Pump rant! :(

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cakiejewell

cakiejewell

Active Member
Relationship to Diabetes
Type 1
Hello all, I'm sorry but I need to have a rant! I was accepted for pump funding several years ago and kept chickening out of doing it. I have finally decided that it really is my only option as I struggle to get good control on basal injection when I exercise, get lots of lows and it's gotten exhausting. So I decided on the Omnipod, looks great, available on the NHS... But... Not in my area (Worcestershire). So I said I would pay the difference in between the cost of the other pumps and the Omnipod. This is also not possible. But no one will give me a reason why? I am so frustrated! I haven't been physically able to go to the gym for some time as the night time hypos were just getting to frequent and despite my best efforts and various attempts to make it work I just kept having night time hypos. I desperately want to get back to the gym as I had up until July lost several stone in weight and have become much happier and healthier over the last five years. I do not understand how they can justify not allowing me to pay a top up to get the Omnipod? I'm very upset.... Sorry to ramble. Thanks to all that read and or reply. :(
 
Sorry to hear you are having problems :( I know nothing about these things, but perhaps it's because the don't have the staff with any experience of that pump, so would find it difficult to support you? Might be worth contacting INPUT to see if they can offer any advice?
 
I am sorry you are feeling that way but if you are so active why do you want a Omnipod stuck on your side. My pump just sits in my pocket no probs. Good luck & everyone has to RANT now & again.
 
The only pumps that are available to me are the Animas vibe which I have tried and didn't like or the Medtronic Minimed 640g which does not have the facility to do bolus calculation on the meter, you have to do the test on the meter then put the carbs into the pump itself. Also I feel it would be better for me not to have any tubing? I don't often wear clothes with pockets to be honest. It would be attached to my waistband if I had a pump and I would prefer that it was not visible if possible.
 
Well hang it from your bra then, or have it on your leg or wherever, there are accessories available for all of them. You really are better off with any pump than no pump.

The difficulty with money is more likely because the pump cos just send one invoice to each health authority, monthly I expect, and THEY won't have the set-up to do two different ones. You do realise that it costs hundreds of pound a month for cannulas (or pods in the case of the Omnipod) and batteries and anything else in the way of reservoirs, tubing and other consumables that might apply?
 
Leg is not suitable. Unless I wear it on top of my trousers which would be odd?! It also would not be possible to put it on my bra. My work uniform wouldn't fit over the top of it. It would have to be waistband... I do realise that they are expensive items which is why I am happy to pay the difference. It just seems very inflexible? The lack of choice is disappointing... If I lived in a different area I could get the Omnipod. I don't want to commit to using a pump for 5 years that I don't like.
 
Not IN your bra - I can't do that either - the pump is bigger than my boob so I'd have to have a C cup bra to accommodate it, which means the other boob wouldn't get any support and I'd have a lopsided appearance then! - they do 'bra hangers' for them ! Like a pocket that you clip to the flat lacy bit that goes round your sides and the pump therefore sits somewhere below ones armpit, snugly against ones ribs - and unless your work uniforms are actually skintight, they just disappear. I'm short waisted too, and though I do wear 'fitted' things as well as looser ones - eg vest type shoestring strap tee shirts whenever its warm enough (usually on holiday only then LOL) I've never had a problem.

The pump doesn't need to be near the cannula - the cannula could be in your tummy or backside, and your pump might be somewhere else up to 2 ft away, depending on what length tubing you decide to order. They come with clips, so with a waistband you can wear it on the outside - if you are wearing a blouse tucked in people will probably think it's either a page, or wonder where the earphones for your music are! - or, slip it into the bra hanger thingy or something like a 'phone sock' safety-pinned to the inside of the waistband if you don't want to buy a thingy - they are very lightweight and TBH only ever seem to actually be a problem if you WANT them to be a problem.

You know when you tried the Vibe, how long did you live with it at home/work with the cannula and tubing attached?
 
I had the vibe for several weeks to get used to putting the carbs into the pump. It was never attached to me I just had a demo pump and a reservoir to practise with. No tubing was given to me. My work uniform, both the top and the trousers are made from material that, sadly, does not stretch at all... In fact the top has started to rip up the side seam because it's so tight now that I have put some weight back on. It's a bit of a catch 22 situation here. If I can get sorted diabetes wise I get to go back to the gym and will lose weight again but without the pump I can't do that unless I am happy to start having more hypos again. I work for a franchise and if I want a new uniform I would have to pay for it at quite a high cost unfortunately. So right now bra attachment at any area would not be possible, I could only do that at home. I could put it on my waistband but I do not feel comfortable with it being visible as I previously mentioned. I realise that it wouldn't bother a lot of people but I would prefer not to be asked about it.
 
Can you find out the nearest pump clinic in a neighbouring county that supports Omnipod and ask for a referral? I don't know if that's feasible or something that is even available as an option but we all have a choice in where we are seen I think?

Have you had a trial with an Omnipod to make sure it is the best thing for you before you turn down the tubed pumps on offer? I'm pretty sure there is a trial demo Omnipod kit you can request in the UK.
 
Tuck the pump on your waistband then facing in if you don't want anyone to see it.
What was your problem with the vibe. Basically beggars can't be choosers as the saying goes. If you want a pump then you need to make some compromises 🙂
With a pod you have a handset that you need with you all the time, so can you do that with work.
Tubing comes in many lengths from 23cm upwards. There is no need for any tubing to show anyway as all under your clothes, so no one would not you had a pump unless it starts to alarm for any reason.
 
If you are dead set on the Omnipod I think Flower's suggestion is worth considering. It might mean significant travel to appointments, but these are generally only once or twice a year.

I think the Omnipod is a bit 'marmite' - I'm another who sees more problems with it (the places where I generally wear my pump are no good for a pod because I would be sitting/leaning on it constantly princess-and-the-pea style!). But for some people they are the answer to their pump dreams 🙂

You could also investigate patch pumps like CellNovo (not available many places but I know at least one person in the UK using it) and Kaleido and Jewel are 'coming soon' to the UK too.
 
I work full time & in & out of lofts, under floors & all over peoples houses (electrician). Pump has never been damaged. 🙂 I love my pump & would not give it back :D
 
Thing is, unless you actually 'wore' a pump to see how you coped with it while just living - I don't think you can decide it's impossible.

If you eg wore the Pod on your arm then of course you couldn't do that with tight sleeves with no stretch as they stick out much further than a cannula and Mike and I both know someone in the US who used to eg regularly walk into the sides of doorframes and rip it out - (Gramma Bear, Mike) personally I've been a clumsy clot since I was born I think, so I do think they aren't for me!
 
I think it might be worth giving it a go. I had the same concerns before I started on my minimed veo but I soon got used to everything. My pump lives in my pocket 90% of the time and if I wear a dress I wear boxers with a pocket in underneath so no one can see the pump. I go to the gym now and again and wear a SPIBELT, which is a super discreet pocket on a belt. I wear the pump clipped to pj bottoms or in the pocket of my onesie! It is honestly really easy to get used to. My cannula is discreet and I tend to have it on the front of my thighs or in the fatty area of my lower back / side (I'm a size 12). I personally could not imagine having a massive pod sticking out of me, I feel it would be really awkward, especially when sleeping or doing activities such as yoga! And then you have to remember to take a remote control with you everywhere... Nope, not for me! I can't imagine life without my pump now and I would probably have whichever I was offered to be honest but each to their own 🙂
 
Lauren said:
I think it might be worth giving it a go. I had the same concerns before I started on my minimed veo but I soon got used to everything. My pump lives in my pocket 90% of the time and if I wear a dress I wear boxers with a pocket in underneath so no one can see the pump. I go to the gym now and again and wear a SPIBELT, which is a super discreet pocket on a belt. I wear the pump clipped to pj bottoms or in the pocket of my onesie! It is honestly really easy to get used to. My cannula is discreet and I tend to have it on the front of my thighs or in the fatty area of my lower back / side (I'm a size 12). I personally could not imagine having a massive pod sticking out of me, I feel it would be really awkward, especially when sleeping or doing activities such as yoga! And then you have to remember to take a remote control with you everywhere... Nope, not for me! I can't imagine life without my pump now and I would probably have whichever I was offered to be honest but each to their own 🙂
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I Feel a bit like a mom defending her child - I love my pod and it's not very big. I stick it mainly on the front or back of my arms or midriff or tum and apart from the very first one that I put in the middle top of my arm and knocked on the door jamb, I have never found it uncomfortable or 'in the way' or knocked off. However as has been said it is probably like marmite you love or hate the idea. There is an omnipod forum on Facebook for anyone interested in seeing the innovative ways people wear them, and some of the pros and cons. I know that doesn't help you get one but its worth trying another area if poss. I was offered about 6 different ones and I go to Solihull/Birmingham hospital. There is also a lovely pump consultant there. I didn't realise how fortunate I am. The handset doesnt have to be with you all the time but if I leave the house I always take it with me,it mostly lives on kitchen table. You can apply for a trial pod from their website. Best wishes.
 
Cakiejewell I notice that you are from West Midlands area. I know it covers a lot but Solihull, heartlands and good hope are linked in that area.
 
Hi! So just wanted to give an update. I got the Medtronic minimed 640g in the end. I have had it for two weeks. Have barely had a hypo which is wonderful but now am going up the other way always around 11mmol/l but I'm sure with time I will get that down to a good level. Thank you for all the advice and encouragement!
 
cakiejewell said:
Hi! So just wanted to give an update. I got the Medtronic minimed 640g in the end. I have had it for two weeks. Have barely had a hypo which is wonderful but now am going up the other way always around 11mmol/l but I'm sure with time I will get that down to a good level. Thank you for all the advice and encouragement!
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You are bound to have some higher than normal numbers until you have sorted out your basal pattern so what you are experiencing is normal, very frustrating but normal 🙂
 
To be honest... I'm just happy not to be having constant hypo's! It makes me feel anxious that it's that high but I know we will get it sorted. I keep thinking I have forgotten my insulin! Which is weird...! And i have had a couple of drama's with it already but I'm glad that it's all happening so early so I'm more prepared for any possible problems.
 
cakiejewell said:
To be honest... I'm just happy not to be having constant hypo's! It makes me feel anxious that it's that high but I know we will get it sorted. I keep thinking I have forgotten my insulin! Which is weird...! And i have had a couple of drama's with it already but I'm glad that it's all happening so early so I'm more prepared for any possible problems.
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It's surprising how quickly you will adapt to pumping after a while you will start to think wow what was I so worried about?
Did you invest in the book pumping insulin by John Walsh?
 
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