A few questions from a pumper to be(hopefully!)

[hyper-Suze]

Rightio, so I have a pre pump assessment and this is a week monday! I then have a check up with my main consultant 10 days later so hopefully, by then, a decision will have been made. But if I can ask a few questions as I am unsure what to expect in this meeting...

From people pumping for a long time, recently pumping and those also going through the process:

1) What did your assessment consist of? Was is a lot of questions or an educational session, demo etc or physical -blood test etc

2) What have been peoples hurdles to overcome on the pump?

3) Why have people wanted a pump in the first place or what have they wanted the pump to resolve, and did it?

4) Has anyone been refused a pump and why?

Cheers all...appointment at 10.30am ...will be camping out ready and waiting hours before!!!!!!

 

[trophywench]

Oh - eggsellent Suze! - had no idea you were 'that close' when we met - did you?

I could have shown you loads more had I realised it wasn't just a passing interest!

The things to 'qualify' you for a pump are (taken straight from NICE)

attempts to achieve target haemoglobin A1c (HbA1c) levels with multiple daily injections (MDIs) result in the person experiencing disabling hypoglycaemia. For the purpose of this guidance, disabling hypoglycaemia is defined as the repeated and unpredictable occurrence of hypoglycaemia that results in persistent anxiety about recurrence and is associated with a significant adverse effect on quality of life

or

HbA1c levels have remained high (that is, at 8.5% or above) on MDI therapy (including, if appropriate, the use of long-acting insulin analogues) despite a high level of care.

Be guided by the medics on the day. My (then) latest A1c was 8 point something, and the lowest prior one ever in my whole life was 7.2. It had never, ever been as high as 9. (since diagnosis, obviously)

Be aware of subtle hints eg "You have had some awful hypos haven't you?" - don't say eg "Yes, but that was 15 years ago when I was on XYZ insulin and obviously not able to help myself much cos I didn't know how to Carb Count then". See what I mean? - The answer would be, 'Yes, I have' LOL

You will probably have to do a tick-box Hypo questionnaire. It's entirely straightforward. In my case I had to recall a few weeks previous when I was actually having an unexplained hypo after hypo after hypo phase, and answer with that in mind. You have to put out of your mind the fact (if indeed you could do this) that for at least some of them, you could see afterwards what you might have done 'wrong'. That's not the point.

 

[trophywench]

Hurdles

It was OK for the first fortnight cos Hey, it was new, I was bound to not really 'get' it at first, I can ride this - and will soon come out the other end, won't I?

Week 3 I thought, Oh, I dunno if I'm gonna get this.

Week 4 I started to think This is vile, I have no idea whatever what the hell I am doing, this is perfectly horrible and I had that 'lost, alone and entirely unloved' feeling I certainly had in 1972. Where I just wanted to give it all back (the diabetes, the pump and everything) and curl up in a corner, cry and suck my thumb. It was literally, exactly like being diagnosed in the first place. Horrible, horrible, horrible. I don't want to be beaten, but I may have to give up.

Week 5 Not much better, don't let yourself think about it as much as you have and perhaps ......

Week 6 Hang on, 'stuff' is actually starting to work now!

Week 7 Hey - I like this pump - look at my 7 day average on my meter! (if you ignore that 23.2 after that curry I never bolussed for ROFL, so calculated manually)

Week 8 I'm hooked .........

And it just got better and better and better ....... it's now 'the norm'.

And you have to remember I'm a technophobe.

The main thing the pump can do that MDI can't, is to mimic what your body would be doing, were it to not be diabetic. And that was part of the huge learning curve. The preconceptions about what my body did and didn't do gleaned from MDI weren't much help. In fact a lot of em turned out to be entirely wrong. That was part of my problem initially with the pump - I no longer understood what my body was doing. Let alone not understanding the electronic thing. I used to have 15u Levemir in the morning and 5u at night, so my body used LESS insulin during the night. Oh No It Didn't. The Levemir was evidently lasting quite a lot longer than 18 hours and the extra 5u was just boosting it. That took a lot of getting my head round.

 

[trophywench]

Why did I want a pump

because I had done the MDI and the carb-counting to the nth degree. I had split this and split that, I had changed the timing of this and the timing of that, and tested basals and tested insulin to Carb ratios and tested my Coreection rate and precisely measured every drink of Lucozade and weighed my food and kept meticulous BG/food/insulin dose diaries and tried to analyse it, there has never been a pattern to any of my BG diaries, ever and and and - it seemed unless I spent 22 hours out of 24 looking after my diabetes, my BG was frequently crap. And my A1c reflected it. And though I apparently have hardly any complications other than retinal 'diabetic changes', my luck has got to run out 'soon', hasn't it? and it will all land like a ton of bricks with my luck .... and frankly Suze - time is getting to be just a bit finite for me now.

 

[Robster65]

This is a fascinating thread to read for a non-pumper (but a bit bi-curious (in the MDI/pumping sense 😱)).

Carry on, I'll be reading any further updates

Rob

 

[trophywench]

Don't knock anything till you've tried it, is always my motto Rob.

ROFL

 

[Robster65]

We sing from the same sheet !

I doubt I'd qualify for a pump but will enquire next week when I see the DSN anyway. Nothing ventured, etc. 😉

Rob

 

[Pumper_Sue]

Rightio, so I have a pre pump assessment and this is a week monday! I then have a check up with my main consultant 10 days later so hopefully, by then, a decision will have been made. But if I can ask a few questions as I am unsure what to expect in this meeting...

From people pumping for a long time, recently pumping and those also going through the process:

1) What did your assessment consist of? Was is a lot of questions or an educational session, demo etc or physical -blood test etc

2) What have been peoples hurdles to overcome on the pump?

3) Why have people wanted a pump in the first place or what have they wanted the pump to resolve, and did it?

4) Has anyone been refused a pump and why?

Cheers all...appointment at 10.30am ...will be camping out ready and waiting hours before!!!!!!

Hi Suze,
It's not a question as to why any individual wanted a pump, it's why do you want a pump and what can you achieve with one.
You also need to make sure they realize you know it def is not plug and play and there is a lot more work involved than MDI. (pump is only as good as the user).
Take along your records as in food diary,blood test results, corrections etc. Then show them why it didn't work if it didn't ie as in basal insulin does not mime your own bodies pattern.

4) Has anyone been refused a pump and why?

Yes I was refused a pump. Why? Because the consultant's down this end of the country were and are in most cases pig ignorant and knew nothing about animal insulin and refused to find out about using it in a pump. 😡

Just do not take no for an answer. I had and still have a fantastic GP who backed me all the way. Between us with the help of INPUT we took on the PCT and won funding. I self funded for 8mths and then was funded the consumables for my Cozmo. I am now on my 2nd pump which is fully funded by my PCT.

What have been peoples hurdles to overcome on the pump?

Basal testing and having to take the leap of faith and skip meals.
Your 1st 6 weeks will be very hard work due to lots of testing and sleepless nights.
So do be warned. If you have a dolly put a parachute on it as it might just get thrown a few times in frustration 😱
Buy yourself the book pumping insulin by John Walsh from amazon it's the pumpers Bible and worth it's weight in gold.
Have a look here as well http://www.input.me.uk/alt-insulin-pumps/how-can-an-insulin-pump-help-2/

Good luck

 

[Ellie Jones]

1) What did your assessment consist of? Was is a lot of questions or an educational session, demo etc or physical -blood test etc

My clinic doesn't do assessment,

I had to go through a 3 year battle to get funding

2) What have been peoples hurdles to overcome on the pump?

I can't say I had any hurdles

3) Why have people wanted a pump in the first place or what have they wanted the pump to resolve, and did it?

I wanted the pump because I had DP and EP plus an sensitivity to insulin so require minute doses of insulin for control which you can get with pen/syringe delivery

Yes these issues have been resolved with the pump

4) Has anyone been refused a pump and why?

Constantly every 3 months during my battle to get one!

When I spoke to my DSN about a pump, she told me she very much doubted that I would get one as they were as rare as hen's teeth in our area😱

when I asked my consultant for one, you would have thought that I had found out some very top classified 'for your eyes only' MI5 information that I should never know about..

Yes there was many times in the 3 years I thought I would never be given one, and many times were I really felt like throwing in the towel.. But some how always found the strength to carry on...

 

[trophywench]

Suze! - how are you doing? I hope you've stopped panicking now?

Once 'they' have decided 'themselves' you'd benefit from a pump, from my own experience you really aren't on your own at all, it's not like a job interview .... they will be working with you on this, not against you.

Please let us know how you are feeling?

 

[Jennywren]

Hope this helps ....

1) What did your assessment consist of? - Some blood tests , some form filling and an informal chat

2) What have been peoples hurdles to overcome on the pump?-Ive been really lucky , got on with the pump really great , just some little things like working out whether to change cannula after 2 or 3 days ,where to plae the pump etc

3) Why have people wanted a pump in the first place or what have they wanted the pump to resolve, and did it? I didnt want a pump at first although it had been suggested many times , i decided that maybe i should try one as i had dawn phenomenon and eratic blood sugars and yes the pump resolved both .

4) Has anyone been refused a pump and why?- No

 

[everydayupsanddowns]

Rightio, so I have a pre pump assessment and this is a week monday! I then have a check up with my main consultant 10 days later so hopefully, by then, a decision will have been made. But if I can ask a few questions as I am unsure what to expect in this meeting...

From people pumping for a long time, recently pumping and those also going through the process:

1) What did your assessment consist of? Was is a lot of questions or an educational session, demo etc or physical -blood test etc

2) What have been peoples hurdles to overcome on the pump?

3) Why have people wanted a pump in the first place or what have they wanted the pump to resolve, and did it?

4) Has anyone been refused a pump and why?

Cheers all...appointment at 10.30am ...will be camping out ready and waiting hours before!!!!!!

Hope your pump-assessment went well.

1) Mine was just a bit of a chat about how I managed control on MDI, what I thought a pump might offer and how much I knew about it.

2) As recently as a year ago I was pretty convinced that pumping was not for me. Attachment and the potential failure of infusion sites where all your insulin 'eggs' are in one rapid-acting basket. However over the last 12 months I came to realise that as good as my control ever got on MDI I was still going to be plagued by too many hypos, and that whatever changes I made the potential improvements of a pump would still be there waiting and untried.

3) Basal inaccuracy (my body doesn't suit a flat-ish delivery of basal) On MDI I constantly have a bit too much or not quite enough. And a tiny basal inaccuracy creates havoc with my meal doses. Additionally a pump will provide almost infinitely tweakable doses. No more rounding meals/corrections up or down to clumsy whole units.

Will it work? I don't know. I started on Saline yesterday. Ask me in 6 months!

 

[hyper-Suze]

Wow, thanks everyone for all of your replies!

Good luck Mike - hope your new gadget works out well for you! Keep us all posted!

Thanks to all for your honesty and sharing your reasons. I think I was asking, not to 'use' them in my assessment but to give me some time to think and reflect on my journey, obstacles and what I want to acheive with this.

Jenny(TrophyWench) - I have had discussions (and sometimes arguements) with my consultant about a pump, but that has spanned over 3 years and it has taken me this much time, to re-learn everything relating to diabetes, carb counting and to respect my illness. I had sort of put it to the back of my mind until my assessment letter came through, which was in Oct, so at the meeting in Sept, I prob didn't come across as enthusiastic, as I felt I would probably be waiting for another 10years for one!

I am currently setting up a local t1 support group and my co-lead has a pump so at the moment, I think I am 'doing her head in' asking so many questions about them!

Rob - no comment about the bi-curious!🙄

ANOTHER QUESTION - on the pumping link, it has a 'sticky' about the basal test. Can this be done on MDI to check if my background insulin is enough or is this soley for pumpers?

 

[trophywench]

No - MDI ! - the one on t'other forum was written using amalgamated advice some of which was gained on carb counting courses, some from people like Gary Scheiner and John Walsh, and some from people across the pond on Newsgroups in the past. Link

http://www.diabetes-support.org.uk/info/?page_id=120

Plod down the page to the testing section.

It really isn't any different for pumping except of course it's fast-acting insulin throughout. You still have to do the time blocks and missing meals and all that jazz. (I don't personally hold with just having a protein-only meal, in case you are a person who needs to bolus for protein. Unless you are otherwise ill, are preg or have mega stega DP)

 

[everydayupsanddowns]

ANOTHER QUESTION - on the pumping link, it has a 'sticky' about the basal test. Can this be done on MDI to check if my background insulin is enough or is this soley for pumpers?

I would ABSOLUTELY recommend basal testing on MDI Suze. It improved my control massively when I found that technique. These days whenever 'normal' doses/ratios/corrections stop working as expected my first thought (and it's usually right) is that my basal needs tweaking.

Have a go. You won't look back!

 

[Flutterby]

This is a very interesting thread as my GP is making increasing noises about the possibility of me gettting a pump. I'm a bit uncertain - no a lot!! but I shall, if you don't mind haunt these pumping threads for a while to learn a little more. Off now to do something unrelated, I've thought about this all morning and it's doing my head in!!

 

[trophywench]

Karen

I'm 40 mins (if that) away from you by car.

If you want to play pumping - shout up. Any time. And that applies to anyone reading this who is in striking distance as far as I am concerned. If a few pumpers volunteered to do the same - hell, there must be enough of us ! - we could have a mini-meet somewhere for pumpers and prospectives?

Incidentally, I've said this before - pumping was actually the sole reason I came on this forum more when I did, having originally joined when it was very very new and wasn't the buzzing place it is now; I needed help 'right now' for my probs at that time and it wasn't to be had here ....... then. 'My' forum just didn't have all that many pumpers ...... but the growth has been amazing in just the last few months .....

It helped stop it all being quite so scary ....

 

[Flutterby]

I can't thank you enough for that, if things start moving seriously towards me getting a pump I would love to take you up on that offer. much appreciated. Love Karen.

 

[Pumper_Sue]

Karen

I'm 40 mins (if that) away from you by car.

If you want to play pumping - shout up. Any time. And that applies to anyone reading this who is in striking distance as far as I am concerned. If a few pumpers volunteered to do the same - hell, there must be enough of us ! - we could have a mini-meet somewhere for pumpers and prospectives?

....

Where you been TW, asleep in the corner? Most hospitals have pumper meets so people can see and meet other pumpers the pumpers list on the www also arranges meets. They are all over the country.

 

[Flutterby]

Where you been TW, asleep in the corner? Most hospitals have pumper meets so people can see and meet other pumpers the pumpers list on the www also arranges meets. They are all over the country.

I dunno I think I'd rather meet up with someone I know so I can ask loads of stupid questions!!