I'm in love with the i-port - it's like a mini-me insulin pump

UPDATE -** NOVEMBER 18TH 2013 ** - I HAVE FINALLY BEEN APPROVED TO USE THE I-PORT! Why it took my insurance company so long is beyond my comprehension - but now I'm so excited - especially when I take my next holiday!!!!

Okay, okay, don't get your nose out of joint - my fellow insulin pumping peeps - that I'm saying that the i-port is a mini-me insulin pump - but in away - when you look at it "logically" without any anger from my statement - I AM the "mini-me" pump - I am the brains behind what goes into my body - via the i-port - I AM IN CONTROL - not a machine - that I've programmed with best intentions to keep my diabetes health in control.

Yes, I still have to give a separate shot for my "basal" rate with long acting insulin  - I do this twice a day - 12 hours part seems to work best for me.   The basal rate is basically what your pancreas - if it's working - squirts out all the time - in order to keep your blood sugar in a normal range when your not eating, etc.   With diabetes - your pancreas can be abit on the wonky side and either work when it feels like (e.g. Type 2) or like myself as a Type 1 - where my pancreas is dead as a door nail. 

The recommendations of the i-port website is that only ONE type of insulin being put thru' the port via either a pen needle (no shorter than 5mm) OR a syringe (29 gauge is thickest - otherwise you will possibly punction the wall of the cannula) - and I'm fine with that.  With a "real" insulin pump - which has an insulin cartridge (the i-port does NOT - you INJECT insulin via the port) - it's programmed to squirt out ""X amount" of  rapid acting insulin - for your basal rate as well as your bolus rate (aka - if you have to correct a higher than normal blood sugar (BG) or for when you are eating a meal).  If this has got you abit confused about the types of insulin - check out the link from Diabetes.co.uk that explains how injected insulins work in our bodies.

My messy diary along with box from i-port

The thing I loved about my six day experiment with the i-port (I was only given 2 samples - boo! hoo!) - is that instead of my having to do the human dart board practise on my stomach for my bolus shots 5-8 times a day - I just did my insulin injections through the port in my skin.  It really is like an infusion set that we use with an insulin pump - except it has no tubing - or connections to a little machine that goes ping.   The port is changed EVERY 3 days - which is the recommendation for most infusion sets.  Usually in the past, I've had issues with the teflon coated plastic cannula that remains in my body for that length of time.  Luckily, with the i-port I had no such issues, removing the port left barely a mark in my skin. 

The good thing about the i-port - less expensive then the alternative of an insulin pump (I can purchase the i-ports at Diabetes Express for $149.99 CAD for a box of 10).  This is bit less expensive then what I was paying for my infusion sets with my insulin pump - but the even bigger saving for me?  I'm not having to pay for a pump which ranges from $5-7K depending on where you live - along with the other supplies that go along with the pump (insulin cartridges, batteries, replacement caps, etc.). 

i-port put in place (really easy)

One thing I did find was that I didn't cringe at having to give another shot of rapid insulin for a little sinful snack or a correction shot.  It reminded me so much of the insulin pump I used to use - where a simple touch of the key pad - squirted insulin into my body via the infusion set - except with the i-port - you are the brains behind what insulin you are injecting with.

I have submitted a predetermination form thru' my husbands workplace insurance in the hopes that these ports will be covered - hopefully at 100%.  So wish me luck - since I'm really REALLY missing my little i-port right now - I felt very spoiled using the two I was sent. It's almost how I felt when I first disconnected from my pump - and went back onto multiple daily injection (MDI).  After almost a month of learning how to stay in the BG zone with MDI - I can now say - that ANYONE can do it - if they put their mind to it - and now I'm not missing my pump as I go into my 4th month of being pump free.

It stands out about 1/2" or abit less

My conclusion?  For anyone without insurance coverage - dislikes injecting to the point of not wanting to inject (not good - tisk - tisk - who hasn't done that in their life time with diabetes?) - I really think this is the route to go - to keep a diabetic from suffering the effects of poorly controlled diabetes.  

NB:  The i-port Advance has regulatory clearance in Canada, US and the European Union.  In the EU they currently have distributors in Germany, Italy and the Nordic Region and are in conversations to add some additional countries in the near future. India and Australia will be further down the road.

Tori Davidson - Insulin Pumping since 1978

This blog was originally posted at Diabetes1.org back on January 24, 2012 - but I thought I'd share this with you here - since I think this is too good a story - about someone who has been pumping close to 40 years.

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Here I am, coming up to my 4 year anniversary of using an insulin pump (and wondering what to do after the pump warranty expires - that's a blog in the making - as I figure out my alternatives that Animas has been throwing at me - which seems to vary from one individual of the company to another for some strange reason).

My last blog post about infusion sites pulling out created some interesting comments on my Facebook page - The Roller Coaster Ride of Diabetes as well as my personal page there.  I heard from many insulin pump users saying of how many times they'd yanked there infusion sets out - and I honestly think I've been blessed with a horse shoe up my ass that it's only happened maybe a few times.

One gal, Tori Davidson from Brisbane, Australia wrote to me and told me her story about the early years of insulin pumping back in 1978.  She was barely a teenager, having problems with control of her diabetes, and became one of 10 people (aka guinea pigs as Tori and I like to call ourselves with what we've used over the years) to partake in the use of an insulin pump (which we're not like what we use today - we've come a long way).

Below are Tori's words, which she has graciously allowed me to share with you.  I think it's amazing what she went through, and not sure if I could have gone through it.  Funny enough, I didn't know about insulin pumps back then, and neither my parents or medical team had ever mentioned insulin pumps.  In away, I wonder if they were with holding that info from me - who knows?  Read on - you won't be disappointed by Tori's story ....

" I was thinking at some ungodly hour some years ago how much I love the current pumps, and how different they are from 34 yrs ago, and thought I'd actually specify what pumping in 1978 involved.

First off, there were no easy plastic cannulas you inserted at home. Initially, the cannulas were similar to IV drip cannulas, and yes, they hurt. Mine were inserted into my butt... but not just put in and left, no no. The whole procedure was done at the hospital and involved betadine swabbing, a local anaesthetic, at least two medical staff, the whole shebang/catastrophe. After the site was swabbed thoroughly and the local given (why do locals sting so much??), the doctor (usually an endocrinological registrar; if you were unlucky, a resident) would thread the cannula in, using a rather large introducing needle (21g I think), then back OUT, and in again. I have no idea why this was necessary, but at the time it was deemed to be so. If these sites had problems - infections - they exploded along the whole line. I had one infection so severe that 25years later I still have a small crater on my right buttock from it being excised and drained (but thankfully can no longer remember the intense pain associated with the three direct penicillin injections straight into the site that were administered). Sites were usually replaced every 5 days, and I dreaded those days. The whole procedure took about 3 hours.

As a back up, we had "butterflies" (winged infusion sets). If a cannula came out, a butterfly could be used as a stopgap until a new cannula could be inserted. Butterflies brought their own horrors, of course. While they had a much finer gauge (as small as 25G at one stage, more commonly 23G) and were far shorter, positioning them was very difficult because they were inflexible metal needles. Regardless, the trauma of the cannula insertions led me after 3 months to request the use of butterflies on a permanent basis (at the ripe old age of 13!).

Now, one problem with the butterflies was that the tubing actually absorbed insulin, so priming them was a time consuming business. First, insulin for the "day strength" syringe (presuming it was day time) had to be prepared (I generally prepared 6 days' worth of day and night syringes in advance, and labelled them so I could tell them apart, storing them in the fridge). Preparing a syringe was fiddly/fussy, but not difficult. It meant getting a 2ml syringe (or more, depending how many were being prepared), using an insulin syringe to withdraw the correct amount of insulin for the particular syringe, injecting it from the drawing up (insulin) syringe to the "pump" (2ml) syringe, then using a second 2ml syringe to add normal saline to the pump syringe to dilute the insulin adequately. The fully prepared syringe - with insulin and saline in proper proportions - could then be capped with a sterile needle and stored in the fridge. Day and night strength syringes were quite different, and varied over time. To actually prepare the butterfly meant taking the pre-prepared syringe, and rinsing the tubing of the butterfly out TWICE, before gearing it up for insertion (we also did that with the 2ml syringes, adding a small amount of insulin and flushing it through the syringe twice).

Using butterflies was "interesting". When I first started putting them in, an insertion, including swab padding and taping took me about 15 minutes. After some years I had it down to 2.5 minutes (yes, I timed it, I was a busy girl!!). Using both cannulas and butterflies meant you could only sleep on 3 of your possible 4 sides (front, back, left and right), as you invariably had a sore spot or a potentially sore spot on the fourth. If you bumped a butterfly it was wont to dislodge, which was not only extremely painful but meant, of course, that your insulin delivery was disturbed or possibly discontinued. I look back on all of this and wonder how I endured 17 years of it really - but endure it I did, and gladly. Finally I was able to eat what I wanted when I wanted and I was no longer left out of more "normal" activities that had previously been denied me because of my diabetes.

Placing a butterfly involved having the following things on hand: butterfly, syringe, pump, gauze pads, tape, and alcohol swab. First, the site had to be swabbed (in later years I left this part out, as well as the priming of the tubing). The butterfly was "fed" with insulin (no checking for air bubbles back then). Then, the needle would be inserted, at anywhere from 40-70 degrees. Gauze placed under the wings of the butterfly helped to prevent it pressing down and thus the actual needle pushing up through the subcutaneous tissue (ouchy!), meaning it stayed relatively stable; a piece of gauze over the wings meant that the entire dressing could be replaced at any time without (theoretically) displacing the needle. Lastly, tape would be applied liberally to strap it all down, and the syringe and pump would be reconnected.

The first pump, of course, was somewhat of an encumbrance. It was a Millhill infuser, and it was all metal. Hence, every time I flew to Sydney (my family and I were living in Canberra) it would set off the metal detector. Canberra airport in the mid to late 70s was a quiet place, however, and they came to expect me every 3 months, jetting off to Sydney for my 48 hour line to be put in, where blood was taken every 30 minutes night and day to try and get a profile of what my blood sugars were doing. It was all very false of course, but all they could get, since I refused to do even rudimentary tests at home (when they became available). The Millhill was about 20cm (8") long, 10cm (4") wide and 5cm (1.5") deep. It was LARGE. It was later replaced by the Graseby Infuser, which was slimmer, but still large. Both were kept (by me) in a specially made pouch that was worn on my thigh, with straps that went up around my neck (sans boobs) and my waist (apres boobs), with an additional - optional - strap around my thigh to ensure it didn't bounce around.

The pumps did not have variable basal rates. You had a set rate and that was it - but at least it meant you were getting a steady stream of insulin 24hrs/day (all being well). The number of times I disconnected and then lost my needle, dressing and all, in the surf is uncountable. I hate to think what the finders thought of their strange flotsam and jetsam. Bolusing was also an interesting event. In theory, you could program the pump to push through X mm (yes, millimetres, on a scale, which had to be converted depending on the size of the syringe - 2ml was my standard but these pumps could take 5 and 10ml syringes as well - to ml, which then had to take account of how much insulin - diluted, remember - was in each ml) at a particular time. It was very difficult, so much so that I took to just going "OK, here's my syringe, I know it has about 0.7units per .1ml, so I need half a little mark" and manually pushing that through. If you didn't know how to carb count, you were completely lost - and even some of us who knew how to do that - in "portions" - were still lost.

It's funny, I've just written all this and it sounds archaic and nightmarish now .. but at the time it was cutting edge and it saved my life. I still have my old pump and pouch. I wonder if I'll ever discard them? Somehow, I doubt it. "

Is This The Final Chapter of the Johnson & Johnson Animas insulin pump conspiracy?

 I just finished up my walk on my treadmill - watching this week’s episode of  Glee (some great tunes in this "Guilty Pleasures" episode).  It got my brain whirling on a subject I’ve been trying to figure out how to write since my “chance” meet up with Mr. Paul Flynn, Director of International Business Development at the CWD FFL in Toronto a few weeks ago.  

I just happened to be checking out the PING, for curiosity sake, with one of the reps at the Animas booth.  I started to talk about my issue with the 2020, and in my overly imaginative mind, he swooped in, to pull me aside from the booth, and proceeded to talk to me.  No name tag like everyone else was wearing, but just a pleasant looking guy, who quickly said his name (I didn't catch it again until near the end of our conversation when I asked for his business card).   I then started my polite rant that I’ve been blogging about, writing to Animas Corporation/Canada about since Dec 2012 here at Diabetes1.org.  Deep in my mind, I wished I wasn’t alone in this convo with him, as all that I write here is hearsay, no video, no recording of our conversation, just my own words. 

In the beginning, Mr. Flynn appeared to not know my story, and I sensed something wasn't right with the way he was holding himself as he listened politey.  Then slowly, the truth started to come out when I mentioned Caroline Pavis who is the Director of Global Communications in the USA.  I'm not good with names sometimes, since I need a face to put to the name, and I stumbled abit with her name, and he corrected me.  That was when things started to change in how I approached my questioning to him.  I was determined to get to the root of some of the nagging answers I'd been given by Ms. Pavis over the last few months.   

Take a deep breath, smile ......

He told me that my approaching Animas Canada/Germany/NZ branches would yield me the same answer that I have received all along from Animas Corporation.  I am out of pump warranty zone, I will continue to be notified when the pump will stop functioning on such and such a date, so that I can purchase another pump from Animas Canada, end of story.  It's like he had was a recorder - turn on button - tape will play sort of thing - and quoted me verbally line per line the same statement I've seen online / email / recall notices. 

Take a deep breath, keep calm  .... 

I also inquired as to why the END DATE is not shown in any of the manuals that Animas pump holders are given.  Do they not have the right to know that the product they are purchasing has an end date?  If I'd known back in 2008, perhaps I would have gone with a pump that I knew would last longer.  He did not say anything that either confirmed or denied that Johnson & Johnson (J&J) were in error for not informing their clients.
   
When I had asked him about Fraser Gray, who after reading my original blog back in December, decided to approach Animas Canada about his own pump (we both had same warranty end date) – and that he DID receive a PING pump  in exchange for his 2020 - without any warranty mind you, why was he the exception? That when others like myself approach Animas Canada/Corporation, it’s been a flat refusal of no.  Mr. Flynn played very cool, and said he was not aware of Fraser.  Again, as we spoke, I reworded my questions again, and in actual fact “maybe” Mr. Flynn did acknowledge he knew of him in the end – but used the “must protect client confidentiality” line.  The glazed look in his eyes made that pretty clear – I’d not get anything more out of him.

One thing that I did discover in my conversation with him –the Animas PING has an END DATE as well – that it can only hold so much data  – like all  previous pumps before  – except that date is December 31, 2022 – so buyer BEWARE if you purchase a pump (2020) like I did in 2008 – it won’t last past more then 10 years if you are lucky when it's out of warranty. 

Remember to breath, stay calm, focus like you're a cat ....

I then questioned him as to why this had not been corrected (a few pump companies I have approached in my research do NOT have any END DATE).  
He could not answer that – aka – it’s not in his department  - understandable – but it would have been nice to have maybe been told someone from Animas Canada would get back to me on explaining why.  I do realise it costs to write up a program / change it / etc. – but at the expense of patients health?  Why do other pump manufacturers I’ve talked to over the past few months not have the same issue with their pump software?  That basically was the end of the conversation - no more could be said - until I could get home and start digging deeper. 

Run to my friends table, break down, be petted and consoled ...

I once again went to my beau from high school, Harold Swaffield aka Swaff and a T1D who right from the start of my blogging about Animas pumps, has been by my side with technical advise.  He can’t really say for sure why their pumps are like this (he finds it mind boggling too) – as he’d have to pull the pump apart to figure it out it's inner workings (guess where George Michael is going to when he stops working - sorry George) - but still we've been going over some possible reasons.  Be warned, this bit that follows gets abit technical, so if you want to continue reading – maybe it’s something you should be aware of and question when considering purchasing a new pump - again - if this is the problem behind the pump shutting down completely on X date.

Swaff doesn’t understand what they are storing in the pump that needs to be constantly updated taking up space.  My DH and I had thought that they are perhaps using an  EEprom and not the Eprom (see definitions below) but the big difference is the PROGRAMMABLE part of the pump. Swaff has always used an MM pump that requires some things to be stored but all these devices do, except once the data is stored, it NEVER gets updated again, until he changes it, thus rewriting the EEPROM again.  Swaff was saying that this is protection so that you don’t lose the data on a power off. The EEPROM stores the data so that when power is reapplied, it just starts to work!

The other part of the puzzle is we don’t KNOW what they are STORING on the device. The less cheaper way would be to have an internal SSD (solid state drive) or something similar to your standard USB key. In his words … “ Honestly...  32GB of USB is like $22.00 retail. Probably more like $.40 wholesale or less! ”

His guess, like mine and others, is that Animas are ensuring that we will NEED to purchase another device, which is, in his words (and my thoughts too)  “ sucky really, sort of like a virtual end of life ".   What really bugs both of us the most is that they continue to sell the devices up until the day before it expires. So, the individual, NEEDS to purchase the next revision of the device. I mean honestly, a medical device that costs the average user, $5000 - $7000 ….  Gee let’s keep the company going!  It probably costs these companies $300 to make them, add the R&D costs, and yes, you can add an additional $1000 or $2000?? (people, manufacturing time,  etc.)

You wanted to know what some of the above means?  Well, here's the definitions for you students today -

EEPROM (also written E²PROM and pronounced "e-e-prom," "double-e prom," "e-squared," or simply "e-prom") stands for ElectricallyErasable Programmable Read-Only Memory and is a type of non-volatile memory used in computers and other electronic devices to store small amounts of data that must be saved when power is removed, e.g., calibration tables or device configuration.
EPROM erasable programmable read only memory, is a type of memory chip that retains its data when its power supply is switched off. In other words, it is non-volatile. It is an array of floating-gate transistors individually programmed by an electronic device that supplies higher voltages than those normally used in digital circuits. Once programmed, an EPROM can be erased by exposing it to strong ultraviolet light source (such as from a mercury-vapor light). EPROMs are easily recognizable by the transparent fused quartz window in the top of the package, through which the silicon chip is visible, and which permits exposure to UV light during erasing.

Okay, are you still with me kids?  Hello, tap, tap, tap to the sponge brain …

In my words, J&J are looking out for the shareholders … not we the consumer who wants to own a product (pump in our case) that hopefully will last for many years.  The selling point of the Animas rep here in Montreal of J&J being such a family oriented place – is all crap IMHO.  They are like the many other companies, out to make share holders happy in their yields.  So what if their 250 subsidiary companies like Animas, Dupuy (hip replacement), Mentor (breast implants) – that people depend on? 

As far as pumps go, Animas knows that most people in North America and other parts of the “civilized” world usually have private/work insurance coverage or it is covered by the country they live in.  They know that most insurance companies will enable the pump users to have a NEW pump every 4-5 years.  They do not think of the individual that is perhaps not fortunate enough to have that coverage, which they pay out of pocket, for a product they hope to have for many years.  To admit that they have made a mistake in what I believe is false advertising of a product is shameful.  I could not work for any firm that would pull the wool over the clients eyes – and sad to know that insurance companies are not aware of this (or maybe they are – they are all in on it together – it makes money!!!).

I know that there is a small percentage of Animas 2020 users out there – you may feel the same way as I do with being duped.  Sadly, we are a small number compared to those that really don’t care, they have coverage, they will continue to have a new pump every 4-5 years - sigh.   If they  knew more about where their hard earned monies go – into health plans, etc. – maybe they would start questioning who they deal with.

Be careful who you deal with – PLEASE - ask as many questions as you can before signing the dotted line – PLEASE - it could affect your life!

I'm still feeling High!

Okay - I've maybe worded the title incorrectly here - but psst - did it get your attention or what?

My HIGH comes from the incredible weekend I just spent with T1D kids/adults, T3's (parents/grandparents/sisters/brothers/etc.) at the 4th annual Children With Diabetes (CWD) - Friend for Life (FFL) conference and expo in Toronto, Canada. I actually am feeling a little depressed about being away from "my family" - missing the sounds of the beep, beep, and whirl, whirl of various medical devices being used around me - that I use myself to stay healthy with my diabetes. It felt so amazing to be part of such a big group - that got each other - we didn't have to question why you were doing this and that - do it in secret like some diabetics I know that hide out in dirty washrooms to test their blood glucose (BG) or bolus with insulin. It was just so cool is all I can say!!!

The last time I attended in Toronto I was part of the staff - and because of that missed out on all the great conferences that are presented. This time though, I wasn't asked to help, and of course, I felt like having abit of a pity party (memories of Joe Solowiejczyk talk about dealing with diabetes are going thru' my head here - I cried so hard with laughter - "Yipee I love having diabetes ... NOT!!!").

This time I managed to get our god daughter, Catherine and her son, Aaron who is a T1D like myself to come along. I do not think they regret one bit about my dragging them along (well - their only regret is that they didn't take up my offer of ear plugs - since I still am not 100% well - and snored ... or should I say ... purred REALLY loud). 

Sock Monkey paying attention

Catherine met up with other D-parents like herself, exchanged contact info and I'm hoping they stay in touch for many years to come as their children grown up into adults. So, the 6 hour drive back home after such an exciting long w/e was abit of a drag, as we didn't want to say good bye to everyone, but with good tunes and a GPS (Toronto is a big city) - we got back home safe and sound. Aaron is now putting his plans in action to figure out how to raise monies to attend the CWD FFL 2013 meet up in Orlando, Florida this summer. Obviously, he didn't get enough in Toronto!!!

For myself, it was meeting up with all the parents (some actually were looking out for me with my ears since they follow my scribbles in the sandbox at Diabetes1.org and in other social media areas I post in). Listening to their fears of their children with diabetes and trying to reassure them that with great patience - their kids will do alright, just like I did with having family members that looked out for each other with living with this disease (I hate calling it that - since to me - it's not a disease - it's just a hiccup in my life - that I try to make the best of the situation). Also spending time with the kids, sharing laughs, dancing (okay - it was more like an aerobic workout for this old D-cat) - just AWESOME!

Sock Monkey wanting to get in on the action!

Sadly, this maybe the last FFL being held in Canada, due to sponsorship - sigh. I have to admit, I had hoped that there would be more pump manufacturers other then Animas (you know my reasons there - and forthcoming blog will be revealing abit of a shocking conversation I had with Paul Flynn, Director of International business Development of Animas Canada). Perhaps, if those other companies, and a few more that have products aimed at diabetics all pitched into the pot, then I'll be writing about the next Canadian one that I am able to attend.

If you are interested in checking out the presentations (I know I'm going back to go over some of the notes I took down) - you can find it all at this link! 

Tired but happy bunch on the road back home!