Endo appointment

Today I had my endo appointment. He thinks that my management is so good that we only need to set up appointments twice a year. I can live with that, as I get the appointments I need with Alice, my fabulous diabetes nurse in the day-hospital unit. In my eyes, Alice is the health care person in my D-team, who knows the most about me and my diabetes when it comes to management of this disease. She has done more trying to get my sugars in control, working with me to reduce the number of morning highs and subsequent severe lows (they were more or less an invariable rule for the last couple of years with Insulatard® [NPH] as basal insulin), assisting in the switches to Lantus and the pump, respectively. That she is the one to turn to when it comes to fine-tuning of insulin and use of the pump in general, was confirmed beyond everything else today.

I started seeing my current endo, when I moved to Odense almost 6 years ago and needed to find a new diabetes team here. My first impression of him was a bit mixed. He is Egyptian, and although he has been living in Denmark for many years, he still speak Danish with quite an accent, so I had to focus on every word he was saying to make sure I understood him right, which also caused me to doubt his medical capabilities a bit. This is not a problem any longer, as I have gotten use to his accent in both Danish and English (he was my co-supervisor during my master’s, and because his research unit is international, the common language in the lab and at meetings was English), and I have gained confidence in his medical capabilities too. Like many other doctors, however, he too has a tendency to focus on the overall results of diabetes care, i.e., the A1c-value. Thus, it took me quite some time to make him realise that a change in my regimen was needed 4 years ago, when I was having large issues with Insulatard® and BG-levels overnight. My A1c was around 6.0, so he couldn’t see any problem.

Sitting in his office today, I almost felt like back then. He asked about, whether I had decided to stick with the pump or not, and I told him that although I am still not convinced, I am being a bit more positive towards it than I was 6 month ago, so I felt I had to give it a bit more time to make it prove its worth. Jimmi and I do want to have kids within the next few years, and as much as I know that the hospital will not approve Lantus for use during pregnancy, I absolutely do not want to go back to Insulatard® and its unpredictability, so, as I told my doc, it will probably be wise to try to make pumping work. I told him about the issues I currently feel I have with it, but he didn’t really have any suggestions as how to solve those. As these issues are specifically related to the sports activities I like to join, he asked if the adhesive on the infusionsites would stay put when I was sweating. I told him that I would usually secure the site with an additional adhesive, because I had experienced unintentional detachment of sites due to sweating. I also mentioned that I had started swimming again, and he immediately asked me how I managed with the pump during swimming.

“I take it off”, I replied

Doc: “So you take out the whole thing?”

Me: “No, I just disconnect like this (showing him how to disconnect the pump), put a couple of pieces of Tegaderm® over the site to seal it, and go swimming”

Doc: “Let me see that again (referring to the disconnection procedure, carefully inspecting the infusionsite). It is so much smarter than those old butterfly-needles that were used with pumps 20 years ago.”

Me: “Yeah, I guess so….” (thinking to myself: Haven’t he kept himself informed about the new advances in diabetes treatment at all for 20 years?!!! He too recommended the pump 4 years ago, when he finally realised that we needed to exclude Insulatard® from my regimen if I was to regain decent control – and now he reveals that he actually knows nothing about pump therapy!!).

I am so happy that I got Alice to turn to in these matters. My endo is apparently helpless when it comes to pump therapy. What surprised me even more today was that he didn’t even wanted to look at my log sheets. Essentially, what he did today was to measure my blood pressure, hand me a lab-sheet for blood work to be done before the next appointment in 6 months, reminding me to schedule an appointment for eye check-up at the same time (the eye exams are done by specialists in the ambulatory too), and then ask me if there was anything else (not specifically related to pump therapy, as he stated that it was probably better to let Alice handle that) that I wanted to discus with him.

I've got an appointment with Alice in two weeks :-)

At long last!

I did it! It has taken me more than a handful of tries, but today I succeeded in completing my swimming session without going low :-) If I had had the time, I would have been able to reach my goal of 30 laps, but one of the ph.d-students of our group was to defend her thesis at 1:15 PM, and if I was to catch some lunch before the talk, I had to stop swimming by 12:30 PM.

I started swimming on Friday noons about a month ago, as we are able to use the university’s swimming facilities for free at these times, and I thought it would be a nice supplement to just biking to and from work and only playing soccer once a week during the winter. I can’t say that I am happy about the time of our free swimming sessions. The choices are Monday-Friday mornings 7:00 - 8:00 AM or Friday 12:00 – 1:00 PM. I am not much of a morning person, least of all during the darkness of winter, and as I have got a 9 km bike ride to get to the university, the morning hours are so out of question for me. The noon time on Fridays is not ideal either, because it is usually during that hour that I will have lunch, but I am stubborn so I wanted to make that work anyway. Until today, however, my swimming sessions (usually 30-35 min, 22-26 laps of 40 m) have always caused me to go low. On the last few lanes my movements are hardly coordinated, my muscles feel heavy, and I have to give in to that stupid low. My approach so far has been to eat a small snack, accompanied by a small bolus, about an hour before going into the water. I used the same approach for soccer practise in the spring where I would also disconnect during the session, so I figured that it would also work for swimming. Apparently it did not though and I have been quite annoyed with that fact.

Today I had a low of 2.9 (52) at 9:15 AM. I treated it with ½ slice of rye bread and didn’t bolus but 0.3 U for it at 10:00. At 11:00 I had another ½ slice of rye bread and some veggies for a pre-swim snack (I have used fruit or müslibars for this beforehand). I bolused 1.3 U for this to cover for some of the carbs as well as the upcoming time off the pump. I tested at 11:45 AM before heading towards the swimming facilities: 10.5 (189). A little higher than I would like before disconnecting for 45-60 min, so I added an additional 1 U.

Due to my limited amount of time today I swam 26 laps in 35 min before having to stop if I was to attend the ph.d-talk. After showering and getting dressed, at 12:45 I tested: 5.9 (106)! When I got back to the office and P asked me how my swimming went today, I couldn’t help raising my arms in sign of victory. “Are you low?”, she asked, and I was happy to announce that for once I wasn’t. I had completed my swimming session in save range. Great! Heidi 1 – diabetes 0 :-) At least for now……;-)

Chocolate is good for you :-)

Today I got chocolate at work :-) Two bars of dark chocolate, one with nuts and one just plain dark chocolate. Uhmm!!! Did I mention that I love chocolate? ;-) The reason for this chocolate coming my way – and I haven’t eaten it all yet, it will probably last me a few days, if I can restrain myself a bit ;-) – was an expression of gratitude.

I share my office (office may actually be a little too big a word for this 8-10 m² room) at work with two master students. One of them hasn’t been around for the last couple of months as she is studying for an exam that she needs to pass in January in order to formally be able to finish her master's. The other student, P, is just about to finish her thesis. However, she is pregnant and due to give birth by the end of December, and all of the medical appointments she has to go to (she has Leri-Weill syndrome and Madelung’s deformity (see picture to the left), and during pregnancy her thyroid gland has been getting sloppy, requiring several tests and endocrinological follow-ups, and now medication too), means that she will not be able to hand in her thesis until after the baby is born. We have shared office for years, struggling with our different projects and thesis, and even when I finished my master’s last year and got employed as a research assistant within the group, I kept my desk in this office despite it officially being reserved for students (our group is very space-constrained with only 3 of our 6 principle investigators, as well as our secretary, not sharing their offices. Everybody else shares, usually 4-6 people in each office). P and I have helped each other a lot during the years, both in scientifically oriented issues and in personal issues. She has become quite skilled in spotting if I am heading towards a low, and know how to deal with it if I am not able to myself.

A couple of months ago P and her husband moved to Vejle, where her husband works. This causes P to have a 60-75 min commute to and from the university every day. The medical appointments she has to attend often causes her to take the whole day off because they may be situated in the middle of the day so that she would only be able to spend a couple of hours in the lab before or afterwards. This is of course not practical with this commute, so these days she will often be working at home, reading articles or analyzing spectra. Sometimes, though, these days away will interrupt the experiments that she needs to do in the lab, setting her back more than just the single day that she is actually off. Because of this we have an agreement that she just has to tell me and maybe leave a note on my table, if I am to take care of an experiment for her (e.g. dry down some samples, start or end an enzymatic digest, etc.), so that she can just continue the series of experiments when she is back in the following day. I don’t mind doing this. It usually doesn’t take much time for me, but it saves her at least a day, so I think that it is the least I can do. She is grateful for this, and because she knows that I am a chocolate lower, she usually gets me a piece of chocolate in thanks.

Handing me the chocolate this morning she told me that she just heard on TV last night that dark chocolate may actually be good for diabetics. Two different programs on two different TV channels had sent that message through. Dark chocolate should apparently be able to increase the insulin sensitivity of muscles, thereby assisting in lowering the BG. I have heart many good thinks about chocolate, and dark chocolate in particular, during the last few years, but never anything specifically related to diabetes, so I was a bit surprised though pleased that food research may actually justify my occasional craving for chocolate :-) I entered “diabetes + “dark chocolate”” into Google, and got an amazingly 261,000 hits! I didn’t really find anything new, though, but I did find a couple of sites that stated the link between dark chocolate and the proposed improvement of glucose metabolism although the main effect seems to be lowering of blood pressure and not blood sugar (ooh!). Amy at Diabetes Mine had a post about this about a year ago too where she also points out that the experiments leading to these conclusions were actually done on healthy, non-diabetic individuals with some degree of hypertension. Now I am just wondering why all of a sudden the possible positive effect of dark chocolate has reached the Danish media again more than a year after this research first made headlines (here in Denmark too), and now even focusing more on the effect for diabetes?

Severe diabetes

”You’ve got very severe diabetes, haven’t you?” Ever heard comments like that? I have several times, especially when I have been “stupid” enough to open-heartedly tell people about the challenges of this disease, and what can happen if a low BG is not caught in time. I have never really known what to respond to this type of question. The reasons for this are multiple. Sure, I have had my share of problems with diabetes during the last 12-13 years, but these problems have always come in waves, and not with equal intensity. The first 4 years of my D-life were quite an ease, so things haven’t always been that difficult D-wise. When the issues were most extreme (the last couple of years with Insulatard® (NPH) as the basal insulin), I had several severe hypoglycemic episodes causing several trips to the ER. I had to drastically increase the number of tests done pr day, but as this didn’t eliminate the trips to the ER, I guess it is only natural for third parties to think that I must suffer from severe diabetes. After all, people always seem to know another diabetic who “doesn’t test much, just take the shots, and never has any problems”. I cannot help but think – and thinking back on my trouble-free years too – that when you do not test much, chances are that you don’t notice those highs or lows that ought to have been corrected, e.g. by change in your general insulin regime, thus generally you are a bit on the high side some times and on the low side at others.

I guess it all points down to the eyes that see in the given situations. The reason I am ranting about this today is that I was asked the above mentioned question during the weekend. On Saturday we had our soccer team’s end-of-the-year-/Christmas party, and at some point I got to chat about diabetes with one of my team mates, getting this question (I cannot remember the exact context, but that doesn’t really matter anyway). She is a teacher and one of her students was diagnosed a couple of years ago. A recent change in his medicine had also caused his levels to fluctuate greatly. I told her about some of the difficulties I have had with diabetes, and answered some of her questions about diabetes in general. Having talked for a while, she suddenly said in a serious tone: “It is quite a difficult condition to handle, isn’t it?” Apparently, she had come to realize that with diabetes thing aren’t always plain black and white, and just to follow some “simple” rules to avoid problems is not the way it works. If this was really what happened, then all I can say is: Mission accomplished! :-) It is not always easy to manage diabetes, and the more people are aware of this the better, especially for the sake of the diabetic children who may not be able to “defend” themselves against the verbal attacks and judgments that ignorant people can come up with (I still remember being told: “Ah, you’ve probably been sinning (not religiously meant), haven’t you?” if I had a high reading, and regardless if the reason for that high was that I had had something sweet or not, I would always feel that I was being convicted for not taking proper care of myself).

Anyway, the party was great, and we were still able to perform pretty well in the indoor games that we had to play on Sunday. Most importantly we had a draw with one of our local rivals, 2-2 (the same result as last week, by the way), and a win of 2-0 against the other local rival, the Football Club of Odense (OB). Maybe it was because we had such strong support with us – despite the late night party, a “fan club” of ours of 7 people (team mates and coaches) had taken the 30 min drive to cheer on us :-) I don’t know. I just know that this past weekend seemed far too short, as one of my team mates put it when we were driving back towards Odense in the dark, rainy afternoon yesterday: “I wish tomorrow (i.e., today) would have been Sunday – but then again, I guess we would just have gotten around to do something else tonight that would make us feel just the same by the end of that day too :-)”.

A break

I just read Kerri’s post, ”An open letter to my Pancreas”. I need to join the pack of admirers of her writing style and sense of humor :-) Still, as always, she’s got a point, an important one: Things sure would be much easier if Mr. Pancreas would fulfil its job and not just part of it!

At the moment I am trying to figure out how to predict the effect of cycling on my BG. Usually, my cycling to and from work and activities do not pose any large challenges. Sure, the BG will be lowered a bit, but usually no more than 2-3.0 mM (26-54 mg/dl) on ride of 8-12 km, which does not necessarily pose any threat to my well-being. The last couple of days however, it seems like my bike rides, notably those in the afternoons will send my BG into an almost vertical decent.

Yesterday, I tested at 4:15 PM and got a 6.2 (112) reading. This seemed reasonable. I had a slight bolus from a bun that I ate at 3:00 PM, and because I was heading for indoor soccer practise at 5 PM, the basal was reduced to 60 % at 4:00 PM. The trip to the sports facility where we practise is little more than 4 km. I didn’t have a head wind or anything. I was in a hurry, though, because I had been busy at work (needed to finish a presentation I was to do today), so I was a little late. When I arrived the others were ready to start warm up, and I just thought I would quickly change my close and join them. I did feel a bit light headed, but thought it was just the stress of the still unfinished presentation and me being late. It wasn’t. When I tested just before joining the others, I was 1.7 (31)!! Quite a drop in just 45 min I think! I took me an additional 45 min to get back up in safe range to play, which I of course was rather annoyed with. I didn’t go to the sports facility just to sit around and watch the others play and have fun, I wanted to play myself, but couldn’t because of my BG. I only got to play for about 30 min – we stopped early because we were only 7 people and indoor soccer is quite strenuous when you are constantly involved (the others had been playing 3 against 3 while I had tried to get my BG back up, and once I joined we started a rotating substitution where each player would get 5 min break, thus continuously changing the constitution of the teams to allow every one play with as well as against each other). Fortunately, the anticipated rebound of this low wasn’t too bad. I was 12.1 (218) by bed time, not having been higher – at least what I know of ;-)

Today I went to Glostrup (near Copenhagen) to do the presentation that I had finished during the train ride. Everything went well. I felt - and was indeed - low at lunch, 2.2 (40), probably because I had lunch a little later than usual and having had a busy program all morning, without thinking about where the BG might be at. When I got back to work in Odense in the middle of the afternoon, I had a snack, covered by an appropriate small bolus, worked for a couple of hours and then prepared to head home. I did a test before heading home: 8.6 (155) at 4:30 PM, so this should be enough to get me home without any problems. It takes me approximately 30 min to ride home on my bike, today with a little head wind, but not too much. On my way home I noticed that I started yarning. Not because I felt particularly tired, just because I needed to. To me that is a sign of a BG not being where it is supposed to. Usually it is going low, but sometimes high – why does some symptoms have to be ambiguous? Anyway, I got home and because we were due to eat within 30 min, I didn’t got to do a test right away. I just took part in the preparation of our dinner and then tested at 5:45 PM: 2.8 (50). Dropping 5.8 (104) in just 75 min seems a bit drastic, I think, considering that I didn’t have much insulin in the system (last bolus of 0.8 U at 3:00 PM and basal only being 0.3 U/h from 3:00 PM to 6:00 PM). I would just love a break from this!

Rebound highs

Today we had the first games of the indoor soccer tournament. The first game was at 10:59 AM in a sports hall not too far away from Odense, so we were to depart at 10:00 AM. Because I had a few things I would like to do before taking off towards our meeting point at 9:30 AM, without being too busy, I had set the alarm clock for 8:00 AM.

I didn’t hear the alarm clock. It showed 8:20 AM when I first opened my eyes because Jimmi came into the bedroom to see how I was doing. A morning low :-( I still got around the things that I wanted to do before taking off for soccer, but in addition I got the joy of rebound highs during the rest of the morning. Before the warm up I was 13.6 (245). The pump didn’t think a correction was necessary. I overruled that decision, though, and sent 2 U into the system. When I checked again about 45 minutes and two games later, I was 15.6 (281). Great! The adrenalin from the games combined with the other hormones of a typical rebound swirling around in my body. I took an additional 4 U, because I don’t play too well when I am high either, and we still had 3 games to play. When we had finished our 5 games about an hour later, I was down to 12.4 (223), and it was time for lunch and another aggressive bolus.

Back home a couple of hours later all the insulin finally seemed to take effect, and I had a reading of 3.0 (54), but except from that I have been steady in target since then, enjoying the effect of exercise on the BG-level too.

Next Sunday the second round of indoor games are on. I hope that I will be able to start the day without a low then. There are enough of other challenges for our team this day as we have our team’s end-of-season-/Christmas-party on Saturday night ;-) I am pretty sure that this will cause as least some to suffer a bit from a hangover. Fortunately, we should be 7 people, and as only 4 will be on the field at a time, the ability to make substitutions should be good. We have a few games to revenge ourselves next time as well as repeat the victories we had today :-) The best of our games today, we won 5-1. In all the games I was responsible for guarding our goal, but because of the rules in indoor soccer (each team has to have at least 1 player on the opponents half at all time – unless they are in minority due to a suspension), the goal-keeper usually take part in the attacking play to create a “power play” situation. Therefore, I was on our opponent’s half in the end of this particular game. From the side line I heard one of our substitutes cheering for a goal in the final 10 sec. of the game. I had just passed the ball to one of the others and turned my head to look at the clock, seeing a “4 sec” left of the game. A fraction of a second later I got the ball back again. I made a short, quick move and took a shot towards the goal. The ball hit the net just as the final whistle sounded :-) Our substitutes were thrilled, they told me that they had actually just been joking when they cheered for a final goal 10 sec. before time, because they didn’t really think we would make it. I just told them that I saw no reason to give our opponents any last chances, thus I took the shot as late as possible! It gave us a good laugh, but I guess that we were too high on our performance in this game, because we weren’t quite as focused in the two final games, both of which we lost. We’ll make that up next weekend!

Power out

Yesterday Jimmi and I were perfectly rested in our sofa, watching soccer on TV – first a cup game between the local heroes, OB (short for Odense Boldklub), and Broendby, and then F.C. Zulu (a soccer team created by the Danish TV station TV2 Zulu, constituting a bunch of guys who have never played soccer, or any other sports for that matter, before being enrolled in this project, where a former top-player has been their coach :-)) and their Spanish equivalents, with the Danish team targeting revenge for our real national team’s loss of a game to Spain at the World Cup back in 1986. Check out some pictures of the Zulu-boys here.

Watching the Zulu-boys play is always amusing, but yesterday the entertainment was abruptly interrupted: At 9:05 PM there was a complete power out in our area! The whole neighborhood was dark, although we didn’t realize that at first. We thought that maybe it was just our own cut-out relay playing tricks with us, but after having groped for a flash light in the dark, we could see this was not the case, so we looked out the window and couldn’t see any lights around our house either. We then had to find some matches and candles – this was actually very cozy :-)

As today apparently is officially D-blog day, you may wonder what this episode has to do with diabetes. Last night, when we were done lighting candles, Jimmi asked: “What do we do now? I want to take a shower and go to bed with a book. Only, I will not have enough light to read by in my bed”. His question made me think about how dependent our daily living and activities are on electrical equipment (TV, computers, powerful light to read and work in, freezers and fridges, etc.). We don’t think much of these facilities until we aren’t able to use them. On the other hand, it is commendable that at least the stuff needed to manage the D on a daily basis (meters, pumps, pens/syringes etc.), if anything, are battery-driven. We do not live in an area where natural calamities may cause power outs and/or other emergency situations very often, thus we have never really thought about having a plan for such situations. We usually have matches and candles (although mostly tea-light candles with a limitted number of burning hours) on stock, but batteries for flash lights and bike lamps are not something we always have in the house, because we primarily use rechargeable batteries for these devices – and once they are flat, they need electricity and a couple of hours to get back to work :-) I don’t even have an emergency kit of supplies and other D-related stuff packed for me to quickly grab if we for some reason or another would have to evacuate our home someday (luckily, I think chances are very slim that this scenario should ever arise). Anyway, I guess I actually ought to have such a kit, regardless.

Power came back on at 9:37 PM yesterday, so it wasn’t that long we were without power. Despite the cozy atmosphere created by the lit candles, I actually appreciated being able to test and treat that bed-time hypoglycemia (2.0 [36]) having sneaked up on me, without having to carry a torch around the kitchen to find the needed snacks in the fridge and cupboards. Although, maybe being a bit inconvenient, a torch-search for food might actually keep one from returning to the cupboards and fridge, over-treating the low? ;-)

".....your result sure embellishes the statistics...."

As I wrote in my last post, I wasn’t sure how my diabetes nurse, Alice, would react to the result of my last HbA1c. I haven’t had time to post about it until now, although my appointment with her was Thursday last week.

The appointment started out with us discussing some things related to the “insulin pump” that the hospital is working together with a company to develop. Alice told me that they had just had another meeting with the company the day before, this time with patients using insulin pens. These patients had, as expected, been far more positive in their evaluation of the product than us pumpers had been. She also had to tell me that the company seemed to have realized that perhaps they ought to work a little bit closer with the caregivers, i.e. the nurses, on some of the dosing issues that had come up during the meetings. One of the representatives had done some calculations the night before the last meeting, and although he couldn’t recall exactly how he reached the results, he was proud to announce that based on his calculations, the typical daily dose of insulin for a type 2 diabetic would be around 15 U! No need to say, the nurses’ reaction to this statement was utter surprise that was not to hide behind a tolerant smile :-) Anyway that is another story; I just think it perfectly illustrates the need for companies working with diabetes remedies to work closely with patients as well as caregivers to obtain the best results.

Proceeding to talk about my management with the pump, we got to HbA1C result. Alice’ reaction to the results just illustrates why you got to love her as a nurse and a person! With a sincere smile upon her face this was her comment to it: “Well, I don’t know how I should reward you, if I ever manage to see a 6.0 on your chart. On the other hand, I must admit that your result sure embellishes the statistics of the A1c of our pumpers!” No hard words, just a smile and this comment along with the “as it is now, I still think we should aim as getting you a bit higher, though”.

I think Alice is the only caregiver I have been seeing through all of my years with the D, who acknowledges the facts that she can say as much as she like, but there is no guarantee that the patients will comply, and that the changes to be made need to be realistic from the patients point of view too. This is also why the conclusion to this appointment was that I would start out cutting 0.05 U of all the basals during the day, so far not touching those in effect during the night, because night time lows do not seem to be an issue. The aim still is to slowly elevate my general BG level just a bit, but at a pace that I am confident with (I do confess not to like seeing numbers above 11.1 (200) in general, many times having a hard time confining my desire to correct it). She understands that, and tries to work with me to find satisfactory solutions. She really is great, and I wish that all of you could be seen by someone like her, when you need to make adjustments that cannot just be made by a few words from the endo in his consultation (no many adjustments can, by the way!).