Insulin pumps

[alohanicky2009]

Well had an appointment today with the DSNURSE at Treliske where I was receiving my diabetic care since diagnoses in 1995, quick recap of my story is that I have been going down the route of pump therapy (6+ years ) and various reasons not to have got to 2nd hurdle .no funding , not enough people , not done carb corse, carb course done but too long ago so is advisory to repeat ,(I don t mind doing it again) then consultant felt my HbA c1 were to high so could not recommend pump that was in July.then ask for care to be moved to Exeter saw a Dr who has referred me to pump clinic in Oct.keep old appointment with DSNurse to inform her of what I had done She checked my blood tests done last week and says that I have reduced my HbaC1 by too much down from 13.8 to10.6 ! All I want to do is SCREAM ! But at least she has said she will happily see me if I decide not to continue with having diabetes care at Exeter as going to a different hospital will get me a pump, I accept that I might not get a pump or even if a pump is right for me but I hope to get a consultant that I can trust with my health and give me the tools to help me manage my diabetes as a person and not just a hospital number or tick box who has been seen for a 10 minute ' how are you ? Hand this slip in at reception and they will send you your next appointment, '


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[fatface1987]

I have fought for an insulin pump for over 6 years and have just won that fight this week. Diabetes has controlled my life for years and i am so unstable and critically ill. I kept moving from hospital to hospital in Northern Ireland until I was listened too and got what I want and need. Sometimes being a medical professional helps as you spend your like advocating for patients therefore you know what to do to get the right care for yourself. Keep fighting. The NICE guidelines say you are eligible for a pump if you fail despite best efforts and hard work to achieve blood glucose control/HbA1c control. I was told that there was no funding but I refused to accept that. Go and speak to your local MP: they can really stand for you and help you. Wish you all the best

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[alohanicky2009]

Hi fatface1987 well done for getting a good result for getting a pump, so pleased for you , yes I have spoken to input and confirm I fulfil NICE guidelines although the DS nurse saw yesterday says I don t ? But hay ho other professionals say I do so I hold on to that thread, will keep conducting my MP as my ace card up my sleeve as I am hopefully that my move to a new hospital will be positive, although I don t want to rush the process of getting it right and the pump is hopefully a right way to treat my diabetes ,I don't want to be taking the scenic route , I am going to be very ' in the face ' of all the necessary people who will be glad to see that I do want to improve my diabetes by what ever means , give me the tools and I will do the labour- to get the best outcomes possible , I will be open minded and TRY


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[alohanicky2009]

Just a follow up to my post of difficulty getting a pump, as said I have changed hospital and finally feel that I am being listened to about how a pump may help me to regain control back from the roller coaster of erratic BS , saw a pump nurse at R Devon and Exeter hospital and DSNURSE has set up an appointment with the pump consultant and other specials involved in the pump process for December, I can t believe how different the way I am treated at this clinic . More done in 4 months than has happened in the last 6 years at my old hospital, so impressed with this clinic and care, so glad I changed such a difference in attitudes and understanding finally feel I am being listen to


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[Cupcaake32]

Wooo rdande are amazing marie and the pump nurses are wonderful .

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[sw11bloke]

alohanicky2009 - some hospitals and clinics are probably not as experienced as others when it comes to pumps. You will find some hospitals are pro pump because their staff have had training in this field and they have many patients who are already on a pump.
Some NHS clinics do treat you as a number but then there are some clinics like Chelsea and westminster and Kings College who are leaders in this field and take a real interest in your diabetes. If I have any issues, my diabetes clinic deal with it straight away.

I can imagine your frustration. I am so thankfull that my clinic is so pro pump and that I dont have to wait such long times as you mention.

Previously I never paid too much attention to my diabetes. My HB was over 12%! I never used to attend my hospital appointments. Then my vision started going blurry so I contacted my DSN. They arranged an appointment straight away for me to come in and have a blood test and eye scan. I am so thankful to them for taking me serious and seeing me immediatedly. the scan showed retinopathy and m1 maculopathy which just crept up upon me.

For a start they changed my long acting insulin to Tresiba which dropped my HBA1C to 9% in 5 months. Going on a pump will drop your HBA1C and a drastic drop is not good as it does more damage. I am now on the Omnipod pump and my HBA1C is 8%.

You may want to talk to your diabetes specialist about trying out Tressiba while waiting for the pump as funding can take a few months and the Tressiba should help drop your HBA1C a couple of percent so that its a gradual lowering.

Hope you get sorted. A pump will change your life. Im feeling great now. My vision is not blurred anymore, My neuropathy pains have gone. I have put on 5 killos. Having my eyes scanned again in November so fingers crossed it will all be under control now.

Good luck

 

[alohanicky2009]

Well done the DAFNE course in Very beginning of January 2014 , hopeful to use a insulin pump for better control of erratic BS , just seen a DSNURSE who says I won't be able to have a pump because there very expensive , I replied I know but I have fulfil NICE guidelines , she then said I not matching insulin with carbs, I know but I have gastroparesis and am always sometimes hourly injecting correction doses ,I am able to carb count but never know how long the food will take to digest so matching the food to insulin is difficult, and that was why we thought a pump would be better as insulin can be adjusted so if BS were going up could increase insulin and vice versa going down reduced insulin, feeling emotional, depressed and what is the point , fed up trying

 

[iHs]

You should really contact INPUT and get yr diabetes care dealt with by another hospital. If you meet the NICE criteria then you should get a pump regardless of the cost.

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[CarbsRok]

Well done the DAFNE course in Very beginning of January 2014 , hopeful to use a insulin pump for better control of erratic BS , just seen a DSNURSE who says I won't be able to have a pump because there very expensive , I replied I know but I have fulfil NICE guidelines , she then said I not matching insulin with carbs, I know but I have gastroparesis and am always sometimes hourly injecting correction doses ,I am able to carb count but never know how long the food will take to digest so matching the food to insulin is difficult, and that was why we thought a pump would be better as insulin can be adjusted so if BS were going up could increase insulin and vice versa going down reduced insulin, feeling emotional, depressed and what is the point , fed up trying

Basically what you have been told is correct. Even though you know how to carb count you are not doing so. Thus no pump.
Use your noggin and vary you insulin timing for meals to counteract the gastroparaesis. IE fatty foods inject after the meal thus your food and insulin will meet up hopefully.
Keep a detailed diary of what you are doing and why plus the result. then you will get somewhere.
Also ask the consultant for the reasons of no pump in writing then you can work on it.

 

[alohanicky2009]

Basically what you have been told is correct. Even though you know how to carb count you are not doing so. Thus no pump.
Use your noggin and vary you insulin timing for meals to counteract the gastroparaesis. IE fatty foods inject after the meal thus your food and insulin will meet up hopefully.
Keep a detailed diary of what you are doing and why plus the result. then you will get somewhere.
Also ask the consultant for the reasons of no pump in writing then you can work on it.

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[alohanicky2009]

I do vary times of insulin , but we have worked out that a meal can take 36 hours to digest and that's is why the roller coaster of BSugars, then how the hypo are very quick , I don't eat very little fat at meal times, so even when I keep a diary of food carb calculations , times and exercise we have never had two days the same result, I have been told that I test to much and spend too much time calculating the exact amount of carbs I eat , I have difficulty control BS when not eating any carbs ,


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[donnellysdogs]

Alohanicky
I totally agree with the problem times that you get with gastroparesis.. I had slow colonic and you never know what the effect of a meal is...
When I got totally blocked up my levels shot up, it took me a while to realise this.. As soon as my blicked up bowels had cleared my levels were normal again.

Please feel free to mention or show this (following) to your hospital...

I could never have managed my bowel blockages and slow colonic transit without being on a pump.

Being on a pump has enabled me to realise the impact of food festering in my stomach and the increased blood levels. It enabled me to increase my basal rates on a temporary basal rate whilst my levels remained high due to the food festering throughout my stomach.

I still officially suffer from sct, but have been able to find my own way to manage it with the help of a modified diet, and my pump. If I had been on MDI still, I would never have beenable to adjust my diet and insulin to enjoy my life so fully again.

I am a T1 of 30+ years and had over 21/2 years of trouble with my stomach. Officially I have now been discharged from Kettering Hospital Consultant team, but if needed I can go back at anytime. However, due to the flexibility that my insulin pump gives me I have been afforded the opportunity to improve the awful, horrible episodes of being admitted to A&E by ambulance because of the chronic pain and agony that SCT gives when trying to exit my body.

It is truly, totally, down to my pump that I have been able to cope with sct and to find my own solutions to cope with it and now being discharged from gastro consultant care.


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[alohanicky2009]

Thank you Donnellydogs felt a little depressed with a previous post, great that some people seem to find it easier to control BS , I recognise that insulin has to match carbs , can even calculate carbs precisely from reading labels, weights , portions , but working too many jobs and stress affect BS but the gastroparesis is a nightmare,like you having slow transient , absorption or blockages ( mine creates vomiting which requires hospitalisation) can we have empathy and understanding. Thank you feel more happier after your message , it has made me more positive today, I felt such a failure, but thank you will go to my next appointment and remain receptive thank alohanicky


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[Lisbet]

Contact INPUT - they will advise and advocate for you re pump qualification. They're brilliant!


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[alohanicky2009]

Yes did contact INPUT who advised I had been wrongly informed that I did fulfill all nice guidelines and more and also gave me the extra confidence to change hospitals,


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[donnellysdogs]

Good for you.... Really pleased for you.
Phone round the hospitals before changing.. Speak to dsn's. Find out consultants names and secretary details. Email them and ask if they are pump friendly with type 1 diabetics, how many they have put patients on in the last year. There used to be info published on pump users by hospital somewhere on the internet a few years back, but I'm unable to locate it.
Don't just jump from fire to frying pan. Research hospitals first..

But hey, good result!!


Loving life