Adults with pumps - genuine questions

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Copepod

Copepod

Much missed Moderator
Relationship to Diabetes
Type 1
I realise this this isn't so much of an issue through the winter, but what do pumpers do when nights are warm enough to need to sleep naked? And what about other activites in bed? It seems to me that MDI is so much easier for uncomplicated nights, especially as I can achieve acceptable HbA1c values, so not sure I would consider using an insulin pump. But I'm interested to hear adult pumpers' opinions. For cold nights in sleeping bags / tents / mountain huts, members of MAD (Mountains for Active Diabetics) have devised many fleece pouches etc.
 
Hi Copepod

Although my son wears pj's in bed, he often does not attached pump to them. It just lies in bed beside him so it would not actually matter whether he wearing anything or not.

As for the intimate side of things, obviously, this does not effect us yet but from things i have read it would seem that you could detatch it during 'events 😱' and just re-attach yourself afterwards. Hopefully someone with experience in this area will be able to help you further. 😉

Happy New Year to all! 🙂
 
sharing bed with pump; canoeing / kayaking

I've moved my thread and Mand's answer (thanks Mand) so as not to divert the source thread.

As well as bed, what about getting pumps wet - I know some have to removed for swimming, which is OK if it's just a short session, but what if you're swimming for hours eg wetsuit in sea. What about if canoeing / kayaking? Not expecting to get immersed, but the potential for capsize is always present, and I never paddle for less than 1 hour at a time, often all day, with only a short lunch break ashore.

Still keen to hear answers from adults with pumps who share beds (not sure if my partner, or cat who sometimes gets under quilt despite our best efforts, or my moving around lots in bed, would be more of an issue) and go canoeing / kayaking.
 
Hi again Copepod

We took my son bodyboarding in Cornwall in October. We tested his blood just before getting changed just to check how he doing. We then detached his pump and put in a safe box in the car and got him changed into his wetsuit. Because each time his blood was within range at the start, we gave him some sweets to eat (knowing he would be expanding lots of energy) and my husband wore a special waterproof pouch around his neck containing a few Dextrose. After an hour in the water my husband took my son out of the sea and gave him a couple of Dextrose. He stayed in a futher 30 minutes max. Once he was out, dry and changed and re-attached to the pump we checked his blood again. If he was a little high we did not correct as we knew his blood would continue to come down more due to so much exercise. If he low or on target we gave him soemthing to eat to keep him steady. We had no problems at all.
Sorry for essay but hope it helps.

Mand 🙂
 
Thanks for the answer Mand, it does help, but doesn't really solve what I'd want to do. 30 mins bodyboarding in a wetsuit wouldn't be an issue, as I've already done lots of boarding & swimming in a wetsuit, usually for far longer than 30 mins at atime, with glucose gel pouches secreted in various places - swimsuit shoulder straps are ideal - and fortunately, never needed to eat them, as I find them disgusting. However, it seems impossible to either have a waterproof pumps or to disconnect for the hours kayaking / canoeing / gorge exploring (OK didn't mention that before, but it is something I do most years, usually without advance warning / planning) I was talking about. The more I think about it, the more a pump seems like a restriction, and far less convenient to my vaguely interesting life than MDI. Anyway, with a pump, I'd still have to carry a spare set of insulin(s) and pens / syringes.
 
Copepod said:
Thanks for the answer Mand, it does help, but doesn't really solve what I'd want to do. 30 mins bodyboarding in a wetsuit wouldn't be an issue, as I've already done lots of boarding & swimming in a wetsuit, usually for far longer than 30 mins at atime, with glucose gel pouches secreted in various places - swimsuit shoulder straps are ideal - and fortunately, never needed to eat them, as I find them disgusting. However, it seems impossible to either have a waterproof pumps or to disconnect for the hours kayaking / canoeing / gorge exploring (OK didn't mention that before, but it is something I do most years, usually without advance warning / planning) I was talking about. The more I think about it, the more a pump seems like a restriction, and far less convenient to my vaguely interesting life than MDI. Anyway, with a pump, I'd still have to carry a spare set of insulin(s) and pens / syringes.
Click to expand...

I suppose if it's unplanned it's a problem, but wouldn't it be possible to go back to MDI for the duration? I know it would probably be tricky, what with the need for basal insulin and then switching back, but if the pump gives you flexibility most of the time and is better overall for your levels then why not combine both regimes?
 
I understand what you mean now, Copepod and i really not sure about your dilema.

It will be interesting to hear what others have to say because i would have thought that if you are active all the time that the pump is detached then your blood sugars wouldn't rise because the activity would be keeping them down even though you have not got any background insulin during that time so you could be detached for several hours???? :confused: I really not sure.

I am hoping someone can answer your original question as it would help me too! 🙂
 
Hi there

Er, well the only comparison I have is that E can leave his pump off for two hours or so without ANY consequences while swimming or doing something majorly active. In fact he could probably go longer, just never has...

There *are* waterproof bags for pumps which seem to work really well, though as Bev will tell you there are several stories of people having ripped the bags while doing an activity...There is also a general feeling that several pumps are all but waterproof -- one advertises as such -- the Roche? Tracey? Animas? Viki? Certainly the medtronic apparently *is* waterproof, but they don't call it such because of the risk of it not being so if the screen becomes cracked, which has happened...

As for other nighttime activities, my assumption has always been that a disconnect is in order...

Clearly the adult wearers are actually *having* said fun 🙂 this holiday, as we haven't yet heard from them...

Not that I'm not...Oh dear, getting into trouble...better bail out!
 
A lot of it comes down to how ruggedised the pump genuinely is. If it's just water resistant for 30 minutes in 3m water then it doesn't expand much to being wet for much over an hour of surface swimming, whihc would be no use if I was doing endurance swimming with one.

A water resistant bag wouldn't add any protection to the LCD and you still have to get the tube out of the bag, at which point is a waterproof bag going to keep it dryer or wetter in the event if it leaking? I'd put my money on wetter, as even out of the water it's still going to be in water and it's going to be standing not moving water.

On the other activities, it's something that's crossed my mind - do they make a gold case for any of the pumps? In which case a heavy chain.. and you can wear it around your neck as some bling 🙄 I'm coming up with no more suggestions beyond that! Except how heavy are pumps? Oh and do they do longer tubes?
 
Copepod said:
Thanks for the answer Mand, it does help, but doesn't really solve what I'd want to do. 30 mins bodyboarding in a wetsuit wouldn't be an issue, as I've already done lots of boarding & swimming in a wetsuit, usually for far longer than 30 mins at atime, with glucose gel pouches secreted in various places - swimsuit shoulder straps are ideal - and fortunately, never needed to eat them, as I find them disgusting. However, it seems impossible to either have a waterproof pumps or to disconnect for the hours kayaking / canoeing / gorge exploring (OK didn't mention that before, but it is something I do most years, usually without advance warning / planning) I was talking about. The more I think about it, the more a pump seems like a restriction, and far less convenient to my vaguely interesting life than MDI. Anyway, with a pump, I'd still have to carry a spare set of insulin(s) and pens / syringes.
Click to expand...

I think you may be right Copepod, I was told never to disconnect my pump unless bathing etc. I was told to keep on during exercise, but dont, I find i need to keep topping up glucose during exercise. I was also told that due to the difference on pumping than mdi, if the pump fails, or is disconnected potentially you could be in dka in 3 hours. I believe the animas pump is waterproof and does not need disconnecting.

Regarding your other concerns, you need not be, my pump is part of me and does not cause any problems whatsoever. You can disconnect during sex if you wish, depends how long you are going to be disconnected for, is same as exercise situation.
 
Thanks for all the answers. My reservations about the pumping system seem confirmed - never had a pen failure, but always have a spare pen plus syringe with me, and would have to carry that even with a pump. Plus, much of what I do would risk damaging a pump - you should see that state of my digital camera and mobile phone screens 😱 The risk of DKA in 3 hours is a real concern - background long acting insulin means it would take longer than that, even if I ate with out bolus insulin.
Re bed activities - probably not too much of an issue, in a well established relationship to introduce a pump & disconnect when appropriate, but I'm really not sure how a new partner would react, and I'm sure I would occasionally forget to reconnect before sleeping - which would mean DKA within 3 hours, long before I'm due to wake up.
Anyway, as I achieve perfectly acceptable HbA1c results on MDI, I'm not contemplating a change. Just wanted to raise some issues that would affect me, and I doubt I'm the only one.... Even if such issues aren't relevant for children starting on pumps, they will grow into some of "my" issues. I hope they'd have the support / confidence to change to MDI in teenage years / young adulthood, if appropriate to theie lives. Thanks for some frank (or as near as frank as is reasonable!) comments 🙂
 
Certainly did not mean to scare you with the DKA thing, or anyone else for that matter. Not saying it would happen only that it could happen as the pump nurse advised me about this when starting on the pump. As long as your testing regular it shouldnt be a problem.

I dont see why you would need to change really as you seem quite happy and stable with mdi, if I was then i wouldnt have considered a pump either. Not all of us are so lucky with our control unfortunately :(
 
The DKA stuff is worth noting: E went very high and ill after 3 hours with cannula bent, but AFTER a full meal with no insulin. Another time, he was 'only' at 17, and not ill, when set had been pulled out, possibly for several hours, in the middle of the night (eg no food to digest). Similarly, when another bent cannula happened just before Christmas, he was 'only' 22/24 for a few hours, didn't feel ill, and had no ketones...but had known enough not to eat with such high numbers, until we could figure out what had happened. I guess what I'm saying is: DKA is not inevitable with a pump failure -- it's a possibility only. ALSO, since there's always a pen (be prepared!) available, then bgls can be lowered within an hour and a half of a real problem developing, usually...

But, like others say, you sound remarkably well controlled Copepod -- good on you. I suspect that the disadvantages of the pump, as you point out, will seem less so to youngsters who started on it early, and could find their own solutions etc...?

Best.
 
Thanks, Patricia, I'm adequately controlled, and MDI suits me fine.
I guess I'm more concerned about children starting early on pumps (when parents do most of the care), who may miss out on the chance to learn to manage MDI to suit their lives, leading to problems later in teenage years / young adulthood with new partners, caving, kayaking, gorge exploration, long distance swimming etc. Even if not everyone wants to get wet, muddy, squashed etc as often as me, surely virtually everyone wants a loving relationship that involves physical aspects?
 
Thats a very good point / question / thought copepod.

I guess it will be hard to get full stories just yet as most pumps are for the children (?) I know adults have them but again not a subject people would be willing to say too much on here maybe a bit personal, but the growing years would make it very, I was going to say interesting but I think I'll say difficult but I don't know owt about living with a pump, maybe you can just un plug it it you get lucky or in the mood.

Each to their own but I hope I haven't offended with my simplistic view! I do like to read about how you pumpers get along and think it is a good thang, one day It may suit me down to the ground.
 
I think it's the concern for me too Patricia, knowing the basics of why you're on or doing something.

It must be difficult for a younger child to communicate in a way to explain to a parent they aren't well because of diabetes, because diabetes can make adults unwell in exactly the same way, to a point where we can't describe the symptoms in a way that most other adults will understand.

However, with cannulas kinking, pulling out, on top of the not knowing in the future the basics of basal/bolus regimes, how to correct and ultimately being dependant on a machine to take care of so much of this for you, must be better supported by the 'back to basics' of how to manage your condition without your pump.

If a pump breaks down, how long does it take to get it repaired or replaced? I recall discussion many moons ago about the NHS only covering the pump for 'n' years for repair, do you then automatically get a replacement or do you have to apply for funding again? But how long say around this time of the year would you be without a pump for?

One of the manufacturers years ago used to supply you with a second pump as a spare, but I also think they had a closed unit which meant there was a finite life of their pump. I am now going back 6 years or more?

With seeing what children go through from a pumping regime in terms of testing, working through potential faults and then making the decision to revert to a pen (and then the panic of how many units!?) must make for some pretty daunting times.

My control has been pretty reasonable, six months ago I hit a wall and my HbA1C hit 9.2% the highest since diagnosis, nearly 10 years ago, in November it was back down to a slightly more acceptable 7.2% now to get that final 1% off it.

I've had reasonably few problems while on MDI, I would love to reduce my daily injection routine from 5 injections, for numerous reasons, even at 6'3" and an ex-rugby player I run out of 'new and interesting' places to inject or test. I also have the issue of dexterity in my hands and it's been suggested that perhaps a pump could be considered at some point if pens become ineffective.

But, I have for many years and am getting back to having pretty good control on MDI, so I have the baseline knowledge. To me, along with some others pumping looks to be more complex, sure it's just a case of getting our heads around it.

The deal closer for me would be the integration of realtime BS monitoring into the process, so I can fit and forget.

With such a process you'd also be able to get a positive feedback if something had kinked or the levels were right off the scale.

Interesting stuff though. Thank you for the insight.
 
There are so many issues here, I dont know where to start! Its a very healthy debate but obviously no correct answer so in short I guess its what ever works for you...

MDI clearly works well for you Copepod, physically, mentally and in all aspects of your life. For others this isnt so, myself being one of them. But thats not to say pumps are better or MDI, I am not trying to slate either one of them.

In the 6 months I have been pumping I have had one canula fall out, one kinked canula, no DKA, no keytones, most importantly to me- no regrets aside from wishing I had been given it earlier. I struggled beyond belief with MDI when I was recovering from my broken back last and this year. The touch of a button, rather than injecting with the problems I had at the time would have been a godsend, but luckily I didnt know any better.

Pumping has given me a stability in my life to manage diabetes the best way I know how. It is good to hear positive reflections of MDI as well from others too, neither should be thought of negatively but I believe it can only be what works for you is best.

Einstein: to answer one of your questions, when my pump broke I recieved a replacement the following afternoon delivered to an address 100 miles away where I was staying that night. Not bad, pretty accomodating. I only carry a syringe and a vial of insulin aditionally to my testing kit so nothing too dramatic.

With regards to dexterity, pushing the pump buttons is easy. Drawing up the vial into the reservoir could pose a problem?

Visually there might be problems for some. My mum wears vari (?sp) focals and cant clearly see my medtronic screen at all even with the backlight. When I saw Vikis Animas it was much better and clearer font, a definate advantage. Brighter and steps ahead of what I have. Hope that helps.
 
Sugarbum said:
Einstein: to answer one of your questions, when my pump broke I recieved a replacement the following afternoon delivered to an address 100 miles away where I was staying that night. Not bad, pretty accomodating. I only carry a syringe and a vial of insulin aditionally to my testing kit so nothing too dramatic.

With regards to dexterity, pushing the pump buttons is easy. Drawing up the vial into the reservoir could pose a problem?
Click to expand...

Thanks for this, on the dexterity concern, the reason I asked about the volume of insulin consumed each day and the capacity of the pump, was to indentify how often it would need to be refilled.

Given it will comfortably last five days probably much more, it would be possible for me to ask my partner or the nurse to fill it for me, perhaps keeping a spare cartidge in the fridge, assuming the changing isn't too tricky.

But then it would also be timely every five or so days to change the cannula. Again, I'm assuming on changing every five days? And I know I can't fit a cannula myself now.

Pressing a button I can do, the other comes down to alarms and if it just sounds or vibrates as well. If it vibrates, fine, if it's an alarm when Bruce would need to be trained to this sound...

It's not a bad service on supplying a new unit, especially considering you're so far away from home. Was that delivered by a courier or someone who could change the pump over for you and configure the new one?

It would appear from this that each manufacturer is responsible for their own support/service. Which is good during their warranty of say 12-36 months, what happens after that? This is where I did hear the NHS begin to expect the user to sign up to a maintenance contract on the pump directly with the manufacturer.

Has anyone got this far or asked the question yet?

Sorry, more questions!
 
Haha! Dont apologise! Its all very relivant and important stuff.

I havent been requested to sign any contract. I was "advised" to put it on my house insurrance, but this was not a mandatory spec from the PCT. If my pump breaks after the warranty I am informed that I always will get a replacement, also an upgrade in 3 years anyway. Keep in mind though I feel as if I am spoiled by an excellent pro-pumping team and great consultant. I go to a well funded hospital so I feel supported in that capacity. As we know well from various threads, this differs hugely between forum members....

I refill a reservoir and replce a canula every 4 days (approx). There is a larger reservoir size than the one I use so maybe they change less frequently? (Im sure Adrienne could clarify that for you!). Once mastered, it is easily done. I would expect this to be reasonably easy for a healthcare professional to do this for you on a home visit. Mine takes a matter of minutes, if that. Obviously, you are best placed to think of contingency plans....but if for some reason you have high levels and especially with keytones, a set change is advised and also may need to perform an injection as done in MDI. There is the potential for this to happen whenever, wherever.....(such is life!). Only once have I needed to do this in 6 months but I know some of the parents have needed to resort to this on more frequent occassions.

The supplies are for 3 months with medtronic. Everything is delivered by courier service to whatever address work/home/UK address that you like. 24 hour contact service line (manned by the USA at night, but at the price of your local call). All good in that respect. The delivery guy (as good looking as he is) is only a courier delivering medtronic supplies, nowt else.

Alarms- dependant on the make and model of course, but I have an audiable alarm and an option of vibrate like a mobile phone (alarms flash with the backlight as well). I dont find the sound ones particually loud, but then I also find the alarms are rare! Generally there isnt a lot to alarm about! It would be worth finding out what animas users and roche users think of theirs. Im sure an intelligent dog like Bruce could be trained to change the set and reservoir, no?! 😉

I have a friend on animas. When he goes abroad he gets a second pump on loan to take with him! Thats service with a smile surely?

I know this is digressing, but I look forward to the future when there are no inhibitions like dexterity to using a pump. A voice activated control? The technology has been around for years. I would love to see it develop in such essential areas of technology.

Medtronic have recently expanding in their Watford location (my DSN told me to apply for a job there, hundreds going!!!) and I think we can expect the rapid uptake in pumps in the UK to show a huge improvement in services from these companies and it is a very cometative game. I really think the future looks bright in this respect.

Hope you and Bruce have a happy new year David 🙂
 
Sugarbum said:
...I havent been requested to sign any contract. I was "advised" to put it on my house insurrance, but this was not a mandatory spec from the PCT. If my pump breaks after the warranty I am informed that I always will get a replacement, also an upgrade in 3 years anyway. ...
Click to expand...

Slightly off the topic of this thread, but I was reading on a US site that insurance companies there won't replace a pump until it has actually failed, which can leave the user with a difficult period of time whilst they negotiate for supply of a new pump. They generally also have to pay for consumables, or at least co-pay, so suffer more if they have to change things earlier etc. So much for their superior health care!
 
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