Monday, 1 December 2014

Animas Vibe, Stateside

After four happy years on the Medtonic Veo insulin pump, I made the decision to switch to the Animas Vibe in January this year, after careful consideration.  I've always known that the customer service behind a pump is far more important than its sexiness, but having got to know the pump, and experienced some of the customer service, it was, as they say, a 'no-brainer'.  

I've been rocking Dexcom CGM as part of my diabetes arsenal for almost two years, without a single day when I've taken for granted this incredible technology.  Integrated CGM means the option of  the glucose data being sent straight to the colour screen on the pump, rather than lugging around a
separate unit with the already weighty collection of diabetes paraphernalia I keep at my side constantly.  And the waterproof feature meant I could start surfing again without the blood sugars creeping up to the uncomfortable teens afterwards.  A day-kayak no longer comes without the unnerving feeling that too much fun could end in tears.

Our friends in the US have long been waiting for the Animas Vibe to reach their shores, thanks to the FDA's notorious much lengthier and more stringent approval process.  But there's great news........The Vibe is Stateside!

In a press release from earlier today, Animas proudly announced the release of the Vibe in the US, now approved for people aged 18 and over. So those over the pond an finally get their hands on this sexy little pump, from a company with an excellent rep.

Check out their website for more information, here.

Sunday, 23 November 2014

Down Under with D: Travelling with diabetes

When we tied the knot three years ago and took a brief 4-day trip to Cornwall as a 'mini-moon', Jamie and I could never have known how much would change almost instantly in our financial situation.  The plan had always been to travel New Zealand for our honeymoon, a dream I'd had for the best part of 10 years.  But with the recession, a property which plummeted in value and a redundancy for Jamie things took a turn for the worse, and the honeymoon we had planned had to be shelved until further notice.

Three years on, and with a lot of hard work and saving under out belts, Jamie and I are finally realising that dream and in just under two months time will travel down under to spend nine weeks in New Zealand and Australia, finally enjoying the honeymoon we never had.  We've spent months booking flights, researching the best ways to get around, studying travel guides, investing in snazzy cameras and checking out the delights that these magnificent countries have to offer.  But as the time to head off to try our hands at being intrepid explorers approaches, the daunting task of travelling with diabetes has started to dawn on us.

At times travelling with diabetes can seem like having an extra person to manage, from catering for the extra bag the insulin pump and CGM paraphernalia demands, to the pre-ordering of 3 months worth of supplies, ensuring we have a plan for hypo treatments to keep on us at all times, and locating hospitals and places of safety abroad, just in case anything goes wrong.  And I've learnt that if you plan for Armageddon, you will be somewhere close enough to being prepared for the adventure ahead.

Here are a few of the tips I've learnt:

Flying 

We've chosen to fly with Emirates, and discovered the benefit of being able to reserve exit row seats, - albeit ones we may have to give up if anyone is travelling with a baby.  Now, exit row seats aren't a diabetes issue as such, but as someone who has found that my blood sugars start to rise as soon as I start to get uncomfortable or frustrated on long distance journeys, having the option of being a little more comfortable and being able to get more sleep - therefore reducing the levels of adrenaline and cortisol flying around my system disrupting my blood sugars - is a god send.  Our journey is an eye-watering 27 hours, so the more of that I can avoid my blood sugars going haywire, the better.

Disconnecting during take-off and landing

When I read this article by Melissa Lee at A Sweet Life about why to disconnect your pump during take-off and landing, I was flabbergasted that more is not made of this in initial pump-user training.  You see, when the pressure changes inside the plane, your insulin has no way to cater for those pressure changes without pushing air out of the insulin, called 'outgassing'.  Think of a can of fizzy drink, when the pressure in the can changes by you opening it, air bubbles are forced out of the liquid.  The same thing is happening with your insulin as it forces a bubble out of the tubing in order to cater for the pressure change.  That bubble is now sitting under your skin, causing your blood sugars to rise.  Then, when pressure decreases again suddenly, the bubbles gathered in the tubing can be pushed back along tubing forcing insulin into the body, leading to what they call 'Baggage Claim lows'.  And your pump will be none the wiser.

The easiest and best ways to cater for this are to disconnect your pump on take off, and priming and re-connecting once the plane is above 20,000 feet and levelling out, because it is better to be absent of insulin for 30 minutes than for those bubbles to make their way down your tubing leaving you with 2 units of air at the end of it.  And when the plane starts to descend, do exactly the same, to avoid any bubbles lodged in the tubing pushing insulin back out again.  Voila!

Keeping Insulin Cool

Insulin is only guaranteed to be 'stable' for 28 days when out of a refrigerated state.  After that time it may well still be OK to risk on a personal use basis, but if you are using a three-month old supply and it doesn't seem to be touching the sides anymore, this could well be the reason.  I've only ever been away for 2 weeks before, so this is the first time I've had to consider how to keep my insulin supply cool for the second month - particularly as we are primarily camping and using hostels in major cities.  I use between 50 and 70 units a day, so am catering for 1 ml a day, just to be safe.  That means I will use a 10 ml vial every 10 days.  We are there for a total of 65 days and I will take 2 spare bottles.  You know, in case of Armageddon.  That means I need to take 8 x 10 ml vials with me.  Three of those I can keep out, because I will be using them in the first 28 days, but the other five I need to keep cool while not in use.  But how, when rocking campsite chic in the deepest darkest 'nowhere' in New Zealand?

Frio have an ingenious cooling bag designed for exactly this little conundrum.  The bags are effectively like little picnic cases, and can keep insulin cool for up to 45 hours by immersing the pack in cold water for as little as 5 minutes (depending on pack size).  So every couple of days you can dunk and go, keeping your unused insulin cool for that time.  Perfect!

Loan Pump

My pump quite literally keeps me alive.  It is my most precious possession, even more that my beloved phone or laptop.  But it's also just a gadget: a gadget which breaks. If you use insulin pens with background insulin, then you have a good 24 hours before you would be in a situation of dire medical need.  With a pump, the moment I pass the three hour mark after I unhooked, my body is without insulin and my blood sugars are already starting to rise.  Being without my pump is not an option, and although I am taking pens, syringes and insulin bottles in case the worst should happen, my preferred method of insulin delivery is my pump. If nothing else then to enjoy the trip without doing battle with my bloods sugars, or sitting out of activities because I feel ill.

Most, if not all, pump companies now offer loan pumps, which is a spare working pump you can take away on holiday with you at no cost.  Before you go, take a photo of your current pump settings, so that you could programme a new one and bam!, you're covered.

Just contact your insulin pump company a few weeks before you go and ask for a loan pump.  Any company worth its salt will have you one in the post within days.

Knowing what's around you

Although I haven't needed a hospital trip for my diabetes in the last 20 years, it's a good idea never to get cocky with diabetes.  Only two years ago I found myself on the kitchen floor hallucinating about people being in the house as Jamie called an ambulance, because I was terrified and suffering too aggressive convulsions for him to get the emergency glucagon into me.  One little repeat of that, and our trip could be cut horribly short with an emergency hospital stay. 

I discovered an app called 'Camper Mate' which is a smart phone app showing you at a glance what is near you in NZ, from petrol stations to free camp grounds, or hospitals. If anything was to go wrong - if we lost my medical supplies or had them stolen by a wily Hobbit; if I was fighting an infection and blood sugars were uncontrollably high, whatever, this app will help me locate nearby hospitals and doctors, and help me feel safe whilst making memories of a lifetime.




Insurance

The person with diabetes who goes away to an unfamiliar country without medical insurance, is a fool.  In Europe we have the benefit of the EHIC card, which can get you free medical care at the point of access, but this doesn't work once outside the borders of Europe.  But medical insurance, once you disclose type 1 diabetes, can go from 'pricey' to 'cancel the trip' status.  I'd always heard that Diabetes UK offered affordable insurance, so called them up for a quote.  Much to my horror their Gold Standard package was a jaw-dropping £456!  Sinking to their bronze cover was still going to cost me £318, and now came with a higher £70 excess and dropped personal belongings cover to well under £2000, although medical was still £10,000,000.

On the advice of fellow PWDs, I dropped by Insure and Go, and was astounded when they offered me £10,000,000 medical, £2500 personal belongings cover and only £75 excess, for £156.  That included 15 days worth of 'hazardous activities' and full coverage of my type 1 diabetes.  And did I mention that covers Jamie and his working pancreas, too? It's a no brainer!

Insulin Pump insurance

Until recently it hadn't occurred to me to get my pump insured, because as I wear it 24/7 and any problems I've had in the past have been mechanical or damage covered under warranty, the pump companies I've used so far have switched them out within 24 hours.  But on this trip I'll be taking a loan pump, and although my pump is waterproof I may make the decision to remove it during any activities where it could risk being damaged.  That means if anything were to happen to either my own pump, or the loan pump, I would have to pay for a new pump.  And they are a complete steal at £4,000 each! As I rely on it, quite literally, to keep me alive, I didn't think the £6.99 policy with Insurance 4 Insulin Pumps was all that bad - especially as they cover loan pumps and worldwide travel.  Some home insurance policies will cover your own pump, but as someone without my own home insurance, and with a loan pump to care about, this was yet another obvious choice.

And finally...

Continuous Glucose Monitoring with the Vibe

I have been a fan of Dexcom CGM since before I started using it, and deeply in love with it since I first hooked up.  I also use a Vibe insulin pump, and although I had to step away from integrated CGM recently due to one too many overnight hypos waking me up with the pump vibrating violently at my hip, I don't want to take any extra equipment than I need to.  The idea of this trip is to 'scale down and live it up'.  So for the two months I will be away I plan to integrate CGM into my pump, so that I have one less thing to carry.  And as the handheld unit costs around £975 in the UK, I think I can deal with the CGM alarms buzzing away at me for just a little while.

Life with type 1 diabetes is about finding a balance between planning, reacting, damage-control and the odd 'hands in the air' moment of confusion.  But the purpose of all this is that when Jamie and I take that honeymoon we've always dreamt of, and will tell our children about, we can say we enjoyed every second.  The planning is so that when faced with these views, diabetes fades away and experience takes over.

Saturday, 8 November 2014

Animas Sports Weekend 2015: Registration has opened!

It's that time again, when people with diabetes across the country dive for their laptops to get their registration request in for one of the biggest weekends in the diabetes calendar in the UK.  It's the Animas Sports Weekend 2015!  

The weekend is an opportunity for people with a love of sports, or those wanting to know how to manage the diabetes beast in order to try it out.  The first year I went, I hadn't exercised property in years.  The last time I exercised was two days ago, and my blood sugars stayed between 4.5 mmol and 6.7 mmol throughout my hour-long session. That's on the Animas and Dr Gallen team, having given me the tools knowledge and confidence to exercise property.

Whether you just want to be able to take a gentle stroll with the kids, or want to run an ultra-marathon, this weekend will give you the tools to start on your way. It is run by Animas (but open to people on all manners of treatment) and headed up by Dr Ian Gallen, who helped Sir Steven Redgrave train for the Olympics after being diagnosed during this run of Gold-medal achieving accomplishments.   Sir Steven was kind enough to give Insulin Independent this glowing review of the work Dr Gallen does:

"When I was diagnosed with diabetes and thought that my sporting career would have to
come to an end I was absolutely devastated.  But with the support of Ian Gallen and his team, I was given the confidence to carry on with rowing and I was able to stay at the same level that I was at before having the condition; going on to win gold at the Sydney Olympics 2000.  I came up with the quote "diabetes has to live with me not me live with diabetes."  And that has stayed with me ever since in whatever I do in life."

Added to this already impressive set-up for a weekend, the event also offers the opportunity to meet and have an amazing time with other people with diabetes. That, in itself, is reason enough to go.  Often I hear people say they want to get fit before the weekend starts, because they are put off by the sounds of the activities.  But the weekend goes at your own pace, is full of people with completely varied levels of fitness, and is solely for the purpose of learning.  And as the fun from the activities subsides, the laughter moves to the lobby where there are guaranteed to be a troop of people propping up the bar into the early hours as they swap comical hypo stories, put diabetes to rights and form bonds that will last year after year.

So, I look forward to seeing you there! Just email sportsday@its.jnj.com to register your interest


Sunday, 19 October 2014

CGM: A happy distance

Since the first time I inserted a Dexcom sensor and saw my 5-minutes-apart glucose readings flash up on the screen in front of me in real time, I have never looked back. It was a commitment, deciding to self-fund the arguably expensive tool to manage my blood sugars, but a sacrifice it was not.  My choice to use CGM wasn't about the SafetyNet it provides, although that is a selling point in itself. Instead, it filled in the frustrating gaps I experienced when trying to gain better control.  

Going all non-integrated, again.
But last night, as I pulled myself firmly into the back of my peaceful sleeping husband, matching my shape with his, and trying to improve the already bad night's sleep I was having, my Animas Vibe, now having my CGM readings integrated into it on an almost permanent basis thanks to the convenience that brings, started to violently vibrate in the small of his back.  He awoke with a fright, and patient soul as he is simply asked, "Are you OK?"   It was the third hypo of the night, and it was the third night like this in a row. As tired as I was of treating hypos, I'm sure his tiredness was greater still.  He didn't even need to be awake.  A safety-net it is, but a sleepless night and being awoken by the endless buzzing beeping and frightful noises of the Vibe were enough for me.  I treated my hypo - a slight dip below 4.4 mmol - and turned my CGM function off, leaving the redundant but brand-new sensor in my arm. 

This morning I decided to switch back to my handheld receiver.  The downside being that I have to carry yet another device with me.  But the benefit being I don't have to keep it attached to myself, or my long-suffering husband, for a little while.  I quite often don't hear the initial beep or vibrate of a first hypo warning.  And quite often, my blood sugars are simply nudging above and below the alarm line.  That way, a slight drop in blood sugars which was always going to correct itself doesn't need to be the frustrating interruption it sometimes needs to be.  And my husband can sleep easy.

And sometimes, we just need a break from it all.

Friday, 10 October 2014

The cure? Could it be?

Diabetes 'cure' stories are ten-a-penny these days; as a routine today as collecting your prescription or brushing your teeth. Some hinge on theories or ideas still decades off materialising into anything tangible. Others - okra-cocktails and vegan-raw-superfood diets - are simply hokum. I barely register them anymore, because the psychological bashing that allowing yourself to believe that the rigmarole and emotionally-draining long-term management of a chronic condition could be over, is a bashing I am happy to forego. 

But this morning, as I stood over respectable broadsheet 'The Times' laying on the pile of newspapers at the corner shop, reading and re-reading the title, my heart started to thump a little faster, and I was oblivious to the world around me. 

"Diabetes: a cure at last" it read.

I'd seen a photo of the headline in my Facebook timeline and for the first time ever, had made the effort to pick up a copy and take a closer look at the research. In the past efforts to cure diabetes have been dogged by issues. Islet transplants overshadowed by the need for anti-rejection drugs and limited lifespan of the cells once transplanted, not to mention the 3-4 donors (passed-away people) need per diabetes patient. Stem cell researchers needing to did a way to tailor cells to each individual patient, a task so major that those diagnoses would outweigh cured patients at a rate of knots. And then there was the 'bio-hub' fiasco. A great idea, but little more than an idea, pulling at the heart strings of parents and adults desperate to see an end to diabetes. If was no more than a funding drive, aimed at bringing in the dollars before it could get underway. 

The story in today's paper, was different. It wasn't an idea. It wasn't a piece of research now setting our to address the many anomalies they identified. It wasn't a funding drive. It is a piece abut the success scientists working at Harvard - already 23 years in the making - have seen in identifying a strain of genetically modified stem cells which can be transplanted into ANY person with type 1 diabetes, and 10% of people with type 2, in large enough quantities to eliminate the need for insulin. The cells, protected within a proud capsule (think bio-hub, only already in existence) allowing them not only to be protected from immune attack, but also removed quickly if they were to stop working. The study did say that it would be a number of years before we would be using this routinely in patients, but that it is already in final non-human primate trials, before human trials begin.

Could it be? 

What's more, the article tells of how one of the lead scientists, Professor Doug Melton, chose this field of research when his son was diagnosed with type 1 at six months old. Later, his daughter would receive the same diagnosis. I liked this guy already, now, I really understand his passion. 

As I sit here in my car having thumbed through the pages of the article, my CGM alarming to tell me that my glucose levels have gone over the range I need them to be in today already, the idea that there may be an end to this one day is a dream. It seems possible, but in the murky, strange way a dream does: moments of vivid clarity followed by moments of 'naaaah, it can't be'. 

I will let the human trials commence before I let my mind set on the idea of one day not having to worry and fret my way through each day, living a life dictated by numbers, portion sizes and thinking about the future in all the wrong ways. What's more, the idea that my children, who one day may face the same diagnosis, may avoid the decades of injections, food measuring and finderpricks I have, somehow gives me peace. 

I hold on to hope. 

Friday, 3 October 2014

The rough(ish) with the smooth

I'd known when my consultant handed me my blood test forms, with a few more boxes ticked than I care to think about, that my latest set of results were not going to fare all that well.  My recent wrist operation, teamed with a trip abroad and countless (wonderful) hours at the computer arranging the Adventure D launch weekend, mean I have been wildly inactive in recent weeks and have been relying on fast food. And I know what that means for my HbA1c.  

As I approach my mid (arrrrghhhh!) 30s (wait, WHAT!) I consider more and more how I might approach a pregnancy one day, and know that in order to vastly reduce any risk of the endless list of complications thrown as us PWDs with an achey baby-maker, I know that ideally I need to get my HbA1c down towards the 6mmol or below mark.  You would think that with CGM, a pump and my knowledge of which foods do, and don't, work as well for me, I would be able to nail this. Not so.  My approach to managing the busy events of my life of late has been to use my CGM as a safetynet, my pump as a justkeepmealivegoddamnit tool and my diet has been, well, let's not even go there.

My penultimate A1c result was an attractive 6.4%.  My latest was a somewhat less-so 7.6%.  

Normally 7.6% wouldn't concern me greatly, but it highlights for me the battle that wannabe mothers have on their hands, and that no amount of 'getting by' will suffice when considering motherhood with type 1.

And it's back to the drawing board for this little goof-off.

Saturday, 20 September 2014

Adventure D launch weekend!

On Friday morning 12th September 2014, after a night of minimal winks and maximum anticipation, my brother, Chris, and I made our way to CYE sailing center in Chidham West Sussex, for the inaugural Adventure D kayaking weekend!  The two day event in impossibly beautiful surroundings, would see eight fabulous people with diabetes, including Claire Pesterfield, a type one herself and diabetes specialist nurse to boot, along with a team of volunteers and instructors, take the attendees from 'never been in a kayak' to having advanced skills and being equipped with the knowledge of how to kayak safely.  

As the group started to arrive, any fears or nerves we had about the weekend slipped away as the smiling, keen faces of the fabulous group getting to know one another showed us that this was going to be a great weekend.  The weather was idyllic, the harbour was still and the gentle murmur or friendships being made set the relaxed pace for the weekend. We settled after our carb-counted meal and learned from Claire how we might adapt insulin and food intake for the water-based sessions the next day.

Saturday saw the group take to the water, starting off in practically unsinkable 'sit-on-top' kayaks, to learn about strokes, boats and safety.  Throughout the day were relaxed but regular breaks to allow for blood testing and tweaks to insulin or carb intakes here and there, and grow in confidence on the water.  The sessions ended with games - transforming the once-cautious sit-on-top users to competitive kayakers, losing any inhibitions they had in order to smash the other team out of the game, all the while donning fully-fledged Pyranha kayaks, and pulling out some professional moves in order to win the ball, catch the 'robber', or make it through the finish line first.   The laughter resounded through the harbour we called our own. Watching from the sidelines, this was the Adventure D dream come true, playing out in front of us.

After a delicious home-prepared and carb-counted curry, the group made for the local pub to share a drink with their new-found friends and to re-tell their favourite moments of the day. It was without doubt one of my favourite moments of the weekend; watching budding kayakers become friends and for some of the group, mix with fellow people with diabetes for the very first time.

Sunday saw the group of kayakers, now confident on the water and ready to put their new-found diabetes knowledge to the test, take to the water, keen and excited.  As we journeyed through Chichester harbour to the beautiful sights of Bosham, the instructors gushed about what a delight it was to teach this group. The Adventure D group.

As the Sunday came to a close and the Adventurers told us how they wanted to buy kayaks, had grown in confidence or didn't want to go home, we knew they had enjoyed it as much as we had. Every. Single.  Moment.





When I think about the first time I tried kayaking, a smile creeps across my face, and I can almost feel the warmth of the sun and the spray of the saltwater on my skin.  It was a clear day in late summer, there was no wind to speak of and the water in the harbour glistened as the rays bounced off the gentle undulating waves as the water ebbed and flowed.  That day was good.  This weekend, was perfect. 

Thank you to the wonderful people who joined us for the weekend, and made the event such a success.  Here are your best bits :)