Scottish readers (and I know you exist) will be interested that Scotland’s SIGN Diabetes Management Guidelines Consultation is now taking place. Aileen at IPAG Scotland reminds us that any responses from the pancreatically challenged hoards need to be submitted before 16th October 2009.
In particular, the section on pump therapy (4.3.1) looks like it was written back in the Dark Ages of diabetes care and isn’t all that helpful to anyone in Scotland considering taking up pump therapy in the next ten years.
So have a look at the draft guidelines at http://www.sign.ac.uk/guidelines/drafts/diabetes.html (especially that thrilling 4.3.1 bit) and bash in a response giving them your views. Our beloved health authorities need our help and guidance to make sure they get it right!
Well, this diabetes and pregnancy lark is certainly interesting. It’s a bit like riding a rollercoaster without any safety barriers, it’s not a very smooth ride and you feel like any mistake might have catastrophic consequences. I’ve spent the first 3 months of pregnancy feeling thoroughly ill – huge amounts of nausea, a sprinkling of vomit and an inability to stay awake. But actually, that was all kind of nice, because it showed that hormones were at work and stuff was happening. The diabetes side of things is harder – it’s difficult to see that as a positive rather than a bloody inconvenience. But I’m trying. Here’s a summary of the first 12 weeks:
Week 4: slightly raised BG levels, which I put down to an impending period. I’m wrong.
Week 5: massive insulin resistance starts to kick in. Basal rates are up around 20%, and I’ve increased my insulin/carb ratio to 4g per unit at which point my pump says “Warning! That’s a valid ratio, but it’s quite high. Are you sure?” Given that even looking at food seems to send me high, I’m sure. I also reset my high alarm levels on my CGM so it goes off when I go over 8. This leads to a noisy few days, but it’s amazing how motivating it is to know that by injecting 30mins before food you can avoid that bloody alarm going off.
This week we also met every medical professional employed by the NHS in north west England. Or that’s certainly what it feels like. In one week I had my initial scan where we saw the vibrating blob that is our child for the first time. Then we went to the combined diabetes and pregnancy clinic, which is only combined in the sense of being in the same building at the same time. I saw the diabetes registrar, followed by the obstetrician, followed by the midwife, told all of them I don’t smoke (but was thinking of taking it up to relieve the stress of being asked that question 10 times a day), I take insulin for it and numerous other mundane facts that could have been easily stored on one single electronic patient record and saved everyone a lot of time. Then I had my booking appointment with the midwife and had the same conversations again. My HbA1c of 6.1% allowed me to negotiate that they please just leave me alone to get on with the diabetes stuff, which they kindly agreed.
Week 7: basal rates need to be increased a bit more. I’m getting the hang of injecting insulin by the bucket rather than by the unit for meals – it’s scary at first, but the pump helps a lot, without the bolus wizard there’s no way I’d believe I needed 3 units for an apple, but I do.
Week 8: things seem to be settling down a bit. Or perhaps I’ve just got the hang of dealing with the insulin resistance, who knows? Morning sickness is getting worse. The traditional remedy of having something to eat as soon as you wake up to help reduce the nausea is a nice idea, but when you’re playing at being a pancreas and growing a human, this leads to unacceptable BG spikes. So I take a more time consuming approach of wake up early, bolus for breakfast, wait 30 mins, eat breakfast, get up. Or I bolus, get up, accept I feel rough, wait as long as I can, eat.
Week 9: my life is a blur of nausea and vomit. The pump has been a godsend in allowing me to reduce basal rates to compensate for all those unabsorbed carbs that just reappeared. Or to bolus for half a meal upfront, and then the rest of it afterwards if I manage to keep it down. HbA1c down to 5.7% and I have a reasonably useful session with the dietician, wonders will never cease.
Week 10: I suddenly seem to be immune to sugar. A whole afternoon spent as a 3 despite a full litre of apple juice and other goodies indicates that insulin requirements seem to be dropping. A quick internet search shows this to be apparently normal, although it would also be normal for them to increase or stay the same. I’m starting to understand the definition of normal in pregnancy – if you’re not in agonising pain or loosing blood by the pint, any other symptoms seem to be classed as “to be expected”.
This week also saw an eye check and a quick visit to the DSN to make sure all is still on track. I have to admit, as someone who’s always been very independent when it comes to managing my diabetes, I’m feeling a bit smothered with all this extra care (I did write interference originally, but that seems harsh, they are trying to help, it’s just I’m so used to doing it without them, there isn’t much they can usefully do – I think I might be the diabetic equivalent of a hermit).
Week 11: I’m scared to say it, but I think I might be feeling a bit more human. I don’t feel quite as sick or quite as tired. Insulin requirements are down to about 10% higher than pre pregnancy rates, down from the previous 20%. Although total daily dose is down massively because I’m not eating very much due to the nausea.
Week 12: Hurrah, three months down, six to go and a healthy, wriggling baby on the scan plus another visit to the obstetrician and the diabetes team. I have to admit, I knew diabetes and pregnancy would be tough, I’ve heard it a hundred times, but I didn’t expect it to be this tough. The constant change combined with an incredible pressure not to mess it up don’t make for an easy ride. But it’s definitely doable, I’ll say that much!
It’s Autumn again and with it comes mists, mellow fruitfulness and the Lothian Diabetes Representative Group Patient & Carer’s Day. Held this Saturday 29 October 2011 at the Craiglockhart campus of Napier University in Edinburgh, the day is a smorgasbord of diabetes workshops and information. It’s usually quite interesting and only costs a tenner – which includes a reasonable lunch. You can just pitch up on the day or call LDRG on 0131 537 3257 for more information.
Do let me know if you’re going (email firstname.lastname@example.org) as I’m in two minds whether to go this year or not. If lots of readers are going, I’ll pop along. If not, I won’t and will spend my day playing Jonu Lomu Rugby Challenge on the Playstation instead.
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.
Comatose and rotting toes – the lighter side of insulin dependency