Wednesday, October 12, 2011

I wonder.....

....if different pumps, even of identical model and brand, deliver slightly different amounts of insulin when set at the same rates?

I'm not thinking differences in the range of entire units,
but maybe 0.01-0.02 unit differences in delivery when set at the same rates, due to minute differences in the mechanics.

The reason I even ask this question is that when I changed my infusion set first thing Monday morning this week, I also switched to the pump replacing my old, cracked one, and ever since I've had way more hypos than usual. Actually to the point where there are almost as many readings below 4.0 mmol/l as t
here are between 4.0 mmol/l (72 mg/dl) and 8.5 mmol/l (154 mg/dl) (my desired range). I've only had one high reading Tuesday morning after overtreating a pre-bed hypo in fear of more hypos after a day with no less than 10 readings of 2.1-3.3 mmol/l (38-60 mg/dl)!

I'd entered all my settings with my old pump in one hand and the new one in the other, reviewing them all multiple times to be sure that there were no discrepancies. The significant number of lows could of course be caused by something else and in this sense be totally coincidental, but I do find it strange that it's been like this since Monday. I'll await how the numbers behave after my next site change before I start tweaking basal rates and ins:carb-ratios. Until then I'm wondering about pumps, precision and performance - as well as how I avoid the next hypo :-)

Saturday, October 08, 2011

Replacement of an injured pump

A couple of months ago or so, I noticed that my pump had some cracks on each side of the reservoir window. I made a mental note to inquire about this the next time I saw my D-nurse, and then forgot about it again - well at least until the next time I saw a crazy number that called for inspection of tubing and reservoir for air bubbles :-)

The cracks are visible as thin white lines on the above pictures, my apologies for the poor quality of these, but close-up detail coverage isn't a force of our camera ;-) The cracks actually go all the way into the reservoir window, which on more than one occasion has made me question whether the reservoir was damaged, even if it was bright new and I hadn't noticed anything when filling it up.

Last week, I had an appointment with my D-nurse and showed her the cracks (in Denmark, insulin pumps as well as the supplies are paid for by the hospital treating you, hence I had to ask whether they would want to just replace it or if I should contact the pump company rep about it). Turned out, the decision and way of replacement would depend on whether the warranty period had expired or not - neither of us could recall exactly when I had gotten the now cracked pump.

A call to the company rep revealed that my current pump was still under warranty and so the company would send an identical replacement model (if the warranty period had expired, the hospital would have provided me with the newer Paradigm Veo). So now I have a replacement pump to set up before I retire the old one by direct mail to the company :-)

Tuesday, September 06, 2011

Tough diabetes gear

Last night I'd made the second site change of the day, this time nesting the set on my left thigh. In this process, I'd just binned the new tubing as I already had a new and insulin-filled tubing from the site change I did in the morning. Getting ready for bed, I heard a cracking sound when I pulled up my Pj bottoms. The source of said cracking sound is visible in the picture: One site of the tubing connection had snapped off.

I was suprised though, to find that the set still works - the tubing still sticks properly to the set and it's still possible to disconnect with no issues. I guess our diabetes gear is just as tough as we're stubborn in exchanging them :-)

Tuesday, August 02, 2011

It requires a lot of time and effort....

Denmark has very high tax rates - don't know if they're still the highest in the world or if the current government's tax stop has changed that. Our high taxes pay for free education, unless you choose private schools, free medical care (there are some exemptions here as well) and many other services for the benefit of the population.

Diabetes is no cheep acquaintance. Living in Denmark, and for the past few years also in Scotland, however has kept the costs of insulin, pump supplies and test materials low for me. In Scotland, NHS made sure that I got all my insulin and test supplies for free. In Denmark, the hospital I attend pays for my pump, its supplies (except personal pump accessories of course) and the CGM sensors that I may need to use. Insulin is not free of cost. It used to be, but years ago the rules were changed so that we've now got a central subsidy scheme where prescription only medication is subsidised by different rates. If your medicine costs less than 865 kr (approximately $160), you pay the full price, but above that you get 50% subsidised up to 1,410 kr (approximately $265), then 75% for costs between 1,410 kr and 3,045 kr (approximately $265-570), and for everything above the 3,045 kr mark you get 85% of the costs covered. There are different rates for children, but there is still something to pay. For every person, the subsidy scheme is reset 1 year after the first transaction. With the different meds I use, I generally spent most of each "subsidy year" at the higher subsidy rates, but I still find this system sub-optimal. Especially when I was a student, it meant a lot whether I had to pay 1,500 kr (approximately $282) or 15 kr (less than $3) for my medication. Now that I'm employed, I'm better able to cope with these greatly varying medical expenses. I know that this type of system is probably far easier to administrate so that most people can benefit from it, regardless how dependent they are of prescription only meds, but while the average monthly cost for me and other chronically ill people in general is affordable, it is a killer that in reality the costs are so unevenly distributed.

Coverage of test strips, lancets, meters, pen needles and syringes etc. have long been regulated, though mainly for type 2 PWDs, and the regulations have varied from council to council around the country. Most places, type 1 PWDs have access to unlimited amounts of test materials free of charge, while type 2 PWDs can only get a certain number (I believe it's some 150 test strips/month, but am not sure). Some councils have had restrictions on where you could get the supplies (i.e. pharmacy or private vendors), but for most parts you'd still have unlimited choice of products. This is now changing - at least where I happen to live. A couple of months ago I received a call from a representative of Danish diabetics asking me if I had any issues getting the test supplies and needles that I wanted now that my council had made a deal with a private vendor about the delivery of these products. I was rather uncomprehending as the council had used this vendor for years already, and I had never had any issues in the past. Mid-June, however, I received a message from the council that they had indeed made a new deal with said vendor, valid from March of this year and 3 years ahead, and that from now on only certain items would be covered. When I looked through the list of items now covered, I was surprised to see that most of the test strips that I use were no longer covered, especially as I had received my latest order in April and had not had to pay anything.

Annoyed and a bit confused I phoned the municipality services to inquire about this. I was told that the council had decided upon the selection of meters, test strips and lancets based on what was most often ordered. I was still puzzled by this answer, as I know that I order about 1,200 test strips every year for my main meter. These strips are included in the current deal, however only in 50 strips packages and not the 100 strips packages that I normally order. The response was that the pack size had been chosen to accomodate the restrictions on number of test strips covered for type 2 PWDs. Hmm, I guess I can live with this - twice the number of test strip cassettes will obviously take up more space in my closet, but it's the council who'll have to pay more for the higher number of 50 strips packs than for less 100 strips packs. What bothers me more is the fact that the selection of meters included in the deal is so narrow, and doesn't contain a single of the small, handy meeters. Most of the meters on the list are rather big/heavy, their main feature being big displays. Two of the meters that I use are on the list - my primary meter and a newer all-in-one solution that I find some use of when on the move where a single-hand operated device generating no waste is nice. The latter meter, however will probably never be my favourite due to its size and weight (it almost resembles a late 1980'es cell phone by size and weight). I'm of course pleased to find my primary meter on the list, but also greatly saddened to see that the FreeStyle Lite meter that I keep on my night stand for middle of the night/first thing in the morning tests is not. To my knowledge, the FreeStyle meters are the only ones (available to Danish PWDs) with a test strip light, which is why I heart this meter by my bed. I don't have to get up to turn on the light when I feel queasy from a middle of the night low, and most important, I can perform the test immediately instead of having to wait until my eyes have grown accustomed to the light, thus also making it much easier for me to go back to sleep afterwards. I don't even want to think about how little sleep I might get when having to deal with basal rate tests without a meter that I can use in the dark!

Poking my fingers up to 15 times a day (when I'm not wearing a sensor), I have carefully chosen the lancets that I prefer, not to mention the lancing device. None of them are on the current list. It's not that I need to renew my lancing device that often, and it isn't even that expensive, but it bothers me that I can now only choose from thicker lancets than the ones I currently use, unless I pay for them myself. My fingertips definitely tells me that there's a huge difference between using lancets of 30G (a selection of which, as well as some 28G, are available from the current list) and the 33G ones that I've used ever since they came out. In Scotland I had the "pleasure" of getting the same brand of lancets in 30G instead of 33G once, and it was a painful month to get through, leaving numerous black dots on my otherwise dot-free fingertips!

My phone call to the council assured me that of course I could continue to order the supplies I wanted, but that I would be billed for those not included in the current deal. While promising myself that I wouldn't leave this without a fight, I accepted this message. Today I had to order new supplies and as usual I logged in to the vendor's web shop for this. My order contained both supplies included in the deal, a lot that are not, and some glucose gel. The glucose gel and other non-medical consumables (food, books, batteries, etc.) are usually paid for during the check-out process, and I had been told that billing for the supplies not included in the deal would be handled separately, so I just proceeded to check-out to pay for my gel. However, I wasn't able to proceed, just got an error message that I couldn't continue while running "Navision Application Server". I didn't really know what to make of that so I had to call their customer service, and was then told that this was because my order contained items not covered by my council's deal with the vendor, and that the vendor just had not yet managed to set up the online ordering system to deal with such orders! Sheesh!!!! I then had to give my order by phone, and time and time again assure the customer service assistant that, yes, I knew that I'd have to pay for part of my order, and indeed I would do so as well as fight the council separately.

Now I need to gather information about the legislation on this area to see what my options for arguing the council's decision are. My current order will cost me 1,700 kr ($320), and will probably last me for a couple of months, so if I have to pay for everything in the future, I need to revise my budget to include these significant additional expenses. Don't get me wrong, I don't see it as an obligation for everybody else to pay for my medical expenses, but I do find it wrong that I'm charged such high taxes without then being able to choose what I want these tax money spend on. If I and other PWDs pose too high costs for the council then I'd rather the council limit the total amount they'd be willing to pay for my D supplies than having them try to force me to use "medieval" remedies. I know it's all about budget cuts, and that some will probably see me and other Danes as spoiled kids when we complain about these types of restrictions, but it's probably because they have never been used to a tax-financed health care system, or if they have, then have never had to make as much use of it as chronically ill people have. In a country with high tax rates nobody will make equal use of all the services paid for over the taxes, it's a joint club and those who have no need for medical aids may have a host of school-aged kids who get free education, or spend hours every day on the roads and bridges that are also partly or fully financed by taxes.

It does indeed require a significant amount of time and effort to cope with the challenges presented to us in consequence of diabetes - especially when we don't only have to fight our own body but also municipal decisions affecting our health.

Tuesday, July 26, 2011

What kept me too busy to blog......

As I mentioned in my post last week, I'd give you a review of what has kept me from blogging these past 3½ years, diabetes included. In short, I'd say that it has been a mixture of intensive work and everything around deciding to build the new house that we moved into in December last year. This has obviously all been seasoned with diabetes high and lows, but also with a final exam and subsequent unemployment on different levels, while trying to land either a job or funding for a research project that I want to carry out.

My leather-bound thesis - its contents kept me busy for the past 3½ years :-)

In my last post before my un-noticed hiatus, I wa
s about to leave for Glasgow as part of my postgraduate studies, and part of the preparation for that trip involved getting my hands on a CGM. I had hoped to update you on my experience with the Minimed Paradigm CGM, but that didn't happen in a timely manner, and while every experience is individual, I'll definitely spare you a lengthy review on the pros and cons of this system :-) In short though, I can say that I have used Minimed's system on and off ever since. I say on and off because while I'd were it continuously whenever in Glasgow for extended periods of time, I'd typically take a break from it when back in DK, only using it for special occations (e.g. stressful weeks around deadlines, conferences, moving, etc.). While it definitely does have its flaws, I wouldn't have wanted to be without it over these years and I'll likely continue to use it in the future when need be. Even though my current system cannot provide predictive alarms, it saved me numerous times in Glasgow. However, I've never found it to be good with sudden, drastic changes, and as these do occur - sometimes not even giving me enough time to actually feel them - I have experienced the impressive helpfulness of the Scots and their emergency services. These episodes were fortunately far in between, and only one had other consequences than my pride and D-self confidence getting knocked down:
My laptop screen didn't survive a "dance" with a lamppost durin
g a severe and sudden-onset hypo. My laptop was in my backpack and as I tried to stay on my feet with a BG well below 2 - the EMT arriving a few minutes later tested me at 1.2 (approximately 22 in American measures) - I stepped/fell backwards against a lamppost one or more times before settling on the sidewalk. It's never fun when lows affect anything but yourself, yet fortunately I came back up without being too hurt and the laptop screen could easily be replaced.

My postgraduate study obviously took a lot of my time over the past years. It's been super-exciting and super-tough at the same time
. While I was a registered PhD-student with a Glasgow-based university, my project had me spent just as much time at a Danish university, carrying out specialised analyses in the research group where I did my graduate work years before. A combination of lab-work, data analysis and extensive progress reports made for the typical work weeks to hover around 50-70 hours - certainly not healthy to anyone, let alone PWDs. I'm fairly convinced that all this work on top of all the "life" things that I had to fit into my schedule played a big role in the difficulties of managing D that would sometimes be manifested by hard crashes - of course almost always while asleep when I'm least likely to cooperate with Jimmi's suggestions or demands. Especially the last part of the project work was tough as I not only had to finish a lot of experiments and write up a monster thesis of 200-250 pages (I'd have preferred the Danish version of just 50-60 pages along with publications ;-)), but at the same time also had to take part in all the preparations for becoming house owners. There were a lot of issues around the handing over of our house, so we ended up getting it just a few days before I had to leave for Glasgow to hand in my thesis. I was beyond stressed at that time, but somehow managed to hand in my work, register as unemployed, pack down our old home and move into our new house in just about a week's time! This was, however, after several bad nighttime hypos on those nights where I actually made it to bed in stead of working on my thesis.

The beginning of 2011 was a combination of g
etting used to our new house, and the fact that its location generally meant longer bike rides for me (insulin adjustments required), as well as trying to sort out future work plans and possibilities. I had hoped to have at least the work part sorted rater soon as I was given the impression that we might find a bit of money to continue the collaboration from my postgraduate study, at least on a temporary basis. My supervisor in Glasgow and I had prepared project plans to further explore my work and findings. Both of us applied for money to support different versions of this work, but neither of us had any luck with our applications. When I was back in Glasgow for my viva in February, we managed to get things sorted for a temporary research position, though only part-time. My contract would have me mainly working in Denmark, and when it ended in June it was perfectly matched for yet another trip to Glasgow for graduation. When I returned from Glasgow, I started a new position in my old DK-lab. This is also a temporary position, but it's full time and hopefully it will provide me enough time to have at least one of my research manuscripts submitted for publication in order to increase my chances of attracting funding in the future :-)

My parents, me and my supervisor at the graduation reception

Graduates and their families filling the graduation garden

Wednesday, July 20, 2011


Those of you who used to read my blog will know that it has been very long since the last update here. It’s not that I’ve been cured from diabetes and therefore have had nothing D-related to write about. There have been plenty of blogable events involving diabetes in the past 3½ years, but there just hasn’t been time – or energy – from my side to consistently blog while working 40-70 hours a week on my postgraduate studies.

Last week, I read a blog post by Alexis over at I Run on Insulin. In essence, her entry was about how that little thing called “life” sometimes makes it difficult to do all you the things you want/need/have to do, online as well as in person, when there’s just 24 hours in a day. I had to comment on this, and that lead to a comment for me from another blogger that my updating my blog was missed. Even if just one or very few people think this, I’m very honoured by it :-)

So here I am with the first update since January 2008, but whether this entails a full revival of this blog, I dare not promise. If “life” allows, I’ll continue to try to check in here once in a while, maybe even try to do the required amount of dusting on my blog settings (layout, about me info, blog role etc.). I’ll also try to post again in the very near future to answer a couple of questions related to what I’ve been doing since 2008.

To end this, I’d like to repeat my statement in my comment for Alexis’ post last week: I know that the DOC is a very tolerant creature that will just appreciate those few times when I actually manage to contribute – and thank you all for that, and for being such an incredible source of advice and support when we need it!

Jimmi and I in front of the Famous Grouse at Glenturret Distillery in Scotland this summer