# another kick in the teeth re my pump



## SilentAssassin1642 (Jan 7, 2010)

Just had a phone call from my DSN re a pump

she spoke to the proff guy, and he has said NO i don't meet the guidelines (WHAT?!) because of my good HbA1C. Yet, despite me explaining countless times of my swinging sugars, and quite frankly nasty hypos THAT I DONT KNOW ARE COMING, they aren't listening to me. And despite the fact I have this nueropathy, THEY DON'T CARE

I hate this. I HATE IT

She has said I have to discuss things in march when I go. That's all well and good but I'll likely not be anywhere near southampton come march.

What should I do? Deliberately get my HbA1C higher and start having nastier hypos?

I can't deal with this anymore. I am about to have a total break down over it


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## Einstein (Jan 7, 2010)

You're entitled to a second opinion, why not seek one, but make sure from a completely different hospital and consultant with no ties to your existing hospital.

It will mean probably they'd want to take over your care so they can monitor you and see how your profile fits.


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## SilentAssassin1642 (Jan 7, 2010)

Einstein said:


> You're entitled to a second opinion, why not seek one, but make sure from a completely different hospital and consultant with no ties to your existing hospital.
> 
> It will mean probably they'd want to take over your care so they can monitor you and see how your profile fits.



this WAS my second opinion after dealing with b***h doctor last time. Well, we're moving soon, I'll go to a new hospital and I will fight this.

I'm SO upset over it. My DSN sounded really quite upset too


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## Freddie99 (Jan 7, 2010)

Eastbourne DGH my dear. Dr Bending and Dr Lipscomb are very understanding people who will fight your corner.


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## SilentAssassin1642 (Jan 7, 2010)

what do they want me to do? deliberately let myself go so hypo once a week or so that i end up in hospital? They obviously want my HbA1C higher, despite the fact its only so low through the sheer amount of hypos i was having.

WHY DONT THEY GET IT??????????/

I am so so so so upset over this. Bless my dsn, she sounded so so so upset about it to. And she suggested that I keep a diary of what things go wrong and when to shove in that arses face when and if i go in march. It's doubtful, as i may have moved away. But still.


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## bev (Jan 7, 2010)

Sam, you need to speak to John Davis at INPUT. If you really want a pump - he is the man to get you one.Bev


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## SilentAssassin1642 (Jan 7, 2010)

bev said:


> Sam, you need to speak to John Davis at INPUT. If you really want a pump - he is the man to get you one.Bev



thanks bev, do you have contact details for him?


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## rachelha (Jan 7, 2010)

salmonpuff said:


> thanks bev, do you have contact details for him?



Sam - I contacted him through the Input website and got a reply the next day


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## bev (Jan 7, 2010)

http://www.input.me.uk/


Look under the contact details and send him an email - he will respond.Bev


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## am64 (Jan 7, 2010)

Sam ....you poor thing  for you...if you and matt are thinking of moving could you do a little research into local Diabetic care and see which area is best ... aswell instead of having to keep another diary could you not cut and paste all your posts from here and your blogs etc and stick them all together as evidence of the 6months/year etc ...just a thoughts  big hugs


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## SacredHeart (Jan 7, 2010)

I was just going to suggest the same thing. Ring round the hospitals of areas you're interested in, and try and speak with a DSN there, maybe?


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## cazscot (Jan 7, 2010)

Hi Sam, I dont have anything to say but just wanted to send you (((Hugs))) x


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## am64 (Jan 7, 2010)

could do a survey on here ...we have people from all over ...Northe is it possible


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## Northerner (Jan 7, 2010)

am64 said:


> could do a survey on here ...we have people from all over ...Northe is it possible



I think any member can set up a poll - when you set up a new thread, scroll down to the additional options before posting to 'post a poll'


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## Steff (Jan 7, 2010)

am64 said:


> could do a survey on here ...we have people from all over ...Northe is it possible



sorry if im sounding ignorant but what would the survey be on?


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## am64 (Jan 7, 2010)

um find a good place for sam to move to!! no...... level of care though out country ...have to think of how to word it ....brain connecting....
what are your thoughts Sam


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## Steff (Jan 7, 2010)

am64 said:


> um find a good place for sam to move to!! no...... level of care though out country ...have to think of how to word it ....brain connecting....
> what are your thoughts Sam



 sarcasm huh


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## SilentAssassin1642 (Jan 7, 2010)

ooooo sounds like a plan  Good idea am 

Also the getting all my posts together from here for the diary is utterly brill!


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## shiv (Jan 7, 2010)

yeah, John from Input emailed me back the day after i emailed him.


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## am64 (Jan 7, 2010)

shiv said:


> yeah, John from Input emailed me back the day after i emailed him.



go for it sam... this is quality of life you're after xxx


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## SilentAssassin1642 (Jan 7, 2010)

email sent. I've told this guy about the highs, about the lows (the reason for my good hba1c), the fact I feel trapped by MDI's and I can't seem to get things right despite carb counting. I've explained that my quality of life is affected by MDI's and that I feel trapped and scared because of the highs and lows.

I hope he replies soon. 

I've started my little diary too. At the back of my new notebook (in which i am logging my 101 in 1001 challenge too). I'll be taking it to whichever clinic i end up at!

thank you guys sooooo much for the advice. I'll write to my local mp if i have to!


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## Sugarbum (Jan 7, 2010)

shiv said:


> yeah, John from Input emailed me back the day after i emailed him.



I contacted him about mine. He called me the next day. He is the King pin of pumping Sam, get on the blower....

Sam, its bloody annoying I know. The benchmark of getting a pump is not your HbA1c, it is a number of factors about how diabetes is for you. In a very annoying team that dont seem to want to give you a pump- its typical they have homed in on your hba1c.....

Where are you moving to? Eastbourne?


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## SilentAssassin1642 (Jan 7, 2010)

Sugarbum said:


> I contacted him about mine. He called me the next day. He is the King pin of pumping Sam, get on the blower....
> 
> Sam, its bloody annoying I know. The benchmark of getting a pump is not your HbA1c, it is a number of factors about how diabetes is for you. In a very annoying team that dont seem to want to give you a pump- its typical they have homed in on your hba1c.....
> 
> Where are you moving to? Eastbourne?



I'm not sure where we're moving yet, we have to start looking. Could be anywhere, we just want to get out of hampshire i think.

This is the main body of what I've said 

_I have had diabetes for 14 years and am on MDI's, but I'm really not getting on with MDI's at the moment, nor have I been for years! In the past year I have come out of a huge stage of rebellion with an hba1c through the roof and thus the onset of complications including background retinopathy and nueropathy. Since coming out of that rebellion, my Hba1c has dropped considerably from through the roof, to 8.4, to 7 and now to 6.5. The hba1c is the main reason i have been refused help by my team. however the problem with the a1c is thus, it is only 'good' because of the sheer amount of rather nasty hypos I have been having. I'm talking 3 or 4 hypos a day (which often I can't feel!), all with levels less than 2.0. They really get in the way of life, and there are times when I am utterly terrified to go out incase I have a hypo. Because of this, I am checking my blood sugars up to 20x a day. So as you can see, it's really affecting my quality of life.

I feel completely constricted by MDI's, I am coming to completely hate doing them and feeling like I have to eat at certain times because of them. The thought of injecting really gets me down. In short, I hate it. 

I also suffer from incredibly high morning glucose levels. Though I'm not sure if this isbecause of the dreaded dawn phenomenon. However, I am very VERY sensitive to lantus. Even though myself and the nursing team have come up with the best option for that (17u), my morning levels aren't constant. I often wake to levels higher that 10mmol/L. A change in lantus by just 1 unit less would mean I wake to levels of around 20 - trust me, I've tried it!

My specialist team however, won't listen to my arguments. They say I don't meet the NICE guidelines due to the hba1c, but surely everything else should counterbalance that? On MDI's I feel like I don't have a brilliant quality of life, it gets in the way and I feel trapped. The sheer amount of hypos I have to should surely be a good argument for me getting a pump? As well as the lows, I get a lot of highs too and see myself above 20 at least once a week. All of this despite carb counting. I feel like I can't win!

Do you have any advice for me? My DSN has told me to keep a diary of things until march when i go back to clinic. But given the attitude of my team up until now I don't feel like it will work. And I am half tempted (as I'm moving away soon anyway), to find another hospital._


Obviously left out the formalities and whatnot.


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## am64 (Jan 7, 2010)

excellant email sam fingers crossed!


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## Sugarbum (Jan 7, 2010)

Good one Sam. I think there is plenty of content there to give him some background idea on you.

Did you inc your phone number for him, he is good at returning calls pretty quick...


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## Sugarbum (Jan 7, 2010)

....oh BTW, if you go through my friends on facebook sam, I am friends with him. He has a group too. Think it is just called input. Will look and send you an FB link in a sec. 

Might be a good source to see what everyone else is going through...


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## SilentAssassin1642 (Jan 7, 2010)

Sugarbum said:


> Good one Sam. I think there is plenty of content there to give him some background idea on you.
> 
> Did you inc your phone number for him, he is good at returning calls pretty quick...



oh bum, i forgot to put my phone number in. I'll have to email again!


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## Sugarbum (Jan 7, 2010)

salmonpuff said:


> oh bum, i forgot to put my phone number in. I'll have to email again!



Wallychops


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## SilentAssassin1642 (Jan 7, 2010)

Sugarbum said:


> Wallychops



thats me


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## Viki (Jan 8, 2010)

Sam i meant to say the other day - I asked my DSN about you and she said keep as detailed diary as you can (BG, any carbs you eat, the QA you take for it and any corrections). It will help them with your carb counting too.

Also make little notes aboutt he decisions you are making and why as this will help you when your looking back for patterns and stuff.

This way you can prove that your HbA1c is a "false" indication of your control and is due to the wild swinging.

I know you like your comp and ive got a few templates ive made in excel if you want them? then you could adapt them to suit you? 

Let me know. im sure my record keeping was what made my pump journey so smooth because they couldnt argue with the figures.


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## SilentAssassin1642 (Jan 8, 2010)

Viki said:


> Sam i meant to say the other day - I asked my DSN about you and she said keep as detailed diary as you can (BG, any carbs you eat, the QA you take for it and any corrections). It will help them with your carb counting too.
> 
> Also make little notes aboutt he decisions you are making and why as this will help you when your looking back for patterns and stuff.
> 
> ...



 eee gads dont give me more reason to fail at my resolution of less computer time  ha, yeah i love trying and playing with technical stuffs on the comp so that sounds fab! 

I started a written diary yesterday, but didn't think to put BGs and carbs and stuff in it. That's a really good idea thank you 

And bless you for asking your DSN about me  that's really sweet of you! I wish I had your diabetes team!


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## Viki (Jan 8, 2010)

Cool - ill dig some out for you.

Do you want to PM me your email address?


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## shiv (Jan 8, 2010)

could i be cheeky viki and ask for a copy as well? any more fuel to my 'i want a pump!' fire would be great!


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## SilentAssassin1642 (Jan 8, 2010)

Its a really ace little programme shiv! I've been having loads of fun this afternoon playing with it


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## shiv (Jan 8, 2010)

can you send it to me?!


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## SilentAssassin1642 (Jan 9, 2010)

gosh viki, playing with your excel sheet has shown me that my insulin doses are HUGE, like over 30u per day most days 

is this normal????? I'm putting a hell of a lot of numbers in the correction boxes!


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## rachelha (Jan 9, 2010)

VIki - it sounds like you spreadsheet is really good - could I get a copy too please?


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## Viki (Jan 10, 2010)

rachelha said:


> VIki - it sounds like you spreadsheet is really good - could I get a copy too please?



At this rate i might start charging!!  If any one wants it just PM me your email and ill send it over 

Glad its working for you Sam, i think sometimes just seeing the numers all together can show you just how often your out of target. Certainly was a bit of an eye opener for me!!


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