I should have mentioned this before - it is not uncommon for new podders to have high numbers with the first few pods, while auto mode is learning the person’s body: some people find it takes two or three pods to get settled in, although it could take longer.
Keeping in mind that I am a podder and not a medical professional, I had initial highs too and was tempted to change some things or make adjustments. But unless I blew a meal bolus (a pump can only do so much if you mis-calculate your carbs) I left it alone and it did settle in. By all means contact her endo for guidance. At the same time, try not to be too discouraged as that might be part of the process.
A pod shouldn’t hurt - you may want to have her doctor take a look (it might be more practical to send pics of the site immediately after she removes one, than go to the office). Again, as a layperson I’m thinking If the site of insertion is red it could be an allergy to the cannula - that does happen to some people with certain infusion sets. If there is bruising in the shape of the pod that could be an allergic reaction to the adhesive. I think some people on the forum have found using a barrier wipe such as Skin-tac is helpful - check with your endo to see if you need to avoid the cannula spot though. Or try the patches above.
Lastly, when she removes each pod check to see if the cannula is bent or kinked. I don’t think they get bent out of shape easily but if they do then additional training on insertion may be in order, or maybe that area simply isn’t “pod friendly” for some reason.
Those are just some thoughts that came to mind. Hopefully her numbers will settle in soon and you are able to figure out what’s causing the pain.
@arodric5002 Some insertions of pods may result in nothing, most a slight twinge, my last one hurt like hell on insertion but 30 minutes later wasn’t noticeable at all. This has been my experience, others will report varying situations, I’m sure. Once in a while a site may continue to be uncomfortable once in a while (like on a significant dose), others may ache at times for seemingly no reason. I think this is normal, our bodies weren’t intended to get punctured and have foreign body remain in the whole after all. All of this said, it should be “painful” continually, so if that’s the case follow the standard mantra (“If in doubt, rip it out!)…and then report the issue to Insulet. Sometime you’ll get some “enforcer” there that wont want to do anything for your sister, other times you’ll get the person that says, “I’m very sorry you’re experienced that, I’ll send a replacement, do you have enough on hand to cover it…” The end goal: Don’t put up with a painful site (perhaps you, like I did, hit a nerve!). At the same time, recognize there may be some discomfort with a site and if it happens again, perhaps don’t use that location for a while… Easy words for one that’s been at this a while, harder for someone new to it all…
One other aspect, recommend your sister do a little research on how to determine the best basal, bolus, and correction/ISF rates…in that order. It takes time for most to find the right basal rate and may change from breakfast, to lunch, to dinner, to sleeping time. Her Endo can estimate a good starting point, but that’s all it is a “starting point” and it’s more of guesstimate than science. There are numerous recommended ways for testing a basal rate, her Endo may recommend one. The point being: if she doesn’t have her basal rate relatively “dialed in”, the rest is harder to cope with as well and will be a constant trial and error. For example, if she has a normal sleep cycle, if her BG rises significantly (30-40 points? Different people will have different suggested amounts!) overnight, her basal rate is too low, if it drops significantly overnight, it’s too high. Basal should keep her relatively steady over a few hours, all other factors being steady. If needed, make a slight change and test again. Don’t make several changes (basal, bolus rates, ISF) all at once because she wont know what worked, if anything. Once she has a good basal rate, test the bolus amounts, then the ISF (Insulin Sensitivity/Correction Factor). I’m sure others here will also have similar comments/recommendations….
To add to what @Tlholz said about basal (background) rates: if you are using Omnipod5, in auto mode, the system determines how much insulin to run in the background, adjusting as necessary; so in auto mode it is not using the basal rates you program in. The system is learning what your body needs with those first pods.
In manual mode, the system constantly delivers the amount of insulin programmed for that timeframe, and that may vary throughout the day.
BTW, I found a Juicebox podcast that was very helpful as a supplement to the manual and my training:
Do consult with your endo’s office though as to basal rate/s to use if you do switch to Manual mode, and to make sure you have a good understanding of the Omnipod system. It may be overwhelming right now but you will get it!
@wadawabbit Thanks for that addition! Dorie’s right some of the more automated systems take an initial setting and adjust it as part of their algorithm! If those systems work well for her, obviously take advantage of them!
Hi @arodric5002 . Just checking in to see how your sister is doing. I hope her numbers are settling in after a few pods.
Thank you @wadawabbit and @Tlholz
I greatly appreciate your time and all of the information you provided us with! The beginning was definitely quite stressful because her numbers were out of control. However, I believe she is on her 3rd or 4th pump. The pump has definitely gotten better at correcting her blood glucose, and her endo did some adjusting. The goal of the pump is to keep her numbers around 110. She hasn’t reached that target yet, but for the most part she is staying between 150-200. I think that at this point that’s a major win. Considering she was spiking up to 300 at the beginning.
As to the insertion sites. We haven’t noticed anything odd. Her skin seems to be doing fine and no signs of allergic reactions or sensitivity. My sister says the pod doesn’t hurt constantly anymore. At times it does, for example when it’s injecting insulin. But I guess that’s normal. I think that with the first pod, we definitely hit a sensitive spot, and that’s probably why she was in pain.
Again, thank you everyone for all of your help in navigating this journey
I’m so glad to hear things are improving! I was my doctor’s first patient on the 5 (I’m not sure about prior versions) and I got my training before she and her office did, so my trainer was my “go-to” initially and she was extremely helpful. Yours might be helpful with some of the mysteries.
PS - another tip: if you ever start a new pod find that your controller will not connect to Dexcom (it can’t find the transmitter even after you’ve verified the transmitter ID) the old pod may still be connected. Put it in the freezer - yes, the freezer - or a very far away room. That should get rid of the system’s confusion.
Happened to me yesterday - I slapped a filled pod on without going through the first steps, had to start over with another one, and ended up spending quite a bit of time with tech support before we figured out the problem. Just one of those days… Duh!
@arodric5002 - just checking in to see how things are going with your sister. I hope things have leveled off?
Thanks for the tip, I had no idea sometimes the new pod won’t connect because it will still be connected to the old one. That’s great to know!!
We have been really going through it with the whole pod situation. My sister got sick, for the first time with the pump. These last two days her numbers were high (close to 300), but with the help of the pump, her numbers would be brought down. So my sister’s numbers were decent, considering she was sick. They were staying under 200. But today…ooh boy.
It all started when we changed her pod this morning. (It had expired). Everything seemed to be going fine, her blood glucose was around 120. After her breakfast, we changed her pod, and everything seemed to be going fine…until it didn’t. Her numbers started to spike over 300 quickly. We gave her corrections (suggested by the pod) but nothing seemed to be working. At some point, her numbers were nearing 400. As far as I can remember, her numbers had never been that high since she was diagnosed. It seemed like the pod was not doing anything. Mind you, at this point, her numbers had been over 300 for three hours.
After getting on the phone with her endo, we tested for ketones. It came back positive with small to moderate ketones. Shortly after my sister started to feel naesous. This was very alarming, considering her endo advised to take her to the emergency room if she started to throw up. After that stressful few minutes, (and advice from the endo) we decided to give up on the pod. Had to throw out over 150 units of insulin. Ouch!
We gave her an insulin shot to correct for ketones and high blood glucose and started a new pod. Her numbers finally started to go down. This makes me more confident in believing the pod was just defective. She is doing a little bit better. She doesn’t feel naesous and was able to eat her normal meal. However, her numbers are still close to 300. But I think it’s a win that she’s not in the 400s, and her ketones are gone. We will have to see how this night goes!
One thing I’ve found is if my numbers are over 300 (that’s my number - it may not be yours) no amount of insulin will even start to bring them down unless I drink plenty of fluid (sugar free of course). When I was young I was taught that fluid washed the ketones out of your system. Didn’t sound very scientific but it’s worked for me.
I do have occasional issues with a location: after all my time with diabetes (60 years this year!) I probably hit some scar tissue which kept the insulin from absorbing. And some locations just. May. Not. Work. I’ve found my left thigh is okay but most spots on the right one aren’t good. On Thursday I tried a location on my right thigh that I hadn’t used before and it was fine the first day. Yesterday I went to the gym where I have been experimenting with their Peloton bike - I started last week and since I’m brand new to it I’m doing low impact, short workouts (working my way to a full 15 minutes). Exercise usually lowers my numbers and they hadn’t gone high after my rides and weight work up to that point, but yesterday - ooh boy! I was around 200 a couple of hours later. I starting to feel hungry so I got a tuna wrap at Subway which I planned to eat once my numbers came down. I bolused, waited a few minutes (admittedly not the full 15), and took just a couple of tiny nibbles (really!), then set it aside. But they kept rising! I took a correction and waited. Still nothing.
It can take about 4 hours on other pumps (including Tandem with CIQ) for the numbers to start falling but it just wasn’t happening - so finally mid afternoon I decided it might be a placement issue and moved it. my numbers started to fall late in the evening.
When I removed the old pod I saw the cannula was not quite straight although I wouldn’t exactly call it bent either: the muscle movement may have caused that, which affected delivery; or the cardio along with the placement may have driven up the numbers - I may never know but I’ve decided I should completely avoid my thigh.
Ask your trainer about pulling insulin out to use in the next pod. Some people do it although it may not be recommended, but we each learn what works for us and decide on our own margin of safety.
Another thought🤪 - did your sister learn to use her pump in manual mode - where she would make her own adjustments and corrections for highs and lows? Closed loops - systems that automatically adjust for highs and lower - are amazing and I can’t exactly fault doctors who want to start their patients on them right away. But there was a time when pumpers had to know how to do that on our own and knowing how to use it that way is important.
Hi Alexa @arodric5002, if I may jump in now with an observation/suggestion; BTW, I’ve been following this conversation since it began, and see that Dorie @wadawabbit has been coaching you well, information that can be learned only through her Pod experience.
When giving a correction, especially for the very high reading your sister had, my suggestion is that you make these corrections with a pen or needle and syringe; continue to use the Pod calculator for the suggested dose. By using the method I suggest, you may be better able to identify if the Pod was the problem. The nausea she experienced is frequently a sign of glucose at a level higher than her body can easily tolerate, or, it could be an “infection” that caused her high BG - I’m not a physician. Loosing 150 units of insulin really hurts; there may be a way that the insulin “lost” in a defective Pod can be rescued with a syringe; I have used a needle and syringe to remove insulin from MiniMed and Tandem reservoirs/cartridges.
Alexa, aside from this new OmniPod adventure with your sister, I see you as a wonderful, caring sister. For the past 3 years I’ve read your posts and can feel the love you share with your sister - you are a beautiful person.
The standard saying with many Podder is “If in doubt, rip it out!” Or words to that effect. It takes some time to learn the when of it, more art than science! Also, know that you can re-cycle the insulin. Just use the needle from the new pod to “suck” the insulin out through the same whole you put it in. Eval for clarity/color, flick/remove bubbles, note the amount, and put into the new pod. You will hear some folks with dire warnings about doing this and I wouldn’t worry about small amounts, but I’ve not had and don’t know anyone that has had problems doing this. It’s your choice what you’re comfortable with…