Wednesday 20 July 2011

Dropping in on Parliament

Luckily for me I was dropping in on Parliament a week or so before the whole 'phone-hacking scandal' furore which has gone global so things were a bit quieter when I was up there. But nevertheless I was once again invited by Lesley of INPUT fame, to attend the APPG (All Party Parliamentary Group) for Diabetes which happened to have a lovely meaty topic; the artificial pancreas (AP). I'm afraid this week has been a jam-packed one so this post should have been written a week ago but better late than never, here it is.

I met with Lesley at Waterloo station and as always it took us all of 6 or so seconds before we were both eyeball deep in diabetic rhetoric. Not that I'm complaining of course, seeing as I'm sure by now my work colleagues could calculate their own boluses (doses of fast acting insulin), know not to exercise with blood sugars below 4mmol or above 10mmol and are amazingly well-versed on the finer details of the difference between type 1 and 2 (let's just say 'everything').

I won't go through what an APPG is again, but here is a useful source if you would like to know more about what is going on 'behind the scenes' on the diabetes front, including APPGs. Or I gave a run down of the broad details in my last post about the APPG on Improving Patient Access to Medical Technology.

The actual APPG sadly wasn't nearly as well attended as the newly formed Medical Technology one, but really it was all together a different experience. For starters, the true star of the show was 8 year old Theodore Collins, or 'Theo' as he boldly told us. He is one of the children (52 of them in total, if I remember correctly), currently taking part in one of the very first trials into the AP which is being funded by JDRF (the Juvenile Diabetes Research Foundation). Theo gave a fantastic presentation about the trials he has been involved in and described the benefits he felt the AP would bring him; including having to worry less during sport and not having to rely on his 'friend', Lucozade. But as wonderful as the presentation was, I think my favourite moment with young Theo was right at the very start of the APPG when I suspended my pump trying to ward off a very well-timed and contextually ironic low blood sugar. Lord Pumpington gave off his tell-tale triple beep with which all Medtronic customers are so familiar, telling me the pump was suspended, only for Theo's head to whip around and catch my eye. As we exchanged knowing glances it was clear - he was on a Medtronic too. "I'd know those beeps anywhere, Lady "his eyes somehow told me.

But moving on, we were also given a presentation by Sarah Johnstone of JDRF Policy and Communications fame, who gave a passionate description of how JDRF have so far put over £50 million into research focussing on the artificial pancreas and would continue to strive for access for all type 1s to insulin pumps. This was an issue which Lesley had gone into the session with on the tip of her tongue, because - as she put so well - if you don't qualify for a pump, surely the artificial pancreas will be completely out of reach. A contentious issue it may be, but Lesley is quite right that all the technology in the world is a fine thing, but if there are people out there who don't fit the NICE bill then that technology will sit on the shelf, only accessed by those with the [bad] numbers or those with the cash.

But perhaps the most interesting talk was given by Dr Daniela Elleri, one of the researchers working on the JDRF AP project. In its fourth year, the results speak for themselves and certainly the overnight periods are showing how vastly improved overnight control is when the technology of the pump, along with the technology of CGM (Continuous Glucose Monitoring) is combined with the technology of the AP. It also described how rather than trying to create some super-system, the project is incorporating already commercially available products such as our well-known friends the Animas Pump and the Dexcom sensors. It will be interesting to see how that side of things goes, as it would just seem to me that we could end up heading down the route of having a 'sponsored system' involving different charities backing different products which aren't available unless you are loaded. I can imagine it now, "Buy your Dex-Mas Artificial Pancreas, only £500 per month to fund - sponsored by JDRF"! Hmmm.

Anyway, cynicism put aside it was very interesting to hear how far along (or actually, how early on!) the studies really are. It showed pictures of children wearing pumps, with CGM attached and mini laptops in reach - poised to adjust the basal levels on the pump at any minute, according to what the CGM dictates. It was clear that the AP itself is still in the very early crude stages and isn't at present even comprised of one single 'unit', but instead makes those in the trial look a little more like a teenager at a computer gaming seminar; happy, but lost amongs the wires, controllers and computers. But the fact that it is being tested on people already is still - I feel - a reassuring indicator that this will hit mainstream treatment one day. I have yet to meet someone who has a background knowledge of or involvement with the AP who hasn't seen it as the biggest development in diabetes in the last 50 years.

It's almost as exciting as the time we moved on from pig insulin. I know. Goose-bumps ay! :)

Finally we had some time to ask questions and discuss a few issues. We drew to a close and Lesley and I went for the post-APPG cup of coffee (now a ritual in itself) and to discuss the session.

After much to-ing and fro-ing and putting the world to rights, we bid each other farewell and went our separate ways. And as I boarded my train and sat myself down, I recognised that feeling creeping in; hope.

Keep watching people, this will happen.

Thursday 7 July 2011

What's the HcA1c Secret?

I've been a type 1 diabetic now (insulin dependent) for almost 25 years now. In that time I have learnt how to carbohydrate count, how to calculate insulin doses, how to change a cannula and fill an insulin pump reservoir. I've learnt a whole diabetic language consisting of words like pre-prandial (before a meal), post-prandial (obvious, really), nephropathy (kidney damage) and retinopathy (eye damage). I've learnt that fruit isn't always good for you and that sometimes even with all the best efforts in the world, blood sugars will just seem to throw the most enormous hissy fit right about the time I have a 'colourful language' moment.

But all in all I consider myself a 'good' diabetic (as opposed to an evil one I suppose) and I spend an inordinate amount of time each day fixated on adjusting this, weighing that and calculating the other. But despite my best and most dedicated efforts, I have never in my living memory achieved an HbA1c of 7%. An HbA1c (so as not to get all technical) is a magic number that us diabetics have to aim towards and measures the amount of Haemoglobin being carried around the body by the red blood cells. Above 7 = bad. Below 7 = good. 6.5 = Mother Teresa.

Well that is a lot easier said than done seeing as normal life as a diabetic can involve more peaks and troughs than a day at Alton Towers and sometimes all before we get out of bed.

So what can equip us to do this? Well, 18 months ago I was given the first tool I could use; the insulin pump. Thanks to the unique ability of the pump to supply insulin tailored to my exact needs - as much as can be - it was the first component which gave me the opportunity to try and lower my A1c. At the time I was 9.6% and heading for complication city (that's actually a place you know, just north of Bullshitville and south west of Scaring People Shit-less), but thanks the the pump, after 6 months and with no changes other than the pump itself, this dropped to 8.2%.

Good job, pumpy!

The next step was the revelation of the low-carb diet and exercise combination which I discovered towards the end of last year, after reading several blogs, online resources and books all about how eating low carb (and I mean LOW!) and exercising regularly in a certain way had helped people to achieve near normal BG results. After a bit of experimenting, this chick was added to the list of converts and low-carb advocates. I don't claim to manage it all the time. Not in the least because sometimes a big plate of carbs can be just as therapeutic as the perfect blood sugar. But I try where possible to pick low carb options and where we are eating a meal with things like pasta and potatoes, I try to have the tiniest amount possible. This helped me get it to 7.9%

But the final (and unfortunately most problematic component) was the fact that two months ago I was invited to take part in a trial of the new Medtronic Enlite sensors and within just three weeks of wearing the sensors, my average blood sugar had dropped from 8.6mmol to 7.4mmol, and my control had tightened immensely. So when my blood was taken for the HbA1c this week, I had been lucky enough to be rocking the three things I think are key to a good HbA1c.

This time, it was 7.1%. Marvellous.

Unfortunatley I no longer have the CGM to help me on my journey, but once the little fan-fare had finished playing in my head and my Oscar -style speech was over, it still sank in that it IS possible to reach that number.

I just have to prove it's possible without CGM now!

Monday 4 July 2011

HbA1-Freak Out.

Twice a year us pancreatically defective folk have to provide a sample of our finest blood cells in order to have a full MOT and service done. In fact they take 3 full tubes of my finest specimen and if you saw the reaction I give, you would know that I am very protective of those three little tubes (they don't feel little, that's for sure). But I do get a little reassurance from these. Not from the results actually, because if you are anything like me you have to all but bribe your GP/Specialist/Nurse into explaining exactly what things like 'electrolytes' and 'triglycerides' are. The result I don't actually get too involved in. If they call me in for a chat after, I need to change something. If not, I'm good. That may sound a cop out, but when you analyse numbers all day, knowing exactly how many triglycrides you have per milligram or decilitre - and what that actually means - seems unnecessary.

The reassurance I get is from the fact that whoever is unfortunate enough to be waiting to give their special donation to the blood collectors, will probably chuckle to themselves at regular intervals for the rest of the day about that funny young lady at the clinic (yes, young!).

From start to finish my visit at the phlebotomy clinic goes something like this:

(Waiting room) Take ticket, realise I have to wait. Fiddle, huff, puff, fiddle, squirm, stand, make funny noise, bargain with Jamie to let me do it 'next week' through using washing up/housework/sexual favours/good old fashioned begging. Touch arm, freak out about having just touched arm, squirm, huff, eye sight goes a little funny, think I might faint, come back round, bargain again, look at strangers with sort of desperate look on face as though I might offer to do all their washing up for the rest of the week if I am allowed to leave. Squirm, huff, puff.

I go on like this for however long I am in there for with increasing intensity until I am finally called into the phlebomotist's room. Avoiding looking at ANYONE who is mid blood test I head straight for the person who appears free and launch straight into a 'I'm afraid I am a bit of a wimp when it comes to this" and explain my bad experiences as a kid speech, all the while squirming and breathing slightly 'horror-flickishly'. I hope that my bad memories will appeal the the nurses good nature, because frankly I NEED them to be nice to me! They have a massive needle and the ability to jab! It could be Hitler taking my blood and I would still be nice to them at this point.

Throughout my blood test career I have always considered myself the worst patient you would want on a Monday morning and have taken pleasure in the notion that at least everyone else is likely to have a bit of a laugh at my expense because I make such a fuss (but not in a making everyone else scared way).

Well that was until today. Today I met the lady you would never want to have to give a blood test too!

In the middle of my squirming and bargaining attempts in the waiting room, from the phlebotomist's office there came some of the most world class snot-sobbing, shrieking and desperate crying I have ever heard. Everyone in the waiting room starts looking at each other as though they must be using a sword to get the blood sample, but all the while laughing amongst themselves. Problem is for someone who already hates this process, hearing someone 2 goes in front of you having such a freak out makes me all the more likely to pass out. At this point I am seriously considering just running away. Plain old drop my form and run for the door. Problem is as much as I hate this, it needs to be done.

Luckily for me the lady who took my blood was very sympathetic. She wasn't Hitler, there was no sword involved and she even gave me two biscuits afterwards. Lovely.

It's just a shame it never gets easier.