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Hi and opinions required :)

Dragonflye

Dragonflye

Well-Known Member
Messages
235
Location
Bradford
Type of diabetes
Type 1
Treatment type
Pump
Hi everyone!!!
I have only just registered on this forum... not sure how i didnt know about it after being diabetic for 23 years since i was a little girl!!!
I was hoping to get some practical information and opinions on the insulin pump (i've read all the websites).
I find this bizare and weird the fact i knew very LITTLE about the insulin pump until i had my daughter 3 years ago however while i was pregnant the pump was commented on during pregnancy that I would have benefited from it (unfortunately i have always been hypo unaware and have always had quite bad nocturnal hypos which always require 3rd party assistance)... long story short after i had my daughter i had a few issues with the care i was getting and being told i didnt meet the criteria for getting 1...
3 years later i got pregnant again and during my pregnancy I brought up insulin pump again and finally was told I was an ideal candidate for the pump due even though i had excellent control due to me having "life distrupting diabetes" however i couldnt have it until i had had my baby...
my son was born 6 months ago and FINALLY im almost at the stage where im having to keep a food diary for carb counting for appt on thursday...
Life story over with... :) I was wondering if anyone had any advice on the pump, things youve found good and things that youve found worse by using the pump... ive read all the websites and such but was hoping to get opinions from people who actually use the pump!!!
Thank you sooooo much in advance :)
 
Thank you :) apologies for posting this here, unfortunately im a bit of a technophobe...
 
It is not a problem. It will be a Type 1 that will answer you.
I like to bump posts up that do not get an answer as they sometimes get overlooked. You are new to the forum and need to know that we do care about you.
 
I've been pumping 3 years and 2 days :mrgreen:

For me it's the bee's knee's not had many problems still use the same type of infusion Sets has I started with, differnet' pump though I started out with the Escort version The Accu-Chek Spirit which was very basic indeed, no wizards on it at all, but was up-graded to the Accu-chek Combo at Christmas, which is basical the spirit with wizards and a finer basal dose.

Before my pump I suffered Dawn phan, basal profile for the rest of the day that looked like a roller coaster rather than a gental wave, and with a insulin sensivity that ment 1 unit of insulin would drop my BG by 8mmol/l live managing my daibetes daily was intensive to extreme.. Calculate you insulin dose at the wrong part of the peak or trough of a wave meant one way or the other..

The pump has given me stability with control, I'm able to program a stbale almost flat profile to work from, and I can ajust a bolus to a 0.1 of unit, the pump also gives me many more tricks such as temperory basal rates, 3 different type of program delivery boluses..

I eat a normal carbs diet, use on adverage 17 units of insulin a day, and an HbA1c in the 5% range so for me it's been a success..

Pumps can be a great advantage for those who suffer with hypo unawarenss, as it give the ability to run a tight range control at a higher level for a while to see if warning symptoms kick back in.. And newer modles like the Veo and the Vibe that just recieved it's kite mark, can be combined with GCM's to provide a better experience/warning of pending hypo/highs..

Down fall, is yes you wear them 24/7 ( you take them off for short periods though) and you've got to carb count etc.. There are a steep learning curve to start off with and some to have problems pining basal rates down... And they will only ever be has good as the user though, not a magic wand..

Don't forget to check out the NICE critera and remember that you don't have to fit all the critera and your clinic can't deem what criteria you should fit.. You fit one then you are intitled to have funding..
 
Thank you :) well i apparently DO meet the criteria :) i have been carb counting since i was 4 (well not personally i have been doing it myself since i was 8) - i remember about 10 years ago the doctor questioned why i was still doing it - at the time it wasnt the "done" thing... however it seems to be back with a vengence now :D

luckly i think i am prepared, i know it aint easy however due to my extensive and religious carb counting, regular testing approx 6+ times a day is the norm for me, as well as being able to alter both my basal/bolus insulins accordingly (during pregnancy i was changing them successfully on a weekly basis without the need to speak to my consultant)

I meet the criteria as i have life distrupting diabetes... in english i am hypo unaware and have nocturnal hypos which always require 3rd party assistance, my poor husband is now a light sleeper just in case!!!

Was good to get a little feedback though, i appreciate that, and yeah the 24/7 thing... should be interesting getting used to but im more than willing :)
 
Did they say why you didn't fit the critera! I would contact Input, www.input.uk.me they will be able to tell you if you fit the critera and whether the hospital is being out of order.. PCT's can not choose what aspects of the critera they are willing to fund..

It surprising how quickly you forget you are wearing it, night times I was apprehensive on the first night then no problems afterwards.. My just roams around at well I don't clip/strap it onto me and just follow the tubing in the morning it's only going to be 60cm away from me at most :lol: I do have a bad habit of forgetting to put it back on after having a bath

The carb counting side of things isn't to bad, as you get used to your normal foods, if you are out and about so have to guestimate if you get it wrong you can adjust the pump to compensate, such as if you didn't have enough then you press a couple of buttons to add more, and if you've over shot and looking like you going to go hypo, then you can put a temp basal rate on and have a good chance of avoiding it..

I used to work with dogs, so very good having different profile rates for work and home, now I have two of my own, the pump is a god send when it comes to training, agility etc with them.. Things I struggled with MDI
 
nope i fit the criteria :) my consultant wanted me on it before i return to work in august and have had a few appointments recently with another on thursday (had to proove in form of a diary i can carb count even though my specialist had told consultant and dietician i was brilliant at it - known her for many many years :D ) so im hoping its all authorised within the next week or 2 :)

was just wondering people experiences as all the websites go on about how ace they are but dont go into too much details of any impracticalities etc there may be :)
 
Impraticalities..

what you can do to get a idea about some of the impracticalites of warning a pump, is use a moble phone (as they similar size) a bit of ribbon, string 60cm (the tube length used by most) tape onto phone then tape the other end to your stomach (most common place for infusions sets) and where it for a couple of days..

When it comes the best place to wear a pump it's individual really, but there's lots of options of both were do with what clothing, also lots of ideas to resolve anything..

Other imptract's

Getting started a lot of testing and sleepless nights of basal testing but again this will be dependant on how easy it is to pin down the basal settings... Then over time you start learning what type of bolus suits what meal and situation etc.. Some find it easier than others to get settled with this part.

Storage of supplies..

Well you will still need emergency supply of both background and quick acting insulin cartridges in the fridge as well as the vial you'll using to fill your pump cartridges..

Depending on how your supplies are delivered, normally 3 months worth at a time so somewhere to keep this, around 4 box's of infusion sets, several box's of cartridges etc.. 1 service pack

You will need to carry with you, as spare infusion set, plus cartridge spare quick acting insulin pen/cartridge as well as your meter and hypo kit, I used to keep a spare in work so I didn't have to lug one to and throw... And if I go out and within 30 minutes of home, I don't take spare insulin pen!

Each pump manufactors will have several different types of infusion sets, telfon, metal, straight, angles and length some people find it takes time to sort out the one that suits them best..

If you've got anything in mind about impracticalites or situations you are sure off, then just ask and we can explain further..

P.S

A good investment is a book called Pumping Insulin by John Walsh the pumpers bible
 
Thanks for that!!! :)

i was a litte suprised when yu said potentially how much you will need to store :o but im rekoning i should be ok with that :)

i wont have an issue with carrying things around with me... my handbag is HUGE... 2 young kids, kinda got used to the idea of needing LOTS of space :)

I will look into getting the book you suggested once it is 100% i am going to be put onto the pump :) however my nurse recomended a online course thingy with medtronics (it will be a medtronic pump i have been told i will get) - done this but it didnt give a "real" opinion of what the pump is like :) so i really appreciate everything you have said jopar, i am even tempted to try the mobile phone trick :D
 
There is one downside that I didn't mention, is that we a pump is can increase the risk of DKA, as you've got 2 hours of insulin available at any one time..

Pumps do have an alarm for onclusions (non delivery of insulin) it's worked on pressure on the piston rod if, so if anyblocks along the tubing, infusion set or site, then once 3 units builds up it kicks of the alarm..

This has two problems to it, if you pump/infusion site is leaking for any reason then it won't kick the alarm and another problem for the likes of me who use very little basal insulin even with a blockage it could be 7+ hours before enough pressure builds up to set off the alarm..

Saying all that personal I've never had a problem with the above and the couple of times I've had occulsions has been while bolusing and I've had presure on the infusion set!
 
Hello Dragonflye!

Well I waited 5 years for my pump, fought really hard for it and had done loads of research on them and yet I had the most awful start when I actually got it!

Like you I've been carb counting since I was 4 and have often had terrible hypos or severe highs, due to having brittle diabetes. I had managed my diabetes to the best it could be on MDI but the pump was the only real solution for me. It was and still can be tough going but it is so worth it.

When you start on the pump they reduce your whole insulin dosing to make sure you don't have severe hypos. For me they reduced too much and I had crippling highs. Looking back I wish I had upped my basals myself rather than waiting for permission to do it. I wouldn't have felt really ill with BG levels of 17-20 every day.

Another thing is giving it time and accepting that you may hate it at first. I knew about being connected 24/7 but I still went through a short period of really hating being always attached. That WILL pass. I don't think about it at all now.

At the start I didn't trust it was working and I felt really scared, especially going to sleep at night. Again this passes and not everyone feels like that.

Pumping with a baby is tough. My son is 18 months and I try to conceal the pump or he would be far too interested and pull at the tubing and set. As he is too young to understand he sometimes climbs on me or hits me where my infusion set is and that can be sore. Also timing a set change around a young child takes planning. My pump (Animas 2020) has a child lock - a lifesaver for when he catches the button! The pump can be awkward when trying to carry a toddler but you get used it and again you might not find this depending on where you keep your pump.

Kinked cannulas - the worst issue for me. Had a few early on due to being a novice and then I was fine for over 6 months. When the hot weather arrived it made my cannulas softer and caused them to kink. Since putting them in the fridge no problems!

The pump constantly needs tweaking as your life changes all the time so that can be hard work. Also I get hypos running round after my son when I hadn't been able to predict a really active period with him. My hypos are much more managable though and I need less glucose to get me back on track.

Overall I find that the benefits of the pump, which is giving me control I never thought possible, still massively outweight any negatives. :D
 
Wow thank you that response!!!! I cant believe id never figured or even looked into what it would be like with children!!

Luckily for me I do have great control on the MDI, the only reason the pump has been recommended (and why i have fought for it) is due to my hypo unawareness and nocturnals always requiring 3rd party assistance having a massive negative effect on my life.

I think from what you said that may be something im going to discuss with my nurse about changing doses if required - i have always done really well with adjusting my doses when required with my current insulin so im hoping that once i settled down with pump I am hoping to be OK with the pump!!!

I can't believe im speaking as though im definately going on the pump, dont find out if i can until 11:30 today when i have my next appt... have been keeping a food diary to show i CAN carb count in preperation :)
 
hi

my son was like u hypo unaware and had bad hypos through the night it didnt matter what we did he would be high 20s one min and low 2s the next alter the insulin slightly and he would go completely the opposite, i have to say the pump has been a life line for both him and me.

the plus side is the more stable control and for him more independance and its easier for him to do the sports he loves the minus is the bubbles we keep getting despite following all the advice its frustrating when he gets a high teen reading when the rest of the time hes got good control. he doesnt mind carrying the pump around and got used to it remarkably quickly it was a worry to begin with with little sleep i felt like a zombie in the first few weeks but months down the line and we would not return the pump its our new best friend.

hope u get the news ur hoping for let us know how u get on :D

anna marie
 
Wel my docs are getting the funding for me =) my nurse said she had never had anyone been turned down so im praying i wont be :) on the plus side I HAVE THE PUMP AT HOME WITH ME lol im now in the process of readin the 267 page manual :D i will be going on the pump on 20th June as long as the funding for it goes through :)
 
Brillient news..

Funding isn't based on the PCT making the decission, it's totally dependant on your consultant making the decission... If the PCT says no to funding then they will be acting illegally worst they can do is attempt to stall funding which again they are treading a legal fine line.

Now it's time to think of any questions you have concerning it, be it wearing or using it etc. and ordering the pumping insulin book..

I had to battle for my pump over a few years then the night before I had the heebee's geebee's with the thought what happens if I don't get on with it :roll: Alongside I was a bit scared of the pump pumping insulin when while I slept at night and I had no control so to speak, until my husband pointed out that I injected my background insulin at 11pm every night and what did I think that was doing while I slept :lol:

Don't expect major improvements straight away it can take time as you have to learn a new way of looking at how you control with the pump than with MDI... So you will find that its hard work getting up and runing sorting out basal rates, and quite often carb-insulin ratio's change as well,once you've got past that part it you find as the more experiences you get the easier it is..

Good luck for the 20th
 
hi also been diabetic since i was 4,your life story sound slimmer to mine as in rebelling in the teens, and then going through 2 pregnancy. Been diabetic for 35.5 yrs

I have had the pump for about 4-5 yrs.
I was unsure if i wanted it but my nurse convinced me know i would not back, fab not has to inject every day only every 3 days,
Which is just a ouch is that in?
It is a lot of hard work for the first month or so but once all the levels are set for your needs it’s great, also it only takes a couple of nights to get used to sleeping with it, i was worried that i would get tangled up with it but i find that if you turn in bed then you arms move the pump around without you knowing.
The only down side that i have found personal is that my tummy now has marks all over but this may just be me as i mark really easy,
There is a wizard on the pumps that works out dosage for you so all you need to do is put your carb Gms in, it really couldn’t be any easier

Hope all goes well with your pump
:)
 
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