Back to basic pump settings..

[donnellysdogs]

First off please could this be changed by @Administrator to the pump forum please? Pump forum not an option on iphones.

Well... I've been told by my new tertiary care team at new diabetic pump clinic (different hospital) to go back to basic settings when going back to pump....

I find this incredible... i had a pump for 6 years and solely due to qty of occlusions had to come off it. So now two months on the situ is this:

To go from 1 to 7, 1 to 8 and 1 to 9 bolus ratio when last used to a 1 to 20!!! But if I disagree to go to 1 to 12 for every meal.

To only have 5 basal rates and istead of allowing my .88, 1.15, 1.25 that sorts DP and WP absolutely fine to have 3 hours of 0.8.

I only stop pump if I have 2-3 occlusions a week. 2-3 occlusions a week is horrendous amount!!

Target 7-8... normally for me 5-7.

Quite cheesed off as they are setting me back 6 years ago....

The problem was onlynocclusions and hypers because. Of them, not hypo's... the doc was also giving compliments to my exactness with everything and levels and being able to easily identify cannula probs because I am so OTT... so this has really rattled me....

Jyst even wondering if I should even bother going back to pump..having highs and being told to have a maximum of 5 basal rates in 24 hours (normally they only 4 different rates is not what suits my body and I'm totally fed up with health system after a GP totally mis prescribed an item today and I had to get it corrected. Said GP also said yesterday he would speak to my gastro consultant and get back to me and didn't....

Just fed up totally I guess...

Edited by Mod to tag Administrator about the problem with iPhones

 

[1abRat]

It's your body, your pump, I'd just ignore them and go off and do my own thing.

Hopefully once you've shown them that your settings work best for you and can demonstrate this with blood sugar records they'll back off a bit.

That target does sound terribly high, it wouldn't take much of an excursion to end up in double figures and I certainly wouldn't be happy even sitting at 7.0 all day so you definitely have my sympathies and once again, if it was me I'd just b*****r off and do my own thing the minute I left the clinic.

 

[iHs]

If people are having lots of hypos, then a higher bg level is required to try to prevent them from being too severe and require help from 3rd party

 

[GrantGam]

They will want to start you off with settings that drastically reduce the risk of hypos. It's how medical professionals operate. They would rather see you with raised BGL's initially than in A&E with severe hypoglycemia.

For obvious reasons, the above approach is intended for those who lack a firm understanding of diabetic related calculations, ratios, etc. You'll know yourself just how capable you are and if you feel confident then it's ultimately your decision

 

[donnellysdogs]

The only problem was hypers due to cannula failures. No hypo's.

The admittance I had to A&E was due to a hyper that I just couldn't get down and ketones had started.

So I can't fatjom out why tgey want to screw me up letting me be way too high with the risk of cannula failure....and being high in the first place makes things even less noticeable!!

 

[donnellysdogs]

Ok...

So this is my scenario-

I change everything to less insulin for bolus, basal, corrections. And put my acting time to 4 hours which it isn't.

So I am high... so tge reason I had to stop pump twice has been due to cannula failures... so that makes me at even more risk of being in a worse state with hypers and not being able to get levels down if cannulas fail.... it also makes me have to think of all the causes of everything being wrong instead of starting on a level where I was pretty **** good..... its beyond me...

To me, I wake at 4am to give jabs anyway.. I hot hubby at night and I have not been taken to hospital or needed ambulance due to a hypo at night on a pump.

I have a libre until the team decide what Cgm I have. The cgm was warranted more due to lack of fingers for testing and only one arm for libre.

So to me the risk of hypo is say 1/100. The risk of hyper is hugely above that, probably 50/100 at least.

If already high and corrections are etong and not being levels down etc I am more likely to be awake all night worrying of a cannula failure than I would of any hypo.

If I was a newbie I would go along with it but only 2 months ago the nurses levels were proved wrong within 12hours when I last tried going back on a pump. So why on earth put me all through that again plus the worry of cannula failure.

Tgey talking about Monday for starting again... I just don't even want the hassle of it all now. My hubby was shocked last night when I told him the MDT team said to go back to combo. He just saw it as going to make me ill with occlusions again...

I explained that they can't just give me another pump if I do not tolerate cannulas.

Have put email back to consultant explaining I'm not happy and my reasons why as the pump lady cc'd him in....

Just fed up with battling occlusions let alone battling forced upon high levels just because thats what they do with new pump patients.

Gggggrrrrrrr...

 

[tigger]

Hi @donnellysdogs sorry to hear of your frustrations. Can you get them to explain exactly why they want you to do this? It makes no sense. Is the issue that they don't believe your highs are because of occlusions? Or is it just ridiculous book following/computer ticking box attitudes?

I completely understand where you're coming from with the fear of canula failure as I have the same based on a lot of bad early sets, until I ditched that set type.When I was given my pump I was told to set it at a constant rate for 24 hours as that's what you do in the beginning. I said yes yes took it away and started adjusting based on what I knew of my DP, highs, lows, levels of activities and then tested til I got it right. The point is there's nothing to stop you going your own merry way unless there is something you need them to do and they require a tick box from you.

Maybe it might be worth taking your husband with to your next meeting if possible? It's often helpful to have a supporter sitting next to you as it helps you feel less attacked I find.

Good luck with getting the solution you need.

 

[donnellysdogs]

Hubby fortunately is present at every meeting but they do everything by email... won't see consultant till new year.

This was one sentence regarding basal settings..

"we always try and have basal rates in blocks rather than changing it each hour which we generally don’t find that to be effective)."

Quoted from consultants email "All of this is clearly going to be a "suck it and see" approach. In defence of the flat rate approach, we have had others who have been on pump therapy for some time where we (and they) have been surprised by it working when we have gone back to basics again, but equally I understand your reservations about this."

How many people that they have put back to basics were having cannula failures?? How many had poorly stomachs?

I'm just so wound up.

Why should I suck and see when my problems were hypers not hypo's from cannula failures.....

Grrrrrrrrr...

 

[himtoo]

hey Donnelly -- totally get where you are coming from -- only you know your D -- and it will be different to anyone else's

when I started on my pump just over a year ago I had no knowledge so ran with my D team ( flat for 24 hours )

-I now have 12 different rates in a 24 hour period for basal --- going lowest in the afternoon and building to nearly 4x afternoon level by 3am
( 0.55u at 3pm and 2.05u at 3am )

you should stick to your basal guns !!!

 

[donnellysdogs]

Thank you for comments.. you have lightened my thoughts and raised my mood a little.

I have sent a response back to them this evening with my reasonings but also with this:

"Surely it would be better for me to recognise a cannula failure after a bolus or when I'm asleep than struggling to know whether its bolus, basal rate or basal injection or corrections not working or whether its just simply a set failure.

Its this that I struggle with.. why you are wanting to add in 5 other worries for me rather than just have the set failure to worry about."

To add in to it they want me to take off 0.15 off my basal rates and add in a basal injection at night.. just incase of cannula failure overnight...

They don't even recognise that my levels when I had a 3am occlusion alarm tgat my levels were 5.0's before and peaked after the occlusion at 11.3. If I had been 8 -12 as they originally suggested running at that I would have peaked at least at 17 on that occlusion. I cannot see the point of adding in further back up of a basal injection as a just in case..

My hyper that caused me a&e came after my evening meal.. and as I aleat very miniscule food and tge same for 3-4 days I know when things are wrong and desperately so when my levels just go higher and higher and I start to get ketones for the first time ever in 30 years...

I'm really in despair though as it just feels like I'm argumentative....

 

[tim2000s]

In all honesty @donnellysdogs I think you need to get on the phone with the consultant, and either you or your hubby needs to be persistent and not take no for an answer and make life hell for them until they talk to you.

Conversations via email are often challenging, and if they refuse a phone conversation, then make a complaint against them. Then they have to take you seriously.

 

[donnellysdogs]

The pump lady has now sent me an email apologising as she made a mistake calculating!
(I pointed it out last night.

They appear to have basically calculated tgeir doses on basal from just basal doses without adding in that I have to have the same dose of bolus as well pre getting up.. ie at 4am I have 2.5 insulatard and 2 standard correction with any extra as suggested by meter settings. Then pre hour getting up I have to have 6 units of more insulatard with another 4.5 units plus any corrections.. so they are not allowing for my correction bolus as my basal at the correct times.

So after I have sent 2 emails back to them last night I have now had an apology for miscalculations by pump lady and she has informed my consultant of correct figures.

And I'm meant to trust their advice?????

I am now having to wait for the consultant to get back to me....

They want it in writing probably to cover their bums incase somebody musinterprets spoken words or amounts....normally they would write your basic settings down etc but they can't rely on a patient to do that at end of phone.

I've had my trust in NHS people completely knocked due to my cancer treatment, local hospital not specialists with stomachs/diabetes and supposedly going to tertiary care at this new hospital.

Makes me laugh that they offered me psychological diabetes help lasst night by email. ..... they can't even see that they are the cause of my stress on this occasion.