Monday, March 27, 2006

About me

I am a 28 years old Danish girl, born in the middle of Zealand, but living in Odense, Funen for the last 5 years. I finished my masters in biomedicine last fall with top grade (I am very proud of that, it took a while to realise that it was actually true). Biomedicine is a combination of molecular and cellular biology and some medical courses enabling the candidates to work as scientists in corporation with medical doctors, actually being able to communicate with the doctors in their language ;-) After my exam, I worked on a time-limited position as research assistant, but am currently unemployed, though having a great offer that I am considering. The fact that I haven't just accepted the offer is due to personal issues that I will introduce you to in a later post.

I was diagnosed with type 1 diabetes 16 years ago. Ever since,
January 16 1990 has been D-day in my life. Thinking back, the symptoms started around Christmas 1989. I remember drinking a bit more than usual, and that my parents noticed it, but thought it might just be because of the Christmas food. I wasn't. In the following weeks my thirst became more severe and I needed to use the bathroom more frequently. I used to be able to sleep through the night without having to get up for the bathroom, but the night before I was diagnosed I was up 5 times to pee and drink, so I did not sleep much. I was tired, thirsty and did not feel like eating anything. My dad made me an appointment with our doctor in the afternoon, and after doing a finger stick, the doctor sent us to the hospital as my BG was too high for his meter to read. I remember that I cried all the way to the hospital (45 min. drive), thinking that this was just so unfair. I have had asthma and allergies all my life, and from age 4 to 8 I had petit mal epilepsy (the kind characterised by frequent so-called absences, not seizures), so I certainly thought that I had already taken my share of sufferings, but I was obviously wrong :-( So, I was admitted to the hospital and stayed there for 14 days. One of the things I remember most about that hospital stay was this nurse telling me to remember that despite my new diagnosis I was no different than my peers. Well, how are you to believe that when you are told that you must be treated with insulin given at certain times which means that you have to eat at certain times too, and because the regulation of the doses should match my typical days I would have to eat my hot meal in the evening as opposed to all the other kids on the ward, who had their warm meal at lunch? My designated meal plan in the hospital meant that I could not eat at the same time as all the other kids, and that the hot meal I was to have for dinner, needed to be heated in a microwave oven placed on the adult ward. Now, I have nothing against microwave dinners as such, but there are certain food items that are not suitable for reheating in a microwave! Gravy and ordinary potatoes tend to become very boring with a rather unappealing taste when they are reheated in a microwave, and as hospital food are not too interesting in the first place, the dinners on the hospital was not something that I looked forward to each day. Luckily, I was in a room with 5 other girls, one of whom I became very good friend with (we are still best friends today). This girl also had a special diet because she had been diagnosed with Addison's disease and had lost so much weight that she actually appeared anorectic and sort of needed to be fed up again. She and I could share our experiences with the food like none of the others :-) Finally, I was discharged on the last day of January. Being at home my parents were very attentive. My dad still hung on to the hope that the diagnosis was wrong and as he watched my sugars the days after discharge, he slowly began lowering my doses (I did the injections myself, but under my parents supervision) without telling the hospital. I had the first appointment with the hospital doctor about a week later, and when he learned what my father was doing, he was worried but he could not do much about it. My dad continued lowering my doses, and on day 10 after my discharge I was off insulin. Still monitoring my BG's frequently and watching my diet, although not hysterically, I was off insulin for 7 month. Man, those were the best 7 month after my diagnosis! Unfortunately, it could last and in September hyperglycemia showed its ugly face again. At that time I had changed doctors because my parent and I weren’t really satisfied with the first one. The appointments meant a 45 min. drive, and once we got there, we would usually have to wait approximately 30 more minutes before being called in for me to be weighed, have my height checked, and being asked how I was doing. This usually took no more than 5 minutes, but as it required an additional 2 hours wasted on driving and waiting, we wanted to find a doctor closer to where we lived. The hospital in our home town did not have pediatrics, but, asking kindly, I was allowed to enter the adult ambulatory anyway. There I was set up with the best diabetes doctor, I have ever met. None of his successors had his qualities, so it was a great loss when he got a new position - on the hospital we left :-( Anyway, he set me up on a MDI regimen (when I was diagnosed I was put on NPH twice a day) with Actrapid and Insulatard (regular and NPH) and slowly titrated the doses until they fit my daily activities. I was on that regimen with quite good regulation HbA1c-values 5.1-6.5 % for 13 years. When I started university, however, I began having trouble with my fasting values. I could go to bed with nice values of 6-8.0 mmol/l (108-144 mg/dl) but would, with very few and unexplainable exceptions, wake up 13-20 mmol/l (234-360 mg/dl). The days that I wasn't high, I was usually below 3.0 mmol/l (54 mg/dl). It was very frustrating, because I did not feel well at the high values, and if I did not take my insulin, correcting for the high, and wait at least 45 min. before I ate, I would be high (i.e., above 200 mg/dl) at noon too. So, I had to wake up quite early to give the insulin time to work, and I sometimes ended up over-correcting the high, going low later in the morning. Some of these low were quite severe, and I had several trips to the ER during those years. The endocrinologist I got to see when I moved to Odense did not think the problem could be so big because my A1c's were still around 6 %, so it took a while to convince him that it might be a good idea to be hooked up to a CGMS to see what was actually happening during my nights. I had tried to set my alarm clock to measure in the middle of the night, but it didn't help much, as the value there was usually fine (below 10 mmol/l (180 mg/dl)) and then when I had to get up 3-4 h later it would be about twice as high, plus I would be cranky because my sleep had been disturbed (I am unable to go back to sleep immediately, it usually takes me 30-60 min to do that when I have been awake to measure, not least because I will eventually speculate if the reading was too low, too high, perfect, or whatever). Fortunately, the endocrine unit at the University Hospital in Odense (OUH) had the CGMS available. I was hooked up, and when the readings came out the skilled nurse scratched her head and looked at me in understanding as she could certainly see my frustration about the reading because there really was no pattern over the nights. I happened to be on the CGMS with one day of normal fasting reading and the other three with high readings, so in general the days were quite representative. In corporation with the nurse, Alice, I tested different changes, none of which were effective though. She suggested that I tried an insulin pump. The pump is not a very common way of diabetes treatment in Denmark yet (only about 0.5 % of the type 1 patients in Denmark are pumpers). I was not very fund of the thought, so we also discussed other possibilities. We ended up agreeing that I substituted the NPH with Lantus, which at that time was not approved in Denmark, but was available through different test centres, including OUH. This change was a change of the world to me! Not only was my insulin doses over the day lowered, but for the first time in years I would wake up in range (4.0-7.0 mmol/l - 72-126 mg/dl) almost every morning. That was great. I have been using lantus in combination with regular and NovoRapid for 2.5 years now and it still work nicely most of the time. I do have intermittent troubles with hypoglycemia, though, and despite them being far less than before the change, Alice is still nagging me about at least trying the pump. She would like to elevate my A1c just a bit to 6.0 %, my last one was 5.8 %, to avoid the lows without any significant symptoms that I still experience at times. I guess that I have some kind of hypoglycemia unawareness, although it is not absolute, because most of the time I can feel when I am dropping, but the symptoms are weaker than they used to be, and I usually need to get below 54 mg/ml before I feel them. I have my next appointment with Alice the coming Tuesday, and I promised that I would really consider trying the pump. I have considered it, but I haven't come to a final conclusion yet. I guess that eventually I will end up trying it, and maybe like it, but right now, despite the advantages that I do see with pumping, there are some disadvantages that I cannot help focusing on. Most significantly is the fact that you are to be hooked up to this device 24-7 365 days a year. I know that you can disconnect when required, but still. Although I know that others wear their pump doing sports, I do not feel comfortable with the though of wearing one when I play soccer. In season, I have two practises and 1-2 games every week, and if I am to disconnect every time then what is the purpose of pumping? I don't know. Maybe it is just me, and maybe I would change my mind if I tried it, blaming myself for not having taken that step long before, but I am not confident yet.

Well that was quite a long introduction. I hope I didn't bore you too much :-)

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