Travis, please keep me posted on your friend. I went through a pancreatic transplant consultation at Mayo Clinic and decided it wasn't the right thing for me. I hope she does well with it and has a quick recovery.
I've never heard of the exchange diet but from what it sounds like, that was pretty similar to what I did when I was on shots for 6 years. I counted carbs but for each meal had to have say 45 carbs - no more and no less. So I wasn't given insulin for what I was eating; I was eating according to what insulin I was getting and I just had to make sure that I was eating the correct amount.
Ugh, Kim, I remember being in 2nd grade and not wanting to eat the pizza I had for lunch. I hid it under my milk carton and tried to throw it away, but my teachers noticed and made me eat more. I hated eating that year because I felt nauseous a lot and having diabetes didn't help.
"In the end, you need to do what's best for your long term health. Let's put it this way: if pumps are sooooo great, why don't all T1's use them?"
This is a really good point, spaghettio.
Nanniemae - I'm curious about how you're injecting your cgms sensors - mine came with this blue injector thingy that you put the sensor in and rest on your skin at the angle of its feet before injecting. Also, do you keep your sensors in the fridge all the time? I've not done this...
You said your Minimed 522 has 3 basal patterns - do you mean that you can set three different levels during the day? Or is this something entirely different? I have the 712 model and can program up to something ridiculous like 40 different rates during the day, but am wondering if you're talking about a different feature.
One of the things I haven't really figured out is the dual and square basals, in terms of how long to make them. My thinking has been, depending on the type of pizza I'm eating, when I set a dual bolus for 1/2 up front and 1/2 over the next 30 minutes, and 2 hours later I'm sky high, that I must need to guess a higher carb count per slice since I didn't go hypo at any point. But I'm interested in what you said about having a 2-2 1/2 hour tail with pizza. Is this because at some point you had a low from too short a tail and a rebound high later? Sometimes I wonder if the same amount of insulin, given for the same food but in different patterns - if you wind up with the same results, say, 3 hours later, no matter what you do, or if some patterns actually do result in a better ending. But considering how much error there may be in any glucose meter reading, errors in the actual pump equipment we use, changes in things like mood, health, stress, activity and so on, I wonder too if it's even possible to test the theory at all. (I've been spending a lot of time over the last 2 days reading this transcript from the FDA meeting on glucose meters from March - it's very enlightening into how much inaccuracy we're dealing with just in our equipment alone.)
I'm a fellow snacker, too. In fact, my pump trainer was looking at how I was dosing myself and made a comment about how I would never have taken so many little boluses in a row back when I was using needles (meaning, look how much the pump is doing for you now), but I used to do the same thing with needles. Needles never really bothered me. I was on the same regimen as you were - lantus at night with Humalog for eating. My main reason for switching was hoping I'd be able to rest easier knowing the cgms would catch my lows than just trying to rely on myself, which was resulting in me having frequent excursions in the 20s while on the job.
To everyone, I just want to thank you all for your responses. Many came in just before my endo appt yesterday, and helped me feel more empowered to talk about it there than I would have otherwise.
Combo bolus is tricky. Pizza is a 3-hour bolus for me, with a 70/30 split.
Thanks for the link to the FDA transcript - I'll have to read that here in a bit.
Kim - I'm really interested in hearing what you think about what you read in the transcript. It's over 400 pages long - yikes - but very interesting reading. I had no idea how the glucose meters currently on the market are operating in a 20% error margin currently, and wonder how many diabetics are aware of this. The page with the 2nd part of the transcript is here. Some of the things I found most notable I posted to my twitter stream.
I got through the first 42 pages, and my eyes are too sleepy to continue. :) I'll read more of it tomorrow - I did know about the 20% allotment of error, but there's a lot else to learn, as I'm reading.
The MM 522 and 722 has 3 seperate basal rates you can set. They all allow up to 40 something different rates during the day. These are helpful for people who work swing shifts work 3 days overnight, and 4 days off. Because they are up at night for 3 days and then up during days for 4 days they can set 2 different basal patterns for those different days.
It takes some getting use to using the dual and square wave boluses. I find with pizza and other high fat foods to bolus for about 80% of the carbs, but then have to add about 3 more units plus the 20% over 3 hours. If the wizard says to give 10 units I override with 13 and use a 3 hour square. The dual and square waves have no written rules or guidances that you can reference. I find you just have to see what works for you. I would recommend maybe taking more of the bolus with pizza for you upfront, and extend the square over a longer timeframe. It will take some tries to figure out if you need additional units above what you need for the carbs to cover the fats.
I was on the pump for a year (about 6 years ago). Prior to going on the pump I was on shots for 27 years. While on the pump I had site infections THREE different times. And they were super serious infections. I tried really hard to figure out the pattern so as not to repeat, but the time between noticing that the site was a little hard or painful and losing complete control of the infection was SO short! And the funny thing is that I have never really been able to do maintenance things very well (great for a diabetic, huh?), but I was on top of keeping things clean and changing sites appropriately (every 2-3 days). Once I had one of the sites cut into by a plastic surgeon, another time by an ER doc. That third time, I reviewed the previous year and all of the problems I had had, and I said "forget it." Took of the pump, went back to shots, and never looked back. I think I could have used a little more assistance and guidance from my endo in dealing with everything...nobody really cared that I was having so many problems, and no one seemed to care that I "dumped the pump" (endo, PA, nurses, etc.). Since that time, I have done a little research and have seen that there are some techniques for dealing with such sensitivity, including having a Z-pack on hand, changing sites more often, etc.. Plus I would assume that some improvements have been made in the last 6 years. But not having insurance right now makes it nothing for me to think about right now.
Jonathan - thanks for explainig about the basal rates. I really need to sit down and read that mountain off paperwork that came with my pump! My trainer told me I should just set temp basals for changes due to exercise, work, etc. It's nice to know there are other options for dealing with that.
And thanks for the pizza tips, too!
I would still use temp basal for when you exercise. Basal patterns are more for when you are on vacation, sick, menses, or have weird work patterns. I use a special basal rate when I am on vacation as I don't need as much insulin. I mirrors my normal basal rate, except it is like .1 U/hour less than normal.
Vacation????????????????? LOL
I don't want to bore you with my personal experiences but I found this information. They are currently collecting participants, this might work for you because it sounds like you are at a higher risk. Especially if you have hypoglycemia unawareness. They are looking for higher risk participants. This study http://www.youtube.com/watch?v=vHEeUzyo2QA showed that many participants have been insulin shot free for 8 years. (Islet Cell Transplant). The Shulze Diabetes Institute in Minnesota and about 10 other facilities are currently looking for additional participants for the Islet Cell Transplant. There are serious things to consider, you will have to take drugs that will suppress the immune system which will have risks and side effects. Watch the video and see what you think. They have FDA approval for their study. www.diabetesinstitute.org (612)626-3016
Good luck with everything and I hope you find something that works.
Kellie, thanks for posting the link to the video about the Shulze Institute's islet cell program. I think I may already be in contact with this university, actually, about another study....
What I'm really curious about is this idea of re-educating the body through islet-cell transplantation with no immuno-suppressive drugs, like they've been trying to do at the Diabetes Institute. The immuno-suppressive drugs scare me.
I qualified for a pancreatic transplant and went to Mayo Clinic for a consultation. Boy, was I glad I had done my research before I got there so I could ask more specific questions. The doctor I spoke with very much wanted me to sign up for the procedure, but in the process of the initial interview, he said the life expectancy of living with diabetes vs living with a transplant was probably a wash, and that the drugs would very likely leave me with at least one form of cancer, starting with skin cancer. I decided that, for myself, that this was a risk I don't feel comfortable taking. Better the devil you know, or something like that. But if they find a way to do islet cell transplants without the drugs or with less scary drugs, I'm all for it. The good thing about islet cell transplants is it's so less invasive than a whole organ transplant, and the idea of getting back even a few years of life without diabetes - well, who doesn't that sound good to?
Yeah I know what you mean. From what I understand, they have narrowed the immuno suppresive drugs to 4 specific ones which lower the risk. Then the drugs are lowered again once your body accepts the transplant. My only concern are risks of birth defects, so I am going to wait at least until after I have children.
@Jonathan Clark. Thank you for bringing up the question of what is the right type of insulin. I will remember to bring that up with my doctor when I see him this month. Perhaps a change of insulin will help me with my control.
@spaghettio - brilliant. Working/thinking the devices separately - pump v CGM.
I was diagnosed about a year and a half ago, and went on the pump last september. I started using a CGM in April. The pump has been so good for me, My basal rates are pretty steady, so the *almost* flat profile of lantus did not work for me, and I ended up very low often. I also am a snacker, and was injecting at least 7 times a day. At the time, I was like "injecting is fine. I don't mind Why bother going on a pump?" but I started to learn more about the increased control some people get and decided to try it out, and I am so glad I did.
The dualwave/squarewave/combo bolus can be tricky, but once i got it down it allowed me to eat foods i would never have eaten. I can eat white pasta! I don't often - I still get a spike at the beginning, but if I change my carb ratio from 1:18 to 1:16 and set a 70:30 bolus for 3.5 hours, I get pretty good results. For ice cream I use 1:16 and set a 60:40 bolus for 6 hours. I also use temp basals often - for drinking alcohol, for avoiding lows (if I see I'm at 80 and falling, I'll set a temp basal of -70% for a half hour, and then I don't have to stuff my face with sugar half an hour later), for exercise (slight increase if i'm doing anarobic or resistance work, HUGE decrease (like down to nothing) if I'm doing endurance stuff). I could never do those things on injections.
The CGM has allowed me to figure out things like the combo boluses much more easily, cuz I can actually watch the line and say - ok, so If I spike really high at the beginning, I need more up front. If I'm spiking at 4 hours, I need to extend the bolus for longer. If I spike a little high and then drop down some but not all the way to my target, I need to use more insulin overall. Anytime I use a combo bolus I raise my I:C ratio - it seems like I just need more insulin overall for those foods, but if I don't extend I drop low. The only time I keep my 1:18 ratio is if i'm using combo bolus for a longer eating time - like if I'm having a big dinner with my family, and I now i'll be eating over the next hour, I'll set the bolus to deliver over the first half hour that I'm eating.
I know a lot of people who have been disenfranchised with the medtronic CGM - I know some people for whom it works, but lots of people who have ditched it, complaining of inaccuracy, painful sensors, false alarms, etc. I use dexcom, and I love it. The sensor sit closer to your skin, so they're less in the way and they move less which makes them less painful. It's more accurate than minimed's, though still not perfect. I set the alerts to 80 and 200, and it catches almost all of my lows and all of my highs. occasionally I spike that high after eating a meal, and then it beeps and i think "okay, next time i eat that meal, I need to do something differently".
If you are mostly on the pump so you can use the CGM to help you avoid lows, but otherwise you don't like it, you could consider switching to dexcom (or navigator, although I had a friend recently who couldn't get more sensors - some sort of supply issue. I don't know if that was just her supplier or what) and using it in conjunction with injections. It would mean carrying around the receiver, but you wouldn't have to keep up with the pump anymore. Sorry I don't have any more solid suggestions. Good luck, whatever you choose to do.
Been using insulin for more than 20 years
15 of that on injections. Last 7 on a pump.
After reading through this one thing comes to mind.
If you "hate" the pump or the syringe or the diabetes you wont have success with it. Get some help. Talk to someone that can help you work through the troubling issues so that you can take a balanced approach to whatever solution you select.
In my opinion the mental impact and strain of the disease is completely ignored by most health care workers
You have to understand MANY many things to get ANYthing to work correctly with diabetes. By reading this thread its clear that MANY things that have NOTHING to do with the pump are being blamed on the pump. You have to be relatively precise to get the initial pump settings figured out. Once you are CLOSE then it makes things much easier. There is NO way to be as precise with shots as you can with a pump.
Those of you that have days where you BG ranges from 80-120 - You are my heroes. Not everyone can achieve that level of consistency with ANY delivery method or any diet.
The 20% accuracy of BG meters has been the standard for many years. While I agree that it would be nice to have stronger standards, will it really help that much since few things in diabetes are that precise ? Are we willing to pay more $$ for more accuracy
Just my $0.02.
[quote user="Doug"]
Are we willing to pay more $ for more accuracy
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i'm willing to pay more money for more accuracy. that would mean i am able to have better control with less risk of complications and less impact on my health/overall quality of life. even if it costs me more and i have to cut back somewhere, i'd be all about it. maybe i'm the only one, but the idea of better control is always a good idea to me.