Is a pump the right option?

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sugarfairy.90

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Type 1
Hey everyone!

I have been on MDI since I was 13 - I am now 20. I have been on every of the long acting insulins, and have had allergic reactions to all of them. In the past I was not taken very seriously and found it hard to get my consultant to listen to me. Since being at uni I have been to a new consultant who I saw a few weeks ago. My hba1c was 12.7% which I was annoyed about but not surprised about! Anyway, my consultant instantly said, I'll go and speak to our "pump lady" to see if that's an option for you. She returned 5 mins later and said "okay we will try you on humulin I first and you have to improve your hba1c" I asked what would happen if I couldn't improve my hba1c, my consultant said "we'll talk about that if it happens..."

Anyway, I obediantly went to the pharmacy and got a supply of humulin I. I was hopeful this may be the first long acting insulin I wouldn't react to. Alas, no. I do react to Humulin I too. The first reactions were your typical, pain, redness and severe swelling at the injection site. However as the week progressed I also noticed my whole body increasing in size. During the next week my clothes became tight, including my ring that I always wear. I tried to cut back on my food but still the swelling effect continues, in fact it gets visibly worse each day.

I am seeing my dsn tomorrow, and basically I want to tell her that I want a pump, because this has no long acting insulin. I've read up a lot about the pump and it seems to be a good option for me. However Im really worried that from others points of view this might not be a good choice for me? Any ideas on how I can convince my dsn that I do need a pump? Im really down due to my inflated image and am struggling to go out and socialise like normal, Ive cut down dramatically on food and im struggling to resist the temptation of skipping the humulin I injection.

any tips would be much appreciated! Sorry for the essay esque post!

Sugarfairy x
 
Hi Sugar and a warm welcome as you have also stumbled upon the pumping section then id take a good look around theres a good few threads that will help you,theres a few pumpers on here who will give you every bit of help and advice about pumps, I dont know an awful lot so will welcome you onboard and leave you in there capable hands x
 
Hi Sugarfairy, welcome to the forum 🙂 I presume from what you have said that you are not allergic to the fast-acting insulins like novorapid? Have you been tried on animal insulins? I would think that you would be a good candidate for the pump given your history - it might be worth having a chat with Input (or IPAG for Scotland):

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

http://www.ipagscotland.co.uk/

They are very helpful and will be able to advise you well 🙂

I'm sure some of our pumpers will be along to share their experiences soon - I know the vast majority of them would fight tooth and claw if you tried to take their pumps off them!
 
Thanks Steff and Northerner 🙂
Yeah I'm not allergic to Novorapid, but I haven't been tried on animal insulin so far... I really hope they don't try to decide to do this before considering me for a pump 😱 I am at uni and going in to my third year which is spent entirely on placement, so its crucial that I get my control good and a regime which is flexible to suit variable working hours. Really going to try and push my DSN about a pump tomorrow, have a massive list written out of things I want to say!
I've been on the input site, which I found really helpful, think I'll get in contact with them once I know what the state of play is tomorrow after my appointment 🙂

thanks for the advice!

Sugarfairy x
 
Hi Sugarfairy welcome to the forum , i am a pumper and have been since last september and for me it was the best thing i have ever done , after being Anti pump for so many years i really wished i had done it years ago , my HBA1c is down from double figures to 6.8 .Saying that the pump is not for everyone and i thing you need to have a good chat with your DSN and weigh up the pros and cons for you personally 🙂
 
Hi SF,
A young lady a few miles down the lane from uses pork insulin but only the neutral as she is allergic to all other types of insulin.
A pump was ruled out for her due to her non compliance to carb counting and keeping records.
From what I can gather she injects herself 5 times a day and feels 100% better. I know she works a shift pattern as well.

I use animal insulin as well, but have a pump for delivery.
I hope you have a good meeting tomorrow with the DSN.
IMHO though with the swelling you describe etc I would not have waited so long before seeking help. In fact I would have stopped using after the 1st injection and gone straight back to the hospital.
 
Hi sugarfairy. Welcome 🙂

I would have thought they could do a simple test to check if you're allergic before even sending you away to try it. :confused:

They do make you wonder sometimes. I'm not the best to tell you this but a pump will require a lot of effort to get your levels even as good as MDI and you'll see form some threads that it can be more stressful but if it saves you from an allergic reaction, it will be worth a bit more work.

Good luck🙂

Rob
 
Thanks everyone, really helpful to get so many replies and so quickly 🙂

As soon as i noticed the swelling I wanted to give up with the humulin I but my previous consultant had said when i was on lantus that I needed to keep trying with the insulin for a bit, and to be considered for a pump I had to prove I'd try. Despite the humulin I making me completely miserable with the side effects I have continued with it to make the point that I am willing to try, I test on the whole every hour to 2 hours, and correct when necessary, and I also carb count.

My DSN said the other week that she would run my case through at the weekly meeting with the drs because we seem to have run out of options with the long acting insulin. I'm going to tell her tomorrow that I won't take humulin I any more, I reacted to insulatard (large red hot raised bumps after injections) but I didnt feel so down in myself nor did I get the swelling.

So frustrating but I'm sure I'll get there in the end! I have heard York hospital (where Im seen) are quite keen on pumping - don't suppose anyone on here has got their pump from York? 🙂
 
Hi Sugarfairy,

I'm the same age as you. I've been pumping over a year now and I love it. Pumping is alot of hard work. No two ways about that sadly. I do love the added benefits that I now have but at times the stress of it all is quite phenomenal. My HbA1c was never below eight percent pre pump. It's now been consistently lower bar one blip of eight percent dead on.

Feel free to shout if you want to ask a few questions on the quiet.

Tom
 
Hey,

Good luck tomorrow - let us know what your DSN says. I hear that York are very pro pump so hopefully it will be a positive answer. If it's anything but positive, let us know and we can help out where we can 🙂

It took me 18 months to battle for my pump, but I'm now a very happy Animas 2020 pumper. The pump gives me greater flexibility than MDI and has allowed me to sort out my dawn phenomenon issues. It's also going to come in really handy when I start training for my first marathon (I am cringing inside just reading those words!!) and is fab with my job - most of the time I'm in the office, but it's great if I get called away at short notice (at which point I usually get really stressed and have to fiddle with basals).

Please give us a shout if you have any questions or anything, feel free to PM me.
 
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shiv said:
It's also going to come in really handy when I start training for my first marathon (I am cringing inside just reading those words!!)
Click to expand...

Hi, Shiv, Marathon's (snickers) are a lot easier to eat than Mars bars so you will be fine :D

Joking apart though good luck with the training. There are a couple of marathon runners on the forum, to help out with advice.
HelenM is on a pump and runs Marathons as well.
 
Im very chuffed to say that my DSN has decided to put me forward for a pump :D I didn't even bring the pump option up myself as she got in there first, because as she said its the only option we have left now. There is a weekly meeting with the doctors on Monday so my DSN is going to see if my consultant will agree that the pump is the right option (fairly confident my consultant will agree because she mentioned the pump as an option in my last clinic and seemed very pro-pump). After that I need to get the ok for funding from my PCT. This is where my DSN thinks theres a potential possibility to get a problem, because I will be going in to my third year of uni in september, the PCT may think that I am not going to be around in York very long. Going to try and get around this by saying that I am going to stay and work in York once I have graduated. Surely the PCT can't say no if both my DSN and consultant say yes and because I'm actually allergic to the insulin which is causing me harm?
Fingers toes and everything else crossed that they'll play nice 🙂
 
The PCT can't say no (due to NICE guidelines) but I can see why they might try to wriggle out of it if they think you'll leave the area. Definitely let everyone believe - including your DSN and consultant for now - that you are going to stay in the area.
 
Hey everyone,

got the decision from my consultant today, which was a yes :D
However... apparently my PCT won't fund it yet because theres no "documented evidence" that I did a carb counting course at my old hospital (which I definitely did!!) Therefore I have to do a "refresher course" and a "type one diabetes explained" course, the waiting list for which is 9 months.

I know it may sound ungrateful, but Im really really annoyed, I've done the courses!! Also, without trying to sound funny, but Im allergic to my long acting insulin, insulatard produces the least reaction but it barely works, my sugars spike and bounce all over the place. I already have background retinopathy, and with my hba1c at 12.7% and pretty impossible to reduce due to having no control whatsoever, I'm pretty worried what the long term effect will be, just because theres no proper record that I did a course 2 years ago, despite in my notes it saying I carb count.

Fuming and not entirely sure what to do next. I've emailed my previous DSN and explained the situation and asked if there's anyway they can properly document it, and I've also emailed INPUT.

I can carb count perfectly fine, my sugars whilst on Humulin I (which i was very allergic to) were, in my DSN's own words "excellent", surely if I couldn't carb count then my levels would be up and down?

Rant over 😡
 
Can you produce any evidence that you attended a carb counting course at your old hospital? Eg an old diary with details noted, letter about attending, letter from a member of staff who can vouch that you did attend a course, evidence of leave from work etc. Of course, your current hospital might say that 2 years ago was too long ago, and thus you have to do "their" course anyway, but it might be worth a try.
 
Great news about the pump, but ridiculous to say you have to wait so long just to prove something you can already do! Can you perhaps arrange for an assessment of your carb-counting abilities? I know of at least one member here who was able to do that and got her pump sooner. Get in touch with INPUT to see what they advise. If you've got the ability then why wait for the course, sounds like a ruse to delay spending any money for a few more months to me.

Don't take no for an answer - keep pushing and looking for a way to get past this. Good luck and keep us updated 🙂
 
I'd also get on the phone to the PCT and ask where in the NICE guidelines it says you have to have been on a carb counting course - it doesn't! All it says is that a consultant needs to request it for you.
 
As shiv say's.
Also if I remember rightly all it says is is you have to be able to carb count. Any dietition can work out if you can carb count or not.
My PCT tried the same tact with me, I told em where the bus stop was :D
All it does is deny someone else a place on the course that needs it.
 
i can't believe you are forced to continue with something causing you an allergic reaction!

I am on a pump and animal insulin, so if the human/analogue insulin starts to irritate, then you can try animal in the pump, and hopefully carry on like that.

Good luck! Write down everything you want to say, be clear and assertive.

Document any reactions.
 
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