ways by adults and children alike, and tested over time, to boot. There are numerous US based sites that talk about pumping in all its glory, at all levels...

It's not desperately unusual for people to move around between pumping and MDI, depending on the situation and feelings. Many teenage girls move to MDI in the summer months, for bikini reasons! And many long-term pumpers move to MDI for a break from feeling 'tethered'. How the control is, I'm not sure...but I'm sure that with lives which are more likely to be out of routine (eg university etc), or battling with hormones, the pump offers the most flexible control.

For us, the pump has seen my son grow and eat and grow and eat...and go out with his friends without fear of going mega high if he wants a snack, etc...It *is* an intensive regime, and probably 'harder' than MDI... We have made sure however that he does know and understand the basics about ratios/correction factors and total daily dose stuff, should his pump malfunction when we are not around. And of course he has to know how to carb count, and always to test regularly. This is crucial. We are also going to train the first aider at school in this: being unable to calculate an insulin dose without the pump is of course very dangerous. And it's always worth doing a quick calculation with every dose -- it turns out that E does this anyway. I can see him quickly confirm his own estimation...every time.

BUT like Einstein said some way back: what we long for is the whole shoot bang. CGM and a pump working well and in tandem. An artificial pancreas. Bring on the day. It will come. Then -- while like now we will be utterly dependent on technology, and thereby much could go wrong -- the 'return' for this high price will be a whole different degree of freedom...

xxoo
 
Thanks Patricia and all others who have contributed so wisely to this thread - I guess I'm hoping for an artificial pancreas, too, totally reliable, incorporating continuous blood glucose monitoring, all in a small, waterproof & robust package! Until then, I reckon MDI will do me and many others fine, just as pumping suits many others.
 
Copepod said:
I guess I'm hoping for an artificial pancreas, too, totally reliable, incorporating continuous blood glucose monitoring, all in a small, waterproof & robust package!
Click to expand...
:D Me too!! Me too!
 
Copepod said:
... to "leave in eyes day & night for a month"....
Click to expand...

I want these!! then i'd feel like I have perfect vision, I love waking up feeling like I have good eyesight when ive fallen asleep with my contacts in. I would like to have GP lenses too, but I have a feeling he didn't prescribe them because of a specific problem with my eyes?! not sure.

Copepod said:
Thanks Patricia and all others who have contributed so wisely to this thread - I guess I'm hoping for an artificial pancreas, too, totally reliable, incorporating continuous blood glucose monitoring, all in a small, waterproof & robust package! Until then, I reckon MDI will do me and many others fine, just as pumping suits many others.
Click to expand...

Ive always said i'm only have children when the mechanical womb comes out, but then I got Diabetes. Now i'm waiting for the articial pancreas. Surely it isn't going to be that long till the first models appear!
 
Katie - until the artificial womb is invented, other species have some very good options for rearing offspring - male midwife toads carry tadpoles on their backs, male seahorses carry babies in their pouches, male emperor penguins look after their eggs and young through the winter months while females go back to sea to feed. 🙂
Re contact lenses - well, worth asking your optician - even if gas permeable aren't suitable for you, it might be worth knowing why?
 
Einstein said:
Not sure Bruce can change the cannulas, would never be sure he'd washed his paws and under his claws properly. Also dread to think what my little angel would do to me if he could adjust the controls 😱

The nurse is happy to visit to inject me on days where I can't manage, my issue is I've been ferociosouly independent all my life, I don't want to have to depend on people now. When I do it's not for me.

But having the consumables changed once a week isn't to much of an issue for me.

A daft question here, is Novorapid compatible with pumps or doesn't it matter which bolus you're on?

Plenty to ponder on. Hopefully will never need to make the decision, but much appreciate the facts.

Northerner, it's a shame he have such a postcode lottery, being where I'm located has always served me well in terms of finding the best healthcare. The level of care in the NHS has never been my issue, the harmonisation of the standard is the problem.

As we've covered elsewhere, splitting into regions is all well and good, delivering local control. That's where the problem also kicks in, priorities for different PCTs. If the NHS took a long term pragmatic look at conditions such as diabetes and made the right technologies, training and resources available to all diabetics then the return in the medium and long term will be considerable.

But they don't, they won't, they will pay all the lip service we want to listen too, but on the ground for many of us the level of service often hasn't changed, less still improved in the past 5 years.

My healthcare team are great, I'm so lucky, from GP to all consultants, but there have been battles I've taken on, that others won't and that is wrong, I shouldn't have to battle for what I have right to, and others should have the same offered to them.

The most significant diabetes care related factor for me was the repeat dispensing prescription serice - where I agree with my GP the next six months worth of repeats, take the full set to my chemist and then go and collect them on or around the 13th of each month.

For others I am sure there are many other changes and improvements they've seen - or I hope so.

Of course I'd like to see this online, so I can have a maximum number of x, y and z drugs prescribed over the next six months, then order them a week in advance online from my pharmacy, then I wouldn't end up with a spare box of needles or Novarapid every six weeks. That saving would be considerable for the NHS and to track all prescriptions electronically, well, surely it will pay for itself in countering fraud?

Sorry, off topic! 🙄
Click to expand...

Hi, Just a couple of answers from my pint of view, I know others have responded. I have the roche, spirit combo.

Cannulas generally need changing every 2/3 days depending on type of cannula, as far as I know there arnt any that will last or advise to use for 5 or more days. It is unadvisable to leave drawn up reservoirs in the fridge, have been told this many times, something to do with plastic absorbtion (dont quote me though). As far as I know (but i could be wrong), my pump has the largest reservoir which lasts approx 6 days, yes it would last longer but as you change cannula every 3 days, they tell you you must change the set (reservoir) on the sixth day also. Hope that makes sense. Re the cannulas there are different types and some have inserters to help people with dexterity problems.

I was told to put my pump on house insurance which I did, incase it gets lost or stolen ( I know but apparently does happen!), if it fails roche will send me a new one the next day, all my consumables are apid for by the pct, i get supplies every 3 months. Roche are very helpful and basically i can order whatever i need, i asked for a couple of skins and expected to pay myself but they said the trust pay for everything!

I was told i would have my pump for 4 years and then i can replace with whatever i want at that time, no need to apply for funding again etc.

Hope this helps, x

Also, yes I believe they do novorapid vials, I use humalog
 
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Hello 😱)

I've only just signed up to this site, but have been pumping since June 2004. Since then, I've got married, had a daughter, and am currently 28 weeks pregnant with our 2nd - so I guess you could say that a) I'm an adult pumper and b) we've had an active life in the bedroom! :D

Personally, I don't detach my pump unless I'm in the shower/bath/swimming pool/similar - or occasionally if our little girl climbs into bed with us in the night and needs carrying back through then it's easier just to disconnect and plug back in when I get back in bed (within a few minutes normally). You can select different tube lengths for your set, I use the shorter one (60cm I think) which is long enough for it to rest on the bed alongside me during the act, alternatively I've been known to hold it in one hand if we're being a bit more active...

Sleeping - in bed it's just in the bed with us, I don't find it gets in the way as the tube is long enough to go over me when I turn over (yep, no night clothes in this house...not for adults anyway!).

Activity - I have been active for 8 hours (ran the marathon for Diabetes UK a few years back) and suspended my pump for the entire time with no ill effects. I just tested my sugars regularly and was prepared to act if required - either by starting the pump again or by taking glucogel. As it turned out I ate 4 packs of dextrose and tons of glucogel and didn't have to restart the pump once.

Pump failure: My first pump failed after 2 years use, obviously when we were staying with my parents in the wilds of rural France. Despite being out of the country and in the middle of nowhere, Medtronic couriered a replacement to me within 24 hours. For that 24 hour period I switched back to MDI, except with no long-acting insulin. I just gave a correction of Novorapid every 4 hours (which is how long my novorapid normally works for).

My HbA1c has gone from around 9 in the pre-pump days, now it varies between 5.5 and 7. I've had type 1 for 25 years and the only problem I've had is that since pumping caused such a rapid improvement in sugar levels, it caused proliferative retinopathy, so I've had extensive laser treatment and also a vitrectomy in one eye. Despite that, I would never choose to go back to MDI - having tried them for 10 years, they just didn't work for me.

Oh and re pump replacement, mine was replaced last year, as its guarantee ran out. My consultant wrote to the PCT recommending continuing pump therapy, that was agreed, and I went in to collect my new pump at my next clinic appointment. It had some new features that I had to learn, so had a session with the DSN and dietician who specialise in pumps at the time.

HTH,

Cate.
 
Cate, thanks, what a brialliant post. Helped me lots as been pumping around4 months now.

I too am a bit worried about the retinopathy as my levels ars so much better. Just wondering if the laser treatment has caused any problems with your driving liscence, thats if you have one of course?

x
 
Sleeping nakedish!

Probably TMI - but I generally sleep naked!! You can have the pump beside you - or Roche (supply the spirit combo) supply a soft velcro strap that wraps around your body that you can tuck the pump into so not quite naked any more!
Copepod - as far as planned long water activity - it is easy to come off the pump and just do MDI for the day.
Short activity - I go swimming for 40 mins and just disconnect.

They are not very sexy - I completely admit that - but hubby loves me and that includes pump! Mind you I got pump after being married and getting pregnant by him!! Not sure I would have been comfortable in the 'bedroom' in a new relationship with the pump but it has had no ill affects so far on hubby! I think if I was in a new relationship - I would disconnect which you can do, and just plug in again afterwards - and if you are particluarly strenuous/active in the bedroom!!

I think it is like anything - you just get used to it. I figured I would try the pump - and if I don't get on with it - I can always go back to MDI. It's not a life sentence - and I am having a few problems so far with odd levels!
 
tracey w said:
Just wondering if the laser treatment has caused any problems with your driving liscence, thats if you have one of course?
Click to expand...

Not especially - the laser affects your field of vision, so I notified the DVLA that I'd had it. First time they didn't do anything different and just let me carry on driving, but when my license expired they sent me for a field test at a local optician. This just tests that you can still see in a 120 degrees field when looking ahead. Assuming you can (they don't tell you the test results at the time), they reissue your license - mine has always been for 3 years, but I guess they would make it less if they were concerned.

I've done about 3 or 4 field tests now I think, and always kept my license, even when I thought I wouldn't.

I did have my license taken off me at the end of 2008, because on renewal some numpty in the DVLA decided that I had untreated/untreatable double vision 🙄 but got it back last year after a fight! (My GP and consultant wrote some *really* stroppy letters for me...:D) No idea where they got the double vision idea from, but from what I've heard it's not the first time they've made mistakes!
 
Thanks Cate, reassuring to know. Thats one of the main things that worries me , the driving as I usually end up having to drive long distances with the job.
 
Can I ask a strange question, does a pump make much noise? I appreciate that it would be designed to be discreet, but my boyfriend is super-sensitive to noises when he's trying to sleep, e.g. he can't have his watch in the bedroom as the ticking annoys him. Would a pump be annoying for someone who's so sensitive to noise?
 
NO noise, unless you have an alarm which is rare (perhaps more frequent with the youngsters and the sensors?). You can switch it to vibrate and different volumes of the tone, none of which are loud really.

I cant imagine it would wake him, or you really! (BTW, I am making ref to the medtronic, I dont know about the others!) x
 
What do you do with your pump say if you were on holiday and going in and out of the pool all day? Also if you were in a hot country would you have to keep your pump in a cold pouch (like the Frio)???
 
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