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Insulin Pump Waiting List

J

jaynewill

Newbie
Messages
1
Hello

Ive had diabetes type 1 for about 4 years and i still can't get it under control. I'm up and down every day and its having a serious impact on my health, my job, relationship and every thing I do.

I eat well and don't drink, smoke etc. The consultant has given me metoformin to take because although I'm type 1 he thinks that my body may not be able to take the insulin. However this still hasnt worked.

I've just been on a 24hr hospital survillance and awaiting the results but I am really pushing for an insulin pump as I think this will really work for me. As seriously I have tried everything else manually.

I have a few questions.

1) Are there any hints or tips someone could give me to strengthen my case for a pump as I dont want to be pushed to the back of some list or warded off getting one? Does anyone know what the waiting list is (NHS or Private)

2) I also have edema which means I have a pouch and generally have big water retention - so much that when I have it really bad it puts 15kg on me! Its making my life a misery and I wondered if anyone knew how to help with this or once sugars are under control how long it takes before the edema would go totally.

Any advice on these two points would really help!!!!
 
hi

with regards to the pump it depends on the area and the team u have, our nurse wanted dylan to have a pump and fought for him but it still took a year but having said that it was worth the wait.
you say u dont want to be pushed to the back of a list but the people on that list maybe as deserving of a pump as u and some of them may have been waiting a long time so it maybe a case that u have to be patient. all u can do is enquire if u could be considered and wait on the reply thats what we did and a year from asking we had one

good luck

anna marie
 
Have you done some version of a DAFNE course? ie adjusting your doses to suit the food you are about to eat, and you Bg at the time etc? If not, i would really heartily recommend it. There is an online one somewhere.

A pump is fabulous, but it not a golden ticket to brilliant control, and takes a great deal of work. I honestly belive that the "DAFNE" approach is the best way forward. If you try this, and still your are not happy, then a pump may be the answer. If you are already doing this, adn then still having problems, then persistance seems to be the key to moving forward.
 
Hiya
It sounds like the insulin you're on is not working . What insulins are you on, and have you tried any others? Doctors are too quick to presume people are insulin resistant before considering a change in insulin medication. Analogue insulins are NOT insulin, and should be treated by docs in the same way any other medication is; ie if it's not working change to another variety. There are many people who have poor, erratic diabetes control on them and others that suffer side-effects, I had both problems.
As for the fluid retention, I know Lantus is associated with that problem, i've heard people report weeing for England when they come off it!.
Sorry I can't advise on the pump, not something I've ever fancied. I'm sure someone on here will be able to give you some tips.
Jus
 
I agree you should try other insulins. I was tried on one that didn't seem to work on me at all. My sugars just kept rising steeply despite doubling the dose each day. In the end they had to put me back on my old insulin to avoid coma! An extreme example perhaps, but if they put me on that when I was first diagnosed I'd appear to be extremely insulin resistant, when in fact it was just the wrong insulin for me.
 
All though a pump is a great tool. If there may be other medical issues with regard to getting the right meds that work for you to sort first. If you want to find out more about pumps and pumping the I would check out the following websites:

http://www.insulin-pumpers.org.uk/

and particularly

http://www.insulin-pumpers.org.uk/ukfunding/

Also another site would be

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

but as I said there may be other steps to take before the going to the pump. I have only been on the pump a year but before that I was on MDI of one sort or another for years after being diagnosed type 1 in 1984. My PCT also required DAFNE training in conjunction with MDI as well before they would even consider a pump. Being on a pump is great so far but if I was having problems with the insulin I use I could see it easily being a nightmare. Good luck.

thewall
 
Hello

If the edema is caused by the diabetes (most likely as it's normally caused by an underlying condition) then the sooner you address your control the sooner you will be able to sort it out.

How active are you? Regular exercise is a huge benefit to diabetic control, and of course for edema (which can be caused by immobility too).

I also agree with the others about doing a carb counting course as this can be a real eye opener to improving control.

Lastly insulin - try another one! I went on Levemir and was allergic to it. This wasn't picked up for a long time and resulted in giving me chronic fatigue syndrome and gaining 3 stone in weight :shock:

I waited 5 years for my pump so even if you go on the list you need to make sure you have looked at every other option to help improve your life right now.

Good luck
 
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