Frustration (+ DexCom STS to the Rescue?)

As if to underscore the point that NOBODY’s immune to the volatility of this disease, I have seen my endo today and come away incredibly frustrated! My A1c has crept up to 7.2%. Not good, in my Frustrating book, especially because the only way it seems to being going lately is up. Endo thinks this may be due in part to the “rebound effect” from too much night-time Lantus (I’ve been waking up bathed in sweat). But I am NOT HAPPY, and kept badgering her about workout strategies and the pump (is it time to get serious now?!)

“I feel like you’re pressuring me to give you the special ‘Amy Solution,’” she said with a wiry smile. Well, duh!! Of course I am. Don’t we all want our medical team to provide us with just the right strategy to make it all work? OK, so I was a little edgy, too. The girls have been sick (No. 2 is running to the bathroom as I write this very post) and I’ve been feeling a bit woozy myself. “Gimme the #$!@*! solution so I can get home to my sick kids!” OK, I checked in the parking lot before heading home: 269! Well, that explains the “pressuring” part: I’m intense enough when I’m in range. Poor doctor. Poor me.

Anyway I know the pump’s not a cure-all, but here it is: all my other numbers (blood pressure, microalbumin, lipids, even liver test) are in range, so I’d be on track for a long and healthy life — if I could just get my A1c under 7, for @#$% sake. Know what I mean? What? You think I’m putting too much pressure on myself? Or you think I should just get over it and go on the @#$% pump? Be kind…

Dexcom_1_2 On another note, I see that DexCom has received FDA approval of its new continuous monitor today. This is an especially appealling real-time monitor, as the unit you wear is a little pod, controlled by a separate receiver unit (similar to the OmniPod tubeless pumping system). Since I can’t get me an OmniPod till next year, maybe I can at least swing me a DexCom STS, to figure out what’s really going on overnight. Beats setting my alarm for 2am to check, ay? (No details out on actual availability just yet.)

* Update 4/5/06 – the unit is available currently for an introductory price of $500, regular price $800. Sensors are $35 each and come in packs of 5. No insurance coverage for the unit yet, as I understand.*

19 Responses

  1. Shannon Lewis
    Shannon Lewis March 28, 2006 at 2:10 pm | | Reply

    Amy I would be the last person to tell you not to go on the pump.

    It’s not a cure all, but it’s healthier version of insulin delivery.

    Just do it!! :)

  2. Johnboy
    Johnboy March 28, 2006 at 5:49 pm | | Reply

    Amy, I’m sorry to hear of your frustrations lately. Like advanced Suduko, this is not an easy puzzle to solve.

    Thanks for keeping us up on the latest technology!

    Have fun with Allison this week!

  3. Bruce
    Bruce March 28, 2006 at 6:19 pm | | Reply

    Amy. Like others, sorry to hear about your A1c trend. But, perhaps it’s not all that bad. Your last number, 7.2, is after all less than 3% over the ADA’s “recommended level” of 7.0, and I’ve never heard anyone give us info about what the usual (statistical) variance is for a person’s A1c results over time or what the A1c test labs’ accuracy is [If each result is +/- 3% accurate, then your result isn't statistically different from 7.0.]. Sure, it’s better for us to get our A1c’s down below 7.0, but do a plot of your results over time and see how “stable” your numbers are. Maybe this “bad” 0.2 overage is in the noise level of your A1c timeseries average. And, yep, maybe it would be “better” to get onto a pump, but hopefully for reasons beyond the 0.2 overage. So, given the other good results you’ve mentioned, this single-time “overage” might not be that terrible. Keep up the good work…

  4. Megan
    Megan March 28, 2006 at 9:29 pm | | Reply

    Based on everything I have read, you seem like an ideal candidate for the pump. Why has your doctor not agreed to it? Or do you not want it?

    I am in a similar situation- trying to get on a pump now.

  5. Sweetie Pie
    Sweetie Pie March 29, 2006 at 12:14 am | | Reply

    1. I’ve had diabetes 41 years
    2. I don’t mind shots
    3. After trying Symlin which cranked me up to about 10 shots per day, and my results were still bouncing high and low, I finally switched to a pump in January.

    I am seeing numbers I rarely saw before, like “109″ and “94″! Weird, in a good way. My A1C was 6.7 which I also liked.
    Yes, I have had 318 and 33′s, but I’m glad I finally am giving the pump a chance. Not perfect, still plenty to kick myself for, but better…
    Also, I don’t like creating plastic medical waste regularly.

    Glad I found your blog.

  6. Val
    Val March 29, 2006 at 4:49 am | | Reply

    To be honest, I have seen no difference in my a1c’s with pump versus without. But I started pumping before the end of my honeymoon, so I’m sure I would see a difference now. It’s great to be able to know that between 3-6 am I need 5 times as much insulin as at midnight, and there’s no way to do that with shots. It’s a lot easier to get precise doses too. But even if my basal needs were stable (ha!), I would never get rid of the pump, because its worth it for the convenience alone.
    However, even with a continuous monitor and a phone appt with my dr once a week, I’m still looking at 7.5, which is pretty much the same as my average a1c without the extra crap. The way I look at it is that I had 36 years of normal blood sugar. The massive fluctuations now are a pain, but at least I have a good head start. I’m really trying to get it to goal, but if I don’t I try not to stress too much about it… As my dr points out to me, I am doing everything humanly possible, so the a1c numbers are a reflection of the inadequacy of present treatments rather than me not doing what I should.

  7. Kerri
    Kerri March 29, 2006 at 5:28 am | | Reply

    I don’t think anyone can talk you into or out of choosing pump therapy. It’s just a decision you have to make. One A1c shouldn’t make or break you — you are not defined by these numbers. However, understanding your concern, I would advise that you assess your own personal situation and see if the pump would be the best course of action for you. Only you know if you are ready. Your medical team can only guide you.

  8. AmyT
    AmyT March 29, 2006 at 6:40 am | | Reply

    You’re right of course, Kerri (and everybody else!) Thanks. I’m just so on-the-fence over this; I happen to have the world’s most infection-prone skin, so I know with certainty that infusion sites will be a real problem for me. *sigh*

  9. Catherine
    Catherine March 29, 2006 at 7:11 am | | Reply

    My main concern with the pump was having it hanging on me and the tubing etc. However, I haven’t found it to be much of a problem. I keep it tucked in my bra (I’m not that well-endowed) and keep the tubing tucked under my clothes. I rarely have the tubing snag on anything and I have been on the pump for 11 years now. You have to change your infusion sites every two days to prevent scarring and since starting that regimen I haven’t had any problems with skin irritation. I use betadine to prep the skin then BD’s “Skin Prep” to keep the adhesive on. You can disconnect the pump for showers or other activities. It really provides me a level of flexibility and control I haven’t been able to replicate on injections.

  10. Kerri.
    Kerri. March 29, 2006 at 8:50 am | | Reply

    For me, it was the fact that I was taking a needle upwards of nine times per day and my dawn phemonenon was knocking everything out of range for over 8 months. That was when push came to shove. Until that time came, I was fine with 17 years of injections.

    My decision was pretty much made overnight. If you’re going to leap from the fence, you’ll do it when you’re ready. I have complete faith in you!

  11. Nick
    Nick March 29, 2006 at 9:19 am | | Reply

    Amy,
    I feel your pain. A couple of years ago, my A1c tested 6.3%. I considered that too high. Instead of spending six thousand dollars on a pump, spend thirty dollars on a book. You can start enjoying the same normal blood sugars as non-diabetics. I do, and have lived with type 1 for over a decade. Google “bernstein diabetes” for details.
    Good luck with the girls.
    Nick

  12. KSC
    KSC March 29, 2006 at 1:43 pm | | Reply

    Hi Amy,
    I think the best advice I got about the pump was that even if its just a little better, better is better. That helped me take it on without too many high expectations. After what was at the time 16 years of taking injections, I was really happy with it, and as for control, it was better. My problem was lows, and now I have far fewer. As for the frustration level you feel, I can relate! Especially when you add in the time it takes to watch your own kids. Good luck to you.

  13. Karen
    Karen March 29, 2006 at 4:02 pm | | Reply

    Amy,

    I have been a type 1 for 39 years and pumping for the last 3. I was on NPH and regular for 35 years and then switched to Lantus and Humalog for a year where it took me 6 months to figure out that one shot of Lantus did not last me 24 hours and I too was having severe lows during the night and then extreme highs after dinner. Finally I split my Lantus into two doses taking it every 12 hours and shooting humalog for my meals, it worked great, but…..5 shots a day just to eat and more for corrections and if I wanted a snack….well you know. Bottom line I switched to the pump and I am the biggest chicken on the face of the earth and so programmed to shots and also did not want it hanging on me 24/7. In my opinion, a pump is the best form of insulin delivery and I feel every Type 1 should at least try it. All it really is, is a big syringe with fishlike tubing delivering insulin just under your skin, very very simple concept. Believe me diabetes still sucks, but my life is so much easier and two weeks ago my A1C was 6.5, and could be even better if I just stuck to three meals, but that is not living.

    Karen

  14. Felix Kasza
    Felix Kasza March 29, 2006 at 7:02 pm | | Reply

    Hi Amy,

    workouts and Lantus? Oh my. You so want a pump!

    I like to push myself; this would be completely and utterly impossible without the pump — unless I went running or biking with a backpack full of glucose tabs. (Hmmm … perhaps one could dissolve them in a Camelbak hydration pack?)

    No, if your idea of being physically active is more han a slow ambling walk around the block, you don’t want to have long-acting or intermediate insulin in your system.

    The other thing is, since you can nicely fine-tune your basal rates, correction factors, and I/C ratios, the formerly elusive comes within a pumper’s grasp. My HbA1c is consistently under 5.0%; I have not had a severe hypo after I got my normal and work-out basals adjusted; and my BG variance is always under 30 and mostly under 25 mg/dL. Yes, you can finally get decent results without killing yourself with lows!

    Oh, and the 7.0%? Uh, no. 6.0% is what we should aim for. Sorry!

    Cheers,
    Felix.

  15. Kathleen Weaver
    Kathleen Weaver April 8, 2006 at 5:22 am | | Reply

    I thought you should have been on the pump the day you were diagnosed and have been surprised to see how much energy you have spent avoiding it.

    I tried MDI for a year, and it was absolutely for the birds. Of course, being a teacher, it is impossible for me to keep any type of regular schedule.

    At least do a saline trial and see how wearing one goes. It is not as bad as you think.

  16. AmyT
    AmyT April 9, 2006 at 8:46 am | | Reply

    Hi Kathleen,
    I think we all spend a pretty exorbitant amount of energy caring for (and complaining about) our diabetes, whether we’re on the pump or not. Be honest now :)

  17. RobD
    RobD May 26, 2006 at 9:24 am | | Reply

    Hi Amy,

    I don’t know about pumps, this is more a general comment on a few of your blog entries.

    One is that A1c aint everything. As you joked about somewhere, lows will affect your A1c. I know you meant it ironically but think for a moment: this means that A1c certainly isn’t everything.

    In fact, I have discovered something that has been causing all sorts of side effects on me for years (13 of type 1)that a fast speed of fluctuating blood sugars, even if in relatively “normal” ranges, will stress the mind and body and cause systemic fatigue. Your endo will probably not recognise or treat this fact with sufficient seriousness (I’ve gone through 6 over the years that simply have no idea).

    This is something your A1c can not show you. Being stressed and not thinking clearly is the greatest enemy possible, to your health and long life. That’s food for thought that getting things more even (even if A1c doesn’t change) may actually be of more value to your health than many other things. Lowering your stress (and I feel it and recognise it) will let you make decisions better, and you will make better progress as you solve your metabolic puzzle.

    Interestingly, you mention that your endo “suspects” you are on too much lantus because of night problems: they suspected that for me too. I thought that for many months, and felt guilty for not being able to discipline to test in the night and morning, so never getting a “handle” on what was going on.

    Lately circumstance led to me focusing heavily on getting to a better place with my D. After 5 weeks of ultra intensive testing, food logging, sleep logging etc, I came to and actioned this change: _double_ my Lantus dose and half my rapid acting. This created more even blood sugars than I have had in years and the resulting easing of stress and fatigue was astounding.

    What was happening in my case? Something else endos can often “forget” to pay due attention to is that insulin can have strange absorption rates at different times. My night problems were actually caused by my dinner dose of Novorapid, which decided to regularly defer itself till the wee hours. A test or two in the night was not actually going to reveal this: I had to commit to getting a real picture of how my BG was going.

    I’m not saying this is happening in your case, but it’s something to think about and an example of how endos can just plain have it wrong (or seem overconfident) and put an idea in your head that can stop you getting to the truth. Be careful of that.

    Going back to the fluctuating BG is bad, tiring and stressful: my decision for less short acting and less carbs, consistant low gi meals, good amount of Lantus, stacks of fibre… and my body can find it’s metabolic rythym and overnight things are not nearly as sensitive and reactive (including my moods). That’s my movement to solution, I wanted to let you know there is a better place to be in than you seem to be, and the endo probably won’t find it for you… you will find it. I do recommend periods of intensive testing, andtrying to take a childlike, learning appoach to the data that’s presented.

    Getting the motivation to do it is another story: in my case it was a trauma which can hardly be recommended :)

    Good luck with it!

  18. Todd
    Todd January 2, 2007 at 10:17 am | | Reply

    It’s a new year and I just wanted to briefly write about my Dexcom STS sensor over the last 6 months. For those of you thinking about purchasing the device…..WAIT! It still has to many issues and bugs. Not sure how the FDA approved the device, but they did. Dexcom right now will do as much as they possibley can to re-coupe thier $$$ invested in the device, which has so far been to say anything to anybody, to passify them. The device has given me many problems with not much help from Dexcom. Ask for a refund of my $$$ and I’m still waiting! Hopefully MedWatch doesn’t get to many reports about the device. Again, if your thinking about getting the Dexcom STS, hold off till something better comes along and insurance will pay for it. Right now the out of pocket expense, the devices reliability, and the support from the manufactuer are all in question. Best Wishes to all for a Happy New Year.

  19. Christa
    Christa April 26, 2008 at 10:08 pm | | Reply

    Hi Amy. I am a pump user (have been for over two years now) and am honestly thinking of getting off of it! It is more convenient than shots (only have to change the site once every 3 days) and can bring your sugars to a better level if you test regularly, but, BUT my complaint is that the pump needle (infusion set) goes in deeper and can scar you more than a shot would. Plus there are other frustrations involved…such as having to re-shoot if the needle gets bent or blood gets in it, the inconvenience of having your jeans waistband rubbing on the site (and occasionally pulling it out!) and having the thing attached to you at all times!! If your sugars are good for the most part, I would recommend staying on shots.

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