# Pumpers who started in Nov or thereabouts



## Pattidevans (Feb 8, 2014)

Hi all

I recall when I got my pump on 19 Nov there were 3 or 4 peeps in here who also got theirs.  Just wanted to ask how you are going. Has it all fallen into place without much effort... would you like to chuck your pump out of the window at times?  I'd be interested to hear your stories.

Mine has been a bit of a roller coaster between thinking "this is great" and "OMG however am I going to cope with this?".

So what has been your greatest challenge, your best results, your thoughts?

Can we share and learn?


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## HOBIE (Feb 8, 2014)

Have NEVER wanted to throw out window. Much more user friendly than mdi once you have the hang of controls. I started with glass syringes & panel pins for needles,   Pumps are amazing & tech is getting better every few months


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## Pattidevans (Feb 8, 2014)

Hobie how long have you had yours?  

I am not suggesting that MDI is better, I am just asking about teething problems.


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## everydayupsanddowns (Feb 8, 2014)

I don't think a few 'aaaaargh!' Moments are unexpected at all.

I started in November 2011, and wrote this 'a little bit of everything' post in January. It took me at least a whole year before I felt like I was getting the hang of it!

http://www.everydayupsanddowns.co.uk/2012/01/pumping-for-two-months-little-bit-of.html


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## Pumper_Sue (Feb 9, 2014)

Hi Patti,
please do not worry about the teething problems and wanting to hurl the pump out of the window.
Very few people don't feel like this when things go t*ts up after about 6 weeks.
It's normal, ask Jenny  I did offer her a counselling service as she became so frustrated.
Just remember Rome wasn't built in a day, also please develop sit on handies syndrome IE only alter one thing at a time and wait and see the result.
No 1 rule is sort your basal out first. There's no rush or hurry, it's not a race.


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## Pattidevans (Feb 9, 2014)

Mike


> People often need quite a lot less insulin when pumping, so it's usual for your team to suggest a new total daily dose, basal and bolus ratios. In the first week these new levels behaved pretty well for each of us, but then, quite suddenly at around 7-10 days we found our BG results creeping upward and each of us had to significantly change what had worked fine the week before to establish a new 'normal'.


That has certainly been my experience and possibly the thing which has worried me most, except that it came rather later than the 7 - 10 days you experienced.

Sue

Thanks for your reassuring post.  I know that intensive basal testing is paramount and I've certainly done one heck of a lot of it!  Most of the afternoon/evening testing has been skewed at some point by uncontrolled numbers from the previous meal.  The DSN set my basals at 1:15 all day.  It was a leap of faith for me to do that, because my previous ratios on MDI were 1:5, 1:6 and 1:5.  The 1:15 seemed to work at first, but it soon became apparent that it wasn't working and I was spending long periods of time in double figures - anything from 14 - 21+.  At first I was told not to adjust things myself, but to discuss it with the DSN during our regular phone contacts.  I saw the Endo on 3 January and mentioned that I was unhappy with the 1:15 ratio.  Bearing in mind I got the pump on the basis of frequent hypos, he's paranoid that I try to run my BGs too tight, so he told me to keep a week's food diary and then discuss with the DSN before altering anything.  I kept the diary, I emailed it to the DSN who didn't get back to me.  I did another week's diary and emailed it and got an email back saying "sorry I haven't responded, will be in touch soon".  I haven't heard from her since.  We then went on hols the last week in Jan and when I got back I had a day or so last week near to tears, as I didn't know whether the BGs in the 20s were due to bad insulin (the vial had been on holiday with me - though kept cool), a bad infusion set/bubbles or the ratios.

I decided to take matters into my own hands.   Though I knew my basals still needed adjustment, I nevertheless reduced ratios to 1:12 and on Friday to 1:10.  The difference is astounding!  The highest I've been after meals is 8.8 which feels far more comfortable.

I thought I had night basals spot on as I'd tested through Friday night and they'd stayed within 1mmol until 5am.  Then lo and behold last night at 3.45 I woke from a nightmare to a BG of 2.6 which took me 50 minutes to correct and get back up to 4.4.  

However, I seem, hopefully, to have got the FHTF under control - or not - as time will tell!  Now the ratios seem better I can get back to concentrating on Basals - though that hypo has me wondering!


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## Pattidevans (Feb 9, 2014)

PS.  I'm still interested in the experiences of the other peeps who started at the same time as me.


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## Pumper_Sue (Feb 9, 2014)

Hi Patti, what did you eat the evening of the hypo? Sometimes a type of food may cause the problem or perhaps you had more exercise than normal that afternoon and pay back (hypo) paid a visit. Perhaps have a sugar free jelly for lunch and solve the food bolus issues so you can test your basals, then perhaps have a late evening meal.
Roche used to do packs of 10 cartridges which are basically syringes with a needle on them no fancy extra plastic for filling. If they still do those perhaps ask to try them. It might help with your bubble problem.

Your problem with H is a common problem, no communication. There are other pump nurses down there though so perhaps just ring the centre and ask to speak to one of them. If no joy, don't panic just ask as many questions as you want and or need. We've all been there and worn the shirt.


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## Maryanne29 (Feb 9, 2014)

Hi Patti

I got my pump on 21 November. I was told to adjust the settings as I needed but to be careful to only make small adjustments each time. I had several bad moments over the next few weeks with highs and lows but think I'm getting better control now. I did once want to give the pump back but then the thought of going back on MDI made me see sense. Now things are better and the freedom from MDI is lovely.

My biggest challenge was inserting the cannula as I'm needle phobic. (I was ok with the 4mm needles on the pen but anything bigger gets me very stressed.) So I met with the pimp rep who changed to me to a cannula with inserter and this works well for me.

I'm not certain I'm using all the pump's functions yet but think I'm getting there. No way would I give the pump back now!


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## Pumper_Sue (Feb 9, 2014)

Maryanne29 said:


> Hi Patti
> 
> So I met with the pimp rep who changed to me to a cannula with inserter and this works well for me.



 That did so make me laugh


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## Pattidevans (Feb 9, 2014)

Hi Sue


> Hi Patti, what did you eat the evening of the hypo? Sometimes a type of food may cause the problem or perhaps you had more exercise than normal that afternoon and pay back (hypo) paid a visit. Perhaps have a sugar free jelly for lunch and solve the food bolus issues so you can test your basals, then perhaps have a late evening meal.


It might have been the wine.  We've been alcohol free since the new year but yesterday we met friends in the pub and I had 2 large glasses of white wine.  Then we shared a bottle of red wine with dinner - though I think we finished it relatively early about  9 - 9.30 so a fair while before the hypo.  I'll try the sugar free jelly.


> Roche used to do packs of 10 cartridges which are basically syringes with a needle on them no fancy extra plastic for filling. If they still do those perhaps ask to try them. It might help with your bubble problem.


I can't visualise what you mean Sue... but I am getting better with the bubbles!

I had understood that H was the only fully trained pump nurse, though there are other DSNs and H now has a trainee.  To be fair she was very very good with me to start with and was always approachable.

Maryanne


> I got my pump on 21 November. I was told to adjust the settings as I needed but to be careful to only make small adjustments each time. I had several bad moments over the next few weeks with highs and lows but think I'm getting better control now. I did once want to give the pump back but then the thought of going back on MDI made me see sense. Now things are better and the freedom from MDI is lovely.


Couldn't agree more about the freedom.  We just had a friend round for supper and not having to get my pen out & faff about injecting whilst everyone else tucked in, or more embarrassingly waited for me to be ready before starting their meals was really great.

I'm trying out various different boluses and not sure as yet if they work, because I've only just adjusted my ratios and I am seeing a dramatic difference just from that.



> My biggest challenge was inserting the cannula as I'm needle phobic. (I was ok with the 4mm needles on the pen but anything bigger gets me very stressed.) So I met with the pimp rep who changed to me to a cannula with inserter and this works well for me.


Did you start on the Rapid D link?  I did but I had some problems with it stabbing nastily when I bent over.  I then went onto the flexlink and I think it's brilliant.  The inserter is so easy and you don't feel a thing, most importantly you can leave it in 3 days.

I'm also exploring the functions, I don't think I've used them all yet, but softly softly - I'll get there.  I was just having a bad day the other day, have mostly got over it now.  Looking at the results after meals since I altered the ratios I am much happier.


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## everydayupsanddowns (Feb 10, 2014)

Good to hear things are looking up Patti. It's amazing isn't it how a few days/tests in range or behaving 'as expected' can make a massive difference after a period of BG chaos and frustration. 

Hope things continue to improve.


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## LaughingHyena (Feb 10, 2014)

I started a little earlier, at the beginning of October.

I still don't really feel that I am getting the best out of the pump, but the results are slowly getting better and I can see that there is still more the pump can do.

On a day to day basis, I feel much freer with the pump. Dropping my basal rate has made me much more confident with excerse, taking the kids out on their bikes and that sort of thing, where before I was very wary of hypos. Not that the rain means we've been doing it that much though.

I still find that I'm not being accurate enough with my carb counting, I think my background before was covering up some of the inaccuracies that I now see more clearly. Work in progress there. The same with how different food affect me over time, it was really not something I noticed before but now I;m starting to spot the patterns and I'm getting a bit more confident using the combo bolus to combat them.

Some of the issues that worried me, where to wear the pump, how I'd get on sleeping with it and the big one for me would my little boy be able to pull out my site have all been non issues really


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## Pattidevans (Feb 10, 2014)

Good to hear that on the whole you are getting on well with it Hyena.  I'm still tinkering with different boluses too.


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## heasandford (Feb 10, 2014)

LaughingHyena said:


> I started a little earlier, at the beginning of October.
> 
> I still don't really feel that I am getting the best out of the pump, but the results are slowly getting better and I can see that there is still more the pump can do.
> 
> ...



I started on November 25th, and this reply did ring true with me too.

I also found that the rates they recommended for bolus carb ratios have had to be changed to almost what I had pre-pump. Food is always the issue! My basal tests are almost perfect straight lines, I eat and have a spike or lows! I weigh carbs accurately, but it's obvious I am sensitive to different carbs, the presence of fats, and protein which pretends to be a carb!! In other words, similar to before the pump again! Having said that, there is now more I can do about it, alter basal or use different bolus delivery. What I really need is a CGM with mine...!

I have only seen my DSN once since I started. I have rung Roche 3 times and they were helpful with technical stuff. I am still having bubbles, but I don't think they are the cause of poor results. I have had a couple of bad 'scars' ie bleeding/bruised skin due to cannula, although I couldn't tell. Need to keep an eye on that

I just love the bluetooth effect, no faffing about with pens etc. I wouldn't give it back!

Pump review on Wednesday - I'll try to feedback. Thanks for all yours!


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## Maryanne29 (Feb 10, 2014)

I'd love a CGM too as that would give even more freedom but that isn't likely to happen.

And I need to watch my typing on my iPad! My 'pimp rep' is really a very lovely pump rep.


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## Pattidevans (Feb 11, 2014)

> I also found that the rates they recommended for bolus carb ratios have had to be changed to almost what I had pre-pump. Food is always the issue! My basal tests are almost perfect straight lines, I eat and have a spike or lows! I weigh carbs accurately, but it's obvious I am sensitive to different carbs, the presence of fats, and protein which pretends to be a carb!! In other words, similar to before the pump again! Having said that, there is now more I can do about it, alter basal or use different bolus delivery. What I really need is a CGM with mine...!


DSN reduced my ratios from 1:5 to 1:15.  I knew within a week that 1:15 was far too little bolus, but they seem to be very prescriptive at my clinic.  I was told to keep a week's food diary and discuss with the DSN but I emailed it to her and haven't heard anything so I altered it myself to 1:10 and the difference has been amazing.

I think with the pump I am seeing the effects of different types of meals much more clearly than I ever did on MDI.  e.g. anything with lots of cheese definitely needs an extended bolus and I was really surprised when I ate some pasta that I had good BGs for the first couple of hours, but at 4 hrs + I was spiking.  I don't eat much pasta, but I know to do a dual wave bolus in future if I have it.



> I just love the bluetooth effect, no faffing about with pens etc. I wouldn't give it back!


That's one of the best bits IMHO!  I wouldn't give it back either, even if I did have a wobble last week.


> Pump review on Wednesday - I'll try to feedback. Thanks for all yours!


Look forward to that.


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## Maryanne29 (Feb 12, 2014)

Patti, hi, No I haven't tried the metal cannula. I've got the FlexLink with inserter and it's great. No pain on insertion. You said it can be left in for three days but my rep says change it after two. I think, if it's not causing a problem, I'll try it for three days.


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## Pattidevans (Feb 12, 2014)

I can't remember where - there's so much in the way of manuals, disks and so forth - but I have seen it in print that the Flexlink can be in for 72 hours & cartridge change every 6 days.  DSN did warn that insulin might degrade if you don't change the cartridge for 6 days.  I've actually not left it 6 days yet, I've changed it after 5.  Generally because I've chosen a day when I haven't had to rush about getting ready to go somewhere & by pure coincidence it's been the 5th day each change.


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## Casper (Feb 12, 2014)

I started pumping on November 13th - have had lots of appointments with pump nurse up until Christmas when I'm trying to go it alone, so to speak!  

Had loads of hypos the first few weeks, reducing and reducing basal bit by bit.  Used to inject 9 - 10 units of background a day, but now its down to just under 7 units for the 24 hours. Nurse says thats because of far better absorption from cannula.

Had a few issues with bent cannulas and inset ll that came apart whist unwinding tubing, have trialled a couple of other infusion sets, but am getting on better with the inset lls now. 

The flexibility is amazing - correction doses so precise, exact amount of carb content can be put in, love the tbr feature, especially at the mo, as I've got a broken ankle and bloods were slightly rising, enter a tbr of +20%, and hey presto! 

I always bruised easily with needles, and that is another big plus for me, no bumps, bruises or bleeders now 

Its a wonderful little thing and so much part of my life now.  Next step will be to have my hba1c done - fingers crossed!


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## heasandford (Feb 13, 2014)

yes, the next HbA1c - had blood sample taken for it at the pump review clinic on Wednesday, so that'll be interesting!

Met up then with the 4 of us who started pumping at the same time, we must all be up for it as we all turned up, not always the case I believe.

Well, results were better than they had been BEFORE going on the pump, if not by much, and the DSN was so encouraging to us all. Just small recommendations, and everyone adds their bit, I'm sure the encouragement matters as much as anything. We were all somewhat floored to hear that one of our group (don't think she'd mind me saying this) had been a homeless drug and alcohol dependent less than 5 years ago, now incredibly positive (best results of all of us) just finding joy in life at being well and supported by the NHS and Britain's wonderful system - her words. Came home feeling anything was possible and will try harder than ever.


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## LaughingHyena (Mar 10, 2014)

Had my first check up at the pump clinic today and first post pump HbA1C results.

7.1, still a lot of room for improvement but my last one was 8.6 so I'm pretty pleased.

We spent a bit of time going back through my results, mornings are looking OK, most of my problems are in the afternoons. So it's another round of afternoon and evening basal testing for me.


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## Northerner (Mar 10, 2014)

LaughingHyena said:


> Had my first check up at the pump clinic today and first post pump HbA1C results.
> 
> 7.1, still a lot of room for improvement but my last one was 8.6 so I'm pretty pleased.
> 
> We spent a bit of time going back through my results, mornings are looking OK, most of my problems are in the afternoons. So it's another round of afternoon and evening basal testing for me.



That's a terrific result!  You don't want things coming down too quickly, so it looks like you are making great progress


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## Maryanne29 (Mar 10, 2014)

I got my pump on 20 November and still not been to a pump clinic. Not sure there is one at my hospital. My DSN at the GP is lovely but has no idea how pumps work Still Roche are very helpful with any queries.

Good news is that I now feel so much better and have a lot more energy. Very glad I didn't give up on the pump although it was tempting in the first few weeks!


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## Pattidevans (Mar 10, 2014)

Laughing Hyena

That's a brilliant reduction in Hba1c.  Well done!

Maryanne - who gave you the pump in the first place?  Do you not go back to see them rather than the local hospital?  I presume whoever gave it to you is funding it?


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