# Progress... of a sort!



## pottersusan (Jan 15, 2012)

A different consultant who talks to me as if I have a brain!

A more clever meter very soon  

Talk about counting carbs 

A plan for the next few months 

But still testing my blood every 1-2 hours  (my poor fingertips!)

Still injecting every 1-2 hours 

Why do you have to stamp your feet to make progress?

If this consultant messes around I'll set my surgeon on him with a lancet!


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## Northerner (Jan 15, 2012)

Glad to hear you have made some progress Susan - and always a big bonus if the consultant actually listens to you! Here's to more progress soon!


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## teapot8910 (Jan 15, 2012)

That's great news Susan, hope it continues for you


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## Robster65 (Jan 15, 2012)

Pleased you have a better consultant. So what was said about pumping ?

Was he for or against and did he put obstacles in the way ?

And has he ever had to inject himself umpteen times a day whilst trying to work out the amount each time ?

Rob


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## trophywench (Jan 15, 2012)

Oh - brill Susan!

Isn't it a pathetic reflection on the NHS that many of us get excited when we speak to an HCP who recognises the fact we are adults?


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## slipper (Jan 15, 2012)

Well done susan, glad you are getting progress.

My PN, told me off as though I was a naughty child, for buying strips and testing.


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## Steff (Jan 15, 2012)

Susan that is great news really chuffed for you .


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## pottersusan (Jan 20, 2012)

Robster65 said:


> Pleased you have a better consultant. So what was said about pumping ?
> 
> Was he for or against and did he put obstacles in the way ?
> 
> ...



It was an interesting appointment - with the diabetes dietitian, diabetes nurse and another doc who is learning about diabetes (more a conference really!). I took along all the data I had collected on a spreadsheet - which gobsmacked them. 
Pumping was talked about, but I must learn to count carbs first (is it my fault that this hadn't been mentioned by the previous consultant?!) - this is not as difficult as they would have you believe. I think they dumb down their service to the lowest common denominator, rather than actually assessing what the patient is capable of.
I did learn a few things I should have been told about before, which would have made my life a lot easier. I also brought up the subject of the glucose monitor. Money did rear it's ugly head. I decided I would give him a chance and see what happens at my next appointment with him. At least he was honest enough to say he knew some of the answers but not all of them. He can't be too anti pumping as the next patient was on a pump.
Next time I'm going to hit him hard - no nice guy stuff!! If I'm not happy with progress I intend to send my surgeon round, with lancet in hand, to sort him out!  
MDI are working much better, but as you know it's no fun keeping on jabbing yourself.


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## Northerner (Jan 20, 2012)

More progress Susan! And there can be no doubt amongst them about how determined you are to get the very best you can from them, so I hope that they recognise it and act quickly to help improve your quality of life. Keep us posted!


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## Robster65 (Jan 20, 2012)

Don't forget to push the quality of life issue. MDI isn't intended to be more than 5 or 6 times a day. Your emotional, physical and mental health will suffer if they maintain you on MDI.

A pump is the only way forward for you and they need to ensure all things are in place as quickly as they can.

Have you tried contacting INPUT, who advise on obtaining pumps from the NHS ?  (I think the lady who runs it has just joined the forum) 

Rob


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## pottersusan (Jan 25, 2012)

Robster65 said:


> Don't forget to push the quality of life issue. MDI isn't intended to be more than 5 or 6 times a day. Your emotional, physical and mental health will suffer if they maintain you on MDI.
> 
> A pump is the only way forward for you and they need to ensure all things are in place as quickly as they can.
> 
> ...



I had a useful meeting with the diabetes dietitian today. I've been recording everything I've beeen eating, bg and insulin,  so she had plenty to look at to help her decide on my carb/insulin ratio. Not surprisingly, this took some time as my response to insulin is unpredictable!  She was struggling to find any patterns or any reasons for the strange behaviour of my bg! In some ways it was quite comforting that she couldn't understand it - I've spent many hours looking at all the figures trying to find some logic and there is none.
I've now got a more intelligent meter which recommends how much insulin I need - it will be interesting to see whether it's better at working it out than me!  The dietitian suggested reducing the number of times I test, but I said no, because I don't always get symptoms of hypos, and I think testing less would be dangerous. She couldn't really argue with that!

yes I have contacted INPUT who suggested I ask my GP to refer me to Bournemouth who are very pro pump. The last time I saw the consultant I met a lady in the waiting room who is on a pump. She goes to B'mouth occasionally, but is basically managed in Dorchester. This would be my preferred option. At my next consultant appt I will be asking for a cgm and a pump. I saw my GP at the beginning of the week and she thinks I need a pump. I will visit her again before my next consultant appointment and ask her to write to the diabetes cons. about a pump & cgm. Everyone is keen to say I'm 'special' - now they really need to put their money where their mouth is!


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## Robster65 (Jan 25, 2012)

pottersusan said:


> I had a useful meeting with the diabetes dietitian today. I've been recording everything I've beeen eating, bg and insulin, so she had plenty to look at to help her decide on my carb/insulin ratio. Not surprisingly, this took some time as my response to insulin is unpredictable!  She was struggling to find any patterns or any reasons for the strange behaviour of my bg! In some ways it was quite comforting that she couldn't understand it - I've spent many hours looking at all the figures trying to find some logic and there is none.
> I've now got a more intelligent meter which recommends how much insulin I need - it will be interesting to see whether it's better at working it out than me!  The dietitian suggested reducing the number of times I test, but I said no, because I don't always get symptoms of hypos, and I think testing less would be dangerous. She couldn't really argue with that!
> 
> yes I have contacted INPUT who suggested I ask my GP to refer me to Bournemouth who are very pro pump. The last time I saw the consultant I met a lady in the waiting room who is on a pump. She goes to B'mouth occasionally, but is basically managed in Dorchester. This would be my preferred option. At my next consultant appt I will be asking for a cgm and a pump. I saw my GP at the beginning of the week and she thinks I need a pump. I will visit her again before my next consultant appointment and ask her to write to the diabetes cons. about a pump & cgm. Everyone is keen to say I'm 'special' - now they really need to put their money where their mouth is!


 
Well done you ! 

They're very keen to leave you to sort it all out alone but they can't understand it nor offer you any tools to manage it better.

You'd think the dietician would understand the way your 'ectomies' have affected your digestion and subsequent control. It does make you despair.

Keep pushing for the pump/cgm combo but you could manage with a meter still, as long as they let you test as often as you need. But the cgm could be argued for at night time.

WHy do they always suggest testing less often ? Numbskulls! 

Rob


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## Northerner (Jan 25, 2012)

Sounds good Susan, I hope you find the new meter helpful - and that you get that CGM and pump before too long!


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## pottersusan (Jan 27, 2012)

Northerner said:


> Sounds good Susan, I hope you find the new meter helpful - and that you get that CGM and pump before too long!



So do I - said with feeling! having had hypos yesterday and today, but having taken less insulin than the meter suggested! Yesterday, somehow with little insulin in my system i managed to drop 8.4 bg!? Today it was only(!) a 4.9 drop.
The dietitian, strangely didn't know about cgms that give you a warning. She thought you had to wait until you downloaded to your pc! The patient shouldn't really know more than the 'expert' should they?


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## Northerner (Jan 27, 2012)

pottersusan said:


> So do I - said with feeling! having had hypos yesterday and today, but having taken less insulin than the meter suggested! Yesterday, somehow with little insulin in my system i managed to drop 8.4 bg!? Today it was only(!) a 4.9 drop.
> The dietitian, strangely didn't know about cgms that give you a warning. She thought you had to wait until you downloaded to your pc! The patient shouldn't really know more than the 'expert' should they?



Sounds like her information is a bit outdated - this used to be the case until quite recently I believe as I have heard stories from people here having to do that in the not-too-distant past!

Sounds like you need to be cautious about the meter's recommendations, but I hope it is helping generally


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## Robster65 (Jan 27, 2012)

The expert (meter, not dietician) works on the ratios you tell it. If, as may be the case for you, your ratios are changing on a daily or hourly basis, it could well be a bit of a white elephant.

But you might find you can tweak it to your needs. There are a few really good experts (dieticians, etc), many who are adequate and a fair few who are of no use whatsoever.

The problem with them is, unless you're able to feed them the right information and ask the right questions, they very often don't know what they can do for you. And since they're the expert and we're the patient, we can't be expected to know what information or questions they need.

But you might be lucky one day. Then handcuff yoruself to them until they tell you all you need to know!

Rob


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## pottersusan (Jan 30, 2012)

Robster65 said:


> The expert (meter, not dietician) works on the ratios you tell it. If, as may be the case for you, your ratios are changing on a daily or hourly basis, it could well be a bit of a white elephant.
> 
> But you might find you can tweak it to your needs. There are a few really good experts (dieticians, etc), many who are adequate and a fair few who are of no use whatsoever.
> 
> ...


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## Robster65 (Jan 30, 2012)

pottersusan said:


> Robster65 said:
> 
> 
> > The expert (meter, not dietician) works on the ratios you tell it. If, as may be the case for you, your ratios are changing on a daily or hourly basis, it could well be a bit of a white elephant.
> ...


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## pottersusan (Feb 1, 2012)

Robster65 said:


> pottersusan said:
> 
> 
> > Just to clarify Susan. FOr most people, the ratio does vary from breakfast to dinner and tea, and then through the night. But for most, it will be the same set of ratios day after day. Generally less sensitive in morning and evening and more sensitive at midday. But there's variations on this.
> ...


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## martindt1606 (Feb 1, 2012)

Hi Susan,

just caught up with this thread and thought I'd add my twopenneth.

As I don't have a pancreas to complicate matters I have found that my bolus injections require a *consistent insulin to carb ratio throughout the day*.  They do not vary based on time of day.

I am injecting 1 unit of Novorapid for every 1 Carb Point (where 1 CP = 10g Carbohydrate).

On a typical day I am injecting 22 units of Noverapid against 220g Carbohydrate (or 22CP for DAFNE officiados).

This is probably a coincidence but I'm also injecting 22 units of Lantus each morning.

There are other variables to be considered, for example I have found that 15 minutes on an exercise bike reduces my BS by 2 units.  If I match this with 2 CP's and no novorapid I seem to stay in range.


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## pottersusan (Mar 13, 2012)

martindt1606 said:


> Hi Susan,
> 
> just caught up with this thread and thought I'd add my twopenneth.
> 
> ...



Thanks for that info. I'll add it to my collection.

I'm off to Bournemouth tomorrow to see a new consultant, who will hopefullly be more open minded about my management and might also have experience of pancreaslessness. I've recently met several 'health care professionals' in social situations who have all said I'm a prime candidate for a pump and they have been disgusted with my treatment so far. 

Fingers crossed for some real progress. 

I'll be glad if the doctor treats me as an intelligent person, rather than saying 'don't worry your pretty little head about it' which is basically the treatment I've had so far!


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## Northerner (Mar 13, 2012)

pottersusan said:


> Thanks for that info. I'll add it to my collection.
> 
> I'm off to Bournemouth tomorrow to see a new consultant, who will hopefullly be more open minded about my management and might also have experience of pancreaslessness. I've recently met several 'health care professionals' in social situations who have all said I'm a prime candidate for a pump and they have been disgusted with my treatment so far.
> 
> ...



I hope things go well tomorrow Susan - Bournemouth have a very good reputation so hopefully you will be listened to


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## pottersusan (Mar 16, 2012)

Northerner said:


> I hope things go well tomorrow Susan - Bournemouth have a very good reputation so hopefully you will be listened to


Wow! What a difference!! The doctor actually believed what I was saying and has solved my massive loss of sugar overnight at a stroke. When he said 'Would you like a pump?' - I could have hugged the man. So I'm now the proud owner of an Accu check expert meter, which is much easier to use than the insulynx one I've been using for the last couple of months. All being well I will be pumping in early May. 
They've got some other patients who are pancreasless like me, so they're in a much better position to help me. I don't think I'm the only person to defect from Dorset County Hospital - I got the distinct feeling that there's an ever growing flow (and I can't say I'm surprised).
They are not confident yet in the technology in the integrated pump and cgm , but it's definitely something for the not too distant future.
The future seems a lot brighter all of a sudden


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## Northerner (Mar 16, 2012)

Oh Susan, that is brilliant news!  So pleased for you I could dance! ....

....

....

There you go! Did you enjoy it? 

Fantastic!


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## trophywench (Mar 17, 2012)

You're in good company, someone said the other day he'd 'defected' from Poole !  Easy peasy and a nice cruise to boot in his case!

(ie the chain ferry at Sandbanks, otherwise you have to slog all the way via wareham, PITA !)

I love BDEC.  My D team were trained there to design and deliver their own local version of BERTIE - (you will definitely meet BERTIE quite soon!) and when I say 'team' I actually mean 2 DSNs and one DIETITIAN..  Fancy getting at least 2 consultants, a couple of Housemen, 2 DSNs and a dietitian, all singing from the same hymnsheet, in tune and all in the same building!!  has to be a record, outside the hallowed confines of the  Royal Bournemouth and OXDEM, surely?  LOL


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## martindt1606 (Mar 17, 2012)

Hi Susan, did you get the impression that the consultant thinks those of us without a pancreas should be considered for a pump?  I'm seeing my consultant on Tuesday and will be raising the question of a pump but hold little hope of progress.  I get the impression that I'm the only non- pancreatic diabetic on the clinics books.  At the last meeting I was told pumps were for those with high hb1ac levels, since then I've done DAFNE so know all about carb counting and will be surprised if my hba1c is over 7.5. But that's not the be all and end all it's the way you feel between meals and injections, it's feeling hypo when your bs is 7.5 and you've stabbed your finger for no reason, it's your bs dropping 5 units in an hour and taking 3 rounds of 15:15 carbs testing before you get bak up to "normal" but with pin cushion fingers.  Unfortunately Bournemouth is too far...


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## Northerner (Mar 17, 2012)

martindt1606 said:


> Hi Susan, did you get the impression that the consultant thinks those of us without a pancreas should be considered for a pump?  I'm seeing my consultant on Tuesday and will be raising the question of a pump but hold little hope of progress.  I get the impression that I'm the only non- pancreatic diabetic on the clinics books.  At the last meeting I was told pumps were for those with high hb1ac levels, since then I've done DAFNE so know all about carb counting and will be surprised if my hba1c is over 7.5. But that's not the be all and end all it's the way you feel between meals and injections, it's feeling hypo when your bs is 7.5 and you've stabbed your finger for no reason, it's your bs dropping 5 units in an hour and taking 3 rounds of 15:15 carbs testing before you get bak up to "normal" but with pin cushion fingers.  Unfortunately Bournemouth is too far...



Martin, get in touch with Input - they will be able to advise you on a pump-friendly clinic closer to where you live: http://www.input.me.uk/

HbA1c is not the only consideration for pump eligibility and you have quite different reasons for benefiting from one from us run of the mill diabetics!


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## martindt1606 (Mar 23, 2012)

Do you ever get the feeling you are unwanted or just a statistic.

Just seen the diabetic consultant i was transferred to when i got a place on the dafne course 6 months ago. Getting on the course was a fight as I did not fit the criteria - i am not a type 1 diabetic just someone without a pancreas....  Anyway having got on the course I thought we had done away with that argument...wrong

So its 2 years in May since the operation that resulted in me losing my pancreas and whilst my Hba1C has remained at 56 for 12 months the quality of life doesn't reflect that.  

The consultation started as they all do - when was your last eye test, feet test, review of log book.  But that was it as far as the consultant was concerned.  No interest in how I thought I was getting on, no discussion as to why my BS can drop from 8.8 to 3 in under an hour or shoot up to 14 from 5 on the back of 0.5 carb points, no interest in the fact that I'm alienating the family with my extreme mood swings, and certainly no discussions on a pump - these are only for T1 diabetics.  I thought they were pancreas replacements.  

Apologies for the rant but its safer to do so here than in a reply to a work e-mail that probably deserves both barrells but would probably see me walked through the door


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## Northerner (Mar 23, 2012)

I've met consultants like that Martin - just looking at your HbA1c and then being completely uninterested in anything you have to say because you 'clearly' don't have any problems 

Perhaps you could do a bit of research and find out if there is another consultant in your area that your GP can refer you to. My current consultant is excellent and happily listens to me rambling on, so there are some good'uns out there. I cannot see how you are any different to a Type 1 - neither of us produces insulin, and you have additional problems due to the removal of your pancreas. 

I hope you can find someone who will listen, and soon.


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## MeanMom (Mar 23, 2012)

trophywench said:


> You're in good company, someone said the other day he'd 'defected' from Poole !  Easy peasy and a nice cruise to boot in his case!
> 
> (ie the chain ferry at Sandbanks, otherwise you have to slog all the way via wareham, PITA !)
> 
> I love BDEC.  My D team were trained there to design and deliver their own local version of BERTIE - (you will definitely meet BERTIE quite soon!) and when I say 'team' I actually mean 2 DSNs and one DIETITIAN..  Fancy getting at least 2 consultants, a couple of Housemen, 2 DSNs and a dietitian, all singing from the same hymnsheet, in tune and all in the same building!!  has to be a record, outside the hallowed confines of the  Royal Bournemouth and OXDEM, surely?  LOL



Luckily the Childrens team at Poole is the same as at Bournemouth except for better as we like the psychologist at Poole( different one or none at all at Bournemouth) We have two consultants 2 DSN and a dietitian too. 

When K gets older it sounds like we will need to transfer to Bournemouth - but  dont know why there should be different teams for adults but same for kids.? K's 'eye team' are at either/both hospital too. Except we will have to go to S'oton if they operate.

Poole hospital is 50 mins by bus (2 an hour), Bmth Hospital 30mins by bus,(one an hour). We come under Bournemouth council but when K was Dx. 
 her GP sent her to Poole Hospital. Basically Poole and Bournemouth are the same place now - just have 3 councils (Dorset inclu) who argue over who's job it is. 

Glad you like your new team Sue, good luck with the pump.


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## MeanMom (Mar 23, 2012)

*Martin*Sorry about your problems, I didn't mean to ignore you - pressed send and can't edit on this 'device' vey easily

If you can't find someone locally who is willing to help it might be worth travelling further afield? Not necessary Bmouth, but I do know quite a lot of parents travel to London from all over the country as they believe the care at GOSH is what their kids need.There should be somewhere you can go. These days it's not so important to live close by - if you have a good team they will be available by phone 24/7 almost, and once you are 'sorted' you will only need to visit every three months (or less). You clearly need more specialist care than your local team can offer - this is true for my daughter/her eyes, so we travel to S'oton when we have too. We will probably have to stay in a hotel overnight next time but ifs it's only every so often her health is worth it - as I'm sure yours is too. 
Good Luck - you deserve better care than you are getting


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## martindt1606 (Mar 24, 2012)

MeanMum / Northerner thanks for the kind words


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## pottersusan (Apr 22, 2012)

martindt1606 said:


> Hi Susan, did you get the impression that the consultant thinks those of us without a pancreas should be considered for a pump?  I'm seeing my consultant on Tuesday and will be raising the question of a pump but hold little hope of progress.  I get the impression that I'm the only non- pancreatic diabetic on the clinics books.  At the last meeting I was told pumps were for those with high hb1ac levels, since then I've done DAFNE so know all about carb counting and will be surprised if my hba1c is over 7.5. But that's not the be all and end all it's the way you feel between meals and injections, it's feeling hypo when your bs is 7.5 and you've stabbed your finger for no reason, it's your bs dropping 5 units in an hour and taking 3 rounds of 15:15 carbs testing before you get bak up to "normal" but with pin cushion fingers.  Unfortunately Bournemouth is too far...



sorry for not replying sooner. The consultant thinks I'm a prime candidate for a pump - thank god. He isn't happy with the technology of the integrated cgm and pump yet, but I'm starting a campaign for a separate cgm. I experience the same violent ups and downs as you, with inconsistent symptoms of hypos etc. Apparently at Bournemouth they have another Type 3 diabetic (I just about fell off my chair when they called me that 'cos the chap at Southampton is the only other person who has called our pancreaslessness that) I'd get your consultant to talk to Bournemouth for advice as we are rare beasts. I'm seeing **** - he believes in educating his patients - novel, I'm sure you'll agree! I don't know about you, but the finger pricks are actually worse than the injections, but I'm really looking forward to feeling less like a pin cushion.


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## pottersusan (Apr 22, 2012)

trophywench said:


> You're in good company, someone said the other day he'd 'defected' from Poole !  Easy peasy and a nice cruise to boot in his case!
> 
> (ie the chain ferry at Sandbanks, otherwise you have to slog all the way via wareham, PITA !)
> 
> I love BDEC.  My D team were trained there to design and deliver their own local version of BERTIE - (you will definitely meet BERTIE quite soon!) and when I say 'team' I actually mean 2 DSNs and one DIETITIAN..  Fancy getting at least 2 consultants, a couple of Housemen, 2 DSNs and a dietitian, all singing from the same hymnsheet, in tune and all in the same building!!  has to be a record, outside the hallowed confines of the  Royal Bournemouth and OXDEM, surely?  LOL



9am appointments at BDEC are not much fun, but it has to be done. I'm looking forward to pumping. i still marvel at the different reaction I got to the same problem... Or perhaps my diabetes is simply schizophrenic!

I'm looking forward to meeting Bertie - is he good looking?


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## pottersusan (Apr 22, 2012)

martindt1606 said:


> Do you ever get the feeling you are unwanted or just a statistic.
> 
> Just seen the diabetic consultant i was transferred to when i got a place on the dafne course 6 months ago. Getting on the course was a fight as I did not fit the criteria - i am not a type 1 diabetic just someone without a pancreas....  Anyway having got on the course I thought we had done away with that argument...wrong
> 
> ...



Stamp your feet. Get your GP to refer you somewhere more pump friendly. You are entitled to a 2nd opinion. Having worked for the NHS for 6 years and retained my sanity (some people might say this is questionable!) I know that you get what you want if you make enough noise. They don't like being on the front page of the paper.

Us pancreasless people are different. A diabetes nurse, who I've met socially recently, is absolutely positive that we qualify for a pump. I fear it all comes back to money - if you take your business elsewhere, that hospital doesn't get the money that goes with you. Doctors should be interested in doing the besst for their patient, but unfortunately some have wrong priorities. Personally, I have far more respect for a doctor who says "this is outside my experience. You'd be better going to X" than one who faffs (spelling?) around pretending they know what they're doing.


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## pottersusan (Apr 22, 2012)

MeanMom said:


> Luckily the Childrens team at Poole is the same as at Bournemouth except for better as we like the psychologist at Poole( different one or none at all at Bournemouth) We have two consultants 2 DSN and a dietitian too.
> 
> When K gets older it sounds like we will need to transfer to Bournemouth - but  dont know why there should be different teams for adults but same for kids.? K's 'eye team' are at either/both hospital too. Except we will have to go to S'oton if they operate.
> 
> ...


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## pottersusan (Apr 22, 2012)

I wish Diabetes UK would take more notice of us pancreasless folk. Whether we are Type 1 and a half or Type 3 (inconsistency is a feature of our diabetes!) we are about in increasing numbers and 
We are diabetics too
There's nothing like a good rant!
The NICE guidelines for pumps were probably written before anyone had their pancreas removed, but doctors need to remember they are only guidelines - not the law.


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## Northerner (Apr 22, 2012)

pottersusan said:


> I wish Diabetes UK would take more notice of us pancreasless folk. Whether we are Type 1 and a half or Type 3 (inconsistency is a feature of our diabetes!) we are about in increasing numbers and
> We are diabetics too
> There's nothing like a good rant!
> The NICE guidelines for pumps were probably written before anyone had their pancreas removed, but doctors need to remember they are only guidelines - not the law.



Agree wholeheartedly!


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## martindt1606 (Apr 22, 2012)

pottersusan said:


> sorry for not replying sooner. The consultant thinks I'm a prime candidate for a pump - thank god. He isn't happy with the technology of the integrated cgm and pump yet, but I'm starting a campaign for a separate cgm. I experience the same violent ups and downs as you, with inconsistent symptoms of hypos etc. Apparently at Bournemouth they have another Type 3 diabetic (I just about fell off my chair when they called me that 'cos the chap at Southampton is the only other person who has called our pancreaslessness that) I'd get your consultant to talk to Bournemouth for advice as we are rare beasts. I'm seeing **** - he believes in educating his patients - novel, I'm sure you'll agree! I don't know about you, but the finger pricks are actually worse than the injections, but I'm really looking forward to feeling less like a pin cushion.



Hi Susan you have been busy this evening.  Type 3 - I'm not sure I like that - I think Type 0 would be a better description especially if you were to explain the difference from Type 2 to Type 1 to Type 0.  

Thanks for the name of your consultant I'll certainly suggest my consultant considers contacting him to compare thoughts.  

I agree with you that the blood check is worse than the injection - Eric Bristow stopped playing darts because he couldn't release the dart, sometimes I find it very difficult to press the button to stab the finger.

Last week I attended a forum where a potential new cgm was discussed which will be no bigger than a finger nail.  The developers said it was perhaps 3 years away - we'll see.  At the meeting I got talking to someone who had started on a pump at the start of the year (due to lack of hypo awareness) and he was saying he was in 2 minds about it....  He was under Bournemouth.


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## trophywench (Apr 22, 2012)

Well it's true that not everyone can get on with a pump, just that I seem to know (of) an awful lot of pumping diabetics one way or the other - and all of them you couldn't prise it off with a crowbar.  Including me !  And I haven't actually met anyone that's had one and doesn't want it.

I found it quite hard getting my head round knowing what adjustments to make and where to make them after so long with MDI and previous far simpler regimes - but practice makes not perfect by any means, and sometimes I still get entirely 'lost' and have to ring my DSN and say Help! - but I've had it a year now and I am improving.

And there's no doubt that I've had far better A1cs throughout the last 12 months - mid 6's instead of high 7s and 8s.


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## pottersusan (May 15, 2012)

*5 days to go..*

Only 5 days until I start my pump training - I can't believe it's really going to happen. all the jumping up and down and shouting will have been worth it.


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## Northerner (May 15, 2012)

pottersusan said:


> Only 5 days until I start my pump training - I can't believe it's really going to happen. all the jumping up and down and shouting will have been worth it.



Absolutely brilliant news Susan! Really pleased for you!!!!


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## martindt1606 (May 16, 2012)

pottersusan said:


> Only 5 days until I start my pump training - I can't believe it's really going to happen. all the jumping up and down and shouting will have been worth it.



Thats excellent news I hope you and the pump work together.

I saw my consultant must be 2 months ago now and told her I wanted to be considered for a pump.  She said she'd refer me to the consultant in charge of pumps - heard nothing yet....

I'm going to have to follow your lead and jump and down....


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## martindt1606 (May 18, 2012)

martindt1606 said:


> Thats excellent news I hope you and the pump work together.
> 
> I saw my consultant must be 2 months ago now and told her I wanted to be considered for a pump.  She said she'd refer me to the consultant in charge of pumps - heard nothing yet....
> 
> I'm going to have to follow your lead and jump and down....




Isn't it strange how the world works, I have a small moan on here about lack of progress from the consultant - and the next morning what should arrive in the post?  an appointment to see the hospitals Pump Consultant at the end of June.

Can you keep me uptodate with your progress.


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## pottersusan (Jun 10, 2012)

*pumping for nearly a fortnight*

I feel somewhat less like a pin cushion now, but the finger pricks sstill hurt! The pump is a steep learning curve, but worth it. it's amazing how much less insulin I need now.
The first time I had to refill the pump, I made every mistake in the book and some that weren't! But I won't make them again... I hope. The Roche helpline in America (well it was bank holiday Sunday) were very helpful as were NHS direct! it was Tesco's pharmacy computer that slowed things down somewhat.
My next campaign is for a continuous glucose monitor - though hypo symptoms seem clearer now I'm pumping - but my bg is still unpredictable
I am so glad that I jumped up and down. My experiences with Bournemouth have all been positive. Long may it continue.


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## pottersusan (Jun 10, 2012)

martindt1606 said:


> Isn't it strange how the world works, I have a small moan on here about lack of progress from the consultant - and the next morning what should arrive in the post?  an appointment to see the hospitals Pump Consultant at the end of June.
> 
> Can you keep me uptodate with your progress.



us pancreasless folk are definitely prime candidates for pump therapy - it might save the nhs on other sorts of therapy needed - cos of frustration!


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## trophywench (Jun 10, 2012)

Hee hee,  I had a whinge in a PM to Pumper Sue about summat diabetic but unrelated to this thread on Friday - and there was a letter in the post for me about it on Saturday morning!

Good luck for the end of June!


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## Northerner (Jun 12, 2012)

Terrific news Susan  I'm sure as you become more experienced with the pump things will get even better, which is magic to hear when I think of your situation when you first joined us - good luck with the CGM battle!


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## martindt1606 (Jun 13, 2012)

pottersusan said:


> us pancreasless folk are definitely prime candidates for pump therapy - it might save the nhs on other sorts of therapy needed - cos of frustration!



Hi Susan certainly sounds like you have made a promising start with your pump.  The last 2 - 3 weeks are giving me some good evidence as to why I need a pump as my BS is varying between 12 and 3.5 every day irrespective of my (based on DAFNE) attempts to correct.  I've adjusted my lantus, novorapid, i've changed meal times, i've had snacks timed to stop the hypos, and i've had days where i just match the novorapid to the carbs but nothing is working.  Same pattern every day high before breakfast, perfect at lunch, perfect at home time, hypo an hour later, perfect at bed.  In 2 years I've never had a run go on as long as this. 

One question - whilst bedding in the pump would you be able to work full time?


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## pottersusan (Jun 14, 2012)

martindt1606 said:


> Hi Susan certainly sounds like you have made a promising start with your pump.  The last 2 - 3 weeks are giving me some good evidence as to why I need a pump as my BS is varying between 12 and 3.5 every day irrespective of my (based on DAFNE) attempts to correct.  I've adjusted my lantus, novorapid, i've changed meal times, i've had snacks timed to stop the hypos, and i've had days where i just match the novorapid to the carbs but nothing is working.  Same pattern every day high before breakfast, perfect at lunch, perfect at home time, hypo an hour later, perfect at bed.  In 2 years I've never had a run go on as long as this.
> 
> One question - whilst bedding in the pump would you be able to work full time?



I don't see why not. I would advise doing your blood every hour to start with, 'cos the first few days I spent a lot of time in hypo land (despite the fact i was having a lot less insulin than previously). it's amazing how much less insulin I need now, and I suspect I need even less. I'm now trying to do some fasting at specific times to gather information to try and improve the programming of the pump. it is so good having reduced my jabbing needs by 50%. 
it only took me 3 months to get the pump - i think I must have ticked all the boxes!
Good luck with your quest.


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## martindt1606 (Jun 29, 2012)

Hi Susan how are you getting on with the pump?  I saw the consultant responsible for pumps in my area this morning and probably had the best session I've had with a doctor since.....ever.  she couldn't understand why I was not referred to her earlier, also concerned that I was only with diabeti care and not receiving any help with other pancreatic stuff.  Going back on Tuesday to look at some pumps and to select one to take forward for trust approval.  Unfortunately the doc retires in October so we discussed referral in case the deal is not completed by October. Started with bournemouth but may go for kings which may open up islet treatment as a longer term option if pump does not lead to improvement.


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## Northerner (Jun 29, 2012)

Good to hear Martin


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## trophywench (Jun 29, 2012)

Excellent!


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## pottersusan (Jul 21, 2012)

martindt1606 said:


> Hi Susan how are you getting on with the pump?  I saw the consultant responsible for pumps in my area this morning and probably had the best session I've had with a doctor since.....ever.  she couldn't understand why I was not referred to her earlier, also concerned that I was only with diabeti care and not receiving any help with other pancreatic stuff.  Going back on Tuesday to look at some pumps and to select one to take forward for trust approval.  Unfortunately the doc retires in October so we discussed referral in case the deal is not completed by October. Started with bournemouth but may go for kings which may open up islet treatment as a longer term option if pump does not lead to improvement.


Pumping is a definite improvement on mdi 'though I still have sudden plunges in my bg. Yesterday and today i've been struggling to keep my bg up in normal levels. The pump is so much easier when you're out and about, but my bg fluctuations still make me think I need a cgm too. 
I'm going to see  my surgeon consultant on thurs 'cos my latest ct scan shows a lymph node that is growing. I had an octreotide scan a week ago (I've now stopped glowing in the dark!) to determine whether it's carcinoid or not. If it is I'll have to have another op - which I'm not wild about as you can imagine. Though i'm told they would just be 'cherry picking'! but it would be open surgery not keyhole. It's a year to the day today, since my first op. I think I'm going to be being scanned and scared for the rest of my life, but that's a lot better than the original diagnosis!


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## Northerner (Jul 21, 2012)

Hope everything goes well for you Susan, fingers crossed for the best possible outcome


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## martindt1606 (Jul 21, 2012)

Susan still waiting to here if the budget for a pump is approved - seeing the consultant in 2 weeks time for an update.  I hope last weeks scan is more promising, the last thing you need is another operation.  My last scan was clear so that's 2 years - only 3 more years to go before the consultant will stop the ct scans.  I asked if something could be done about a post op lump and was told they wouldn't consider another operation - for at least 3 years. I hope you're not forced into one.  Stay positive.


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## pottersusan (Aug 7, 2012)

martindt1606 said:


> Susan still waiting to here if the budget for a pump is approved - seeing the consultant in 2 weeks time for an update.  I hope last weeks scan is more promising, the last thing you need is another operation.  My last scan was clear so that's 2 years - only 3 more years to go before the consultant will stop the ct scans.  I asked if something could be done about a post op lump and was told they wouldn't consider another operation - for at least 3 years. I hope you're not forced into one.  Stay positive.


life is a bugger sometimes. the octreotide scan was inconclusive so I'm having more blood test and (oh joy!) another 24 hr urine collection... no one can say I don't know how to enjoy myself!
If I have to have another op it'll be in September, so I'm now chewing my finger nails for several weeks.
However I've had a bug which has meant I haven't wanted to eat for 24 hours - the good news is that my tinkering with my background and bolus ratios seems to be on the right track as I wasn't hypo or hyper in that time. 
I love my pump and would definitely recommend it to the pancreasless. Though for me the rules do seem to be very different - apparently most people get most of their insulin from the background. I definitely don't - I need very little background and lots of bolus - probably about 10% background and 90% bolus. In total I'm having about a sixth of what I was having with mdi - so saving the nhs a lot of money!


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## martindt1606 (Aug 7, 2012)

Susan,  just back from seeing my diabetic consultant and hopefully my pump request will be submitted in the next 2 weeks. 

Interesting that you have commented on your strange basal / bolus relationship - I am about to start splitting my lantus due to issues I am having with conflicting day time / night time readings.

Fingers crossed that you don't need a further operation - I had 2 in 5 years and was advised that that was the minimum time you should have between operations.


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## pottersusan (Aug 18, 2012)

martindt1606 said:


> Susan,  just back from seeing my diabetic consultant and hopefully my pump request will be submitted in the next 2 weeks.
> 
> Interesting that you have commented on your strange basal / bolus relationship - I am about to start splitting my lantus due to issues I am having with conflicting day time / night time readings.
> 
> Fingers crossed that you don't need a further operation - I had 2 in 5 years and was advised that that was the minimum time you should have between operations.



Hope your pump request is agreed sooner rhter than later.

I'm just about coming out of very nasty side effects of one of my drugs - at least for once it's not the diabetes causing  the probs! The side effects are a one in 10,000 chance - just my luck!! I'm waiting (not so )patiently for blood test results. My blood had to go to Sheffield for the tests - the nurse spec. assured me they'd put a 1st class stamp on it! If I need another op it'll be in Sept - only 15 months, but I'm sure my hero/surgeon knows what he's doing. I think I'll be being scanned regularly for the rest of my life, 'cos of my particular sort of cancer. I've been invited to my surgeon's retirement bash in 20 years time so he obviously thinks I've got a decent future. In the meantime I'm still his no.1 patient and he's my no.1 surgeon (definitely a mutual admiration society!)


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## pottersusan (Nov 7, 2015)

its strange returning to a thread from ages ago - so much water under the bridge. In 6 months I'll be having my first pump replaced! I've now been using my self funded cgm for 3 months. It is making a real difference to my life - firstly by more or less removing hypos from my life  Of course doing that has highlighted my hypers. So I'm now working on reducing those. I fully intend to prove to my diabetic consultant the difference it's making to my management and general well being. In fact, you could say I want to rub his nose in it (he annoyed me  when I met him for the first and only time). Hopefully he will see the error of his ways. The CGM proves what a blunt instrument Hba1c is.


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## Northerner (Nov 7, 2015)

So pleased to hear Susan  I hope you get the funding for the CGM. I've lost count of the number of times I have read on here about doctors not believing that things like testing for Type 2s or CGM/Libre devices can uncover such a lot of unsuspected information. Thankfully, when confronted with the results they often change their minds - hope the consultant in your case can be convinced


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