No more pumping for now.

[iHs]

If ever there comes a time when I am faced with set problems and insulin being absorbed ok, I will probably insist on twice daily regime again but will get cgm to keep me on the straight and narrow.

 

[MushyPeaBrain]

Oh no @MushyPeaBrain

So will you have to change back to MDI just for a short period?

I didn't actually realise sites could start to fail

Yes I will be going back to mdi for 2-6 months if I can. The longer I can hold out the better for healing my sites. I am already low carbing (less insulin bolus easier on sites), using bio oil every night and taking skin supplements. I'm hoping the break will be worth it

 

[donnellysdogs]

I'm not considering a pump holiday because I don't like the pump. I LOVE it and I'm devastated to be in this position. After 4.5 years of pumping, all in areas I never injected before and very careful rotation, my sites are starting to fail. The areas are tired and absorption is effected. I am starting to have to change basal for each site. If I continue to pump in these areas I face doing irreversible damage and will be unable to pump.

So I am trying to be brave and face this head on so that I can continue to pump. I hate MDI. I'm needle phobic, injections really hurt, being brittle diabetic my control fluctuates hugely and mdi could never keep up, the list of issues I face on mdi is endless. I would never choose to have a pump holiday if I had a choice.

Pretty much identical - except not needle phobic mushy!! Keep telling myself benefits of "test, jab n go" for mornings rather than the "can I last day with cartridge, set change everyday, is it tube day change, us ut battery change day, have I got spare sets?" Before I get out of bed.. Then"this set is sore, got to move it before going out, get undressed again, waste another set"

So just this morn.. New set.. But now I can feel it... So I know its hit muscle... In my bum. So now thinking "do I change it, don't want to get undressed again!!"

Accuchek and my hospital know I love my pump.. And consultant has emailed me saying she is disappointed that I cannot get cannulas to be comfy...

Like you Mushy... Loved pump, levels were never so good on MDI... This is a suck n see situation but being happy with my body, size and fitness is just as important as my bloods.

The worst thing that I fear is hypo's as they are so rare and mild nowadays that I do not want the hideous hypo feelings to return. That is my greatest fear of all. Highs I know I will find a way but lows and hypos put the fear of god into me about returning to MDI.

@robert72 and @Spiker have both eased those thoughts slightly...but they are still there in the back ground.

 

[yamantr1]

I hope all goes well for you @Spiker after coming off the pump. If you find that Levemir is not working for you, talk to your GP or specialist about Tresiba. I have never been on the pump as I'm not convinced it will work for me and was on Levemir for many years, but found that my fasting BM was always high. Since going on Tresiba I've been waking up in the 5-7 range consistently and I have managed to reduce my intake of Novorapid by 10%

 

[donnellysdogs]

Came off pump this afternoon... Couldn't stand the pain from the cannulas anymore or not knowing if they were working etc.

I had one lantus cartridge and one novorapid cartridge in fridge and put in to my old pens (novo 3!!)....

What an overwhelming relief it is to be in comfort!!

Yep levels are going to be unpredictable with the lantus... But the relief from cannulas just in last 4 hours is absolutely overwhelming to be honest. Just had dinner.. With lantus and novorapid so will hiurly test and 2 hourly test during night but even this is nothing to the absolute relief I am feeling right at this minute.

10days till official hospital visit to see whether I can have the degludec but I'm beyond the point of worrying about that...

 

[Spiker]

@Spiker.. Have you been using the same ratios for corrections or bolus's as was set up on the pump?

Well I stupidly switched from Humalog to Novorapid when coming off the pump so it's hard to be sure why my ratios needed to change. Be cautious I guess, maybe reduce ratios slightly. The reverse of going on to the pump.

Things I will enjoy..
Nothing extra on body;
No waiting with the timers on the Insight pump;

Most of all- being able to jump in bath and not having to detach, attach etc.. That is going to be my biggest enjoyment of all.

Tell me about it! The last two weeks have been amazing. The sense of freedom is physical as well as mental.

 

[Spiker]

@buckley8219 agree with everything you said in #85

 

[Spiker]

I
dislike having to carry this thing around with me whenever i wake up at night for the bathroom,
i dislike having 'trouble' taking my own pants off, or using the washroom with pants down lol
I can totally see why someone would leave the pump, it CAN be handled with injections if you have no issues with injecting frequently (which i do not).

I however, think staying on a dexcom would be worth this trouble.

The dexcom acts more like a road map, where the pump is the car. If you have car and a poor map you wont be very well off. But if you have the map and a poor car at least you will get to where you are going.

[edited]

Yes, I agree with all of that!

 

[Spiker]

I'm devastated to be in this position. After 4.5 years of pumping, all in areas I never injected before and very careful rotation, my sites are starting to fail. The areas are tired and absorption is effected. I am starting to have to change basal for each site. If I continue to pump in these areas I face doing irreversible damage and will be unable to pump.

So I am trying to be brave and face this head on so that I can continue to pump.

So sorry MPB. :-(

 

[Spiker]

Came off pump this afternoon... Couldn't stand the pain from the cannulas anymore or not knowing if they were working etc.

...

What an overwhelming relief it is to be in comfort!!

Yep levels are going to be unpredictable with the lantus... But the relief from cannulas just in last 4 hours is absolutely overwhelming to be honest. Just had dinner.. With lantus and novorapid so will hiurly test and 2 hourly test during night but even this is nothing to the absolute relief I am feeling right at this minute.

That exactly matches my experience DD, all of it.

 

[donnellysdogs]

@Spiker
Glad you felt / feel same. I thought I was OTT..with the relief...

I find it quite amusing that I just decided to do it when sat in bath! Just couldn't face another set change.

In fact I've left the pump running in the bathroom 5 hours ago and hubby is going to go and dismantle it for me, just so that I keep elevated with my mood!

He said this morning (for first time ever) how wonderful it will be for him not to worry where my set is, where my tube is and that he looks forward to a cuddle without gadgetry again. He never ever commented before...

 

[Spiker]

Update.

I am just past my first 7 day average and it has just pipped 10.0. I'm sure you are all unimpressed, but I am over the moon. In nearly 18 months I have not had a weekly average below 10 except when I was using CGM and low carbing (both together). My sustained average BG was 13 over the last YEAR, including the CGM / low carb periods, so obviously was even higher during non CGM / low carb. In the last six months it had risen to 14 and in the last three months to 16. My HBa1c as I said has been rising year on year for 5 years, apart from when I did CGM / low carb.


I am not low carbing now, I am just using straight MDI. I'm doing 6-9 tests a day consistently, at 4 hr / 2 hr intervals. My basal is validated. I have not yet validated bolus ratios as I have been ill for a couple of days, but both ratios are reasonably accurate and just need tuning.

So for me it is a minor miracle to get my 7 day average below 10.0 after only 7 days. I have no doubt that this second week will also show big improvements. Obviously the improvement each week will probably be less than the previous week and plateau at some point. But that's going to be a great plateau for me to get to.

I have not felt better in a very long time. Above all I feel *in control*. This is one of the most important things for us. To feel that we understand what is happening in our bodies and can react, adjust, correct. Many people get that feeling of control from the pump. I didn't. It doesn't matter so much how we get that feeling of control, as that we do have that feeling of control. I think it is the major factor in resisting burnout, which otherwise is more or less inevitable.

 

[Spiker]

He said this morning (for first time ever) how wonderful it will be for him not to worry where my set is, where my tube is and that he looks forward to a cuddle without gadgetry again. He never ever commented before...

Exactly the same with my partner. You know, our partners are so supportive, they put up with so much, in silence, because they just [want] whatever is best for us. :'-(

 

[donnellysdogs]

Exactly the same with my partner. You know, our partners are so supportive, they put up with so much, in silence, because they just what whatever is best for us. :'-(

Oh so agree.... Hubby seems actually relieved too as much as me!

He just said he was always aware of it, even when giving me a hug when coming home. Always careful as he never knew where the set would be.. If he saw pump on my left arm he knew the set would be anywhere on left bum or back or non love handles.. But had to be careful!!

He's put up with it in total silence... Just total support though, no matter what.

Aren't our partners such special people.

(Also day 2 of no sugar free chewing gum). I literally can't wait to go to bed to have a genuine cuddle!! And to see if the non aspartame nights are going to be better too!!

I think I am going to have the best nights relaxation I have had in a very, very long time!!! Can't stop smiling!! My levels are up to 10 now but I don't care!!! Yaaay!!!!! Singing n dancing... Yes, literally!!!

 

[donnellysdogs]

Your 7 day average so far is good Spiker.. No way will I manage that!! I'm ok running at 10-15's n bringing down gradually.. Just not wanting hypo's...I think you've managed brilliantly to be honest..
Onward and upward eh?? We'll get there..

 

[MushyPeaBrain]

@Spiker and @donnellysdogs I'm really happy for you both!!! It's fantastic to be hearing the updates and how you are managing. It's helping me with moving forward on my pump holiday too. I know my hubby fels the pump makes life less intimate but he is also scared about my BG going high off pump and that mdi is less flexible. Time will tell. I am waiting for an answer on Tresiba before I come off.

 

[Spiker]

Onward and upward eh?? We'll get there..

We sure will DD.

 

[ann34+]

If you aren't happy and it's not working in the way you wanted then it's not going to be right for you.
I can't comment on anything other than my own pump.
It's a mini med. It's pretty old technology even down to the screen changed by rubbery Sinclair type buttons. My new model is in essence the same as my 7 year old one which wasn't new then.
It simply does what I want it to do ie vary, and that is mainly reduce, the amount of insulin going in when I'm more active. I can't do that with a long term insulin. All else I could probably do with injections .
There have been no regular component failures I have a suspicion that only having a small reservoir to fill (180u max) means less likelihood of bubbles. Sets only cause a problem if I leave them in too long (person not system failure) or if I put them on my stomach where the adhesive causes a reaction (a nuisance because it restricts places I can use) In all the time I've had it just one tube has pulled out of the cannula causing a brief period of no insulin.
It's a good thing that it doesn't often cause problems because the alarm is so feeble that I often don't hear it .

I don't make use of any of it's data since I haven't the means to download it to a computer and it's not a full record in any case (eg I never put between meals readings in unless I'm going to need to correct )

Basically, it works for me because it solves my problem. It was a fairly straightforward problem.
Those physical marks are I agree, very real and take a while to go (suspect longer as you get older) I've been with the same man for 2/3 of my life, we're beyond the point that these things take on a big importance .
I have never needed four hands to go to the loo. The only scenario, I can think of is when naked and no bit of clothing to attach it to. And the time when I am without clothes for longest is swimming before bed in the summer.(we have no near neighbours) My pump isn't waterproof so I just take it off. The last thing I need is more insulin whilst swimming.

I think some of your problems are too important to you and your lifestyle to overcome. You really have to be happy about wearing something all day, everyday .I forget mine is there most of the time, you wouldn't be able to do that.

I also do not use any data, in fact i don't use anything other than the basic pump. I still do all the calculations in my head, and have never bothered with putting in carbs etc i do not even use blood glucose meters that are compatible, i just need the pump for the flexible base rate - this has allowed me more freedom from fear of hypos, and the freedom to not to have to eat much glucose, and the freedom , mostly, from ketones, as there is always a minimal infusion of insulin, etc, it is not possible to generalise - but for me, life on a pump is maybe very tiresome, and sometimes very difficult, but it is an enormous improvement compared with the years and years before - i use less insulin - under 20 units p day - and have relatively few hypos - hypos were always a problem before,. Now hypos are mostly minimised, though there can be not so good days, if hypos are a problem, then i lower the base rate more - eg. from 0.2 units per hr to 0.175 p. hr (early hours rate), or lower if any exercise in day, or if worried about hypos, etc . I use the metal cannulas - did not get on with the others at all - and pork insulin. this is very stable, not many problems re insulin delivery if use sets as advised, and i dont forget to change them. Putting in the cannulas is the worst part of the pump - and can be unpleasant/ painful, but I need the pump, and cannot imagine ever not needing it. Ann

 

[donnellysdogs]

Well first night...

Gave shot of lantus at teatime as this would be when my 5 hours of novorapid would be gone. Instead of 17 units gave 15. Nurse said I would need more by phone (20 units) but figured I would start "high" bg and build up mdi doses.

Went from 5.9 to 8, 10 and 13.9 after tea...

Have then sunk to 4.5 (10g), 3.6 (15g) and 3.9 (15g) and 4.4 (10g) all during the night....

Roller coaster indeed....will see what levels go up to when I get out of bed.. (As they used to triple)...will let them go up today and just measure every hour as i'm gardening all day. No way can i afford to go low.. Need to get a complete picture of basal 24 hour before changing. I fortunately don't eat until pm at allso this is going to be a good basal trial.

Amazing as brain instead of being tired for sleep and waking up tired is buzzing all night... Suspect this is not just hypo levels but the lack of the aspartame chewing gum..I was like this Sat night too. Haven't ben sparky like this all night for decades!!!
Really weird...

.

 

[masonbason63]

I also do not use any data, in fact i don't use anything other than the basic pump. I still do all the calculations in my head, and have never bothered with putting in carbs etc i do not even use blood glucose meters that are compatible, i just need the pump for the flexible base rate - this has allowed me more freedom from fear of hypos, and the freedom to not to have to eat much glucose, and the freedom , mostly, from ketones, as there is always a minimal infusion of insulin, etc, it is not possible to generalise - but for me, life on a pump is maybe very tiresome, and sometimes very difficult, but it is an enormous improvement compared with the years and years before - i use less insulin - under 20 units p day - and have relatively few hypos - hypos were always a problem before,. Now hypos are mostly minimised, though there can be not so good days, if hypos are a problem, then i lower the base rate more - eg. from 0.2 units per hr to 0.175 p. hr (early hours rate), or lower if any exercise in day, or if worried about hypos, etc . I use the metal cannulas - did not get on with the others at all - and pork insulin. this is very stable, not many problems re insulin delivery if use sets as advised, and i dont forget to change them. Putting in the cannulas is the worst part of the pump - and can be unpleasant/ painful, but I need the pump, and cannot imagine ever not needing it. Ann

I'm finding this with the Insight pump it's so slow on using the handset, and boy oh boy I mean slow I am really starting to dislike the blooming thing, I've tried using the functions but I've got better things to do with my time, "it's not your iPhone"
the wife keeps telling me.

The bad thing is I've started bolusing with my pen as the pump process takes too long apart from the "standard bolus" but even that's a nuisances, the only thing that I'm pleased with is donnelly dogs getting me onto Rapids "nice one dd" their a godsend.

I feel that I could do with more training on this gadget I'm so pleased for DD and Spiker going bake to mdi I'd love to but have horrific memories of how unbalanced my control was, but I do now have a better understanding of the basal, bolus, carbs etc than I did 15 years ago when I stated a pump.

Oh yes the only two things I'm really enjoying about my insight pump is you can see exactly what's left in the cartridge and the coloured Pie charts