Monday, 20 December 2010

Dear Santa...

I know that you are extremely busy at this time of year, what with it almost being time for you to set off with all those present in tow, weighing down your sled and making your Reindeer huff and puff. How you manage it all in one night has always been beyond me. With 6 billion homes to visit, I imagine you aren’t really too keen on later entries on the request front.

I know that at this time of year it becomes pretty commonplace for everyone to start reeling off their Christmas wishes as if you have all the time in the world. I know you have a sled to oil, a workforce to motivate and presents to wrap. I know you have reindeer to exercise and maps to plot. I bet there are a few more people in the world than last year, so I expect you are mighty busy.

I know that people often contact you about things which are a little out of your remit, like Jamie, who I know has already sent his letter to you asking for a Porsche. Any colour but yellow, as I am frequently reminded. One of these days you could slip a Matchbox version into his stocking, just to keep him quiet.

I know that children are the most important people at Christmas, and that you have to get busy acquiring all those snazzy new electronic toys. I remember the Buzz Lightyear saga, back in the 90s, when parents trampled one another to get the figurines in Toys’r’Us because apparently you had run out. I was too old to care for it really, already in my teens and more concerned with make up, shoes and the Backstreet Boys (yes, I know, but I was 13!), but I still remember the news, and remember thinking how crazy it was that anyone could want something that much. I’m not sure what it is this year, but I bet it is a damn sight more technical than Buzz was!

The thing is, what I want won’t take much to wrap. It doesn’t need bows or pretty paper. I don’t want anything more than the next person, in fact, it is a lot less than a Porsche! Mine won’t breed jealousy, envy or greed. Mine is simple, but it would make my year.

Dear Santa,

I, would like a day off.

Today I woke up high again. I left my breakfast because I wanted to see my sugars come down.

I waited a long time.

Today I did 9 blood tests, most of which were out of range.

Today, I had my third eye appointment of the year, where the drops they put in my eyes make them sting, lose my sight and dappled red.

Today I had every sugar from 6-15.

Today, I felt tired because there is no such thing as a day off.

All I want Santa, is to be able to wake up, brush my matt of a hair into some sort of style, eat my breakfast and get on with my day.

All I want Santa, is to be able to eat a meal - any meal – without first testing my sugars, doing around 3 calculations and taking yet more insulin. Without having to test them again two hours later, no doubt disappointed with what I see.

I would love not to have to worry today. Not to worry about the blood sugars. Not to worry about what cost that mince pie will have, both today and in ten years.

Not to worry full stop.

If I could have one wish from Santa, it would be this. One day off.

Are you listening, and did you get my letter?

Friday, 10 December 2010

Trial by HbA1c

Today was D-Day; it was HbA1c day. Some people seem to be able to sail through A1c blood tests with very little bother at all. They simply don't seem to mind blood tests, and know that the whole process of having blood taken is an integral part of managing diabetes. The results of the tests tell us diabetics and our health care providers, what the status quo is regarding our recent management. If the results are good, we have been able to keep the problems at bay for a little longer. If they are bad, we can take action.
I am not one of those people.
Don't get me wrong, the latter part of that paragraph is all very clear to me. The only reason I continue to put myself through the process of having tubes and tubes of blood taken, is because I KNOW they are the best way of knowing that everything is still OK.
However, to anyone who didn't know better, Anna at the clinic, waiting for her blood test to be done, is actually crack addict gagging for a fix.
I'll paint you a picture; There are about ten people there waiting patiently for their number to come up on the screen. No-one is causing a fuss, no-one is making a scene. Everyone is just there carrying out the wishes of their Doctor - getting their blood drawn . There is however, a girl sat in the corner, wearing baggy clothes (they make her feel more comfortable) and looking like she might throw up everywhere. She is shaking, twitching, sweating a little and looking as though at any minute she may bolt for the door.
This, is me. I have blogged in the past about the way in which I find blood tests thoroughly traumatic. And not just the result, which in the past has hardly been a reason for celebrating but actually, because the whole process makes me want to hurl.
The beauty of being a human is that we have fantastic foresight. We have this brilliant way of being able to predict the outcome if we make one, or even a series, of bad decisions. Granted, animals have a certain degree of foresight, seeing as you can train a dog not to chew the table and my cats have certainly learnt that as fun as it is, scrambling up the curtains, claws and all, will earn them a time out in the other room (their equivalent of the naughty step).
For this reason, we lock out car doors at night, we try to exercise and eat right, we don't shout abuse at our bosses, we don't buy £50,000 cars when we work in a fast food joint and we work late when we have a meeting the next day and need to get our papers straight. We make decisions every day based on our experiences and we use our gift of foresight to do this. For this reason I remain in line at clinic, twitching and shaking, just so that I can get those results, be they good or bad.
But as good as we are, we aren't perfect at realising what will happen in the future. If we were, diabetics would never eat sweets. They wouldn't drink, smoke or skip insulin shots as teenagers. They would do everything by the book. If we were able to use our foresight perfectly, no diabetic would ever get complications. We know that diabetics are ALL at risk of getting one of the many devastating complications that can eventually manifest themselves. And we know that any blood sugars above 'normal' range will cause that damage whether it is just the initial damage, or adding to what is already there. But it can be really hard to imagine what life would be like with those complications, whether or not we know someone who has one and whether or not we read the many books and Internet articles depicting life after the worst has happened.
That is why, when I think about a cure, it would be the lack of blood tests that would be one of the biggest benefits of no longer having this disease. Not for one second do I think that a blood test even compares to the real complications of diabetes. But the fact is, I have NO way of knowing how I would cope with a complication. I can't imagine the feeling if I was diagnosed with a further condition brought on by this disease. I can't say how I would manage day to day. I can't imagine what something like neuropathy feels like. I continue to respect the complications, which is why I wear a pump, why I exercise, why I try to be careful, and why I strive on a daily basis to achieve better control.
But I do know what blood tests 3 times a year feels like. I know how it feels to never win the battle against the test and wuss out in the waiting room. I know what it's like to need to take the day off because I will sporadically try to pass out during the rest of the day, because now and then I make the silly mistake of thinking about the experience I had earlier on.
Because of this and the fact that I have been lucky enough to avoid any complications up until now, the full blood count, HbA1C, triglyceride, cholesterol, thyroid, electrolyte, liver, kidney and creatinine blood tests will be the thing I would most like to wave goodbye to, should there ever be a cure.
Probably seems strange to some, but for me, the a1c is worse than the wearing of a computer, the daily finger blood tests and even the poor sugar days. For some reason, it just is.
What would you cheerily wave goodbye to, on the day this disease got the boot?

Saturday, 4 December 2010

Omnipod Vs Medtronic

Looking at the title as a non-pumping diabetic, you would be forgiven for thinking I am going to blog about the next big cinema blockbuster (well, maybe more like minimal-budget-straight-to-DVD horror flick), but in fact this post is about my recent attempt to look into the Omnipod insulin pump.

In November, I received my letter from my specialist to advise me that I have been successful in passing my insulin pump trial and will be continuing with this method of treatment.

I'm not sure there is a word in the English language to describe the feeling - but elated, ecstatic, thrilled and thankful are some of the words that come close. All the hard work has paid off and Maggie (my pump) and I will continue to be partners in crime for the indefinite future, something I [and all my nerve endings] are very pleased about.

Appart from the obvious benefits of completing the pump trial (improved BGs, flexibility, reduced complications, reduction in needle jabs et. cetera et. cetera) the other benefit of getting to this point and finally passing the trial is that I now have a little choice about the kind of pump I can have. I have already blogged enthusiastically about the first day of the trial, when I had attended the hospital to plug into 'The Matrix' for the first time, and saw the Medtronic Paradigm VEO sitting in front of me. I had been aware that my hospital in the past had always used the Accu Chek Spirit, which looks a little like this:

Now generally, most insulin pumps look roughly the same, but I really wasn't taken with this one. I had seen it and held it once in person and for some reason felt it was somewhat 'clunky'. Perhaps this was because I was still unsure about pumps in general and this was the first I had seen up close. But also because I had also done a lot of research into different pumps and had always come back to one; The Medtronic Paradigm VEO. I had looked over it again and again, and was completely sold on the fact that one day, when CGM was more affordable, I would have a pump which was ready and waiting to allow me to join the party. Unfortunately I didn't have the most smooth of rides when I did try the CGM, but it remains an extremely useful tool in managing diabetes, and I stand by my claim that it is something every diabetic should have the option of using - let's hope the NHS catch up! Thankfully, I have found the pump itself thoroughly wonderful, apart from the odd kinked cannula frustration, which frankly seem to be part and parcel of using any Teflon cannula as opposed to steel ones. But the pump itself has been like a best friend to me.

But perhaps the most important thing about my pump, is the people and service behind it. The aftercare, if you will. From the moment I joined the Medtronic clan, I have known nothing but complete support and care from the company and the people behind it. I have had a number of mishaps with the pump, including one which led me to phone Medtronic in America on a Sunday afternoon, while shaken and a little concerned. The customer service I received that day was second to none, so much so that I took the time to send an email to Medtronic telling them just how impressed and grateful I was for their compassion and outstanding service. Not only did I accidentally hang up on the customer service chappy on that Sunday afternoon, thanks to the mild panic going on in my head, but after getting straight back through to another person, it turned out that the original customer service agent had been trying to call me back (from America no less) for the 20 minutes I was on the phone to his replacement.

Medtronic have also sent me skins and a remote control at my request (despite the fact that the only equipment I actually need, is already right here on my hip - these are just for play), and have also sent me a reservoir after I lost my head and forgot to get some spares from my DSN.

I could not sing their praises more highly, and suspect I always will.

But despite the fact that I have felt very safe in the hands of the folk at Medtronic, a new pump recently arrived on our shores, and as I have now passed my trial and have the option to consider another pump before making a choice which will remain with me for the next three years, I wanted to check this pump out.

It is the worlds first tubing free insulin pump and goes by the name of the Omnipod.

Rather than having a 43 inch tube which leads from the pump to the cannula, everything you need to deliver the insulin is contained within that little white 'pod' (on the right hand side). The PDM (Personal Diabetes Manager, on the left) is used to wirelessly send commands to the pod, which then delivers the insulin as and when you ask it to.

This is the diabetic equivalent of Topshop giving away all their most expensive and stylish lines, with a cherry on top. It couldn't be more exciting.

So in August, when I knew my pump trial result was looking good and that the option of a new pump may be on the horizon, I contacted my DSN and asked about perhaps trialling the Omnipod now that the option was there. After hearing that she would consider it providing the cost was not drastically different, I contacted Omnipod. Almost immediately I heard back from their customer service team, to advise that my details had been passed to their rep, and that they would contact me soon. A good sign.

Sure enough, about 2 or 3 days later, I heard back from their rep, who advised that I could have a trial which would be done with my DSN involved.

All was looking good. However, since this time, I have sent off about 4 or 5 unanswered emails, and have been left very concerned about the level of customer service I have received. To this day I have never once been let down by Medtronic, in fact quite the opposite, they have time and time again surpassed my expectations, and have proven themselves invaluable in making the transition onto an insulin pump, which in all honesty wasn't the easiest thing I have ever done and took a lot of adjusting.

The problem is, due to the fact that it is now December, and my rep appears to be very unconcerned that a potential customer (sale) is ready and waiting to join their club, I have been left very concerned about what aftercare Omnipod can offer. What if the pump stops working? What if their cannulas kink? What if it is 3am, I have ketones and am panicking again? Where will my lifeline be then?

I now have to reach the decision of which pump I want by the 25th January 2011, which will be one whole year since I joined the 'pumping crew'.

As a result, I have had to reach the decision that I do not have enough confidence in Omnipod to make that switch. Tubes or no tubes, what underpins any insulin pump lifestyle, is the option of having help at the end of a phone should anything go wrong. And when it comes to it, the insulin pump is nothing more than a computer. It can succeed just as often as a computer and sadly can also fail, just as any computer.

The fact that Medtronic are helpful, contactable 24 hours a day, knowledgeable and apparently prepared to go to many lengths for the benefit of the customer is infinitely more important than how the pump looks, whether or not it has tubing and whether or not it is fashionable.

I would LOVE to have a pump with no tubing, but not at the cost of everything else which makes the pump a success.

I truly hope that people in other parts of the country have had more success with them, and that perhaps my experience was more to do with my local rep, than with the general customer service. For children and unsure adults, the thought of no tubing and what appears to be a small, streamlined and 'sexy' pump may be just what they need to make that swap - something which will save their life, literally. Unfortunately, I remain unconvinced. I wrote to Omnipod advising them that I was sad about the fact I had to reach the decision not to change to their system due to my concerns about their service. Well guess what, I still haven't had a reply - even to that.

I had a good feeling about Medtronic when I first looked into the pump, and on the day I found out I was getting one ... And when I received my pump skins through the post ... And when I got my remote control ... And on the day all my cannulas were kinking ... And when I sent my email to thank them for their service.

For now at least, my faith (and funding!) remains with Medtronic. I don't have anything against Omnipod per se, and perhaps when my warranty on Maggie is up (generally pump users change to a new pump whenever the warranty has expired, to ensure if anything goes wrong they will still have excellent after care), I will try contacting them again, just to see what/if anything has changed. But for now, I remain confident in the knowledge that I am in good hands with Medtronic and that swapping to a 'sexier' pump, could have been the beginning of a very long four years.

Maggie the Medtronic, it's you and me from here on baby.