The Pumpers Thread!

[tracey w]

morning all, Lou you crack me up, hypos not funny i know, but you are girl! 🙂

well first cannula change went smoothly, its the set change im morenervous about but sure i have nothing to worry about.

Yes numbers getting higher, 16.9 at 1 am crickey, so corrected and was 12.9 at 3 am and 11.8 at 9am.

dsn away until wed😱 but she called me last night to check on me and reassured me im doing good and is a slow process of investigation and changing basals slowy, so will have to keep correcting for now, have changed a morning basal but still high, she said to leave for 3 days before changing it a gain. Oh and she gave me her mobile if i need it, not had that kind of attention before 😱

sorry to hear about A bev, and the other traumas that seem to be going on, again i dont comment as i dont have children and you are all great mums and doing the right things all the time.. Only thing in common to me is the diabetes and yes it can just hit you when you dont expect and make you a little teary, angry etc. I know your kids are so very lucky to have you all as parents and your support is wonderful. have a good day all 🙂

 

[Patricia]

Hi all

Quick touching base...Tracey, very glad to hear from you -- and glad you have so much support. This is just vital, I think; otherwise it's all a bit much! Personally though I don't think it's worth waiting three days between adjustments -- I think this is a leftover from long-acting insulin days. With both seriously out of range highs and scraping the barrel/mild lows, we adjusted daily to avoid them the next day, on the advice of our dsn/daily contact...With the more medium numbers -- 9s & 10s say, we will even now often wait two or even three days to see how it pans out. I don't know what others think, and how you feel about tweaking without knowledge of your dsn...Lou, you're a bit of a rebel, what did you do?!

Congrats though Tracey on successful cannula change -- yay! It gets easier.

Bev, I'm glad A feeling better. It's so hard. I hope the day goes well for him, and that the temp was at least in the right ballpark! I know the feeling...

This end I'm pleased to report that rice was *surprisingly* okay last night! He was *not* high in the night nor this morning. WHAT? However, he was a little low at two points: 4.7 at beginning of meal; 7.4 or something 2 hours in. Then he went to sleep so we couldn't test right at the end of the dual wave, waited, then at 4 hours he was a little low, 4.8. Woke for juice and a tiny biscuit (only about 8g carb total). Then got up two hours later and he was 5.4. Gave a little more juice (like, 5g) and he was 5.2 this morning.

Last night we did 50/50 over 3 hours. We will try next 60/40 over 3 hours (to lower the dual wave insulin going in), because that's a manageable time frame for us to do the testing, and hope for the best. I fear he may hypo at 2 hours with a 60% up front bolus, but maybe not. Last night he started quite low anyway, so it could be that on a more typical starting number like 6, a 60% up front will be fine. Anyway the good news is he didn't wake on 14, which he has always traditionally done.

Dare I say it: we feel we are beginning to actually *undersand* dual wave, eg what to change to a different hoped for effect! Not that it works all the time, but suddenly the principles of it are becoming clear...

Okay. Phew.

Oh Mand: forgot to say that yes we almost always bolus before a meal, and if he's high and we catch it a few mins before eating, we punch in the whole lot with correction so that he might have a chance to be lower when the food goes in.

Very occasionally he'll say he's not very hungry and we'll see how much he eats before bolusing. And rarely he's not really enjoying the meal, and we'll let him leave it and 'top up' with a biscuit or some juice or something...

Obviously in a buffet or party situation, it's completely different. That's difficult!

xxoo

 

[Adrienne]

Thanks all for your kind words - i really means a lot because you can all relate to how things are with diabetes.🙂

Adrienne, I had never thought that J had not ever had a diagnosis day - but of course it was the day she was born....I am in two minds about what to 'do' on Alex's diagnosis day - not sure whether to mention it to him in case it upsets him even more - i may just be guided by him -thats if he remembers!

Also, just to say i dont really comment on J's highs or lows - not because i dont care - just simply because you already know everything and i feel i have no wise words to add! But i do feel sorry for her having all those hypo's and then the crazy highs.......have you got to the bottom of it yet? Is it simply being back at school do you think?

I had rung you the last week because our 'nice' consultant wanted to know exactly what sort of support other hospitals offer to their pumpers - I had complained to him that i felt abandoned (he had been on holiday when we started pumping) - so he invited me to send an email detailing what sort of help i would have liked and what sort of help all the people on the 'list' get when they first start pumping. I sent him the email and he was really grateful - so were the DSN's - they told me they are going to show it to the PCT to help get more funding for more staff - and they told me that they do realise that they are not giving the amount of support they would like to give and they feel really bad about it! They want me to keep them updated with what other teams offer as they want to improve their service - so i am happy with this - even though i was a little worried that i would be labelled as troublesome - but they have all re-assured me that they value my input as they need to see it 'from the other side' as it were.🙂

A has gone on an adventure day today - so set a 45% temp basal for the whole day - its a very active type day - not sure if this is right - we will see later on!🙂Bev

Ha see Bev. Told you not to doubt yourself ever. You are a powerful person. I love that word. Someone told me I was powerful the other week and when I thought about it, yes I am. I have helped to move things and am doing it where I live now. You are as well. Your whole team are not learning from you and want to learn from you. What an honour. They have 20 odd on pumps but it seems no-one has spoken out until you !!!! Well done.

I hope A has a lovely day today.

Jessica has been chosen to do a presentation today to the class. She has chosen.......wait for it........diabetes !!! She has taken Rufus bear, Ruby bear, Pumpernickel the pumping monkey, books, a clay pump, her real condition's leaflet etc etc. She has 45 minutes to talk. She has taken 4 different make of finger testing kit and was looking forward to it. She will be just finishing it now. I'm very proud of her. But you know what, like mother like daughter. I love standing up and talking to a room full of people and educating them about diabetes. That's my girl

 

[Patricia]

Hey Bev and Adrienne

I'm proud of you and your children on your behalf! This is good, good news -- that you Bev are using your experience, and Adrienne, that your daughter has inherited your power.

I ended up in a conversation with the mum of a friend of my daughter's (sorry) in M & S last week...And it was a sort of upsetting conversation, I was tearful, etc...(I think I wrote about it here). But what she said at one point really stuck with me. I was saying, 'you know, we as a family didn't need to learn a lesson about appreciating what we've got! We know what we've got. I am thankful every day and always have been, so I don't hold with this you grow stronger from meeting challenges thing...We didn't need to. I'm strong enough.' ANYWAY, she said, 'well, maybe this has happened not in order to learn something, but in order to teach it. Maybe you are supposed to do something with all this in the world.'

I was floored. I barely know her, and I'm not a big believer in pre-destination -- but I think she's right. I'm sure she's right. And have felt quite empowered ever since the conversation...

 

[Sugarbum]

Quick start writing Patricia!

I think the essence of what this lady said to you you may have already have known this. I feel this sentiment- I think someone needed to say it directly to you to realise. You already do help people by writing about your experiences the way you do, but also when you have previously spoken about getting something down on paper I dont think you realise that not only do we enjoy what you write, you capture us completely, like in your thread (I dont know why Im telling you this, you're a writer- of course you do!)....

 

[Patricia]

I feel all touched, Lou -- thank you. Sniff. It's one thing to know how other people's work affects you, but another thing entirely to know how your work affects others. Usually I write with the feeling I'm just putting my two pence in, and hey it's important to me, and if someone is affected, that's a plus...But with writing about diabetes, it's a bit different. I've done a lot of it recently, and am thinking of lots of ways to use it -- out in the world. It's no longer that I think it would be kinda nice for people to be affected -- People need to be affected.. Both as a way of connecting and exchanging support/solace, and as a way of gaining understanding about something which is so little understood.

Sigh. I did need to hear it Lou, and probably as you say from someone who is not directly involved. I know in my heart this is what I am doing for the next few years at least.

***

Tiny update: good numbers yesterday across the board.

My husband and I went out together to a dinner party for only the SECOND time since diagnosis 10 months ago! 😱

All was well. E was 10.1 at bedtime, and corrected. We tested him 1.5 hours later and he was only down to 9mmol, so we thought a *tiny* fudge and went to sleep...At 7am tested him, and he was 4mmol. Oops. Not dreadful, just a bit of a drop really, unexpected. Suspect the correction continued to work a bit...bringing him down to perhaps 6, and then maybe his basal's slightly off...? Will put the numbers into the computer, but then again his levels have not been wildly stable since the weekend so I guess we'll have to wing it and wait for a pattern to emerge...

Looks like another 3am test tonight! Oh well, one night's respite was good.

How is everyone else? A's day?

Tracey, you hanging in there?

xxoo

 

[Mand]

Gosh Patricia. What an interesting conversation with your friend! But i think she has a point and i am delighted that your writing could be of help and support to others. How nice that you went out with hubby! It is so important to do stuff like this. 🙂

Hope you are getting on well still, Tracey and hope that Lou, Bev, Becca and Adrienne and all you other pumpers and pumper moms are doing ok.

I am going to study my sons readings this weekend and see what i can tweak for school next week. He seems to be still too high after breakfast, despite changing to 1:6 for breakfast! Will try 1:5 now. Also seems too high before lunch so might need to tweak this basal. Other numbers generally good though.

As he has been going to bed on good numbers and waking on good numbers generally, i have not been night testing but i think i will do so next week to check he not going up and then back down.

I have had 4 weeks rest from night testing which has been bliss but i need to do it again but only to check. If all ok then i shall stop again. Fingers crossed for good readings!!

Hope you all have a good weekend. 🙂

 

[bev]

Hi all,

A had a great day yesterday - his levels ranged between 6 and 11mmols. NOT ONE HYPO!!!!!!!!Really pleased with this - i had only guessed at 45% temp basal - so its good to know i am getting a 'feeling' for it now!🙂

(read my thread called 'made me sad' - awful....

Patricia, even before we 'officially' knew that you were a writer - i suspected you must do something with words! Everything you write keeps me enthralled - which is amazing in itself as i very rarely finish a book as i get bored so easily - so to keep me interested takes a lot!(although strangely i have nearly read every page of the Ragnar Hannas book!) Like Lou said, you probably were thinking along this way even efore this lady said it out loud - but its great that she did as it probably helped to clarify it for you....

Adrienne,
I take my hat off to you and J - i could NEVER speak in front of lots of people! Thankyou for telling me i am powerful - its a lovely thing to say and it did make me feel a bit proud of myself! I told A what you had said and he said 'well you are mum - and you should be proud of yourself'! Then he said ' mum i think Adrienne knows more than the DSN's - so why isnt she one'? - so Adrienne how about it? I know we would choose you if you were!
How did J's talk go at school? She sounds very confident - this is great for a 9 year old.🙂

Lou, Mand, Tracey and everyone else - i hope your levels are good and your having a nice day - its really sunny here.....🙂Bev x

 

[Adrienne]

Gosh Patricia. What an interesting conversation with your friend! But i think she has a point and i am delighted that your writing could be of help and support to others. How nice that you went out with hubby! It is so important to do stuff like this. 🙂

Hope you are getting on well still, Tracey and hope that Lou, Bev, Becca and Adrienne and all you other pumpers and pumper moms are doing ok.

I am going to study my sons readings this weekend and see what i can tweak for school next week. He seems to be still too high after breakfast, despite changing to 1:6 for breakfast! Will try 1:5 now. Also seems too high before lunch so might need to tweak this basal. Other numbers generally good though.

As he has been going to bed on good numbers and waking on good numbers generally, i have not been night testing but i think i will do so next week to check he not going up and then back down.

I have had 4 weeks rest from night testing which has been bliss but i need to do it again but only to check. If all ok then i shall stop again. Fingers crossed for good readings!!

Hope you all have a good weekend. 🙂

Mand

Don't forget, it might not be the ratios, could be the basals which could deal with the post breakie spike ! x

 

[Adrienne]

Hi all,

A had a great day yesterday - his levels ranged between 6 and 11mmols. NOT ONE HYPO!!!!!!!!Really pleased with this - i had only guessed at 45% temp basal - so its good to know i am getting a 'feeling' for it now!🙂

(read my thread called 'made me sad' - awful....

Patricia, even before we 'officially' knew that you were a writer - i suspected you must do something with words! Everything you write keeps me enthralled - which is amazing in itself as i very rarely finish a book as i get bored so easily - so to keep me interested takes a lot!(although strangely i have nearly read every page of the Ragnar Hannas book!) Like Lou said, you probably were thinking along this way even efore this lady said it out loud - but its great that she did as it probably helped to clarify it for you....

Adrienne,
I take my hat off to you and J - i could NEVER speak in front of lots of people! Thankyou for telling me i am powerful - its a lovely thing to say and it did make me feel a bit proud of myself! I told A what you had said and he said 'well you are mum - and you should be proud of yourself'! Then he said ' mum i think Adrienne knows more than the DSN's - so why isnt she one'? - so Adrienne how about it? I know we would choose you if you were!
How did J's talk go at school? She sounds very confident - this is great for a 9 year old.🙂

Lou, Mand, Tracey and everyone else - i hope your levels are good and your having a nice day - its really sunny here.....🙂Bev x

Hiya
Thank you very much A but please tell him I have friends who know so much more than me. I could never be a nurse. I would have to do 3 odd years training and then only be a DSN if there was a job available so not on the cards. I would love to do something like that though and there are talks about me doing something but can't say anymore than that for the moment !!

I'm so pleased that levels were better for A. x

 

[Sugarbum]

Hiya
Thank you very much A but please tell him I have friends who know so much more than me. I could never be a nurse. I would have to do 3 odd years training and then only be a DSN if there was a job available so not on the cards. I would love to do something like that though and there are talks about me doing something but can't say anymore than that for the moment !!

I'm so pleased that levels were better for A. x

Now stop woman, dont torment me!!!
You would be a fantastic DSN! You could always do an accelerated nursing course which is now only 2 years and bobs your uncle. OR YOU COULD STOP TEASING US AND SPILL WHAT YOU'VE GOT LINED UP!!! V. exciting!

Not much to report from me on the pump front this weekend as I seem to be stuck somewhere between D.I.Y and hell.....oh, and a new basal rate but that wont matter as I have just eaten a monumental dose of pasta and chocolate pudding over X Factor with the girls...and the plonk- you know how it is 😉
xXx

 

[Patricia]

Morning Monday all

Lou, we too were glued to X factor -- some good people this year, methinks!

Bev, so glad numbers are looking/feeling better. A relief for you I know.

Adrienne, I'm with Lou on this, but understand that sometimes things have to stay quiet for a while! Anyway I hope it's good for you and what you want, and what you are good at. That would be great.

Mand, hope this week is a stable one for your son...

Tracey: how goes it?

Becca, haven't seen you in ages. And howdy everyone else too.

Greetings overwith, just popping in to say that all is well this end too. Had a couple of interesting things over the weekend: one, did rice again and this time a much bigger portion along with chili con carne. We changed it to 60/40 over 3 hours and it kind of didn't work! Hypo at 2 hours (up front bolus too much), and a late rise of some sort. Of course we'd had to treat the hypo, so that was 20g of juice floating around unaccounted for, so who knows the effect of that...Anyway have come to two conclusions: FIRST, that 50/50 is better, but to avoid a late night low of last time (started at 4.8mmol, went to 4.0 at 5 hours), will try a little free carb with meal if starting level is low. If starting level higher, will try the 50/50 3 hour without free carb and see what happens.

SECOND, we may need to limit the meal size in terms of carb. We exceeded his maximum insulin dose with this one, (not for the first time; we do think this needs changing), but it was over 100g cho only rice -- and this may just be the limit? I've heard others on this board say that a big whack of carb is just too much even though in theory if the dosing works for a smaller dose it should work for a larger one...Anyway we will try to limit next time, and see.

We also had a 'change the set just in case' scenario yesterday. Did set change at 5.30 ish. (First error: for some reason did not test before doing so!) Hour later was 11.6 or so, unusual. Corrected. Then time for bath. When got out (40 mins after correcting), was 12.5. Made him wait for dinner for a few minutes, and then was not going down (13 or so)...SO did a quick set change just to be sure. The set had hurt going in, and upon occasion afterward, unusual. We then overrode the pump's understanding of active insulin on board, and bolused dinner with a correction. An hour later he was the same as when he started, so we concluded that the insulin was working. In two hours he was at 9, and at 7 in 2.5 hours etc...

Who knows if there was some kind of malfunction? But when the set came out , it was a bit bloody, which has never happened. And it had hurt. So better safe than sorry, as it were. All sorts of other things may have interfered -- the set change itself, the bath, etc -- but we really didn't want a repeat of last week! So we waited at every stage to make sure the insulin was actually going in.

LESSON: always test before a set change. We always do, except for this time (!). And we would have known from that if the first reading of 11.6 was actually out of kilter or not, particularly as he doesn't tend to rise from a set change...

Oh, and one more thing: does everyone else keep the old set in for at least an hour when you change? We were advised to do this for two reasons: one, so that it could be used again if something went wrong with the change; and two, to allow any tiny amount of extra insulin caught in the cannula to go in... I've often wondered if part of why E doesn't rise is because we always leave the set in...but then again, maybe everyone does this?!

Bye for now...🙂

 

[Becca]

Hi Patricia and everyone 🙂

Have been busy trying to set up my business venture and it's all looking very promising if not a bit scary! eek!

We've been struggling with Rose at the moment, she's become quite ''stable'' at the moment and it's very odd, she's having days where she stays under 10! That's not like Rose at all, so i think her little body is a bit confused as she feels low but isn't - in 6s or 5s. We've had a few low hypos though and so have adjusted basals which have now made her 12mmol/L at 10am this morning (school phoned) so think i should have left the basal and just touched the bolus....we'll see. Rose has had a period of about 3 weeks now of good levels and it's really odd, long may it last but i have a feeling we've had a good phase which is on it's way out.

 

[randomange]

Hello everyone, I hope you're all well!

I got an email from my DSN today to say that I have been put on the list for a pump! I'm trying not to get too excited as I have no idea how long this list actually is or what happens next, but at least I've been approved by the consultants!

I'm sure I'll be reading my way back through this thread for all the great advice that's on it - I'll definitely need it! 😉

 

[bev]

Hello everyone, I hope you're all well!

I got an email from my DSN today to say that I have been put on the list for a pump! I'm trying not to get too excited as I have no idea how long this list actually is or what happens next, but at least I've been approved by the consultants!

I'm sure I'll be reading my way back through this thread for all the great advice that's on it - I'll definitely need it!

WOOOOOOOPEEEEEEEEEEEEEEEEEEEE!!!!!!!!!!!!!!
I am so pleased for you - if i can give you a tip - start keeping very thorough notes - it will help to work out the 'new' basals and ratios for the pump. Also, keep checking with them to find out if and when they have applied for funding and when you know that - ring the PCT yourself to check they have the paperwork - if i hadnt done this we would still be waiting now!😉

A has been running higher after evening meals (10 or 12)- so i thought i would increase his meal ratio. But, have done this tonight - changed ratio from 1;15 to 1;12 - big mistake - he has had 2 hypo's since eating! I wouldnt have thought it would have made such a big difference - but obviously it has - so will be re-thinking the basal instead i think.

No other news really - how is everyone else?🙂Bev

 

[katie]

I have a friend who's on the pump but might swap back to MDI because his infusion set sites start to bleed after a day. Anybody heard about this problem? Just wondering if I can point him in the direction of some advice.

 

[Mand]

Hi Patricia, Bev, Becca,Adrienne, Lou, Tracey and everyone else.

So good to read all your updates!

Good luck Randomange! Will keep fingers crossed for you. 🙂

Well, my son was running high after breakfast so changed the ratio but now he hypo after breakfast so have put ratio back to what it was and increased the basal instead. Will see what tomorrow brings!

Good set change today! Patricia, i have never heard about leaving old one in for an hour. Interesting!

Not a lot to say at moment but thinking of you all.

Mand x 🙂

 

[Becca]

Oh, and one more thing: does everyone else keep the old set in for at least an hour when you change? We were advised to do this for two reasons: one, so that it could be used again if something went wrong with the change; and two, to allow any tiny amount of extra insulin caught in the cannula to go in... I've often wondered if part of why E doesn't rise is because we always leave the set in...but then again, maybe everyone does this?!

Bye for now...🙂

Hi Patricia

We do keep the old set in purely, like you say, because of the small amount of insulin that might be caught in the cannula that hasn't gone through yet. 🙂

 

[Becca]

LOL! Sorry Mand cross posted with you! 🙂 As i mentioned to Patricia we still keep the old set in for an hour or more.

Katie - has your friend tried other sets? Or different length cannulas?

 

[bev]

I keep A's in for an hour - it gives us a feeling of safety that if the new one fails - we can quickly revert to the old one until we see what the problem is. Then we test after an hour and he has always eaten so we know that the new set is working.

Adrienne, we got the sample of lift off spray that you mentioned - great stuff - no red skin or soreness like before - so thankyou!🙂Bev