Tuesday, 13 December 2011

Don't admit defeat, just change your attack

I've never been one for bottles of pills and potions to overcome illness. I don't believe in cough medicine. If I have a headache I drink a glass of water first and reach for the paracetamol later. When I do buy medicines, they often expire before I got a chance to develop that illness for a second time. I believe as much as I can in natural remedies. That being said, I don't reject drugs all together. That probably seems pretty obvious seeing as to survive I rely entirely on a synthetic vesion of the hormone insulin, which I pump into my own body through necessity more than choice, 24/7. I know that without it, I would only have a couple of days to live. But where ever possible, I like to avoid being on any drugs or medications and try to do what I can myself.

So when I was told at the beginning of this year that my cholesterol was just a touch higher than the doctors would like it and recognising that as someone who has put on a few pounds in the years since University, I decided to try and get that level down myself. I fully recognise that I do not have a genetic predisposition to have high cholesterol. I never had it before and in 25 years of diabetes, I was never at risk of it until I got a little *cough* 'cuddlier'. So when being threatened with taking a pill daily for the rest of my life, my first line of attack had to be my diet and exercise. You see I'd love to say I put on weight because I do loads of exercise and am in fact the size of a small rugby player because of my sheer muscle, but the truth is that while I try to embrace the natural natural, I also love Subway. And MacDonald's breakfast. And chocolate, the processed kind. And Subway. And cheese. And did I mention Subway?

So over the last 10 months I lost about 20 lbs, started doing body combat 1-2 times a week, cycling to work and doing cardio DVDs at home. I have tried to change my diet and generally follow a lower carb way of life (although I disagree very vehemently with ultra low carb). I do still have brown rice, potatoes now and then and the occasional slice of chilli bread (omnomnom). Low and behold as my weight and diet improved, so did my cholesterol. Markedly in fact. And I figured I was finally in the clear from the threat of high cholesterol.

That was until my most recent eye exam.

As I sat with the eye doctor I gave her a little run down of my last results as usual; HbA1c of 7%, BP is 90/120, cholesterol is a little high but I am addressing this etc etc.

As she navigated her way around my retina with her painfully bright light which we are supposed to look at, sitting at a distance which in any other situation would be totally inappropriate and bordering on lapdancing, I couldn't help asking her how things were going.

She commented that there was a lot more going on in my right eye than my left, which I was fully expecting. I have had background retinopathy for some time, which is the weakening and dying of veins and capillaries at the back of the eye caused by high blood sugars, which leads to tiny breaks and bleeds (haemorraghes) on the retina. When new veins attempt to grow in order to counteract this, they too will break and bleed. They can eventually lead to blindess but before it does there is huge amounts you can do to stop or at the very least, seriosuly delay it. With the pump and some major work I had managed to get this to a plateau. Things were getting all that much better, but they also weren't getting worse. So imagine my surprise when I asked if there was anything I should be aware of or concerned about:

"Nope. There is evidence of high cholesterol but I would expect that from what you have said."

Ermmm, what? Cholesterol damage in my eyes?? When was that part of the deal?

Call me ignorant, but little did I know that cholesterol has a significant impact on the eyes. I thought the high blood sugars and dying vessels was it. But if that wasn't enough, it turns out that cholesterol plays an enormous role here too. Perhaps this should be obvious seeing as cholesterol causes the blockages to veins and arteries and predominantly sight problems experienced by diabetics are related to vein/capillary deterioration/blockage in the eyes. But I had never actually been faced with this explanantion. It turns out that various veins in my eyes are begining to show 'cotton wool' like evidence that the areas where the veins and capillaries join, are starting to struggle. A good article about it is here, so read if you want to know more about it.

As I do with all things, I go into a state of panic for the first minute. I usually stare blankly at the person delivering the news to me and then start to try and piece together how to tackle it. I couldn't walk away without getting the doctor's thoughts on the Simvastatin, which has been available to me but always refused, for years. I told her all about what I was doing to lower my cholesterol, but asked her for a frank opinion about the pills.

I'm better when things are in plain English.

"Well, a two-pronged approach will always be the best option. Continue with the diet and exercise but in the meantime, why not take the Simvastatin as well? The evidence of high cholesterol in your eyes isn't permanent and can still heal. If you attack this from both angles you will by far have the best chance of stopping this."

"So could I come off them if I manage to get the cholesterol down to a very low level?"


That was the decider. As much as I would love to address the cholesterol issue from every angle other than pills, I am not taking chances with my sight for the sake of pride or wanting to do things 'the natural way'. 'Natural' is not walking with a stick or needing the assistance of a dog. My sight is just too precious to me.

So I decided that rather than view this as a sign of my failure, it is a sign of my determination. After 25 years I have managed to keep all complications at bay. Even the background retinopathy is at a 'young' stage and can still be stopped.

Any war is won by the clever deployment of troops. So I'm sending in some from the North and some from the South. One day I hope to come off the Simvastatin and allow my cholesterol to return to its natural tree hugging status but until then, exercise and diet are my sword and Simvastatin is my shield.

Three weeks in and finally at peace with it.

Tuesday, 6 December 2011

How quickly we adapt

Have you seen that John Lewis Christmas advert on TV at the moment, where the doe-eyed little boy is counting the minutes to Christmas, apparently desperate to open his presents, only for us to discover that truly he just wants to give his own lovingly wrapped, crinkled and adorably wonky present to his parents?

Well, in a weird, completely different and only very tenuously related way, it reminds of when I first went on a pump. More specifically, when I first had to change a cannula. Why? Because when I first attached for the first time in January 2010, I was acutely aware of everything about the pump. The pump itself, heavy feeling and enormous. The tubing, which I tucked away as neatly as possible and found myself being somehow telepathically aware of its positioning at all times and most of all, I was aware of the cannula.

"Where is it?"

"Did I just knock it?"

"Has it come out?"

"Should it feel this, well, invisible?"

I knew the exact hour and minute when it needed changing; three days after first putting it on. Of course I couldn't last the full 72 hours,what with me having the patience of a chocoholic in a Lindor factory and vaguely recall removing it at about 2.5 days.

What a difference two years make. Nowadays I have the once clumsy and fiddly process down to about 10.5 seconds flat, need to give it no second thought and funnily enough, if I don't set my alarm on my phone to tell me when to change, can easily go a day or two longer before my immune system and blood glucose tells me it has outstayed its welcome.

I guess it shows how easily we adapt to new situations and also how we also get excited about the silly little things. I suppose it was also the first 'big' challenge I had as a pumper. Could I change the cannula? Would I do it right? Would it hurt? I still remember the questions. The biggest one at the time still being, will this work for me? After all, without successful cannula changes, the pump was a no-go track. Every time I see that advert I think of my own excitement, anticipation and wonky attempt at changing those first few cannulas.

Turns out it was one of the most simple aspects of being on a pump and I had nothing to worry about.

Friday, 2 December 2011

Fifth Annual Insulin Pumps Association conference

Last week (apologies for the delay) I was invited by INPUT to attend the Fifth Annual Insulin Pumps Association conference in Manchester. Never one to miss the opportunity to jump face-first into events like this, I gladly accepted and before I knew it was boarding a train to Manchester and syncronising hypos with Lesley of INPUT fame.

On arrival and another spookily timed skyrocket out of (ahem) 'optimal range' on both our parts, Lesley and I were having dinner with some of the many other attendees at the conference including several bods from Roche and some healthcare professionals from a number of different hospitals around the country. It wasn't long before one of the sales managers from Roche had spotted that I was on a Medtronic pump and had begun their sales pitch at light speed. Frankly the Combo pump and blood glucose meter did impress, seeing as I was rifling through my bra for most of the duration of the meal to adjust insulin doses as each delicious (and very non-low carb) course came out, while all those with the combo remote controls were testing and bolusing (taking a shot of insulin for their meal) with ease. Truthfully I think the next pump for me will be a tubing free one seeing as the tubing is, for me, the biggest drawback of pumps in general. But it did show me that while my beloved Paradigm VEO was top of the market (again, just in my opinion) when I got it two years ago (is it really two years already??), it has been somewhat overshadowed by the newer sexier pumps on the market in recent years. Funny how quickly things move nowadays isn't it? Our diabetic predecessors must have been using metal and glass syringes for the 50 year mark before hypodermics came in, and now within 2 years the sexy new pump you once sported is the equivalent of the cassette tape to the ipod or what the horse and cart is to the Porsche.

It was with an eager attitude that I met Lesley for a suprisingly low carb but tasty full English breakfast the next morning and with that the conference was under way.

The exhibitions room was as always packed with impressive stands. But this being the first pump specific conference I had attended I was keen to get stuck in, knowing full well that the newer model Omnipod would be on show and I was hoping, the Cellnovo as well. I'd heard rumours about the Animas display which can be seen at these events and true to form, the most eye-catching stand had to be theirs, with a fish tank fully equipment with water, lights, real fish, plants and yes that's right, their insulin pump (!) suspended mid-tank. Although most pumps posit the same level of waterproofness (fairly confident that isn't in the dictionary) Animas are one of the only (if not the only) pump provider who are happy to guarantee their pump when submerged in shallow water. Great waterproofity? Waterprooficiousness? What IS theword!

There were also displays from Medtronic, Adanced Therapeutics (the company who bring the Dana pump and Dexcom CGM to the shores of the UK), Omnipod and my personal holy grail, Cellnovo.

I had a great chance to have a talk with Gary from Omnipod, who went some way to reassuring me that the teething problems I had experienced when I first made enquiries about their system had now been ironed out, thanks to a multiplying workforce and a chance to get their feet under the British market table. The new pod is certainly smaller than the old one and a contender against the much smaller and sleeker Solo (don't get too excited, its not avaialble here yet) and Cellnovo (watch this space, VERY soon). In truth I still have my doubts about Omnipod but only based on the fact that Medtronic's customer service still is - as far as I am concerned - second to none. That being said, the mention of Medtronic brings me on nicely to the holy grail of the day, the Cellnovo.

For anyone concerned about customer service, one of the head honchos at Cellnovo used to be on the Medtronic team and not just any team at that. She started the whole blogger forum craze and was, from what I hear, absolutely a key player in getting Medtronic's customer service at the very high level it is, which has been continued and pushed forward by their Justin Gray. So for a 'new' company who are just about to release their pump in the imminent future, I have a lot of faith they will do well. This, brings me to their pump.

I have looked at the website god knows how many times, but had until this point never had an opportunity to see it. 'Miniscule' is probably the most fitting term, considering inside it there are hundreds of parts, computers, insulin resevoirs and so on and so forth, that allow it to do it's job. It is technically a patch pump as the pump itself sticks to the skin using a velcro attachemnt, but the tubing between the pump and cannula can be varied allowing you to continue to put it in a pocket if you wish. That may sound like it defeats the point, but I have come across suprisingly large amounts of people who say they would like the option of hiding the pump if they were wearing a slinky dress or tight fitting shirt. I don't share these needs, but completely understand the concern. With the Cellnovo, that is possible. It is also equipped with a smart-phone like handset which allows real time measuring of impact of activity on BGs, acts as the remote control for the pump and frankly for the growing numbers of young people on pumps, will be a fantastic selling point. Considering for the most part young people are already well familiar with touch screen phones and wireless handsets.

It was great to see the Cellnovo and their team in action and provided there are no horror stories about the pump failing or customer service nightmares, I imagine this will be the kind of pump I aim for next, albeit in two years time!

But the reason above all else that I was there,was to attend the conference and hear the speakers. The name of this year's conference was 'From Cradle to Grave' and the overall message of the conference was that insulin pumps can be used in ANY portion of society and at ANY stage of life. We were given case studies of people at end-stage renal failure who were on pumps, babies as young as days old who we were shown photos of (which to be honest I found a bit shocking due to the very tiny body connected to the pump, although the shock was more a feeling of sadness that someone so 'new' had to already live that life). We talked about the benefits for pregnant women, children and pretty much every group you could imagine.

I see a specialist team at Portsmouth who are without a doubt a proactive and insulin pump friendly team without whom I would not have been on the incredible journey I have travelled in the last two years, but without a doubt they had nothing on the speakers at these conferences. In Cambridge they purport to have 50% of all their Type 1 child patients on pumps, which without a doubt blows the NICE benchmark out of the water and deeply puts to shame all those PCTs who are yet to welcome and encourage pumps for their most at risk patients. The word 'proactive' doesn't even begin to cover how forward thinking many of these professionals were. When I arrived at Cellnovo, the chair of the conference was even stood next to me (although I didn't know who he was yet) asking questions about what the benefit to the patient, this pump would have. The benefit to the patient; have you ever heard such madness! In some areas they seem to disregard even the benefit to the PCT, let alone the humble patient!

We had a fantastic talk from Candice Ward from Cambridge University Hospital about where the artificial pancreas project was going and how CGM and pump technology could well be the key components which will significantly impact the lives of diabetics. Although it was clear she felt this was not quite an imminent success, she did intimate that it was on the horizon and creeping closer to us day-by-day. My brain has a little party whenever someone says that.

All in all it was a fantastic day and the messages I took away were:

  • Don't buy it if you are told your clinic doesn't do pumps, talk to INPUT.

  • No matter your age, demographic or favourite day of the week, ASK THE QUESTION OF YOUR SPECIALIST

  • No-one is too young, too old, or 'too far gone' (whatever that means) not to benefit from a pump

  • Cellnovo are the ones to watch

  • There ARE some highly proactive hospitals in the country, so ask about changing if your clinic fob you off.

All in all a brilliant day.