Wednesday, 24 August 2011

The Big One - To Pump Or Not To Pump

So I now get to the biggest question of my recent delve into the online community.  

Firstly a bit of background for my non-local readers - hello by the way, I still love the fact I'm discussing something very personal to me with people from around the world when for the last 30 years I've not really discussed it with anyone outside my very close family. And, I even know some of your 'real' names. - Anyway as I was saying; funding for pumps in the UK is very much down to luck. Firstly you need to live in an area (Local Health Authority) that provides pumps and then you need a Consultant, or Endo, that agrees with your justification for having one. As ongoing costs are free to the user (if NHS approved) this cost is significant. Just like the rest of the world, money is in short supply at the moment, so everything is short-term rather than appreciating saved costs from ongoing care etc. I am extremely fortunate to live in a LHA that provides pumps and indications so far are that the Endo will support my request, if I make one.  So the decision for me is a lot simpler than for a lot of the DOC and I must be thankful for that.
I really sympathise for those less fortunate where the battle for funding/supply is constant, but, this is my story so thankfully, that’s not part of my challenge.

However, the decision to make is still a big one. For me, pumps seem to have been around for a long time developing from the size and convenience of bricks to something a lot more discreet.  I'm going to try and break it down into good and bad points.  However, I'm certain the end decision will be made by the heart rather than the head.

I'll start with the good bits (the pros):

  • Better control - For everyone selling the pump concept, and yes I'll include a significant chunk of the DOC here, I'm told frequently that A1cs improve dramatically and without fail. I can believe testimony but is this because of the pump or because of the amount of control needed to ensure the pumps 'works'?If I do as much testing and carb counting as is required on the pump but without the pump can I achieve similarly fantastic results????
  • Public dosage - The biggest problem I have with MDI is the publicness of shooting up.  Pumping would give the chance to subtly administer my dose without the need to hunch shoulders or visit the bathroom. 
  • Closer to natural - there's no escaping that a continual supply of bolus is a lot closer to the non-Ds norm than basal once a day with boosts whenever I eat.  This has to be better for the body, or that might just be my flawed logic.
  • Less injections - I'll admit the contraption for inserting the needle looks a little scary but it has to be better than injecting at least four times a day. Every day.  My skin wants a rest but I guess I've got the wrong 'thing' for that to be able to happen. 
  • CGM - Although I can't get funding for a permanent CGM, the local clinic loans them out frequently to pump users and this is a big draw. If CGM was available to my current regime the decision would be even more obvious to me. 
  • Tech - I'll admit to being a gadget freak so having another toy to play with does excite me a little. Sorry.  
  • Long-term complications – Again I’m fortunate. After 32 years of not perfect control I still have all my limbs and eyesight.  By changing to a pump and it’s ‘better control’ do my chances of maintaining my toe count improve?

So what in my head is stopping me from signing up straight away (the cons):

  • Always there - This is the biggie. For me multiple injections means I cam sometimes leave the house and just take myself. I can go out relatively clutter free. On a good day I just need my pen. If I'm being vigilant I'll also grab some sweets and if really, really conscientious I'll also take a testing kit.  That's it. Lightweight and disability free for a few hours. Going on holiday I have two pens plus a spare, a testing kit, some needles and spare insulin.  Now compare this with the swag needed by a pumper.  I’ve seen varying amounts quoted but the minimum is at least double of what I take currently.  For me double-kit means double the amount to forget also.
  • Amount of kit that fails - to test my pen I do an air shot of half a unit until I see liquid. Inject. Done.  No air bubbles and I know that if I dial 8 units and feel the plunger go down I can be pretty confident I've delivered 8 units.  Tech goes wrong, and sometimes it won’t do what I tell it. If it’s a pump that fails the consequences take a while to be discovered and then resolved.  And a total pump failure means a whole regime change for 24 hours while waiting for a replacement. 
  • Compulsory testing – i.e. if I want a day ‘off’ on MDI I can check my fasting BG in a morning and do normal carb counting and dosage adjustment through the day to get me to the end without feeling crap.  With pumping if I don’t do the testing how do I know everything is working OK and that I haven’t got a major problem?
  • Outside opinion – I know this is shallow and I know this will vary from person to person but for me it’s quite important.  I’m ‘Dave’. Not ‘Dave the diabetic’ or ‘Dave the bloke with the medical contraption permanently attached’. Just ‘Dave’.  I like that. I like being judged by my bad hair or poor dress sense rather than a pitying look.  I also like being just me for my family.  My wife is very, very dear to me and I don’t want to be the ‘freak with the wire’ that she’s been dumped on.  And do I want to give her a constant reminder that I’m faulty goods?  When I undress at night I’m left with my body with no attachments or signs - apart from pepperpot fingers and occasional bruises.  There’s nothing ‘unnatural’ attached or showing to get in the way of a good night’s sleep. This is a really complex part of the debate and is hard to summarise but for me D is part of me, not what defines me.  By jumping to the permanent attachment am I flipping that?
So that’s it, the main meal part of my debate.  I had hoped that getting all this down would make my decision easier but I’m not sure it does.  The DOC has plenty of examples of pumping working perfectly and finding a MDIer in the mix is often not easy.  However, does that mean it’s right for me?  I’ve had a few discussions recently with some good online friends who are very positive that pumping is the way forward, and I really value their input, but the big cons listed above are holding me back at the moment.

I’m not sure how many of you will have got to the end – I apologise for the length, my head needs to dump now and again – but as you have made it, I’d really, really appreciate your input/feedback and if you can answer any of my very vague questions then all the better!  My next Endo appointment is in two weeks so my head will probably have exploded by then.

Thanks for reading.

Dave

Sunday, 21 August 2011

The Start of the Change

So it's only taken 32 years but now it's time for me to take the control.

My always dreaded HbA1c managed to creep over 10 in April this year so the nurse at my doctor decided it was time I got to the consultant (endo) at the hospital.  Being a little bit of a swat this scared me a little so I cracked on for the next few weeks trying to get everything more under control.  

For the first time, I stepped into the Diabetes Online Community (DOC) and after browsing a few forums where tests results were displayed as badges of honour, I eventually came across a few that had real people with similar issues and concerns to me.  My first plug here for Shoot Up or Put Up who gently nurtured me and gave me some confidence to go to my appointment with the facts and questions I needed to try and sort myself out.  To say I was fired up and ready with all my guns would be a good analogy.

After getting over the initial teeth-sucking, the registrar and I agreed on a plan and I was fortunate to reunite with my Diabetes Specialist Nurse (DSN), Zoe, who I'd last seen in the last millennium.  Sitting with her we sorted out a plan of attack. In conjunction with the dietitian we agreed that my high A1c was probably due to too many hypos rather than flying high all the time.  This was a hugely new concept for me.  The plan of attack was to lower my once-daily, nighttime basal and then match the bolus' to the carbohydrates in my food.  This immediately sent me back thirty years with memories of weighing mashed potatoes and counting 'lines' or 'exchanges'.  Some things stick and my first question was "Is a digestive biscuit still 1 line?" - and the answer is apparantly yes!  After so many years of maintaining a casual relationship between food and dosage this seemed very strict but matched my mathematical brain which suggested the logic made perfect sense.  I did ask about restarting a fitness campaign at the same time but was asked gently to hold off on that until my carb ratios were sorted.


Following this I've returned a few times and together we're getting there.  My improvements have been helped greatly by recent technical improvements in my kit cupboard.  First up came the Carbs & Cals iPhone app that's excellently useful in helping to judge the carbs in my food - I got the printed version first but the app has all the same content in a much quicker to read format. Next is the Novopen Demi that allows me to inject half units which is much easier when doing the maths for the carb ratios. Finally, and the newest arrival, is my Aviva Accu-chek Expert. It is fantastic and is part of the reason for the increased dilemma as to whether to switch to the pump or stay on MDIs.  Mike has done a much better and longer review than I could possibly have done so I'll kindly link to him here. Thanks Mike.


A1c taken whilst at the hosptial for the first visit was 7.9 which shows what I could achieve without any professional input but obviously still a long way from the 6s I crave.

So that's where I am. On the road to better control but still not sure which path to take next.  The next decision is the big one.  Do I stick to MDIs or leap into the world of pumps?


Next up in the blog will be where I try and break down the advantages and disadvantages of Pump over MDI.  Obviously switching to the pump would be a huge change for both me and my family so I need everyone, and especially my better half, to help me make the right choice.

As a post-script I'd like to send my love to those across in the US of A who aren't as fortunate as the majority over here in the Great of Britain. Whenever I need new insulin or test strips I just go online to my doctors website (just done as writing this reminded me I need more test strips), fill out a repeat prescription form and collect from the pharmacy two days later, for free - and that's the big bit.  The NHS often gets a lot of stick but for me 'it does what it says on the tin' and I am truly grateful to be living in an age where it is available to keep me alive and in a country where I'm not at the whims of an insurance company whose business model is to try and restrict how much I can get.

Friday, 19 August 2011

Where to begin...

Welcome to the blog and whether you've come here deliberately or landed by accident when looking for fruit with medical conditions I welcome you with all my heart.

I was born in 1975 as a son of farmers from Cumbria and the brother of two elder sisters and one elder brother.  The early years are so long ago now that my memories are very vague and mostly involve picnics in the car in the rain. 

Then in 1979 my life-changing moment arrived and I didn't even really appreciate it.  Obviously my memory is tiny of that time but I do remember lying on the sofa before the local Doc, a very polite gentleman called Dr. Procter (and I still believe he has the perfect doctor's name), told my parents to get to hospital pretty sharpish as he'd just diagnosed me with Diabetes Mellitus.  Back then I'm not certain it was called Type 1 but the consequences were very similar to today. 

After my parents practised on an orange a few times they were told to inject me once a day and strictly control the amount of food I ate and balance this with any exercise.  At the time I was still 3 so didn't really appreciate how devastating this must have been for them and it's only now with small kids of my own that I can understand the torment they must have gone through.

Over the years developing technology moved my treatment from single injections and peeing into a test-tube to multiple daily injections (MDI) and testing my blood glucose levels with a fancy meter in ever shrinking sizes.

The middle years also involved trips to the dreaded consultant that normally involved multiple coloured pens and the test diary being filled retrospectively to prove my control was being managed closely.  The big block on this charade came with the introduction of the HbA1c test which measures your average blood glucose levels over time so showing a list of fake perfect numbers wasn't really helpful anymore.

The mid 90s had the highlight of meeting my wonderful wife and this gave me some more focus to really get everything under control but still over the years it's not really been as good as it could/should have been.

In my 'other' life I'm quite a technical kind of guy so I'm still amazed at how little time and effort I took to seeking out the Diabetes Online Community and the support they could offer.  I think I was convinced that D wasn't going to define me so I shouldn't spend much time looking into it apart from occasional tests and hoping my dosage adjustment was roughly correct.

The addition of a fantastic son and wonderful daughter brought some real focus and the start of a push to really get control of something that had been ‘there’ but not ‘carefully managed’ for over 30 years.

In 2006 I ran the London Marathon with the continued support of my wife after getting an automatic entry for applying so many times unsuccessfully.  Although fundraising really isn't my thing I decided to raise some money for JDRF for entirely selfish reasons - as their goal is to find a cure for T1.  In the training and before the race I met a few other Ds and this was probably the first time in over ten years I'd talked to anyone outside my family about it.  Yet still I held back and presumed everyone else had it sussed and I was the uncontrolled freak.

Which is brings us more or less up to date.  I hope to follow this intro up with some more posts on how I've got to where I've got to now and my thoughts going forward.  Stick with it because I'm not sure what's happening next – hence my current blog subtitle of ‘To pump or not to pump!’