Author Topic: argh, more small leaks  (Read 665 times)

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Offline himtoo

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Re: argh, more small leaks
« Reply #15 on: 05 August 2018, 09:22:16 AM »
Hi Nyt
any update on how pump life is going........................ :)
T1 Dia Aug 1972 -pumping omnipod since 29/09/15  Losartan 100mg , simvastatin 40mg,Furosemide 40mg, Omeprazole 80mg , Doxazosin 8mg
Hba1c - 02/2014 43(6.1) 07/14 42(6.0) 08/14 40( 5.8 ) 12/14 39 (5.7) 08/15 41 ( 5.9) 10/15 44 ( 6.2 ) 03/16 49 (6.6) 04/18 46 (6.4)
cholesterol --nov 2011 4.3 june 2012 4.4 June 2013 4.1 Feb 2014 4.1 dec 14 4.5 oct 15 4.4
Dafne grad. necrobiosis lipoidica on legs
laser treatment on both eyes 2002 and 2012, injections left eye 3 , wearing Noctura mask since oct 2014

Offline nytquill17

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Re: argh, more small leaks
« Reply #16 on: 05 August 2018, 05:52:31 PM »
Hi Paul! Yes sorry been a bit less chatty on here lately! So here, let me make up for that now all at once  ;D 

In non-pump news, the 21-week-long strike by teaching assistants, research assistants and contract faculty at my university is FINALLY over, although sadly through government intervention rather than through actual negotiation. It was the longest strike in the academic sector in Canadian history. I'm glad to be back to work and to see signs of life on campus again, but there's a mad rush to get all the paperwork done and to try and limp through the remaining material (for students) and work hours (for us) from a term that was interrupted 5 months ago. And of course it's like pulling teeth trying to get clear information about procedures and things because nobody really has a clue, this is an unprecedented situation!

Pump-wise things are going well! My time in target for the last month according to Libre is 61% (and 75% for the last 7 days - I'm getting the hang of things!) Still some minor frustrations and of course I'm constantly running into situations that I don't know exactly how to handle. E.g. "Wait, should I reduce basal by 25% or 30% for this? For 2 hours or 3?" Of course I've been in the diabetes rodeo long enough to know it's pretty much always down to "educated guesses" but I do feel like it's the sort of thing that, over years, I will build up a knowledge base of what generally works, as a starting point - a knowledge base I don't quite have yet.

All my real problem areas are food-related (story of my life!). I need to work out how to account for high-fat, high-protein meals that also have some carbs. I know for protein without carbs, it converts at around 30%. But there are a few meals, like hamburger tortillas (ground beef and all the hamburger fixings but wrapped in a tortilla instead of a bun) where I have counted the carbs precisely, including condiments and veggies, and still my BG goes soaring, so I expect that I will have to work out a percentage for those situations as well. I mentioned it to my CDE and she said she's seen the same research as me on that point and wants to look into it more anyway for her own knowledge, and will let me know what she finds!

Lately I have made some changes to diet and exercise, which as it always has in the past, has affected my overall insulin needs. When I eat more carbs regularly, I need more insulin overall - including basal insulin for when I'm not eating, and I need more insulin for the same amount of carbs than I do when I'm eating more reasonably on a regular basis. And being more regularly active also contributes, though interestingly not as drastically as diet, I find (I've maintained the same activity levels for about a month, but only recently added diet changes, and that was when my BGs went wonky!). So after consistently having hypos after meals I've just gone ahead and changed my I:C ratios from 1:6 to 1:7, and from 1:5 to 1:6, all on my own  ;D  And I lowered my basal rates by 0.05 in a couple of places that I could see were trouble spots even without mealtime insulin. So far it's looking like it worked really well! Of course the goal posts WILL move eventually but I'm enjoying those nice flat lines on the Libre graph while they last!

It's interesting to see that my sense of my overall "patterns" on MDI still pretty well correlates now that I'm on a pump. I have a dip in insulin needs in the late afternoon (3-5 p.m.) and a dip in the early morning (3-5 a.m.), and significant DP that kicks in around 6 a.m. and continues over the morning. When I eat more carbs my IR goes up all around, I need more basal AND more insulin per carb. I say interesting because I know that hasn't been the case for others on here (thinking specifically of Sedge) and I was sort of prepared for the fact that I might find out something unexpected about my body, but turns out I pretty much had my finger on it all along! Nice to feel validated, haha!

I still think my correction factor will need to come down a bit, I'd expect at least 1u/2.5, but I'm trying not to make too many changes at once and only when there is an obvious pattern. Trying not to overanalyze too, but it's tempting when you have so much data and so many options you can fiddle with. I'm also still working at dealing with exercise, but it's kind of all wrapped up in needing to adjust basal rates and correction factor. My high-intensity workouts (which generally need additional insulin to cover) tend to happen early in the day when IR is already high and/or I already need a bit of a correction due to morning basal not being quite spot-on. And my lower-intensity walks (that often need a reduction in insulin) tend to be running errands right after OH gets off work, i.e. right in the "afternoon dip" period that I'm still working on too. What's interesting is with the pump being such a precise instrument, those effects are suddenly much more significant, i.e. I used to be able to just walk to the grocery store and that activity would kind of "come out in the wash" of the general margin for error of MDI - I usually wouldn't need to compensate for a walk unless it was very long (like hours) or particularly strenuous. Now if I walk even just 30-40 minutes, I have to think about how to compensate for it!

So, all a learning curve, but I'm down to the details now that we spend our whole lives working out anyway. Definitely feeling more confident to make changes on my own (it helps that, like I said, my understanding of my body's needs has mostly been validated by the pump so I feel I can trust my own analysis of any patterns that I see!).

Site-wise, I've discovered I quite like the thighs, nice and out of the way for any kind of bendy movements for yoga or cardio workouts, and not too uncomfortable to sleep on. I never used legs for MDI 'cause injecting there was too painful, but I definitely have a good fat layer there and since the pod is only one needle per 3 days it's a lot less uncomfortable in the long run. Absorption seems to be just fine! I can get 5-6 good sites out of each leg per rotation so that's a good month altogether before I need to move on to another site. I've completely ruled out the upper abdomen as being just too painful (same as it was on MDI - nearly ALWAYS bruised there!) but lower abdomen is pretty comfy, only problem is that I've got some decent fat rolls that kind of limit placement options, plus waistband limitations. These sites are kind of in the way for forward bends and squats and things (but super comfy otherwise). I can get 4-5 sites across lower abdomen, so that's another 12-15 days per rotation. I want to try lower back/upper butt again - I only ever did one pod there and it was the first one that I noticed leaking after large boluses, so I got scared that maybe that wasn't the best site (especially as I wear a backpack a lot). But now that I know what's what about the leaks, maybe it's still a viable site to try. Reckon I can get about 4 sites in there too, so another 12 days per full rotation. And I want to try arms, but I feel like I need to time that correctly with regard to Libre sensor changes. I suspect I'll like arms a lot too since they're also out of the way for most exercises. Maybe enough to be willing to risk moving my Libre sensor to an unapproved site to leave my arms free for pods! My suspicion is that I will end up mainly cycling between thighs and arms, which would still give me a good 45-50 days before coming back around to using the same body part again. Is that enough of a rotation, do you think?

Clinic-wise, I just had an appointment this past week, and we basically just went over details and brainstormed how to tweak things, same as I do at home but with 3 heads instead of one! I have another appointment with them end of this month, and I'm due to make up my missed appointment with the endo a bit after that. I think at that point we're going to start looking at transferring me over to their sister clinic that's more for longer-term care. If I have the option, I wouldn't mind staying with the current clinic, but I don't think that's possible and anyway having seen the kind of situations that some of their other patients are in, I also don't want to take up their time and resources unduly so that they can help those who need it more than I do!

And finance-wise, I've finally gotten my first cheque from ADP, now I just have to work out how to properly forward all the payment info and the receipts to insurance to get them to cover the remainder. Oh and it's almost time to order my next batch of pods (they said to allow about 2 weeks of margin). Hard to believe I've already gone through 20+!

Also, I FINALLY got some Unisolve in from Amazon and BOY is that ever a game-changer!! Thanks for suggesting it :D Omnipod rep also gave me a bottle of Mastisol to help tack down the cannula end of pods to hopefully help secure the cannula more and prevent leaking from it getting jostled too much. Though so far I have mostly used it to stick down peeling Libre sensors and stickers  ;D
T1 DX 1995
Omnipod since 06/04/18 (Novorapid)
 
  ~-~-~-~
"If you can't ride, can you fall?"
"I suppose anyone can fall," said Shasta.
"I mean can you fall and get up again without crying, and mount again and fall again and yet not be afraid of falling?"
"I - I'll try," said Shasta.
  ~C.S. Lewis, The Horse and His Boy
  ~-~-~-~
"There is no answer; seek it lovingly."

Offline nytquill17

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Re: argh, more small leaks
« Reply #17 on: 05 August 2018, 05:58:50 PM »
Oh wait! I forgot the other big thing - they're moving me back onto Fiasp from Novorapid. I had really good results with Fiasp before going on the pump, but it's off-label for use with pumps so they wanted to try me on Novorapid first. I haven't picked up the prescription yet so it'll be a few more days before I get to try it in a pod, but looking forward to seeing how that goes. I didn't notice a huge difference going from Novorapid to Fiasp on MDI, but going back to Novorapid when my prescription ran out a few weeks before pump start was like going back to a rear-wheel-drive car - suddenly found it very hard to "steer" in any direction and slow to turn around! So I'm hoping that I'll get a similar improved responsiveness out of Fiasp on the pump. And if I don't like it in the pump then I can always switch back.
T1 DX 1995
Omnipod since 06/04/18 (Novorapid)
 
  ~-~-~-~
"If you can't ride, can you fall?"
"I suppose anyone can fall," said Shasta.
"I mean can you fall and get up again without crying, and mount again and fall again and yet not be afraid of falling?"
"I - I'll try," said Shasta.
  ~C.S. Lewis, The Horse and His Boy
  ~-~-~-~
"There is no answer; seek it lovingly."

Offline himtoo

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Re: argh, more small leaks
« Reply #18 on: 06 August 2018, 10:57:21 AM »
wow -- thanks for the comprehensive update Nyt !!

glad you like the unisolve-- it really works doesn't it !!!!
i will check out the mastisol -- looks a good helper !!

and a double wow ------- you get to try fiasp -- my doctor just said NO when i asked about a year ago --------- and i had even brought the NHS PIP code ( essential for finding medicines that are prescribable on the NHS )

i will ask again this october at next clinic appointment .........so do keep us posted on how you get on with it.


and finally ..........not ordered Miao miao yet...........only you were interested in the link i put up in a separate topic....

but it really does look amazing -- it can link with smart watches too-------so no need to even swipe reader or phone to know what BG is up to
T1 Dia Aug 1972 -pumping omnipod since 29/09/15  Losartan 100mg , simvastatin 40mg,Furosemide 40mg, Omeprazole 80mg , Doxazosin 8mg
Hba1c - 02/2014 43(6.1) 07/14 42(6.0) 08/14 40( 5.8 ) 12/14 39 (5.7) 08/15 41 ( 5.9) 10/15 44 ( 6.2 ) 03/16 49 (6.6) 04/18 46 (6.4)
cholesterol --nov 2011 4.3 june 2012 4.4 June 2013 4.1 Feb 2014 4.1 dec 14 4.5 oct 15 4.4
Dafne grad. necrobiosis lipoidica on legs
laser treatment on both eyes 2002 and 2012, injections left eye 3 , wearing Noctura mask since oct 2014

Offline nytquill17

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Re: argh, more small leaks
« Reply #19 on: 06 August 2018, 01:10:12 PM »
I don't know that I would use Miao Miao personally, but if you do, I'd love to hear about it! I think it's cool that such a device exists and I bet people will get a lot of benefit from it.

Well - frustrations frustrations haha. Early last week I was regularly having  hypos within an hour or so of most meals even when I was sure of my carb counting (weighed and measured), and they would last for 30-45 minutes even with treatment. So I thought clearly the mealtime amount was too high, so I changed my ratio. And then the past two days I've had soooooaring highs in the evenings after supper instead - I was testing ketones because it really looked like a delivery problem, shooting straight up to the high teens in the space of an hour or two and not responding to corrections! But ketones were fine which means it's a dosage issue. So now I've put my suppertime ratio back to where it was, hopefully that will help.

I really need to do some basal testing in the evenings to see what's going on. I suspect the earlier hypos were maybe also a timing issue, i.e. bolusing too far in advance for "slower" meals that are mainly meat and veg. I'm used to bolusing during lulls in cooking (waiting for water to boil or vegetables to drain in the sink, etc.) so that the food isn't getting cold while I whip out my meter and pen. And I tend to eat whatever carby bits I have last, to savour them, so that adds to time between insulin going in and BG starting to rise.

Hopefully I can get a better handle on this soon because either scenario, low or high, is quite scary to sit through while it's happening and kind of ruins the evening (plus the hypos are costing me a fortune in Dex4s and ruining my diet!)
T1 DX 1995
Omnipod since 06/04/18 (Novorapid)
 
  ~-~-~-~
"If you can't ride, can you fall?"
"I suppose anyone can fall," said Shasta.
"I mean can you fall and get up again without crying, and mount again and fall again and yet not be afraid of falling?"
"I - I'll try," said Shasta.
  ~C.S. Lewis, The Horse and His Boy
  ~-~-~-~
"There is no answer; seek it lovingly."

Offline Pattidevans

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Re: argh, more small leaks
« Reply #20 on: 06 August 2018, 01:25:49 PM »
Well, it could be your basal that's out rather than your boluses.  I am only taking 0.05u per hour late afternoon early evening and I noted what you said about a dip in insulin requirements in the afternoon.  Then if that's the case, raise your bolus back again for your evening meal.
Patti


Type 1.  Mis-diagnosed T2 May 2003, finally had CPeptide test 15/7/11 and proper diagnosis 1/9/11.  Now pumping Apidra with Roche Spirit Combo pump. Hba1c 6.1 Sept 2017.  45 (6.3) April 2018.


© 2015 Patti Evans

Offline nytquill17

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Re: argh, more small leaks
« Reply #21 on: 06 August 2018, 01:52:38 PM »
Fiasp: I think it has gotten mixed reviews on here, ISTR Grammabear and Mike both got to try it at some point and found it to be unreliable. I only used it for a couple of months before, in pen form, but I was getting on really well with it (touch wood) and only went back to Novo because it's the standard insulin for pumps. Fiasp in a pump is technically an off-label use, but thankfully my insurance will cover it anyway.

I find it really interesting, the differences between health care systems (UK, CA, US). In Canada you have a bit of both systems. We have some of the freedom - and some of the cost - of a fully individualized system like in the US, and some of the benefits - and limitations - of a fully single-payer system like in the UK. Doctor visits, hospital visits, and most lab tests are covered by the government, so you never have to hold off on going to see the doctor because you can't afford to. A lot of things that aren't covered if you do them outside of a hospital setting ARE covered if you go through the public hospital system with a referral from your doctor (e.g. eye exams, dentistry, some of the more expensive lab tests like MRI), but these are also available privately (and most people have health insurance through their work which helps defray some of the costs of private services).

On the other hand, of course there are problems of access to public services - long wait times in the ER or to get an appointment with your Dr., in some provinces/regions it's hard to even find a doctor that's accepting new patients (so then if you don't have a doctor and something goes wrong, you either go to the ER - which makes the wait times longer for everyone - or you have to take a day off work to go to a walk-in clinic and wait in line with all the other people who also don't have a doctor). It being so difficult to find doctors who can take you means Canadians are overall less likely to change doctors freely the way you can in the US, but in some regions you do have your pick and can change if you want to.

Our wait times are generally longer than yours, I think, but on the other hand we don't have the horrible situation you all are having with appointment letters not coming through on time or at all. Appointments here are more like getting an appointment for a haircut or an oil change - you call them up, ask for an appointment, they look in their calendar and find an available spot - just that sometimes the next available appointment is a few weeks away. If you're supposed to see the doctor again in 3 months or what have you, you stop by reception on the way out and tell them so, and they will book you in on their calendar right there.

In terms of prescriptions, those are paid by the individual (either fully or with some coverage by public or private insurance), so there is a lot less administrative regulation of what you are or are not "allowed" to have prescribed. Your doctor may try to help you manage your personal costs by not just jumping to the most expensive drug available, but they're not responsible to the government for prescription costs. So as long as there's no good medical reason NOT to let you have it, they usually will. Of course sometimes what doctors see as a "good medical reason" boils down to e.g. good marketing from the drug company, or personal preference on their part, which is frustrating. But then it's on you to figure out how to afford it. So you get less paternalistic medicine than what sometimes happens in the UK, but you do still do get a divide between "haves" and "have-nots" like in the US, although less sharp since there is more public assistance in place generally and even private insurance is overall more affordable, or at least feels that way because it's usually part and parcel of your employment package (already factored into your salary).
T1 DX 1995
Omnipod since 06/04/18 (Novorapid)
 
  ~-~-~-~
"If you can't ride, can you fall?"
"I suppose anyone can fall," said Shasta.
"I mean can you fall and get up again without crying, and mount again and fall again and yet not be afraid of falling?"
"I - I'll try," said Shasta.
  ~C.S. Lewis, The Horse and His Boy
  ~-~-~-~
"There is no answer; seek it lovingly."

Offline nytquill17

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Re: argh, more small leaks
« Reply #22 on: 06 August 2018, 01:58:03 PM »
Patti: Yes, that's what I'm thinking too. Currently the entire afternoon/evening period is one big "chunk" from 12-8 (0.55u/hr), which seems unlikely to be accurate, to me. It is so hard to basal test the evenings though as that's the meal that OH and I eat together. Bit awkward for him if he's eating and I'm not, and bit hard for me to turn down food when other people are eating! But it will need to be done, and soon.

Tonight we have the season finale of a show we've been watching together programmed for supper, and I mean to enjoy it! But after that we'll be "between shows" so that might be a good time to propose an evening that we actually don't eat together, and start our next show the day after instead!
T1 DX 1995
Omnipod since 06/04/18 (Novorapid)
 
  ~-~-~-~
"If you can't ride, can you fall?"
"I suppose anyone can fall," said Shasta.
"I mean can you fall and get up again without crying, and mount again and fall again and yet not be afraid of falling?"
"I - I'll try," said Shasta.
  ~C.S. Lewis, The Horse and His Boy
  ~-~-~-~
"There is no answer; seek it lovingly."

Offline himtoo

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Re: argh, more small leaks
« Reply #23 on: 06 August 2018, 04:43:56 PM »
to be fair to the consultant that said NO to fiasp ........he was already part time and he retired just after i saw him in april 2017...........I have only seen my new consultant once back in april this year and he seems very enthusiastic ( he put me forward for the NHS funded Libre Trial )

so i am hopeful of at least a discussion in october............
T1 Dia Aug 1972 -pumping omnipod since 29/09/15  Losartan 100mg , simvastatin 40mg,Furosemide 40mg, Omeprazole 80mg , Doxazosin 8mg
Hba1c - 02/2014 43(6.1) 07/14 42(6.0) 08/14 40( 5.8 ) 12/14 39 (5.7) 08/15 41 ( 5.9) 10/15 44 ( 6.2 ) 03/16 49 (6.6) 04/18 46 (6.4)
cholesterol --nov 2011 4.3 june 2012 4.4 June 2013 4.1 Feb 2014 4.1 dec 14 4.5 oct 15 4.4
Dafne grad. necrobiosis lipoidica on legs
laser treatment on both eyes 2002 and 2012, injections left eye 3 , wearing Noctura mask since oct 2014

Offline Pattidevans

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Re: argh, more small leaks
« Reply #24 on: 06 August 2018, 08:15:19 PM »
Well, the NHS doesn't all sing from the same hymnsheet... let alone Scotland and Wales.  For example prescriptions are free in Wales for everyone, whereas here they are only free if you have a chronic condition (diabetes being one, there are a few others), if you are on benefits or if you are over 60.  Everyone else pays a set amount... not sure how much as it's so long since I had to pay. I think it might be around £8.  So whereas Paul's Dr might say no, mine equally might say yes, it's what we call a "postcode lottery".  I sort of recall my Endo telling me about Fiasp before it came out, so I presume I have a good chance of getting it (if I wanted, which I don't). Works in reverse too, my area will not fund the Libre whereas Paul is getting it and so are a couple of other people on the forum I believe.
12-8 seems a huge chunk to have all at .55u.  Mine starts to drop from 13.00hrs down to .43 from 1.10u and then from 14:00hrs to 0.15 and from 16:00 down to 0.05.  Starts going up again around 19:00.  To be honest not eating till after 8pm wouldn't matter in our house, since we rarely eat before that anyway.
Patti


Type 1.  Mis-diagnosed T2 May 2003, finally had CPeptide test 15/7/11 and proper diagnosis 1/9/11.  Now pumping Apidra with Roche Spirit Combo pump. Hba1c 6.1 Sept 2017.  45 (6.3) April 2018.


© 2015 Patti Evans

Offline Pattidevans

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Re: argh, more small leaks
« Reply #25 on: 06 August 2018, 08:16:29 PM »
Sorry Paul, thought I had posted this before your response... It was still sitting there unposted on another tab in Firefox!
Patti


Type 1.  Mis-diagnosed T2 May 2003, finally had CPeptide test 15/7/11 and proper diagnosis 1/9/11.  Now pumping Apidra with Roche Spirit Combo pump. Hba1c 6.1 Sept 2017.  45 (6.3) April 2018.


© 2015 Patti Evans

Offline himtoo

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Re: argh, more small leaks
« Reply #26 on: 06 August 2018, 11:34:09 PM »
no worries Patti -- you covered a lot of ground regarding how the NHS works ( or doesn't ) quite well.
T1 Dia Aug 1972 -pumping omnipod since 29/09/15  Losartan 100mg , simvastatin 40mg,Furosemide 40mg, Omeprazole 80mg , Doxazosin 8mg
Hba1c - 02/2014 43(6.1) 07/14 42(6.0) 08/14 40( 5.8 ) 12/14 39 (5.7) 08/15 41 ( 5.9) 10/15 44 ( 6.2 ) 03/16 49 (6.6) 04/18 46 (6.4)
cholesterol --nov 2011 4.3 june 2012 4.4 June 2013 4.1 Feb 2014 4.1 dec 14 4.5 oct 15 4.4
Dafne grad. necrobiosis lipoidica on legs
laser treatment on both eyes 2002 and 2012, injections left eye 3 , wearing Noctura mask since oct 2014