Friday, 21 August 2015

Pump failure: pregnancy panics and the cocoon of the DOC

It took me a good six months to trust the technology after switching from injections to insulin pump.  And at first there were a great deal of bumbling involuntary midnight cannula changes, kinky moments and at times I was sure my equipment was trying to kill me .  But slowly and surely as my HbA1cs came down, my hours of valuable sleep went up and my quality of life started to soar, it wasn't long before I would have made for the mountains beyond Rio if the NHS had tried to take my pump back.  It was mine: managed by me, and part of me.  

Fast forward five years and with the introduction of Continuous Glucose Monitoring (CGM) into my life and a growing baby in my belly, and the idea of coming off my technology, even briefly, gives me the shivers.  Granted, I dream of the day when I'm no longer tethered and catching my go-go gadget pancreas on door handles or unsuspecting strangers I stand a little too close to, but my choice to remain on a tubed pump indefinitely is based on five good years of a happier, healthier me.  And my choice to use an Animas Vibe which can integrate the Dexcom CGM I use, as well as being waterproof, is a decision I've never looked back on.  

But I still like to moan.  I am British, after all.  Diabetes, particularly during pregnancy, is extremely tiring.  There is no time to burn out because the kicking, wriggling bundle of joy in my belly means there is no taking my eye off my diabetes - well before and beyond the nine months that little hitch-hiker is mooching its free ride.

"I'm almost looking forward to the burnout after baby is born", I joked, bobbing around the swimming pool with my best friend of 22 years.  "I might even take a pump break.  I'm so tired of having to change the reservoir so often now that insulin resistance is in full swing." I said, not so jokingly.

Be careful what you wish for.

Three hours later and with a slightly watery reservoir change having taken place halfway though our spa day, my pump was making some pretty freaky noises.  The kind of noises a distress call from Wall-E might sound like if someone tampered with his electrics.  Noises which I instinctively knew would make for a long and worrisome night.

Driving home I un-hooked my pump, because the semi-permanent not-very-rhythmic vibrating it seemed to be favouring, teamed with the intermittent squawking gave me little faith that I wanted to be connected to a malfunctioning pump with a full reservoir of insulin.  As I reached my home I dashed inside and dialed the number for Animas, knowing that at 5:45pm it would be the support team over the pond in the states I needed to speak with.

While on hold I took a photo snapshot of my basals profiles (which thanks to insulin resistance are barely recognisable and certainly not memorable since the last trimester of pregnancy kicked in), just in case my pump died all together.  This was my best move that night, given that five minutes later while running some checks on the pump, the buttons gave up all together meaning the basal menu was firmly out of bounds. After a few checks and the inevitable diagnosis that my pump was kaput, and the Animas team had fired off an email to the UK office that I would need a replacement ASAP. Awesome.

But that was really the easy part.  Now I just needed - while 7 months pregnant and with diminshing leels of insulin in my system - to figure out how the hell to make the transition back to injections.  I had, of course, ordered in some spares of my pre-pump insulins Lantus and Lispro when I fell pregnant, knowing that this day may come, but remembering what the hell kind of pattern I was in, when to take the background insulin and how long it might take or that insulin to kick in, felt overwhelming. My last (unsuccessful) pump break had been 4 years earlier and had seen me back on my pump within 8 short hours, so my track record for this kind of manouevre was not good.  Ordinarily I would have just fumbled my way through, but with each swift kick to the inside of my abdomen, I was reminded why this would not be the ideal time to experience my first adult diabetes-related hospitalisation. It was not a time for 'winging it' or making mistakes.

I quickly took to social media as fast as my fingers could type, because having called my clinic a good two hours after they had closed their doors I'd found no-one there to speak to for advice, unsurprisingly.  It was then that I started to panic.  And it was then that the cocoon of the Diabetes Online Community came to life.

Within an hour of frantically typing out my garbled requests for advice I had friends from Devon offering me spare pumps and 'strangers' (whom I feel connected to in indescribable ways) wishing me well.    An hour after that diabetes nurses were offering me advice on what to watch out for and when to test.  An hour after that I was tweeting messages to one of the lead specialists at my home clinic.  An hour after that I was texting my very own consultant for help after a fellow blogger offered me their number, having read about my situation online.  And an hour after that I had administered the insulins I needed and was settling in for bed, feeling secure with the advice I'd received, and that the remaining CGM technology I had going strong would help me keep an eye on my levels overnight


I woke up 2-3 hourly during the night, and managed levels of 8-9mmol throughout.  Higher than I would have wanted, but acceptable considering the back-story.  The next morning the inevitable rise started as the Lantus still had to take effect (having learnt on SoMe that it can take up to a week to become truly stable!), and the two-hourly injections weren't quite keeping me where they should.  But, five hours into the day and after a desperate call to Animas were I firmly played the pregnancy 'card' (cheeky, yes.  Shameful, I don't really care...) and begged them to get the replacement to me that day, and my new pump had arrived. Thankfully, they did.  They probably heard from the wobble in my voice that of all days to go the extra mile, today would be one that truly counted to one very tired and frought person.

The next three days were a roller-coaster of results from the initial highs to the eventual too-much-insulin-sticking-around lows, but my pump was back on, and the baby playing bongos on my kidneys was telling me it was worth it.

Without the DOC I would have muddled through somehow.  But that was how I spent my childhood and teen years, before Social Media became a part of the arsenal I use to manage diabetes; I muddled through.  Since the DOC emerged, and at times like this, it helped me feel safe, secure, empowered and in my time of need, cocooned.  And for that it is worth its weight in gold.

Tuesday, 18 August 2015

Judged.

Blood test measurements, and certainly my reactions to them, are loaded with emotion.  My results are just that - mine; personal, meaningful, emotive, and loaded with context.  And having someone I don't know look over them with a judging eye from their tower of objective reasoning makes those emotions rise up in me.  They shouldn't, because I know as well as the next person that any result I see is 'just a number' and that I should only ever treat them as a snapshot of information at that moment, at that time. But taking a step back is hard when your life is littered with words like 'balance', 'control, 'good' and 'bad'.
 
My 29 years with the condition have taught me that diabetes is one of the most complex science experiments in the world.  Why?  Because our experiment is happening in 'real life' and countless factors are constantly at play.  I know that how much sleep I have, what I ate for dinner last night and how hot or cold the weather is, for example, all play a role in impacting my blood sugars.   And pregnancy has opened up a pandora's box of reasons filed under 'other' which can affect my blood sugar control.  My usual diabetes pump team, who have spent 6 years working with me to help me achieve the level of control I am happy with know this, and are usually the ones reminding me not to concentrate too much on the results above or below where I would like them. They are the masters of patting me on the back and giving me some positive perspective. 
 
A few days ago I attended my first maternity diabetes clinic appointment.  Until now I've been attending usual maternity appointments with my wonderful midwife, and have seen my usual beloved pump team for the rest of my diabetes management every 2-3 weeks.  But now that I have reached the 25 week milestone in my pregnancy, my care is transferred down to what I call the 'warehouse'.  My hospital is a verylarge hospital on the South Coast of England, with an enormous amount of speciailist departments and thousands of women coming from across the county to manage their pregnancies and give birth to their children. Because of these numbers, it can come across as sheer pandemonium when the unit is full of large waddling ladies being hearded from scan department to generic health check areas.  Seeing the same person twice, other than the familiar faces of the diabetes team, is a rarity.
 
As I sat down in the specialist registrar's office having never met her before, and whipped out my weathered and paint-chipped blood glucose meter, placing it on her desk for her to see, I was fairly happy that I had been doing all I could to manage my diabetes during the notorious second trimester of pregnancy, when insulin resistance and reduction in mobility means my blood sugars have been a little more 'rollercoaster' than I would have liked.  
 
As she scrolled through my meter, her eyebrows raising intermittently as she let out little puzzled breaths, asking me what arrows meant and whether or not certain blood sugar results felt a certain way, I was getting little read on what she was thinking, but was starting to feel protective of the numbers she held in her hands.  I was starting to feel judged. 
 
"Are you aware of the targets in pregnancy?" she asked, not looking at me.
 
"Yes.  5.5mmol before a meal and 7.5mmol after." I replied, a little perturbed considering the 5.3mmol currently trending on my CGM.
 
"I often just use the meter at the extremes because my CGM tells me what I am doing the rest of the time." I said, trying to explain myself, my guard now firmly up. She looked at my bag where the CGM was poking out of the top, clearly in such regular use that packing it away in a zip-pocket was pointless.  I could tell she didn’t really understand what a CGM was.
 
As the questions rolled I clocked my husband shifting in his seat, also getting uncomfortable about the loaded questions from the stranger flicking through my numbers .  To add a little context, my baby is currently measuring in the 50th percentile for growth, meaning if you took 100 babies, mine would be perfectly smack bang in the middle for growth; not too big, not too small.  My A1c is still in the mid 6s even with the second trimester mayhem, and my CGM trace shows an 80% in target spectrum of blood sugars. The 'out of range' figures are also neither drastic, nor regular. Baby is kicking away hourly and I've been feeling amazing, diabetically speaking and otherwise.  I do not need to explain myself.
 
With a few more comments fired about being too low a little too often, and trying not to rebound from them, Jamie and I were shuffled back out of the office and seated back in the warehouse for our scan, a moment we'd been both excited and anxious about.  But now we were a little more focussed on whether I really was doing OK or not, considering the registrar had just carried out what felt like brain surgery on my last 2 week's results. 

I've come to learn that being subjective about people's responses to my numbers is not one of my strong points, and that I need to let certain things go.  But as we took our seats and exchanged knowing glances, Jamie managed to sum up how I felt in one word.
 
"Judged", he scoffed.
 
"It's not just me then", I replied, glad that my husband 'gets it' and was ready to jump to my defence given that he has seen first hand how hard a job pregnancy has been at times. I've tried to avoid being the over-sensitive pregnamonster, but picking apart remarks I take the wrong way because of beasty hormones, over ones with genuine carelessness or malice, can be tough. But seeing that Jamie has also picked up on the tone and the questioning made me feel better. Like I wasn't the crazy emotional one.
 
With that, we rolled the comments off our backs and chose to start focusing on seeing the baby again, and on celebrating the excellent blood pressure and clear urine analysis I'd already been told about that day.  But with my blood test meter now firmly back in my bag, locked away for my eyes only, I was reminded of the sharp sense of privacy-invasion that exposing my results for the 'panel' makes me feel.  Everything is under scrutiny when you are pregnant, and those whiley hormones have a habit of making you even more sensitive to anything which looks vaguely like criticism. The fact that in three months there won’t be a team of people ready to assess and evaluate my every blood sugar is an idea I grow more fond of each day.
 
Three months, and counting.

Tuesday, 28 July 2015

Pregnancy weeks 9-12: kidney-bean babies and leveling out

So at 9 weeks it's finally sunk in; we're having a baby-kid. It's a strange feeling, knowing you are pregnant but not really having tangible proof of that, other than the crazy sore breasts, insane lethargy and incessant crying at TV adverts with mistreated dancing animals.  I've donated a shit lot of money to charity during this stage of pregnancy.  Be warned.

I must have looked at that pregnancy test a millions times, but it wasn't until I saw the kidney-bean-with-ears shape on that first early scan, that I really 'felt' pregnant. There doesn't seem to be a 'standard' approach to scanning mums with D early, but ours was scheduled at 9 weeks, and offered estimated dates of conception and due date, and basic checks that everything looked OK.  Not that I would have had a clue because to me the image on the screen could have been anything, but seeing the flutters of the primitive heart flicking away on the screen was a pretty special moment, and made the many hypos and achey worn-out feet worth every single moment.

After donating more of my best blood cells to the hospital's store of my personal supply, now quite possibly needing its own wing of the hospital, we've been told all looks good with the growing kidney-bean, and that my HbA1c was holding steady just above 6%.  This, along with the fact that I'm learning how to manage the 45-minute hypos, means things have started to feel a little more normal again in life.  I'm packing away the carbs with the gusto of a famished post-hibernation grizzly bear, and if I ever start to waver or feel a little overwhelmed with the task ahead, I look at the photos of the bean, and remember why I'm doing this.

As a result of the first scan and midwife appointment, I'm now also in a regular routine of seeing my diabetes team every 2 weeks for them to look over my results, make suggestions and work with me towards achieving blood sugar levels as close to 5-7mmol as possible.  Some days this feels like a mammoth task, but keeping their email addresses to hand and dropping them a line if I am ever struggling has helped me enormously in feeling like any issues are addressed straight away.

Things I've noticed in the final parts of the first trimester:

~ I've become more sensitive to insulin, and more accepting of carbs.  Rarely rising above 9 mmol even after the most carbilicious meals mean the final parts of this trimester have left me feeling like life is leveling out, just a little.

~ Hypos still take a long time to recover from and some hit in 'stealth-mode', with little warning.  If you don't use CGM, I would highly recommend increasing blood tests if you haven't already, because the tiredness and general overwhelming need to be completely horizontal, if awake at all, in early pregnancy means those hypos-in-cloaking-devices can knock you for six.

~Blood tests still suck.


Friday, 10 July 2015

Pregnancy: weeks 5-8 (boob-ache and bolus-mayhem)

By now if the constant boob-ache and total lethargy hadn't given me reason to suspect I was packin' a baby down there, the five pregnancy tests sealed the deal.  I was one of those horrendous secretly-thrilled people filed under 'lucky bastard' who didn't suffer any sickness (yet), but, before you virtually strike me in the blog-face or permanently unsubscribe from my posts, I have taken to spontaneous day-sleeping.

Spontaneous day-sleeping is a marvellous condition which makes it all but impossible to keep the pregnancy a secret, and works wonders for your relationship when every film we watch together ends in me snoring or falling asleep immediately after the opening credits. Sex, has all but gone into hynernation, because I'm asleep all the time, and there are laws against one-way loving. Jamie, is thrilled.

Diabetes-wise, these weeks weren't too crazy of a time after the first 4 weeks other than some pretty striking hypos which seemed to take 45 minutes or more to recover from. Having been away travelling there was still a whole heap of late-night campsite-tramping and wicked post-meal hypos needing lots of fruit-juice glugging.

During these weeks you may well be going along to your maternity clinic for your first blood tests (these don't get any easier, even with a kiddo on board) and some information on how your care will take shape over the next few months.

Below are some of the things I noticed over these last few weeks.

~I've been religiously using gentle walks to budge down blood sugars when I know I have enough insulin on board but that my post-meal spike is going up just a little faster than I would like.  A quick 15 minute walk around the block once or twice is enough to bring me back into range, and the beauty of walking is that even when lethargy-face hits, it's not such a big ask to go walking for 15 minutes.

~On the plus side, carbs, which I was convinced had reached the end of their sweet life during pregnancy, are back in full force. With some cleverly timed bolusing, I've been enjoying meals with 70, 80 or even 90g carbs.

~ pregnancy gives you 'hunger-rage'. You'll know it when you see it, and you'll probably consider strangling any stray cows eating unattended in a field if hunger-rage strikes. Because you will be THAT hungry. 

~Blood tests still suck arse.

~For some reason my blood sugars have become increasingly more difficult to bring up after a hypo.  Initially I made the horrible mistake of treating hypos twice, because after 30 minutes I was still in the 3s at a stable pace. Be warned, treating twice is a false economy, because you'll most likely spike twice as hard and twice as fast when you recover.

Thursday, 18 June 2015

Insulin pump end of days: The Animas 2020, IR 1200 and IR 1250

With all the hype around the Vibe insulin pump in recent years it would be easy to forget about the the Animas 2020 insulin pump, which was a complete favourite across the diabetes community and at one time the most exciting pump on the technology landscape.  Many still wear one because they love it so much.  But for those people still using an Animas 2020 insulin pump (and the IR 1250 and IR1200) this New Year's Eve will signal the close of a chapter on their current insulin pump choice, because the software these pumps uses will no longer be functioning after 31st December 2015.

This has come about because of memory limitations of the technology at the time the platform was created, but as these products are no longer manufactured by Animas they are focusing their efforts on creating the next generation of products in order to provide patients with better solutions and sheckshy new technology.

After 31st December 2015 the pump will no longer function, and will generate a 'Call Service' alarm.

In order to avoid any disruption to insulin pump usage, it is really important that you contact Animas UK as soon as possible, who will offer a replacement Vibe pump, if eligible.  No additional warranty will come with the new pump.

If you use a 2020, IR 1250 or IR 1200 please contact Animas on:

Customer Service
0800 055 6606 (for UK)
1800 812 715 (for IE)

Saturday, 13 June 2015

A belated look back at the Animas weekend 2015

Somehow life has run away with me in recent weeks, but finding time to review the Animas weekend which took place back at Loughbourough University in May 2015 and give a little look at the photos from the weekend has been a 'must-do' for quite some time.  

Two years ago Sir Steve Redgrave said this about the journey he had been on since meeting Dr Ian Gallen after his diabetes diagnosis, and then going on to win his fifth Olympic Gold medal after his guidance and advice:

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. 
Steve


Want to find out more information for next year, so you can come along and be immersed in a weekend of fun, surrounded by people with type 1 all wanting to learn more about sport and the effect it has on diabetes, then email sportsday@its.jnj.com.

And check out the video montage of this year's exploits.



Enjoy!

Friday, 29 May 2015

InPuT's virtual flash mob: The best kind of Sunday lunch get together

My passion for the work InPuT do is no secret.  Having witnessed first-hand the power of patients being given the knowledge, support and talking points needed to poke their consultants with a big technology-accessing stick, means I will always understand just how much they are needed in the diabetes landscape of the UK.  Just recently I had the pleasure of attending the Animas weekend and having spoken to several people trying - with limited success - to access technology which could improve their lives, I know just how much that need continues.

I've also seen first-hand how carefully InPuT spend the money they get. In a world where charities come under fire all too often for big business-like spending and abhorrent expense account-rinsing, InPuTs fresh and frugal attitude to spending is the antidote.  Encouraging the use public transport and relying heavily on the support of volunteers and part-time multi-skilled staff, their main aim is always to help people access appropriate diabetes medical technology.  And here's to not forgetting that they are the only charity in the UK doing this.

If everyone in the UK who uses an insulin pump donated just £1 a year, InPuT would have the money to continue their work in the UK.  If everyone who used some form of medical technology did so, they would be able to do even more.  So how can we give back to one of the lesser-known but truly needed charities? Well this Sunday we have the chance!

Rather than asking you to interrupt your usual basal dosing of money to the charities you support on a regular basis, InPuT's donation is just a quick bolus of support.  This Sunday, on the 151st day of the year (because NICE guidance TA 151 refers to the provision of access to pump technology, of course!), everybody is going to get 'together' for Sunday lunch, and in a virtual flash mob of support, will bolus just £5 to InPuT by texting 'INPU31 £5' to 70070.  



I've been 'pumping' now for 5 years, so this year I will bolus my £1 per year to InPuT as a tiny - but enormously appreciated - 'thank you' for the work they do.  Because I know how important it is that they have the funding they need.  So, I ask this:

Have you benefited from the work InPuT do?
Do you know someone desperate to access technology who InPuT could help?
Did you find out about InPuT after your own battle with accessing technology?
Do you want to help other people access a pump or CGM?
Do you want to be involved in a frankly fantastic event?
Could you spare just £5?

If you answered 'yes' to any of those questions, I will see you at lunch!