Should I blame diabetes?

....probably not, but I can't say that the possibility hasn't crossed my mind.

We're currently in the fourth week of hospital admission with our daughter. The reason: Infantile spasms, a rare form of epilepsy (apparently there are only about 20 new cases per year in Denmark). We first noticed something not right a coupleof days after she'd had her 5-month vaccination. Her whole body would be shaking in cramps for 10-20 sec. after which she'd need a few seconds to return to her normal self. Our first contact with doctors and hospital had them concerned, but without any possibility to make a diagnosis because Amanda was perfectly fine in their hands and we had no documentation for her seizures. When we got that, we returned to the hospital the next morning, exactly a week after her vaccination. While I sat waiting for the doctor to have time to view our video, she had two seizures in just 10 min. Once the doctor and nurses came around and saw the video, Amanda has another seizure, the third in as many hours, and suddenly everything went very fast. 

The day of the admission and the following ones, numerous tests were run to find a possible cause, but so far nothing has been found. In this investigation, I obviously cannot help but consider the possibility that the spasms could have something to do with my diabetes, e.g. a consequence of one of the severe hypos I experienced while pregnant with Amanda. The fact that I myself suffered from absence epilepsy for a few years as a child, also brought my thoughts to it being something genetic. I'm also inclined to think that the vaccination had something to do with this, if not as a cause then as a triggering factor, but so far we don't know, and may never will.

All we can do at the moment, however, is hope that he doctors will soon figure out a treatment plan that can keep her seizure free until she, hopefully, will outgrow this. Today is Amanda's 6 months birthday, and this is not the way we'd hope to be celebrating it :-(

Welcome to the World, Amanda :-)

We made it! We made it through 9½ months of pregnancy with overall healthy numbers and measures for both me and the little one. What we didn't manage, though, was to convince the doctors that initiation of delivery induction at 38 + 0 was too early.

On Monday August 6th (37 + 6), I'd started my day as I liked to do with breakfast and a 14 km bike ride that I managed to get in just before the rain started pouring. I was at my computer by 8:00 AM with a wish to finish as much as I could on the publication that I was working on. Since being at home in the last months of pregnancy, I typically would work on data analysis or paper drafting in the morning and then take a long walk with our dog after lunch. On days when I felt a need for a nap it would typically be just before or after lunch. On that particular Monday, though, the weather forecast had shown that the rain should abate around the time of lunch, so to have the entire afternoon open for the long dog walk - and because the gray and rainy weather outside was making me sleepy, - I decided to take a nap at 9:00 AM. Before lying down, my BG was 5.1 (92), having dropped just 0.7 (12) points within the past hour. I knew that I had a tendency to drop over the morning, but at that point it had been 3 hours since my breakfast bolus, and I considered it safe to take a 1 h nap. I set my alarm clock for 10:00 AM, but all I remember is that I hit snooze, then nothing until Jimmi was home with me at 13:30 PM! :-( At that time, I was able to test and had 1.6 (28) staring back at me. Jimmi was very concerned, also for our baby - at that point, my brain was still too foggy to remember how very pregnant I was. He'd called the paramedics, and even though my BG had already climbed to 4.6 (83) at their arrival, I was still very affected by the hypo, and hence we were all off to the hospital for a check-up.

At the hospital, they immediately started an IV on me - even just with saline - and initiated CTG monitoring of the baby. She was affected by the hypo as well, showing a much slower heart rate than she typically would do, so with no room for discussion I was admitted and they were practically ready to cut her out of me with minutes notice. Having both recovered for a few hours, the baby's heart rate was back to normal, my BG was cruising at much higher levels than usual, but at least the doctors backed off a bit, deciding that they probably didn't have to start delivery induction until the next day. Even though I tried, I could not convince the morning round doctors that it would be Okay to wait until Thursday for the scheduled induction to start. They wanted to start right away, so we only managed to push their schedule to start late afternoon instead of in the morning, as this would give us a chance to go home on a temporary leave to pack some things and get a bit of rest (I'd only gotten some 30-45 min of sleep that past night).

Tuesday afternoon was the initiation of a long and not very successful attempt to induce natural delivery. From the beginning, my cervix was about 2 cm long and very closed. 6 suppositories later that hadn't changed significantly and because I was not willing to agree on a c-section until there were no other opportunities, we proceeded to insertion of a balloon catheter which should mechanically force open the cervix. The first attempt was a painful flop, as the catheter fell out during a toilet visit because the doctor had not been able to fill it as much as required because it hurt like H... The next day (now Saturday!) took a longer discussion with the doctor, who said something different from the doctor who had checked on me over night when the catheter had fallen out, but the end of the discussion was that we should be transferred to the maternity ward and I should be started on a contraction stimulating IV. The plan was that either this alone would be enough to help the baby settle in my pelvis so that she could add a bit of pressure to the cervix to make it open enough for the midwife to break my water, or if that didn't happen, then at least hope that the IV would enable insertion of a new balloon catheter for the night. It ended up being the last, this time much less painful, and the balloons were filled as they should. The doctors were encouraged by this and were almost certain that if my water didn't break by itself overnight, then at least it could be broken the next morning.

On Sunday morning (12.8.12) Jimmi and I were hopeful that the whole thing would soon come to an end and that natural delivery could finally be induced. Unfortunately, the examination after removal of the catheter revealed that induction of natural delivery was not going to happen, and because they had started that process they also wanted to finish it, so c-section was the only way out - we got just 1½ h to get used to that. I had an emotional meltdown when they announced this. It was exactly what I'd feared would be the end of it, because from the very beginning I had felt that our baby would be better off staying in my uterus for another week or two.

Fortunately, the spinal sedation wasn't as unpleasant as I'd imagined, and Amanda screamed her lungs out in protest the minute she was pulled out. She was just 2745 grams and 47 cm, so a very lean little baby. Her blood sugars were perfect all the way, only her stomach and intestines needed a couple of days to get to work properly so we had to stay in the hospital for a few days afterwards.

Amanda, 2 days old, still with a stomach tube, but chilling peacefully with her dad :-)

Sleeping beauty, 5 days old :-)

Point of no return

Yesterday, we had the final pre-scheduled hospital appointments of my pregnancy. It was meant to just be with the midwife and a pump nurse if needed, but because we had so much that we needed to talk through with the midwife it ended up taking most of the morning anyway.

The midwife, who's followed me from the beginning was back on duty yesterday, and while doing the heart rate monitoring on the baby we expressed our concerns and frustrations with the decision of induction that we felt had been forced upon us last week. The midwife was very understanding, and ended up checking which doctors were on duty to get us into an additional consultation. Fortunately, the doctors that have been following me along this journey were back after their summer holiday, and with both of them being chief physicians they had a lot more knowledge and nerve than the ones we saw last week.

The OB took us through their main reason for sticking to the 38+0 rule, which was new to me: According to her, the function of the placenta will typically drop more or less dramatically after 38 weeks, and this drop in function seems to be more severe and with a quicker onset in PWDs. Both of the doctors were rather surprised though, when we showed them the information we had about the procedure in the two largest national hospitals. Apparently it was new to them that type 1 diabetics elsewhere in the country could be allowed to await natural induction of delivery all up to their due date, so I hope that if we change our mind about trying for a sibling for junior in a year or two, the procedures will have changed in Odense as well to allow this type of approach if there are no problems or complications.

In the end we felt like they listened to our concern, and they agreed that postponing the induction a couple of days wound hurt anybody. It's a small, but more acceptable compromise, I think. They offered us a bit of influence and we accepted it. My feeling is still that the little one is not ready to be born just yet, but now at least she may not be out until around 39 weeks. I'll still have to check in for another ctg on Tuesday, but the full examination and start of cervix maturation will not take place until Thursday the 9th of August. This will be the point of no return even if it might still take days before active labor commences.

Oh baby!

Yesterday, we had our final grand check-up before the doctors were to decide, when they want to schedule induction of delivery. In Denmark this is normal practice, though there are significant regional differences, with some hospitals hoping for natural delivery commencement and others playing it safe with induction weeks before term. We belong to one of the latter kind. What started out as a great day was turned into utter feeling of frustration and tears :-(

Our day started at the midwife for a CTG on the baby and a blood pressure check on me. The little one still has a perfectly normal heart rate and activity level, and my BP was just as stable as it as been all way through - 110/73. Next up was the ultrasound weight scan, which again showed that Junior is still following her own growth curve with average tummy and femur measures, but a slightly smaller head. Her weight was estimated at 2,386 grams, which is on the lower normal side at 36 weeks - and which will leave her at just about 3,000 grams at the time when they want to induce delivery.

Now, how can you not be happy and totally in love with this little one?

Junior at 36 + 2, 260712

Having made a couple of adjustments to my pump settings based on the sensor output and having my weight and urine checked, the final stop was the doctors' office. Unfortunately, being vacation time, yesterday meant a consultation with two new doctors that we've never seen before - not optimal when you want to make your final points about delivery induction before they make the decision. My feeling with these two docs, as well as the ones we saw a couple of weeks back, was that they weren't really listening to our thoughts and concerns. Whenever we tried to ask for personal explanation to their 38 + 0-rule, we got a general answer along the line of "the risk of complications increases significantly and we cannot justify jeopardizing the baby's life". Not a single personal reason. It seemed like they only refer to their own, and in my mind somewhat biased, experience. I mean, if they don't let people pass the 38 + 0 line, how can they know that the outcome will be so much worse on the other side? We left quite deflated with the message that they would call us in the afternoon once they'd had their end-of-the-day conference to set a date for me.

At 3:30 pm the phone rang, and I was told that they'd decided to go ahead with their 38 + 0 recommendation. I argued a bit with the doctor on the phone, and while she said that I could of course reject that decision, then she made sure to play on my feelings, making me feel like a bad parent/patient if I did not follow their recommendations. Both before and after that phone call yesterday I was an emotional mess because of course I don't want to risk complications for me or the baby, but I also have this strong feeling of 38 + 0 being too early for both of us. It's hard for me to explain, but it just does not feel right, especially with the baby's current size and growth.

Now that I've slept on it, I think that I'll ask the midwife at the appointment next week whether if I show up for the 38 + 0 appointment, I'll be able to reject their pills if the baby and I are still doing fine and there are no signs of any of us being ready for starting the induction process at that time, or if I have turn the appointment down in advance. In the end of course, I hope that the midwife will be able to come up with a recommendation that is more on my side of things, as I can only imagine that things will be easier if both me an the baby appear more ready for delivery to be induced.....

Showered and starting the count down

While you sometimes - especially when you're a kid or teenager - feel that you could do without their presence or well-meaning advice, other times it's the smallest things that makes you remember why and just how much you love your family. A couple of weeks ago was my sister's birthday and we'd been invited to a Sunday morning brunch. Our parents came over on Saturday and we all had dinner together at Jimmi's and my place, so we had already sorted her presents at that time. I say this, because it turned out that what Jimmi and I thought would be a birthday brunch for my sister, was actually a baby shower for us that my sister had arranged with both our families and a couple of our friends! Her reason: In her own experience, it had been incredibly hard to constantly have people dropping by with presents in the weeks after their daughter was born, so she hoped that by letting our families provide us with their presents now, we'd get a calmer first few weeks and be able to decide when we're up for visits :-) Have I mentioned how much I love my sister?

Today I'm 35 weeks pregnant, which means that after my appointment next week, the medical team will meet up to schedule when they think delivery should be induced. We've discussed this with our midwife on a few occasions, and while she's seems open-minded and supportive of our wish to not force on delivery if it's not medically necessary, she also took the time to explain to us the likely reason that the OB had seemed rather dismissive, when we asked about this possibility last week. It seems like the "induction at 38+0-rule" is based primarily on experience - and since it almost always work well then they are hesitant to make any changes because, if something should go wrong it may be difficult for them to determine if what went wrong would have also gone wrong had the induction taken place at 38+0 and not later. I fully understand that argument, and I may also feel like just getting things over with at that point, but as both junior and I seem to be doing perfectly well currently, and the little one is actually estimated to be on the lower side weight-wise, I do have some difficulty coping with the fact that she may not be allowed to mature more than 3 weeks more inside of me.

It may just be the fact that in this case I may not have much to say about the course of actions that makes me feel uneasy about it. I don't know, it just seems strange to me that when there are absolutely no indications of diabetes-related complications for junior or me that they'll still insist on inducing delivery no later than 2 weeks before the official due date. The little one is still growing steadily, but their continuous measurements have kept the medical team very attentive because apparently the little one's head measures slightly smaller than what the median measures are, while the tummy and femur measures are always spot on. Because every thing else seems to be perfectly normal (heart rate and activity level), I find it a bit difficult to be really worried about this - after all we don't know if this is just genetic variation, because none of us were ever measured to this extend and unless something seems completely off, no one measures a newborns head anyway.

Only time will tell, and we can almost start the count down.....

Twisting and turning - but growing well?

"Diabetics tend to get big babies" - a very common line among medical professionals. And sure, our babies may be building up more body weight if our glucose levels are too high. After all, insulin is a hormone with anabolic effects and as soon as our little ones start producing their own, they'll just produce more if the blood running from our system into theirs is too sweet.

Still, I think that there are other factors contributing to a baby's weight, regardless whether the mom is a PWD or not. Not least the genetic pool.

I'm now 33 weeks along and have switched from biweekly to weekly check-ups at the hospital. Last week was a full day (well technically only half a day) of midwife (CTG), ultrasound, doctors (OB and endo are fortunately sitting at the same table at every appointment), pump nurse, eye photos and blood tests. Since the beginning of May, the ultrasound appointments have been dedicated to measuring the baby's weight and growth. All three of those appointments so far have shown steady growth, with tummy and femur measures right in the middle of their standard curve, but with a slightly smaller head, resulting in an overall lower weight estimate for our baby (10-20% below the center of the curve, but still within the "normal" range). Last week, the midwife had estimated the baby's weight to be around 1,600 g and the subsequent ultrasound came back at 1,571 g. This had the OB a bit concerned - even though the little one is still following her own growth curve - so she ordered another ultrasound before the next scheduled one, "just to make sure".

At today's CTG-appointment, the midwife estimated the baby's weight to 1,800 g. Next week will then be another ultrasound to measure it, but while I'm not too worried about the baby not growing well, I obviously cannot just forget the OB's worries about it. I asked around in a forum of pregnant and mommy PWD's, and was comforted by the fact that far from all had had big babies. Also, the fact that my now 6 months old niece was also estimated to be a bit too small, but came out at 52 cm and around 3,500 g at 41 weeks comforts me, as it makes me think that maybe it's just part of my genetic makeup (both my sister and I had similar lengths and weights, and none of us were born "on time", but a bit after our mom's due dates). Or maybe it's just because the little one is so active? ;-)

Continuous adjustments

Between trying to manage my health for the sake of our growing baby and a busy social calender, I've been working hard to complete as many work-related projects as possible. This has made time for blogging and blog-reading limited, but today I found a new post from one of my fellow pregnant D-bloggers in my mail. It reminded me not only to post a bit myself again, but also how different each and every PWD is in terms of treatment goals and wishes.

Jacquie's post was about how, in the process of pregnancy, she has changed her view on desirable BG and HbA1C values originally sown by a statement of her endo in the early days of her diagnosis. Pregnancy has made Jacquie wish for even a temporary membership of the "5-point-something" HbA1C-club. In the context of pregnancy I fully understand that wish. However, I must say that being a member of that club, which I've been for the better part of the past 15 years isn't always a pleasure.

The perfectionist in me has always strove for close-to-normal values, especially as technology improved and I started testing more frequently to get better HbA1C-results. The first 4 years of my diabetic life I had one of the brick-size meters taking 120 sec. to come up with a result, but in 1994, as I won a trip to the final matches of the World Cup in football (or soccer as you American prefer to call it :-)) in the US, my parents and I decided that it was about time to look for a smaller and faster meter. This became the start of me testing more frequently, and even without much attention to it, I soon found myself with HbA1C-values in the 5-6-point-something range. From then on, my competitive mind wanted to stay there.

I've managed to stay in that HbA1C range, which also made for a carte blanche to get pregnant whenever I felt like it. However, the low HbA1C levels at times also represented numerous hypos, some even requiring assistance from friends, family, colleagues or even paramedics. For many years, I've actually worked hard with my CDE to slightly increase my HbA1C, but I haven't been too successful at it. Also, 5 years ago, an additional autoimmune diagnosis entered my records, namely that of hypothyreoidism. It had probably been going on for a while before I finally got into treatment, as during the process of drug dose titration, I experienced a lot of the issues regarding BG regulation that I'd been experiencing on and off for years before. This, along with study and career choices, made me postpone any attempts to start a family, despite Jimmi desperately wishing to.

When I got pregnant, my HbA1C was at 5.4 and steady for the first three months. Then it dropped to 5.0, and because I knew how many hypos had brought about that number, I certainly didn't feel satisfied, but rather a bit defeated by diabetes and how pregnancy continuously changes all the rules of play in the day-to-day diabetes management game. Last week, my HbA1C came back at 5.1, and this time I feel slightly better about it as the number and intensity of the hypos have decreased over the past months. Yet, I still have work to do to try to slightly increase my overall levels in order to make the hypos less frequent. My insulin needs has gone up - currently about 50% - but I'm still very sensitive to physical activity as well as lack thereof, so it's a delicate balance to dose correctly at all times. It seems like every time we evaluate my sensor downloads some rates and ratios are adjusted upwards while others are adjusted downwards - there's apparently no common sense for the direction of adjustments yet.

Last week, we had another chance to spy on our baby. The ultrasound tech was then convinced that we are to expect a baby girl, and she's fortunately growing just fine with tummy and femur measures perfectly matching the center of the standard curve. Her head measured a bit smaller, so overall she was estimated to be in the low normal weight range, but following the growth curve perfectly well :-)

Junior at week 28 + 2 :-)

I hope that she'll continue like this, and that I - hypos aside - will continue to feel as well as I do now. Then we'll see if I'll let the doctors go ahead with their principled requirement for induction of labor in just 8½ weeks from now :-)

4 down, 20+ to go.....

I have more than 20 different hospital appointments in the next 11 weeks - all related to being a pregnant diabetic. The hospital has a scheme with biweekly doctors appointments until week 32, then weekly appointments. On top of that, there are midwife appointments, numerous ultrasounds - from now on I'll have at least 2 per month to judge the baby's weight - eye screenings and appointments with my pump nurse. They sure pay a lot of attention to you and your baby! :-)

Today I had 4 appointments scheduled, which fortunately was cut to three because the gestation outpatient clinic's diabetes nurse could see that I already had a separate appointment with my regular pump nurse scheduled in three weeks time. Hence, today's program was an ultrasound, a combined OB and endo appointment (this is actually a really good construction to prevent information getting lost or doctors having opposing opinions about treatment goal etc.), and a midwife appointment.

The ultrasound revealed that the baby is following the standard weight curve, although lying approximately 10% below - I guess I'm not too surprised by that, because there haven't really been any consistent high BGs for it to feast upon. At the last ultrasound, checking for disabilities, a month ago, the technician couldn't get a clear sight of the baby's gender. This time, we had both a doctor and an ultrasound technician giving it a go, and although the baby challenged them greatly by lying with the umbilical cord between its legs being squeezed tightly together, the ultrasound technician finally announced that she felt relatively sure that it would be a baby girl :-) Maybe our little one is just a tomboy like her mom, who used to find playing soccer with the boys more fun than playing with Barbie dolls ;-)

The appointment with the docs was pretty quick as there were no new lab results or anything to discuss or adjust.

The midwife appointment was the one that we'd looked most forward to, to be able to ask some of the questions we had about the course of labour induction. We've previously been told that by principle, all pregnant diabetics will be induced at week 38, unless there are complications that would indicated the necessity of premature birth. I've felt a bit provoked by this (I don't know how better to describe the ambivalent feelings I have around this). Obviously I may feel completely ready to get it over with at that time, but I'm also quite sure that if I feel good and if there are absolutely no indications of issues with weight or anything else for the baby, then I'd definitively prefer to let her stay in there a bit longer for both of us to be more ready for birth. We discussed it with the midwife today, and was happy to know that even though induction at 38+0 is custom - and put out in a way that make it sound like it's not up for any debate at all - then we do have a choice to object to this and argue with the doctors. At any point, no induction date will be suggested until after the week 36 ultrasound and appointments, so there will be plenty of time to think about it and decide what we feel best about.

All in all, today's 3 hours at the hospital felt like a good trade for the information we received :-)

5½ months.....

It started with 2 pink lines just around Christmas time.


About a month later, I spent an entire day at the hospital attending a handful of different introductory appointments. Two weeks later the first ultrasound checking for potential malformations was carried out, letting us see you alive for the second time.

This was also how you were introduced to the family weeks later. On purpose, we had chosen not to say anything about you for a long time because 1) we wanted to be sure that you were indeed there and doing well, and 2) minimize the amount of time that our parents would have to freak out in joy, worry and be ever-interested in mine and your well-being. My parent were the last to learn about you after almost 19 weeks. They have been more cool about it than I'd dared to hope and so far haven't increased the number of weekly phone calls to inquire about you and I. Jimmi's parents, on the other hand, have been overly interested - maybe because you'll be their first grandchild. Hence, their disappointment was quite noticeable, when you didn't want to reveal your gender at last week's second malformation-check ultrasound ;-)

Jimmi and I are just happy that you seem to be doing well, not bearing any signs of my diabetes.

I've now officially entered week 22 of your creation, and while everyone (doctors as well as other diabetic mothers) seem to say that insulin needs should already be going up-up-up, I haven't really experienced that yet. Sure, some of my basal rates have increased in the course of the past 21 weeks, but many of them have also been reduced, which was also the case for a number of them again at last week's appointment. My A1c - that has been very stable around 5.5 (+/-0.5) for the past 15 years - was 5.4 at the first check post-conception as well as 1 month later. In February, it had dropped to 5.3 and now it's down to 5.0. I would be very happy about this, not least regarding your health, was it not because of all the insane low bg's that I've been struggling the past few months. My basal rates are the very least possible the entire afternoon (0.05 u/h on a Medtronics pump), yet I can still drop like a stone when bike riding or walking. On typical workdays I'll have a 12 km bike ride in the morning and late afternoon, but because my employment contract just expired and I'm now "just" trying to finish a number of publications, my current schedule isn't as predictable. Yet, the hypos sneak their way into life every day. Yesterday, I spent the entire morning in front of the computer and on the phone, trying to fix certain issues, and still was 3.2 mmol/l (58 mg/dl) prior to lunch. A couple of hours later, I was at a very respectable 5.4 mmol/l (98 mg/dl) with the next-to-nothing afternoon basal rate in effect, and thought it was a good time for a walk with our dog. It didn't take more than 20 min to drop me to 3.1 mmol/l (56 mg/dl), though, and even though I consumed a total of 30 g of fast-acting carbs during the 75 min walk, I still was only at 2.7 mmol/l (49 mg/dl) afterwards. I used to assume that the low afternoon basal rates was a consequence of the late effect of my morning bike ride as well as part of the preparation for the ride back home from work, but yesterday's relative inactivity certainly doesn't support that notion.

I don't know. I'm not at all looking forward to becoming more insulin resistant, but I do wish that these unpredictable hypos will cease sooner rather than later :-)

22 years

Twenty two years ago today, I was admitted to hospital with a Type 1 diabetes diagnosis. I'm pleased to have survived all these years, virtually complication-free (i.e., if one doesn't count in the occasional hypo-unawareness), yet I'm also saddened by the fact that the promised cure still seem far away. The more I've learn, especially from my education in biomedicine, I've come to think that we will not see a cure until we learn to manage the immune system as well as replace the beta cells that the former mentioned immune system has killed off. This is tricky, and although I hope that it will happen some day, I'm not holding my breath. Instead, I enjoy life despite of diabetes - something which has become far more easy with the technologies of current time, such as insulin pumps, smaller and faster BG-meters, not to forget continuous glucose monitoring systems (CGMs).

Cheers to the first 22 years - I'm off to "celebrate" by working late in the MS-lab :-/

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 there 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 :-)

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 :-)

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 :-)

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.

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 was 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 during 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 getting 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

"Life"......

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

Getting everything settled

Friday next week I will leave for Glasgow, spending 5 weeks over there. 5 weeks – with only a week to get everything settled for my departure!

Before Christmas my supervisor and I agreed that it would be good if I could come to Glasgow in the beginning of this year, but even so I don’t feel like I have had enough time to actually plan my trip. The reasons for this are that work has been crazy during January. My Danish supervisor expected me to assist and train a foreign post-doc coming here for a short visit end of January in order to learn how to analyse some samples that our lab had run for her. This was planned even before Christmas, and as I knew she would be here the last 2 weeks of January, I figured that I probably wouldn’t be able to leave for Glasgow until beginning of February. In the first days of January, I did start to make a draft plan for my trip, as well as the experiments that I would want to conclude before leaving. I had a plan for my experiments all set to start January 7^th, and figuring that I could use the breaks in between the experiments to make the final arrangements for my Glasgow trip. However, as I wrote in my last post, my plans got messed up by an e-mail I received on January 7^th, and because I have a short-term visitor that I need to help with data analysis this past week has been more than stress-full.

I managed to have a very decent draft of my review done last Sunday, and have used whatever few minutes I would have during the week to proof-read and refine it, while having to use the majority of my time to trouble-shoot data processing and software installation issues. At the same time I also had to get my trip to Glasgow arranged, ordering the tickets, so that I would be able to participate in a lab meeting over there at the 5^th of February – a lab meeting I have to prepare a 20-25 min presentation for as well!

Being busy for me usually means an increased frequency of hypos and as my regulation haven’t been the best the past couple of months I have had even more issues with this. Just before this crazy schedule started I had an appointment with my D-nurse and we agreed that some basal testing was needed. Thus, on top of all the work/study related stuff, I have also tried to fit in some attention to basal testing. It has been very difficult, and it is probably not the most optimal to combine busy schedules with basal testing, but I felt I had no choice as I have had far to many hypos in general lately. I have been making some changes to my basals during this period of basal testing, but the changes don’t seem consistent – as in one day they appear to work, the next they don’t – and I still have too many hypos to actually not worry about my coming trip to Glasgow.

I went for a blood draw Friday morning to get some thyroid results, and at the same time I had an A1c done. The result was in my file on the Funen Diabetes Database later that day: 4.9%! That is a 0.4 drop from beginning of November, and the lowest A1c result I have ever had. Aside from the fact that Alice will probably “kill” me when I call her on Tuesday ;-) I don’t think I have even been that frustrated with a low A1c result before. Had this results been achieved without all the hypos then of course I would be thrilled, but fact is it has been achieved due to daily hypos, at least for the past month or so. That is utterly frustrating, especially when the changes you try to employ do not seem to help!

I have been thinking a lot about what to do about my stay in Glasgow. Even though I know from experience that changing my setting, even if it is just for a couple days at my parents, will generally elevate my sugar levels - the extent of the elevation depending on the actual “new” setting – I am worried about the risk of being alone with a hypo in Glasgow. Not to mention the fact that Jimmi has also been close to the past months’ low sugars and is of course worried too, because he cannot be there to help me. He will come for a short visit, but the majority of the time I will be on my own. I much hope that I worry without reason, but it is difficult, especially with the events from Hamburg this summer in mind. I plan on asking Alice if there is any chance in the world that I would be able to borrow a sensor to bring to Glasgow, but given the short notice and the length of my stay I don’t expect it. Anyway, I hope that the accommodation will enable me to notify someone about my condition and how they should react if I act strange or don’t show in the morning, and I will probably also make a deal with my colleagues in the lab about calling me if I’m not in at a set time and have them contact someone who can get into my room should I not answer. Otherwise I just hope and pray for my sugars to behave while I’m over there, so that none of the emergency contacts needs to get involved!

Wish me luck, and I will try to post about my adventures in Glasgow, if not during my stay then at least afterwards :-)