Meeting with the vampire

I left work early yesterday to go get my blood work done in preparation with my meeting with my endo on Friday. I always like going a few days early so that at the appointment we can talk about real numbers, rather than what it was last time I was there. I also know that I won’t pay attention to the conversation and will be a nervous wreck if I wait until the end of my appointment – I hate getting blood drawn. Not to mention that it generally takes weeks to get the results. Before the HIPPA laws, I would get my A1c done, then call to get the results before my appointment, so that if I wanted to kick or scream or cry about the results it would not be in front of the doctor.

I got to the clinic and checked in with the lab. They were going to look up my record and call me in later. About 10 minutes later I was told that I didn’t have any lab orders in my account and “sorry.” Sorry? I drove 45 minutes to get here, paid an arm and a leg for parking and all you have is sorry? So I trotted right over to the area where my dr usually is and asked for the doctor on call (actually I know that they are called the “captain of the day” so I used that term much to the confusion of the nurse). The ‘Captain” happily ordered the labs that I rattled off. Amazed that I knew exactly what I needed.

I went back to the lab. Moved the chair so it would recline, told the woman that I do better with a butterfly needle, and started to have my same old chat about nothing, staring at the curtain divider in front of me, hoping that I would not pass out. Yes, 25 years of having diabetes and my general odds of passing out when having blood drawn is about 50/50. I did fine this time although there were a few seconds there I was unsure. Some deep breathing and mindless chatter helped me stay in the world of the living.

As I left to go meet a girlfriend for drinks (may as well take advantage of being in the city!) I started to think about the interaction. I wonder if there are patients that would have accepted “sorry” as an answer and gone home. Sadly, I think that there probably are. People who go with what the doctor says and don’t feel empowered enough to find out what they really need to know. When the doctor rattles off a suggested new prescription or lifestyle change, I worry about the number of people who “yes, sir” the doctor – all the while saying ‘I could never do that.’ I wonder if it’s a lack of education on what exactly they should be looking for (Ac1, Cholesterol, Lipids etc) Or if it’s a feeling of helplessness or apathy that they just don’t have the energy to care. Feeling beaten down by this disease which we all know, effects every part of your life.

I went to my lady parts doctor recently, and of course, my pregnancy plans were a hot topic of conversations. She said something that really stuck with me. She told me how most of her Type 1’s do great with pregnancy because they “respect the disease” and know how to work with it. I really liked that thought. Respecting your diabetes for the powerful force that it is, yet also having enough respect for yourself that you learn how to control it and manage day to day.

I respect my diabetes as a function of who I am. Just as any mother would fight to get the right teacher or support for their child, I am happy to speak up and fight for my health and diabetes. Because if I don’t, who will?

What did I think?

That’s what everyone wants to know. I wore the minimed sensor for 5 days. I knew that according to the nurse, I could wear it one more day, but the tape was getting itchy and I was just ‘done’ with wearing it.

I’ve uploaded my information from my meter and regular pump and done the comparisons against what the sensor logged. All in all, for me, it was accurate. I was impressed to see the day by day average and see what the sensor (in blue) had to say versus my meter readings (in black)

My husband and I looked at the graphs and charts and were amazed at what it told us about my general readings. It is truly amazing to see so much data about what your body is doing! It seems I need more insulin overnight. I am not totally convinced about that because I generally wake up lower than I happened to do for the time I was wearing the sensor. But that merits a basal check overnight just to be sure. Oh the joy! I knew that there was something going on in the afternoon (besides wishing I did something more fun than software QA every day) I’d guess my insulin to carb ratio needs tweaking. So, that was very useful information.

I did love being able to check at any time and see, what my blood sugar is and what direction am I going. I am confident that eventually, the pump (which ever company perfects it first) and the CGMS technology will be the standard in diabetes care.

Right now, my main focus is taking my overly prepared, over researched, type A personality, and life long type-1 diabetes, and getting this body that I generally love and appreciate, ready for a baby.

For me the crux of the question is
* Can I live with the 20% accepted difference in range? When my target blood sugar goals are tightened for pregnancy, being 70 versus 90 is a noted difference. On the other side of the spectrum, a reading of 250 could be 200 or 300 according to my meter. Will I be able to trust the sensor or will I be checking a million times a day anyway?
* Can I live with the monitor telling me I am low after I have had a snack to bring myself up. There is a 10 minute lag from what the sensor is and what your meter would give as a reading. Several times I would be feeling low when it said I was 85 (which is close to my target of 90). I’d check and be lower according to my meter, then eat, and feel better by the time that the sensor would alarm for a low blood sugar. When I was low and cranky, the last think I needed was another machine beeping at me.
* Do I want to wear another infusion site. The actual extra site bothered me more than I thought it would. Not the set itself - that I never felt - but the additional visual reminder that I was hooked up to a machine. Looking at myself in the mirror, the quick set site seemed ok, but the sensor just seemed like too much to me.
* I am an admitted wimp. Can I handle putting in this additional site once a week? I went off the pump the first time because the site was too hard/stressful to insert.
* Is the benefit worth the financial cost?

It’s funny, I selected the minimed pump a year ago because of the promise for this technology. My husband and I agreed, it was “a must’ for pregnancy- and then probably not really needed for general ‘life’. After wearing the sensor for a while, I am thinking just the opposite. When the tight control is so critical, I will happily poke my fingers every few hours. Once that little bundle of joy is here, and it’s ok to be 130ish, I can see this technology being pretty handy!

So the answer is that I still don’t know. I go to see my TV star of an endo this week (he was recently on D-Life). I’ll get his valued opinion, then will ask the endo at the pregnancy clinic when I start to see her in May and make a decision.

The bottom line is that it is fantastic technology. I honestly would dream about technology like this when I was a kid. I never asked for a cure, I only asked to be able to “just know” what my blood sugar was. I am truly grateful to the scientists and people who participated in trials that made this sensor what it is today. Are all of the kinks worked out? Not at all, but it’s progress in the right direction. And to an old school, stubborn type 1 who is very set in my ‘diabetes ways’ it’s a huge step in the right direction.

I’ll let you know what we decide to do!

Day Two

I slept through the night just fine with the sensor attached to my side/back love handle. I even slept on that side and was not bothered by the site at all. Other than when I was thinking about it and poking it yesterday, I have not had any issues with the actual site.

I was woken up by a ‘high’ alarm at 1am. The sensor was saying 204 and my meter clocked me in at 251. I corrected and went back to sleep. I have to say that my night and early morning numbers are higher today than they are normally, so I will have to wait to get more days under my belt before I over analyze.

While showering and changing my insulin pump site, I was looking at the cgms site. Do I really want to be connected to another site? Will it get ‘old’ fast? Will the extra data be helpful? Is it worth the cost? What if we invest the money into the system and I end up hating/not using it. I used an insulin pump in the early 1990’s for about a year and hated it. I felt horrible telling my parents that I did not want to do it anymore after all that they had spent on getting the pump and supplies. They were tremendous and helped me do what was most comfortable for me. Will I be that forgiving to myself if after sinking in thousands of dollars that I decide I don’t like it?

All important things that I hope to figure out this week.

So Far I've been surprise at the accuracy:

Time pump meter
7.09 start 114
7.26 100 104
8.18 90 135
8.54 115 110
9.22 106 116
12.22a 204 *alarm 259
7.21a 172 206
7.50 182 184
8.18 182 170
9.34 144 146
10.20 126 112 feeling lowish
10.44 106 102

I'll keep you updated.

My try at the CGMS thing

Today I met with the minimed nurse/rep, who happened to also be an old camper of mine. Oye, feeling rather old now! (no comments needed from you other old camper-o-mine out there) I wanted more info on the MiniLink system that just came out. (2nd generation CGMS for MiniMed.)

She showed me the new mini link (that she was wearing.) It is SO much smaller and more impressive than the old sensor. (I saw the old sensor and said no way would I want that on me everyday) she showed me the site that stays in your body (it’s the same as the site for the old sensor) and then talked about the features.

Points of interest. You have to calibrate the sensor at least once every 12 hours. It will remind you. You do a calibration via an old fashioned finger stick. The accuracy is around 20% for a differential, So if your meter said you’re 100 anywhere between 80 and 120 is considered accurate. Not sure how I feel about a range that large. To me there is a big difference between 80 and 120. But we’ll see. She suggested that you check around 4x a day to put that in your pump for data points to see how accurate it is. I didn’t thin that this would take away finger sticks, but it was more often that I thought it would be.

It checks your sugar every 10 seconds and then once every 5 minutes the average if those readings displays on the pump. At a quick glance, you can see 3 hours at a time on the screen with a little graph. You can upload the information to the CareLink website and get as many graphs as you would ever need. I use the CareLink site for my general pump and meter readings already, so I am familiar with that.

You can set alerts for high and low blood sugars. It also has arrows that indicate if you are going up or down at a rapid pace.

I am an admitted wimp, so was a little worried about making a scene at Panera (where we had met) but she put the site in pretty easily. It’s in my love handle area, which she said was where she found it to be most comfortable. The FDA says that you can only wear the sensor for 3 days, but she suggest around a week is more realistic. The sensor seems to get better readings (as in more accurate) after the first day.

The new sensor needs to be recharged every 14 days fully (a full charge apparently takes around 2 hours) but she suggested that you charge it for 20 minutes or so when you change the site. you cover the whole thing with a layer of IV tape- but you just need one.

Here is the problem, for me, and many others. How much does it cost?

I have a 715 MiniMed pump, so I would have to upgrade to the 722. I believe she said that was between $3-500.
The initial cost of the sensor is $1000. That comes with the sensor and 10 sites.
Each additional site is $35 each.
The sensor is supposed to last around a year, but is only under warranty for 6 months. So technically you have to buy a new sensor (For around $650) every 6 months or deal with it being out of warranty until it all needs to be replaced. If advancements are made in the sensor, and it is covered by warranty, you will get the new technology.

The true sales guy in my area is going to work out with my insurance how much/if they would cover it. They think I have a good chance if I throw in the whole wanting to have a baby thing. We’ll have to see.

I don’t have any readings yet, since the minimed lady thought I was on a newer pump, but there is one waiting for me at home. I’ll report back on how it is going. So far the site is just fine, it was a little tender after I was poking at it, but that’s to be expected.

More later!