Monday, 7 October 2019

Aye, Aye Captain


“You’ve done really well to have type 1 diabetes for over 40 years and not have anything like this happen to your eyes before.”  A sentence that was meant to be kind and reassuring but one that hit me like a knife. 

Complications have always hung over me like a blade but this was the first time I’ve truly felt they are an inevitability for me rather than just a possibility. 

On the day before I’d been driving my daughter to, another, football game and suddenly my vision changed. It wasn’t blurred and I could drive safely but it was like I had dirty glasses on and the floaters were very noticeable. 

After I got home my wife persuaded me, strongly, to visit our local optician. I was of the mindset of burying head in sand but she rightly refused to let me do that. Thank you as always L. 

Sadly the optician had left for the day but the kind assistant willingly phoned around all opticians within 15 miles to try and get me seen as quickly as possible. The only one who could help within 24 hours was Boots who slotted me in the next day. I was fine with this as it reduced the sense of urgency and stopped me feeling like I was making too much fuss. 

By the end of the day all objects had disappeared and I was convinced I was over reacting. However after waking, the effects slowly reappeared though at a lower level. 

At the appointment I had usual measures taken and eyes dilated before she had a good look into the back of my eyes. The diagnosis was posterior vitreous detachment. Or in other words a change that’s not reversible but normally appears a couple of decades later than where I am now. 

Thanks to the advances in technology I now have some of the leading, available, diabetes kit attached to my body 24/7. But this doesn’t mean I can avoid everything. 

I also know that life throws awkward arrows at lots of people and a slightly affected vision is pretty low scale in the world of permanent body changes. I continue to thank my lucky stars that I’ve got this far with, still, nothing major hitting me and I’m going to keep remembering that as much as I can. 

That doesn’t mean I can’t be a little scared now and again. I wouldn’t be human if I wasn’t. When it happened I was a lot scared and today I’m still a little bit worried. Thankfully I’ve got a wonderful wife and family around me who always support and I’m very lucky to have them with me when I wobble. Though my daughter was a touch disappointed when i pointed out I don’t need a guide dog. Yet. 

But I’m not moping and not looking for sympathy. It is what it is and thanks to sharing here I can keep perspective on where I am and how fortunate I am. 

Thanks for reading and good luck to you all. 

PS. Yes I know I’m a little behind on my 670G blogs. A short summary is that’s not perfect but it’s bloody amazing and I love it. Longer review to follow next time.

Wednesday, 3 July 2019

To Loop or Not to Loop (Part 1 of x parts)



Pleased to meet you, I’m Dave and I’m a lapsed blogger.

(*There’s a rather complicated disclaimer for this series of posts. In summary I’m getting paid nowt and haven’t got anything because all choices and decisions have been driven by me. It might spoil the end if you read it now but if you want to it’s down at the bottom. Thanks)

It’s been a while since my keyboard and video device were fired up for the purpose of this blog and, as always, I apologise for my tardiness. Like everyone with Type 1 diabetes, at times I often struggle to fit managing my condition into a busy life and in this instance the blogging has dropped off a little. Oh well, time to pick it up again with a new series. The thinking here is that if I say that I will write the next one I probably will. Anyway, you’re rambling again Dave; crack on.

Almost exactly 8 years ago I decided it was time to sort out my condition and grab hold. At the time I was injecting and testing at less than optimal frequency. Once I became engaged with my diabetes I quickly arrived at a point of deciding whether to stay with multiple daily injections or shift to an insulin pump regime. If you’d like to revisit my headspace at that time please have a read of my ‘To Pump or not to Pump’ blog from back then. Also at that time I was very fortunate to have started to get to know the wonderful Every Day Ups and Downs Mike who was going through the same decision making process.  (BTW If you click on the link above and never come back I’d understand, his articles are always 5 star.)

After saying yes to the pump I got to choose, from a choice of one, the Medtronic Veo. A few weeks later I ended up with Fred.





Over the years in-warranty replacements, and the very kind lending of pumps from elsewhere – you know who you are - have kept me with the same pump model. I now have Pink and we’re comfortable with each other.



Me and Adam (or Red or Pink) were, mostly, very happy together. We did however, have a break in 2015 when I had a brief, #gifted, fling with a 640G for 64 days. 



Thankfully Adam wasn’t bitter and took me back as long as I promised not to be unfaithful again. And this is how it has been since 2011.

Those of you who have an insulin pump may be scratching your head and wondering how and why I haven’t been forced to update my out of warranty pump before now. To be fair, I’m not entirely sure. I think the 640G thing confused hospital systems about how old my pump was. I also smiled nicely quite a bit and said it was working fine and I’d sort it once it broke. “Surely it’s better I’m saving the upfront costs that a new pump would bring?”

A key reason for me not switching was that I didn’t want to get locked in to another 4 years when technology was advancing so quickly. I genuinely loved the SmartGuard function of the 640G that helped to reduce my hypos but I also knew that something that would also deal with the highs shouldn’t be too far away. And if Medtronic were working on that I hoped the competitors would be too.

Over this time what began as a small revolution started to take hold. #WeAreNotWaiting and other groups of wonderful engineers were using existing technology to build their own ‘artificial pancreata (AP)’*. This has also become known as Looping. The origin of this is the idea of closing the loop between blood glucose measuring and insulin delivery so that it is done with very little input from the person with diabetes. 

*No, I didn’t know what the plural of pancreas was either. Every day is a school day.

If looping and #wearenotwaiting are new terms for you I’d recommend some background reading as others with much more experience describe it much better than me. This excellent article by Tim is a great place to start.

#edit Tim has also pointed me towards this excellent book Automated Insulin Delivery by a leader on the subject Dana Lewis avaiable in print or as a free download. "Dana is a creator of the “Do-It-Yourself Pancreas System” (#DIYPS), founder of the open source artificial pancreas system movement (#OpenAPS), and a passionate advocate of patient-centered, -driven, and -designed research." In summary; an expert in this field. Follow her.

One piece of the jigsaw used in a lot of the homemade systems was a Medtronic pump that looked exactly like mine. And if the original Adam had survived until today he would have been one of that kind.

Unfortunately for me, over time Medtronic locked down the pumps after the media went a little hysterical about pumps being able to be controlled remotely to give lethal doses. It was all about the version number of the pump software. My current one is version 2.8B. To be able to loop I needed version 2.6A or younger. At one stage, with permission, I went hunting through a box of old pumps at my diabetes clinic and came away with a few possibles. Unfortunately as soon as I put the battery in, the version number was always too new. And this week they have issued a soft recall to remove all the hackable pumps from use; for safety reasons obviously.

All the reading about looping online was drawing me in and over the last couple of years the idea of a more automated system has appealed more and more. Tied with this I have been wearing, and paying for, an Abbott Freestyle Libre almost full-time for nearly 4 years so the idea of not using continuous monitoring in a more productive way seems negligent. Slightly deteriorating hypo awareness has also made me realise that from a safety point of view adding a few automated airbags into my diabetes care would be a very good idea.

I’ll pause here to say that the following is how my thinking has developed over time. Just because it is different to others' doesn’t make mine or their decision wrong. Your Diabetes May Vary has never applied more than it does at the moment with so many different treatment options possible.

So which way would I go?

For me it has come down to two key questions, which are linked very closely.

1: Which pump, or system, would I like to have the most?
2: Which are available to me?

In my inner psyche I do like rules and staying on the grid. Saying that I’m not averse to bending the rules a little. Until NHS funding was secured in April for my Freestyle Libre I was using a MiaoMiao device to enable me to get my glucose readings delivered to my watch. There was risk here as the readings didn’t have the official device’s adjustments for temperature etc but I accepted and accounted for those risks to give me convenience and alarms.

Over time I have discounted the idea of paying for an older Medtronic pump or buying a newer one from another country. As demand has grown both would have probably cost upwards of £500. And with that price comes no assurance on how long it would last before I'd need to purchase another.

So now it comes down to options for new pumps that are on the market that have automation built in or where it can be tagged on.

As it is the list I could see available is:

Home built systems: Dana RS plus Dexcom, Omnipod plus Dexcom plus Rileylink, Accu-chek Combo plus Dexcom plus Smartpix or Realtyme.

Manufacturer built systems: Medtronic 670G plus Guardian 3, Tandem t:slim X2 (with Basal IQ imminent, Control IQ forecast for 2020) plus Dexcom G6.

So how did I reduce the list down to a top three very quickly? Well, I’m afraid the first two to go are the Omnipod and Accu-chek combo. The Omnipod for no other reason than I like a tubed option. I know exactly where the bit that I need to give me insulin is. It’s attached to me somewhere. The Omnipod needs its handset and I would lose this. There’s no doubt here. My forgetfulness is legendary and the day would come when I’d walk out the door, get on the train and shout a few swear words because the vital bit was next to the kettle at home.
And the Combo? I'll be frank, it just doesn't excite me. I know I can automate my pancreas with it but I've got another 4 years to go with a new pump and it will be in my pocket for most of that time. I'd prefer a colour screen. And if no colour then it needs to be smaller; a la mylife YpsoPump. There you go, no logical reason to cross it off the list but it's a personal choice so I'm letting myself be irrational.

So three to go…

Dana RS – One of the smallest pumps in the world it also uses Bluetooth to communicate with a smartphone to allow management through an app. Also designed to be compatible with Android APS that will allow automated insulin delivery decisions to be made based on reading from a compatible CGM. At the moment the most popular CGM brand to use for this is Dexcom. The UK distributor for the pump is Advanced Therapeutics, sensors are direct from Dexcom.

Medtronic 670G System – An upgrade on the 640G, the 670G uses, Medtronic only CGM, to continually read the glucose level in the body and deliver basal insulin according to that. Once fully in automode it does not require patterns to be set as it is continually updating. The wearer still needs to enter carbohydrates for meals. A downside for many people is that the target BGs are much higher than people can set with homemade systems. Another downside for some is Medtronic’s Guardian 3 sensor. I have always found the earlier Enlite sensors to be good but others have not. This has has knocked some people’s confidence in the brand and has a knock-on effect to those who have never tried but hear the testimonies. My usual mantra applies here; unless you've tried you can't be sure how it would work with your body. On top of that in the UK are also issues currently with sensor and consumables supply. For me, I’ve not had an issue but the others have had problems and that could be a concern going forward. The 670G is supplied in the UK directly by Medtronic only through centres that have been approved for supply.

Tandem X2 – The Tandem is a fascinating option. A new entrant to the pump market it is manufactured more in the way of a mobile phone than an insulin pump. This means that as features are developed these can be refreshed through software updates rather than a whole new pump. This helps to reduce the fear of committing to something for 4 years when the next big change is "in the next 12 months".
New deployment in the UK has Basal IQ live and existing users will be updated soon. This works in a similar way to SmartGuard on the Medtronic 640G. Using the Dexcom G6 sensor it suspends insulin before the wearer hypos and resumes basal delivery once the numbers are safe again. The next upgrade is Control IQ. This will add in the ability to automatically deliver insulin when the wearer’s blood glucose is above a predefined number.
No confirmation either way on whether there will be a cost to upgrade the software in the UK. Dexcom sensors are available from Dexcom direct and the pump and consumables are supplied to hospitals by Advanced Therapeutics.

So I have a theoretical shortlist of pumps I’d like to move on to next.

I like to share a lot on these pages about my health and don’t tend to keep any of my box closed. For the next paragraph though you’re going to have to just accept it without the reasoning and move on without too many questions. Sorry.

I now also have CGM funding possible through my team. This is not available for all and I understand how fortunate I am but as always there are criteria to meet and I meet them.

So which way do I want to move and which way can I move? I really can’t pick between the three although my inbuilt preferences are to lean towards the 670G and the T-Slim. I like the concept of full integration although the lack of talking to my phone and watch are frustrating.

Next up came a discussion with my, outstanding, consultant and we talked through the options. I enjoyed the conversation. Although the end result was almost pre-determined it was a real bouncing of ideas and reasoning. First off the list is sadly the Tandem. The clinic currently has no-one on this pump and not much resource in the short-term to learn how to support it. I certainly could push for it but this will inevitably take some time and a lot of work.

Next to go is the Dana RS. There are some in clinic on this but the team's experience is less and the need for an Android phone to loop is also a drawback for fruity Dave. It really is the small things that make a difference. An option could be to carry a dedicated AP phone that would do the brains part. But that's something else to carry on top of pump, normal phone, spares etc.

Which leaves the “world’s first artificial pancreas”. This phrase makes me smile as Medtronic were also using the term “artificial pancreas” in 2015 with the 640G. One of those parts where marketing inflates the reality slightly. My clinic has supplied Medtronic pumps for a long time and therefore have experience of the support and Carelink systems. For me, I’m also experienced in using the sets and Carelink which is the software that analyses the data after the event. This means this part of the change isn’t as big a step as it would be with the other pumps. I know it’s wrong to feel safe with a brand when there are ongoing supply issues. However, I’ve not experienced any problems where supplies were at zero so can only judge based on my own memories. I haven’t used the Guardian 3 CGM sensors but when I’ve used Enlites before they’ve always worked OK with me.

Making any decision involves a list of pros and cons. At the moment for me, the pros of the 670G vastly outweigh the cons and I’m excited about getting the chance to give it a go. 

Until then me and Pink will continue bolusing and getting along until mid-July.

I’m hoping to update my progress with the pump as I get to know it more and more. I'll delve more into the pluses and minuses of the system set-up next time. Among these are the forecast impact on my, always supportive, family when the alarms are going off through the night for calibrations etc. It will impact the whole house I am sure. I never underestimate how much my little Type 1 affects the lives of those closest to me and the worry it adds. I am hoping that the 670G can reduce the worry a little thanks to the airbags built in to keep me safe. Thank you as always and I love you lots.

I hope you’ll join me on this journey into a new approach to managing my diabetes. In other news I now have a new camera tripod so the return of the vlog is a possibility. Which will please and disappoint in equal measures I think.

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PS. I'll finish with a picture taken of me by Kirstina at the top of Scafell Pike. This was a walk I did with my son, sister and brother-in-law to raise money for the fantastic JDRF. We left at 01:15 so we could be at the top by sunrise. We managed this and we came back down safely before a lot of people had woken up. If you have a spare £1, $1 or €1 any donations towards finding a cure for Type 1 diabetes are gratefully received here.




Disclaimer time – It’s quite possible you know about my 640G blog posts and have assumed Medtronic have somehow pulled a few strings and promised me lavish weekend trips to the Geneva to ‘encourage’ me to have a 670G set-up. They haven’t. They did however pay for a train fare for me to go down to exotic Watford late last year to let them tell me all about the ‘system’. As always it’s interesting to hear what 'evil pharma’ are saying and as I know my integrity is solid I keep an open mind. It’s obviously up for you to judge my independence. My thought process is that if I have enough annual leave left, I’d always prefer to be in the room giving my thoughts, feeding back experience and challenging claims if given the opportunity. 
For full openness I’ve also previously signed an agreement with them to force me to write in an honest way and confirm I will not be paid for anything I say about Medtronic. However, I haven’t talked to them at all about the ‘choice’ I have made and it’s possible they are reading this as new news for the first time.
And for those who are still mumbling “well he’s been bribed with an apple Danish and fizzy water so he would say that wouldn’t he” thank you for reading this far, I wish you all the best and a fond farewell.



Thursday, 19 July 2018

Freestyle Libre Update - July 2018



Sometimes my blogs are general and are timeless classics. (Yes I am lolling lots at that and my tongue is firmly in my cheek.) The point I'm making is that if you fired up the DeLorean and came from the future most of the post will still be correct. This one is slightly different as the information is pretty specific to July 2018.


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Each summer Abbott Diabetes Care invite bloggers from across Europe to their Diabetes Exchange Europe events. The purpose of the event is for Abbott to learn from the diabetes community and also for the bloggers to learn from Abbott about their products and how these are being developed. Here are my thoughts from last year. This year’s event was held in Dublin and saw 34 bloggers attend from right across Europe and also one from Canada and two from Brazil. Imagine the Eurovision Song Contest with slightly less singing or voting.

*Full disclosure is that those attending were not paid but received standard class travel, nice food, nice accommodation and a full programme of events. Not all attendees are Libre users and a signed agreement confirms that we are not obliged to report anything or only say good things about the company or its products. We were also asked to delay sharing the details below until today due to key financials being reported by the parent company. I am more than happy to discuss integrity and bias if you desire; but please don’t do it secretly; I prefer to know what people think.

I've got a few blogs in my head from the weekend but it may take me a while to convert them into typed words. As this one is more factual than opinion and as the news is fresh I was keen to get it out quickly.

I won't be the only one sharing this information today so please ask any of us the questions that pop up and we'll answer the best we can.

On the final morning we visited West Pharma near Dublin. The facility creates parts of the device and inserter and then builds and packages the final devices before they are boxed onsite and sent to distribution centres. The West facility is one of two manufacturing plants in Ireland that have automated the assembly process since January 2016. The implanted sensor parts are still manufactured in Witney, Oxfordshire. The West plant works 24/7/365.

Following the tour there was a presentation and question and answer section from Jared Watkin (Senior VP, Diabetes Care) and Scott House (VP of Operations).

Currently their are over 42 countries with the Libre, 5 with the Libre Pro and one with the Libre H (see below).

There are 800,000 people using the Libre every month. Current growth is at around 50,000 new customers per month.

The Dublin site is a sister facility to the one in Cork which both produce the finished product. Late last year and earlier this year investment was secured from the board for further manufacturing expansion of a 9000m sq. manufacturing plant being built in North West Ireland. They aim to do in 2 years what took them 5 years the first time around. This new facility will manufacture the sensor part of the device to duplicate what is done in Witney. This preparation was started at the beginning of June this year.

There are three devices are currently in production:

  • Libre – the normal 14 or 10 day sensor used by patients independently.
  • Libre Pro – a device used by healthcare professionals (HCP) where the person with diabetes has the sensor attached for 14 days but is not able to scan the Libre. The HCP downloads all the data after 14 days to spot trends etc.
  • Libre H – this device is only used in hospitals in China. It allows Chinese HCPs to scan multiple patients in very large wards to reduce finger prick testing.  This products works well in China where data is written down rather than automatic downloads. We were told that automated systems and GDPR mean it is not expected this will be rolled out into Europe at the moment.

Keeping up with demand is a big headache for them and they are continually returning to the Abbott board to ask for more manufacturing investment. Unfortunately getting the green light, then finding locations and building the manufacturing devices takes time. All the machinery is custom made but having made them elsewhere already helps a little for future expansion.

By the end of 2019 production will have been increased by 50% from today’s levels and it will increase in further in each quarter of 2020.

The existing plants reached full capacity last month and this should mean the current restriction for new customers will be lifted but controlled in the next couple of months. Priority for new customers will be those who have registered an interest and have joined a waiting list. Order restrictions of 2 sensors per month (outside of US) will probably continue to be in place to try to limit stockpiling by users. Their focus is to ensure current customers can get hold of a required supply of sensors before adding new customers.

Feedback is actively welcomed. To quote Jared, "None of us can sit here and pretend the Libre is the perfect product and we don't need to do anything else." Feedback was key question for me. Abbott monitor both the official email / telephone help routes to spot patterns and recurring errors. This includes things such as where devices fall off within three days. Abbott are also now tracking through social media reports of problems to try and find patterns. Where a recurring problem is identified this will be researched. The take-away message here is to report all errors and problems when the sensor becomes ineffective.

The product is constantly being developed. The adhesive has been changed three times so far to try to reduce the instances of skin reaction and poor adhesion. The LibreLink and LibreView apps are also being improved and tweaked based on feedback. The use of apps instead of dedicated readers is beneficial as they can roll out software updates much more easily than to the standalone readers.

Now for the big ones:

  • Yes CGM is being worked on but you'll need to be patient. The desire is to keep the same shape and design with any product change. This will allow costs to be kept down and therefore help the price charged to the users. They are also very conscious of alarm fatigue and see this as a benefit of the Libre over CGM. They are also keen that any integration with other products that includes injections and pumps. eg Bigfoot Biomedical
  • They are moving towards joining the JDRF initiative on open protocol and see risks but also benefits in doing so.
  • R and D is constantly being done. Cost reduction is a key driver for everyone there. A key driver is to lower the cost to consumer. This is more likely to be through extended sensor life rather than a reduced sensor cost. i.e. if a sensor can be made to last 20 days this will cost the same to manufacture as one that lasts 14 days. The biggest problems to overcome seem to be skin reactions and longer adhesion times needed.
  • They expect competition to arrive. Can't avoid it forever. But Abbott believe that by investing in efficient manufacturing they can lead the field on sensor accuracy and cost. Production volumes are already far than the competition and they expect this to remain the case. This may sound arrogant but they are willing to be challenge.

If you've got this far, thanks. You'll have skimmed through the disclosure at the top and possibly taken everything I've written with a big pinch of salt. As I said, Abbott demanded nothing of me. I will say however, after looking into the eyes and listening to all Abbott paid employees I met, I have 100% confidence their desire is to make the Libre the best product they can and also doing it in the best way for the consumer / buyer. It's up to you to judge my impartiality.

I was one of many there this weekend so please seek out their blogs and thoughts as they will have detail I missed and also different views on bits too.



Tuesday, 3 July 2018

The Promise


So Chris aka Grumpy Pumper asked for contributors to his Complications series of blogs. I've read lots of other great posts on his site including his current experience of self-managing an IV drip - yes there are lots of blood filled pictures; you have been warned!

Now I like to help where I can so my immediate thought was to start writing. But then I paused. I know Grumps is keen to show that complications happen and they aren’t anything to be ashamed of. I agree. Fully.

The problem for me is that my complications today and historically are limited. I have the annual “you have background retinopathy, so be a better diabetic” letter along with the higher-prevalence condition of a feckless thyroid meaning daily thyroxine tablets. Not much to complain about there really. And I have fantastic support from my wife and family who keep me safe when I’m struggling to do it myself. 

My qualifications to talk on the subject seem distinctly lacking, so I should stop here, bow my head to those who have come through or are living with the side-effects of diabetes, thank them with gratitude for sharing their stories and retire with grace.  Or should I?

My experiences may be second-hand by seeing others with Type 1, either in my extended family or my online friends, but the constant background fear of the inevitable is always there for me.

For years the warnings of doom and impending gloom were what drove me away from going to my diabetes clinic and being honest about my numbers. If it’s going to happen what’s the point? My clinic appointments are now a lot different but the background beliefs still partly exist.

I view complications like I view a speeding ticket for my driving. The risk is always there and I do what I can to reduce the risks. However, at some point I’ll see the flash in the rear view mirror and the ticket / letter from a random complication clinic will arrive in the post.

What's often ignored is that we’re not talking about an exact science here. Complications arrive as a consequence of diabetes not purely as a consequence of badly controlled diabetes. While we may strive for perfect control as much as we can, we are reducing the likelihood of something happening, not removing the possibility entirely. Often I read about the certainty that;
  • Bad control = manky feet, blindness and other floppy body parts,
  • Good control = a nirvana of long-life and fluffy kittens.
My fear is that the more the story is told as fact, the harder the impact is for those that do get hit head-on by something that they weren’t expecting. Why harder? Well firstly there’s the complication to deal with. Secondly there’s the assumed knowledge that as ‘good’ control means no complications, if you have got one then your control has been, by default, pants.  You’ve failed. You had one additional job after staying alive by injecting and testing daily, and that was to stay complication-free. It wasn’t hard. You under-achieved.

Wrong. If you have got a complication, you didn’t lose or fail, life just dealt you another poor card. Lift your head, be proud to be still alive and carry on.

And if you don’t have anything else happening, you’re winning and you may never lose. Happy days.

Life throws bad stuff at people without diabetes and sometimes this is really big stuff that makes our daily challenges seem insignificant. We’d never look at those experiencing it, shake our head and judge them, So don’t do it to yourself or your peers. Offer a hand to hold or an ear to listen to and help them with their challenge that day.

One final thought links in with my last point. Just because someone with diabetes has something else going on, don’t guess that it’s related. A person walking down the road with a white stick and an insulin pen in their pocket could have just got hit by two completely separate, unrelated arrows. ‘it happens sometimes and let’s offer that person the same hand to hold and ear to listen with.

Don't be afraid to have discussions with those close to you or in the DOC (Diabetes Online Community) about things you're experiencing or feeling. Never be embarrassed to #talkaboutcomplications.

Keep dodging those arrows friends and enjoy the ride. Live for today, not for the fear and dread of tomorrow. Most of all; be nice to others and be nice to yourself.


*Random Summer of 2018 photo

#talkaboutcomplications