Thursday, April 12, 2007

Day 2--Minimed Real-Time--I Like this!

I like this thing. I like having no additional baggage; I never really realized how stressful it was to carry around that extra unit with the Navigator. What if I lost it!

I wish I could look back at more information stored in the CGM. You can only scroll back for several hours to get readings. The bar graph is supposed to sub for that. I haven't downloaded the software yet (One of my least favorite activities is downloading software), so I'm sure that will be where I get my good data. I love having this number all the time. I finally figured out the calibrations. See comments from my last post from Noel about specifics related to calibrations.

Curious if any other Minimed wearers are interested in having this thing. My greatest challenge is NOT pushing my daughter to get one. We are ready to order at any second, but I want this to be her decision. Just imagine the joy of going to bed and knowing an alarm will sound if she drops or goes high. The joy of sending her off to school or one of the random day summer camps we send her to, knowing all she has to do is look at her pump to know where she stands.
This is a worry eliminator.

Really wish the CGM had the smarts of the Navigator in terms of alarms. They have the best thing since canned beer with an alarm that warned you 30 minutes before a low or high. THAT, my friends, is cool and it worked 97 percent of the time. Once, I got a warning of an impending hypo and my sugar was at 125. I thought, I'll take care of that after I drop off the kids. How fast could it be falling. Well within 30 minutes I was at 60, five minutes later I was in the 50s, five minutes later, and after a juice, I was in the 40s. IF I had headed the warning, I would have drank a juice, yes at 125, and watched as I dipped to the 80s and then slide back comfortably into the 100s. This happened many times. I loved that, so Minimed, this is the goal for the model next year.

Let me hear from you. I know money is the biggest obstacle to getting this thing, but would you want it? What do you think about the technology. Does the idea of this kind of technology, perhaps even having a closed loop system, make having diabetes more bearable? I am ashamed that the CGMs and pumps costs so much; that this technology is so inaccessible to so many people. I am very fortunate. Very fortunate indeed.

photo from www.freefoto.com by Ian Britton

14 comments:

Chrissie in Belgium said...

Wendy - I have to tell you what I am thinking. First of all I am DAM jealous. I feel so out of it having never tested or even seen a CGMS!!!!! They only have the very first model availale at our hospital for perhaps a 3 day loan. You cannot even see the results yourself on this ancient model! So I think why should I bother with that. That would involve following the doc's instructions and he really doesn't know my body as well as I do. Then after 3 days it would be back to the old procedures again. It seems rather hopeless. AND I admit I am mechanically/technically very SLOW/STUPID. I am not oriented that way - what is simple to other is a total fog to me......could I manage one on my own? So I think, wait awhile until the wrinkles in the systems are ironed out. Or am I being chicken?

Another thing that really worries me is that even now I do not trust my Cozmo pump for calculating everything. I find that it just cannot take all the components into the calculation. Sometimes it suggests smaller correction boluses than I choose. This is b/c I KNOW that my food is digested slowly. I know that when my bg is only a little bit elevated my ratios radically change. Only I know how stressed I am or what exercise I will or will not be getting. How do you put a fast speedy walk compared to a slower walk into numbers? And even if you could calibrate exercise I KNOW that on some days I will need more/less b/c that day seems to be showing different trends. So I am scared of just trusting a machine calculation.

But it shure would be nice to be warned of approaching hypos! It sure would be nice to NOTt have to wake up several times EVERY dam night! I can't turn to my CDE/doc for discussing the pros and cons for me! They do not provide them and think they cost to much, etc, etc I feel kind of left out in the cold? Well the sun was warm in Croatia ..... I will have to continue sucking on that. I posted some pictures on my blog.

Chrissie in Belgium said...

Oh I forgot to say I loved the pink photo!

Drea said...

I love the Minimed GCMS system. I have been using it since August 2006....once I got through the first few weeks using it, it has been essential for me!

I of course do not like that my insurance will not cover it, but I am being patient. I understand it is new technology so it is going to take time ..... i hope.

I agree with what you wrote, my biggest dislike is the display screen. I like the two quick view you can get, but I do not like that I can not see in details the past results/trends. I do not like that I have to take my MAC computer, boot it up into Windows - upload the data slowly through my meter - and then go day by day creating reports to see and analyze my data. That is too time consuming, and I do not like the security issues of having to use the internet and having my data stored anywhere but on my own harddrive. Because of that, I rarely upload to the carelink program. I would like to see a stand alone software program that would allow a user to upload and analyze. (there, that is my carelink rant!)

I never realized how much my sugars fluctuated between readings - until you can visually see it on a graph!

You are right, this is amazing technology! I am so glad it is going well for you!

Carey said...

Very interested in getting this for my son in the not-too-distant future. Thanks for sharing this.

Wendy Morgan said...

Hi Chrissie, I hear your frustrations. A CGMS would be ideal for you; in fact would be ideal for EVERYONE. Be patient; you'll get access to this soon enough!

I do have a thought regarding your pump concerns. This is all a big guessing game. We never REALLY know if that bolus or basal adjustment will do the right thing. I really feel like the less I "worry" about caring for myself, the easier it is and the better my blood sugars. Sort of like shifting the boulder that we carry on all of our backs with diabetes. We might think carrying it on our shoulders makes the most sense, but it feels twice as big sitting there. If I shift the way I feel about this disease (slide the boulder down between my shoulderblased), a give myself credit for the care I provide myself, my management isn't so hard--literally. If I change my mind about this disease and who is in charge, I can change the outcome of my blood sugars.

I have noticed that a shift in my perception and worry impacts me physically. So, I do my best (even posting a picture of a 280 blood sugar) and leave room for faith that that is good enough.

Wendy Morgan said...

Drea,

Thanks for following along. For those of you interested inthe Minimed, check out Drea's blog. She has been hooked up for a while and has lot's to share!

Wendy

Noel said...

Yep, I feel like it is SO beneficial that any insurance company should GIVE their customers these things. It has improved my A1C so drastically more than anything has besides insulin itself. Be sure the meter you use to calibrate is ACCURATE. I tested 2 VERY popular ones and a new one.. the AgaMatrix WaveSense Keynote.
Results were :

This evening:
Agamatrix: 173
Freestyle Flash:133
Ultrasmart: 121

Yesterday evening:
Agamatrix: 183
Freestyle Flash: 153
Ultrasmart: 129

These 2 tests were all tested from the same fingerstick, from the same drop of blood. Now the question is... which one do I trust most? Which one do I calibrate with? Hmmmm decisions decisions...

Chrissie in Belgium said...

Wendy you are definitely right that the LESS wr worry about things the easier and the better our management becomes. Of course you can take anything too far, but I hear what you are saying and a CGMS would definitely reduce my worrying! I really don't know if I have the courage to just buy one and do it all alone without ANY medical assistance - ie absolutely no info or financial help. A bit spooky, and that is why I currently am waiting a bit.

Anonymous said...

I had some lazer treatments in 1990 for retinopathy. I had a total of 6 treatments for $1500 each - insurance covered it. But I remember saying 'yikes' when the doctor told me how much it was. He said that it was really cost effective.

Let me think for a minute....$10k or go blind. Of course it's cost effective!

I can't help but think of the same cost effectivness arguement for the cgms. The only thing holding me back right now, is that I dont want to get something (minimed), if something better (navigator) is coming out in 6 months. I'll throw a few grand away ONCE, so I want to make it good. :-)

-john

Wendy Morgan said...

The thing that helped me turn the corner on CGM cost, was the thing that made me so angry about the techonolgy to begin with. "You mean I'm paying $700, and this transmitter is only good for a year?!?!"

I realized my monthly costs were going to be relatively high, BUT for the past three nights my blood sugars were between 96 and 12--the whole night. I have seen a slight rise in my sugars after lunch and into evening into the 200's. I have information that will help me make changes to fix that. Not one alarm for a low and only two moderate alarms for above 275.

Whatever the cost, right now, I need to care for my body--with 24 years of poor, if rarely acquired information with finger tests.

Next year, when this transmitter expires, there will be a new one; something totally kick ass! I'm going to buy that one too, BUT I won't be "throwing away" my Minilink, it is only good for a year, so I can justify the expense to myself. Silly how I wrestle with money. Maybe a worse demon that even diabetes.

Wendy Morgan said...

Ooops! Blood sugars are between 96-128 all night, not 12.

Note to self: Read before hitting publish!

Denise said...

Hi Wendy,
I am seriously considering the minimed CGMS, however I am unsure of what you mean by the "transmitter". What exactly is the transmitter and can the pump be used without it? Also, can you give me an idea what your monthly out of pocket costs will be for the use of this pump?
Thanks!

Wendy Morgan said...

Hi Denise,

The transmitter is the white shell shaped device and hooks up to the sensor. The sensors are worn inthe stomach or hip and changed every 3 to 7 days and cost $35 each. I have been told by many people the sensor will last up to 14 days.

The transmitter alone is around $700. It is a one time purchase good for one year.

THe pump operates without the CGM transmitter and sesnor, but it sure is nice to have it.

So, after the initial expense of buying the transmitter, monthly costs range from $70 - $350 depending how many sensors you use. I am shooting for long wear, but I am going to change site in 7 days for my first sensor.

Lindsey said...

Has anyone had problems with their minimed? My sister has had several issues, one for which she had to be sent to the emergency room and I'm interested in getting together a group to discuss the problems. PLEASE reply if you have!