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by Alison

Difficult conversations

12 December, 2012 in check ups, Living with diabetes, Pregnancy

Whatever medical condition I have I like to get a good understanding of it. How does it work, why are things happening, what are the pros and cons of all the options for treating it? I’ve always seen this as critical to successful diabetes management.

Open conversations with medical professionals are key to this. I need to be able to ask questions about what’s happening and why. The answers help me understand what’s going on and inform my decisions.

Taking this approach to pregnancy is proving challenging. There seems to be a default setting that means any question you ask will be construed as you either having a positive desire to recklessly put your unborn/newborn baby in danger or for you being completely unable to cope with the concept that birth is a natural process and mightn’t go to plan. No, I’m just trying to understand what’s happening here. Calm down and listen to me.

I’ve got a few questions about the birth. You’re only 17 weeks, we’ll discuss that much later on. But it’s worrying me now, and I want to discuss it now so that I have time to think things through, do more research, discuss it with my husband etc. And if we’re going to be picky you asked me at 6 weeks if I intended to breastfeed, so chronologically, you’re ahead of me anyway. Well we can’t say what will happen at your birth, it’s too early. I know, but you can talk me through the decision making process you use so I can get a feel for what happens, when and why. Well yes, I suppose so. Thank you.

What’s your policy on inducing diabetics? You’ll be induced at 38 weeks. End of conversation. How helpful. So I asked someone else, this time slightly differently. What decision making process do you go through to decide when to induce? We look at the size of the baby, and also other signs such as blood pressure, protein in urine, scan results which may indicate the start of an issue with the placenta. Ah, that’s more helpful. Now I understand how you make the decision and why. And lo, no babies were harmed by us having that conversation.

What percentage of your inductions end up in an emergency caesarean? If baby is in danger you’ll have to have a caesarean. Oh, and here was me willing to let my own child die just to avoid a scar. I’m just trying to get a feel for how often that happens, so I can manage my own expectations of what could happen. Is it likely, is it rare? Well we only do them when necessary. I’m sure you do, I’m not accusing you of doing them as a hobby, I’m just trying to get some perspective on what’s going on. It really would be helpful if every question wasn’t treated like I’m deliberately trying to put my own child at risk.

How do we manage my diabetes during the birth? First answer – you’ll be put on a sliding scale drip. Ah, and you do that with everyone? Yes. So I asked a different Dr. Oh, you seem to know what you’re doing and you’re on the pump, if you want to manage it yourself you can and if you end up too high and can’t get it down, we’ll put you on a drip. That sounds more like it, thanks. It’s a shame I feel like I need to ask that question 3 more times to make sure I get a majority view.

Would you recommend expressing colostrum before the birth to give to the baby immediately after birth for its first feed? If baby’s blood sugar is low it’ll be given dextrose. OK, but what if it isn’t low and just needs food? Why are you opposed to giving it dextrose? I’m not, just that if it’s not hypo my understanding is that it’d be better off with a decent meal of breast milk, and the experience of others seems to show that sometimes the quickest way to get that in is by expressing it pre-birth and then feeding it to the baby. Thus reducing the risk of a subsequent baby hypo. Well, I suppose so, but if baby is hypo it’ll have to have dextrose. At which point did I say I wouldn’t let that happen? Calm down and listen to the question, I’m just trying to understand what’s going on here.

Can we please just have a normal, grown up conversations? You listen to my question and try to answer it, that kind of thing? I’ve learnt that midwives are much, much better at this than Drs. They’re now my first point of contact for any question, and then we refer up to the Dr if required. Why didn’t I start with this approach you may ask? Because at 17 weeks I said to the Dr “am I ever going to see a midwife again, I think they might be able to answer some of my questions?”. Apparently I should have been seeing one as part of every clinic visit, but somehow that wasn’t happening. It’s always worth asking the question. Sometimes you actually get a useful response.

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by Tim

Testing times

11 May, 2012 in check ups

A pair of eyes - not mine - yesterday

A pair of eyes - not mine - yesterday

It’s that time of the year again when I pop along to have my eyes tested by my local optometrist. I have them photographed once a year at my local hospital as part of my usual check up, but I also get my optometrist to check them because I value my eyesight (I really, really, really love watching “Britain’s Funniest Pets” on Channel Five and without my sight I wouldn’t be able to do this and – to be blunt – life wouldn’t be worth living if I couldn’t do that).

Anyway, I popped along to have them prodded, poked and generally given a good going over. Aside from some difficulties with getting the new (and very fancy) eye chart to work, you’ll all be pleased to hear everything went swimmingly. Apparently I have the eyes of a fighter pilot (I wonder if he wants them back?) and there is no sign of retinal damage at all.

Even better, my pupils were apparently nice and large so – for once – I didn’t have to have the Drops of Doom™ which make everything unbearably and painfully bright for several hours. Phew!

What was also quite interesting is that said local optometrist has invested a tonne of cash in new kit over the last year or so. So, for the first, time I had an ultrasound scan of my eyes done.

This very fancy bit of kit allows your common or garden trained optometrist to see not only the surface layers of the back of your eye but also the invisible underneath-bits too. The machine does this by taking a zillion ultrasound images per second and then patches them altogether in a coherent picture within a few seconds. Very impressive stuff.

For the first time we were able to peer inquisitively at the back bit of my eye in huge detail (I’m sure there is a technical term for “back bit of eye” but I’ll be damned if I know what it is). Again everything seemed to be hunky-dory – apparently it’s a wonderful system for seeing problems really, really early thus allowing preventative stuff to be done sooner. This can only be a Good Thing.

So there were a number of things I learnt from my visit. Firstly, my optometrist has far better kit and is a million times more thorough than my hospital in checking my eyes. Secondly, eye care in Scotland is supposed to be free but – just as I was leaving – my optometrist enticed me over to the sunglasses and – unable to resist her sales patter – I left sometime later with an admittedly very cool – but not cheap – pair of Ray Bans. So who says great eye care is free?

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by Alison

Dear Alison’s mind

22 February, 2012 in check ups, Living with diabetes

Dear Alison’s Mind

Today Alison went for her annual toe tickle. And she was feeling pretty grumpy. In the waiting room she was acting as a handy generational bridge between a 6 year old with a verruca and an 80 year old who needed help cutting his nails. This is not her ideal way to spend an afternoon. She self-importantly thinks that she had at least a hundred more interesting things she could have been doing. She feels that if the pancreas would pull its weight, she wouldn’t have to attend endless check-ups on various bits of her body.

Her extremities were proclaimed fit and healthy. She thanked the foot man – who she always feel sorry for because the thought of touching other people’s manky feet for a living makes her feel a bit sick – and shuffled off. She harrumphed her way home, muttering miserably about how much she resents having to spend time on this rubbish.

Alison’s mind, this is where you need to step up to the mark. She’s always said the one thing you can control about your diabetes is your attitude to it. And here she is, self-indulgently whinging to herself about nothing much.

You watched smugly when she gave her pancreas and her body a stern talking to in the past. Now it is your turn to be taken in hand. Everything that came out of that foot session was positive. She’s had diabetes for nearly 29 years, nothing has turned green or dropped off yet, she can still feel her feet and they don’t hurt. That’s a great achievement to have come so far with everything still working. She should be celebrating with champagne and a week in the sun somewhere. Or on a more practical level, at least taking the time to acknowledge the good stuff.

So Alison’s mind, I have a simple message for you. Stop bloody whinging and get back to recognising the positives.

Lots of love

Alison’s Mind (motivational division)

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by Alison

Eye spy a gap in my care

30 January, 2012 in check ups, Living with diabetes

A photo of an eye, if no one else will share them, ShootUp will

Last week I performed my civic duty of attending the hospital diabetic eye clinic in order to reduce the average age of attendees by at least 30 years. There was also a bit of faffing round with my eyes which left me gobsmacked at quite how disjointed diabetes care can be.

My local PCT have a gem of a diabetic eye screening programme. It’s really good. And I’ve told them so. I am harassed by letter once a year to make an appointment with my choice of local optician from an approved list to have my diabetic eye check. Because opticians are businesses they have appointments outside of working hours so I can toddle along for my annual blinding session without having to take time off work.

The optician then does my regular eye test and takes photos of the back of my eye to check for any exploding blood vessels. If no fireworks show up on the photo it is archived and I’m released back into the community for another year. Several years ago a minor eruption was spotted in the far reaches of my eye so I was packed off to the experts at the hospital for them to have a look.

The hospital said it was a tiny blip, nothing to worry about, it was to be expected as I’ve had diabetes since the dark ages and everyone was happy (well not quite, but let’s not go there now).

Last week I was back at the hospital because the latest photos again show some minor fireworks. Following the obligatory let me dilate your pupils until they look like black holes and then shine a very bright light into them until you cry session, the Dr again concluded there was nothing to worry about. Being a nightmare patient I had questions. Were these the same fireworks as last time that are just simmering quietly in the background. Or have they got worse. Or are they brand new explosions on top of the old ones? Would the nice Dr please take me through the images of my eyes over the last few years so I could understand whether overall things were getting better, worse or staying the same.

You’d have thought I’d asked her to eat a live frog whilst dancing naked through A&E. Apparently I don’t need this information, I just need to control my blood sugars. I also need to repair my tongue because I nearly bit it off before I managed a polite response that I have excellent diabetes control, thank you for your concern, but I’d like to understand the long term journey my eyes are taking. Rather than just have a one off meaningless proclamation that everything is fine when there is obviously something there.

Then came the bit that did, for a little while, leave me speechless. The hospital Dr isn’t able to see the images that have been taken by the screening programme. So on the one hand the PCT have more photos of my eyes than I have holiday photos, and on the other the hospital are making clinical decisions about my eyes without the benefit of seeing their full technicoloured history.

I came home and emailed the medical director at the hospital, asking him to have a little think about how we could make diabetic eye care in our area a little more integrated.

I also popped in to see my optician and asked if he could spare a minute to access the image database and talk me through my eye changes over the last 5 years. Following numerous caveats about how he’s not as clever as the hospital Drs and I’m not to take any of this as advice or he’ll be shot, the lovely man did just that. And so I now have the information I wanted in the first place. The initial fireworks have disappeared completely. There are some other fireworks, which are no worse than the original and don’t appear to be getting any worse year on year. Thank you. Now I understand the size and scale of the problem. And I agree, no treatment required. Which means I can focus on trying to introduce primary care to secondary care and getting them to share their toys and play nicely together.