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Newly diagnosed, thinking about pump

  • Thread starter Thread starter CelalDari
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CelalDari

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I’m 18 years old and was diagnosed with type 1 diabetes slightly more than a month ago. I’m doing multiple daily injections using Lantus and NovoRapid.

My problem with injections is not pain or anything but the actual logistic side of things. For example it’s a bit awkward injecting yourself in public. I feel an insulin pump will make my life so much easier. However I have several concerns:

1) You change your cannula every 3 days so insulin enters in the same site for 3 days, I’m concerned about lipodystrophy. Anyone experienced this?

2) Can you sleep with the cannula attached to your hip or abdomen? For example when turning around? I’m so scared that I might turn at night and end up sleeping on my cannula which can cause bleeding?

3) Is the insulin pump widely offered? I’m so worried about not meeting strict requirements. I’m guessing the NHS doesn’t offer the new self-adjusting pumps but only the basic ones.

4) How often has your pump failed you? Bleeds, incorrect dosing etc

5) Do you remove your pump during international travelling?
 
Hi @CelalDari ,
I don't have experience with pumps or the NHS (different country) but I've had diabetes for over 3 years now.
CelalDari said:
My problem with injections is not pain or anything but the actual logistic side of things. For example it’s a bit awkward injecting yourself in public.
Click to expand...
When I first started on insulin I had to decide how to approach this side of the condition. The way I solved it was to not care about it. Injecting doesn't need more than a square inch of skin between pants and shirt. Or even a hole in a shirt. Ive grown to particularly love old shirts with a small hole here or there
By now I must've given myself a couple of hundreds of injections in public (restaurants, shopping streets, family gatherings, public transport, walking around at flea markets, in the middle of a dancing crowd at a concert, in waiting rooms, at work, you name it) and never has something awkward happened.
Sometimes people will ask a question. If that happens I'll answer the question and then we proceed to doing whatever it was we were doing before.

I can understand how that can be difficult at first, but you'll be doing yourself a huge favour if you can decide it's fine to have people see you need to take care of your diabetes.

Good luck!
 
Hi Matey,

Firstly, and most importantly, well done for taking the time to do some research and asking some excellent questions.
I will try to answer your questions based upon my own experience, but bear in mind that each person can have a different experience.

Q1. Lipodystrophy.
You may, or may not have to keep in your cannula in for 3 days. A few things can affect this. I was started on a Teflon canulla which I was told would last 3 days. However, my experience was that the Teflon was not injecting the insulin deep enough and I was suffering from a large number of the Teflon canulla were bending instead of going in.
Therefore I decided to change to Steel canulla. These did not bend (Pro). They were a little longer (Pro). They did not need a big insertion tool (Pro).
However... (there is always a BUT)... the steel cannulas have to be changed every two days.

The other thing that will affect how often you change your site is how much insulin you will need to take.

If you currently take a LOT of INSULIN, as I do, then you have to evaluate how much insulin your pump can hold. My insulin intake was so high, that I had to have a pump that could contain more than 200 units as I need about 250u every two days.

"How do I know how much insulin I will need?"
When I did my pump course, they used a special form that I had to fill in and the first calculation was how much insulin I would need.
To work this out, you have to add together both of the insulins you inject using your pens and then take away about 30 percent.

So, if you take 75u of Basal insulin and about 75u of Bolus throughout the day, then you add them together (150u) then times by 0.7. So 150u x 0.7 = 105u
So this is your daily requirement.

So, if you did need this much insulin (like I did) then 2 days = 210u and 3 days would be 315u.

Most pumps only hold 200u.
However, MOST diabetics take much less insulin a day than me.

Lipodystrophy can be an issue if you put the canulla in the same place every time.

2). Sleeping with a cannula.
I have never had an issue with bleeding cannulas at night time.

3) Pump availability
You will be lucky if you have a choice to be honest. Lots of people report that their team only offer 1 or 2 pumps.
I was lucky, because my team offered a choice of 5 pumps, which is very rare.
However, I wanted a pump that they did not offer, and by proving that I had done ALL the research, and I presented my Endo with a fully listed set of reasons why I wanted a specific pump, they supported my case to get my pump added to the list.

To be honest, the thing that will probably affect your decision will be whether you will want a tubed pump or a patch pump.
In my group of pumpers, I was the only one who asked for a tubed pump. The other 9 people all asked for a patch pump.

By "self-adjusting" I take it that you mean pumps that have software that has a closed loop system. There are not many pumps that currently do this. The issue that you come up against here is not getting the pump, it will be getting the right CGM. Quite a few diabetics have got Freestyle Libre sensors via the NHS but these on their own are not true CGM devices. Libre are actually FGM sensors and therefore you will either have to buy a device called a MiaoMiao (£160), or try to convince your Endo to support you to have a Dexcom G6 sensor.
GOOD LUCK ON THIS. Very few adults are given Dexcom sensors on the NHS.
To self-fund a G6 costs £159 a month.

4) Pump failure
This appears to be a very rare event in the Diabetes world. I am not saying it doesn't happen, just that it doesn't appear to happen very often.
Incorrect dosing is almost ALWAYS the fault of the user, not the pump.
With every new pump, there comes a period of learning, whilst you get used to using it. Also, getting the right type of cannula can affect how well your pump works.

5) Travel.
Here I no personal experience as I have not been on holiday since getting my pump.
I blame HMRC for this for mucking up my tax code them "stealing" all my money!

I know this is a big reply. But you asked a lot of questions.

Good luck

My pump: Tandem t:slim X2
My CGM: Freestyle Libre + MiaoMiao
Cannula: 6mm Trusteel with 13" tube
 
Excellent answer.
 
Hello @CelalDari It’s great your interested and keen to know more.

If you decide you want to start pump therapy there’s a few things to consider, what criteria will your CCG have for funding a pump for you ? Some trusts are reluctant to offer pumps due to the sheer cost, pumps cost a lot of money, some trusts are restricted on funding and will only fund a limited number for patients so it’s best to ask your diabetic team about their criteria.

They would also require you to complete a Dose Adjustment for Normal Eating DAFNE course first, so you need to show that you are out of your honeymoon phase, which can take a year before doing DAFNE and the course shows your team you are capable of making adjustments and managing your condition so competent at managing your pump as having one requires a lot of work and effort, pumps aren’t magic wands as they require constant monitoring.

I don’t want to dampen your enthusiasm but if you do decide this is the best way to manage your condition then it will take a while before you can access one.
 
Since @Capt-Slog has given lots of useful information for the other questions, I'll answer number 5.
CelalDari said:
5) Do you remove your pump during international travelling?
Click to expand...
Some people choose to have a 'pump holiday' when they go away, I've never done that so perhaps if anyone has, they can advise on their reasons for doing so. My pump has been on all my holidays with me.
Is there a particular reason why you think you would/should remove it for travelling?
I had been diabetic for 15 years before I got a pump, and even then it was only because I had lost hypo awareness and was having problems from not waking up when having hypos during the night. Unfortunately it's not as simple as you want one, so you get one, unless you are going to self-fund.
 

Well firstly I’ve heard some stuff about the scanners at airports and the radiation messing up your pump.

Also let’s say you’re at the beach, I’m pretty sure the cannula and pump can’t be worn under water.

I’m also worried about changing my pump site. For example imagine putting it on buttocks and you have to sit on your buttocks. Or putting it on the back of the arm and sleeping on your arm sideways.
 
I’ve had a pump now for 9 years. It has changed my life, literally. I can now lives a pretty normal life and no one knows I’m diabetic unless I tell them.
The pump is waterproof so can be worn in the sea/ pool but you can disconnect for short periods of time and put a waterproof cover on the cannula, ( this comes in the pack).
People think it is a mobile phone, I clip mine to my bra if wearing a dress or pocket of jeans etc.
Last year, when going through security at the airport, I disconnected it and gave to security guard as I went through scanner. It was absolutely fine. I also had a letter from my consultant to say I was using pump therapy.
I sleep with mine just unclipped and even though I move about in my sleep, it is never a problem.
Hope some of that helps.
 
I’d recommend a patch pump like Omnipod. Totally waterproof, no tubes to catch on anything and really discreet. Changed every three days, and you can integrate it into a closed loop system if you have a CGM. I love mine, it’s changed my life.
 

You can't wear your pump through a body scanner (medtronic, not sure about others), nor can it be x-rayed with your hand luggage, so you can get letter from your DSN or one from medtronic, I've never needed to show it, I say I have a pump, it can't go through the body scanner and sometimes you get your hands swabbed, sometimes you get your pump swabbed, maybe a pat-down or a go over with the wand. I've only had a problem once and that was in the USA.
Cannulas can be worn in water, so you can swim, you can have a bath....I think most pumps are waterproof but you can have a bolus and then disconnect while you go in the water if that's what you prefer. If its hot you may not need a bolus and obviously it depends how long you'll be disconnected for.
Personally I've never put a cannula in my arm or buttocks so can't advise on that.
 
Hello @CelalDari Out of interest where are you doing your research ?

Haven’t met anyone who uses their buttocks for siting cannula sets, you would have to be incredibly ambidextrous to do this successfully, most use tums, arms and tops of legs. Pumps can be waterproof I use the Medtronic 640g which can be worn for bathing and swimming however I choose to remove it and bolus insulin to correct if required.

They can be removed for scanners at airports which is fine, I don’t even take a letter these days as tracked so much and am never asked, they are designed to suit your lifestyle.

A I mentioned earlier check your trust’s criteria for qualification first before building your hopes up as it’s dependent on this first.
 
Hi @CelalDari

I've been IDD for 49 years, I'll try to answer your questions based upon my experience.

It’s a bit awkward injecting yourself in public.

[Chas] Since moving from syringes to pens (1980's ?) I've never worried in public and never been asked in restaurants, trains, planes, pubs etc etc.

1) You change your cannula every 3 days so insulin enters in the same site for 3 days, I’m concerned about lipodystrophy. Anyone experienced this?

[Chas] So you must must rotate sites I've been pumping 8 years and never had issue with stomach and arms. I no longer use my legs due to very poor rotation in my younger years with injections. If your active then go for Teflon, they come in many lengths and are not as hard to use as some say, otherwise steel. I never last 3 days normally 2 to 2.5 on Teflon.

2) Can you sleep with the cannula attached to your hip or abdomen? For example when turning around? I’m so scared that I might turn at night and end up sleeping on my cannula which can cause bleeding?

[Chas] Never had any issues at night.

3) Is the insulin pump widely offered? I’m so worried about not meeting strict requirements. I’m guessing the NHS doesn’t offer the new self-adjusting pumps but only the basic ones.

[Chas] At my clinic there are 4 or so on offer but it varies by location.

4) How often has your pump failed you? Bleeds, incorrect dosing etc.

[Chas] In 8 years I've had one pump failure, never had an incorrect dose, you can always get an under skin bleed from hitting a small blood vessel but that's same for injection as it is for pump. Shows up as a bruise after you remove cannula and goes in a few days. Always carry a spare short acting and long acting pen (enough as you need for each trip), if I'm away from home for more than a day I carry pens. Always carry spare cannula's etc too.

5) Do you remove your pump during international travelling?

[Chas] Never, always connected until I retired at end of last year I flew all over the world every 3 months for 20 years. I only remove my pump to shower, snorkel and swim. For every other sport/activity I wear it.

Great set of questions, hope these replies help.

P.S. the first three or so months of pumping is intense but once your all set up its pretty easy.
 


Wow! Thanks for this very detailed post. If we can’t get a pump on the NHS, would it still be possible to get it privately, i.e. purchasing one myself?
 
you will need a doctor to proscribe it for you i think i think thats what i was told 10+ years back
 
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