Ok, I know, I know I am opening a huge can of worms. But I have to talk about it and my ongoing frustration with people thinking they have all the answers.
I have meet many people at my place of employment who see all my diabetes hardware. I wear it all proudly and never try to hide my diabetes.
There is a dad with a son who was diagnosed a few years ago and he is in every once in awhile and we chat. He has always been very interested in my pump and he thinks it is the answer. I have tried to explain how it works and how much work it is.
So he was very excited to tell me, they decided on an Ominipod. Main reason is no tube so the siblings wouldn’t be able to pull it out . Three boys, I guess that could be a very rough household to grow up in.
But my concern is how they came to the decision that this pump or any pump is the treatment plan.
He said they put all the pumps on the table, they walked through all the features and than sat back and asked which one each wanted.
Really? This is how a family is going to make a decision about this? Don’t pump companies allow a trial to see? Can’t people try each one out to see the benefits or disadvantages? And he never once talked about all the work. I mean his son is not really in on the management of his disease. There isn’t much carb counting, or testing or pre bolusing. I just think this is like so many who go on a pump thinking it is going to “fix” everything. Not realizing how much work they can be. For me now after 27 years of pumping, I don’t find it very intensive because I am use to everything, I know what to watch for with a new infusion set or bad insulin or a connector that hasn’t connected right or having to get up in the middle of the night if I did an infusion change before bed.
Yes, things are much better now with all the technology and sensor connections.
I guess as usual, my concern here is this is a major children’s hospital and the communication leaves much to be desired. Are these families getting the reality to this treatment plan. There is so much that is very good with a pump but there is also so much that can go wrong if everyone is not on top of it.
So, while I know there is no answer to the question to pump or not to pump, but wow, I think a real,life chat about what pumping is like could be very helpful.
Ok, I know, I know I am opening a huge can of worms. But I have to talk about it and my ongoing frustration with people thinking they have all the answers.
Number one suggestion from me,for prospective pumpers is to read John Walsh’s Pumping Insulin from cover to cover–at least twice. If one is not willing to learn the fundamentals, is not going to carb count, is not going to test often, than the results from pumping will be either equal to, or worse, than MDI.
Yeah his book on pumpin and using insulin are a must for everyone using insulin. But my concern or frustration is how little is shared with the work it takes to be a pumper. I feel like they should have someone who uses a pump in those sessions when they talk about pump therapy. They need to know all the great things they can do but also some of the added work they may cause.
Yeah - I liked that one (Walsh).
I also liked Ponder’s Sugar Surfing although his constant references to real surfing (like in the Ocean) were extremely annoying but I picked up good stuff from that one also even though we really don’t follow the entire concept.
I actually did not find it a huge difference. We spent the first year after diagnosis on MDI (syringe - never used pens) then switched to a pump (Animas Ping). The learning going on MDI (from nothing) was huge.
The switch from MDI to pump was not a huge deal.
Obviously everybody is in their own situation so one person’s experiences are not likely to mirror another person’s experiences.
If it weren’t for liability issues, I’m sure pump mfgrs would be glad to let prospective pumpers try out their pump for a short time. I have never been able to wrangle a loaner from a pump rep.
When I think back to my initial decision to pump, way back in 1987, with only three years of MDI experience, I can see that I was ignorant of the many weaknesses of pump therapy. I learned a lot, however, just by doing and paying attention. I didn’t see the pump, even back then, as some panacea that would make my life so much better. I remember that I thought the continuous basal drip of the pump was more akin to a healthy glucose metabolism and that seemed like a step in the right direction.
I agree that some better preparatory education would be in order. Learning by doing is still a way to learn. The important thing is that the people involved maintain an attitude of being curious and open to learning.
Seems they would be simply bolusing from omnipod replacing MDI injections. They assume the pump basal will simply replace the MDI long acting. How old is his son?
I know some kids get interested when they see others at D-camp using them, but before that don’t want them.
I’ll offer my contribution here…
I first was diagnosed with T1D in 1996 when I was 12…I was on MDI and used “N” & "R for a few years, eventually switching to Lantus and Humalog. I never had a problem staying in good control throughout my teens and even into my mid 20’s. Then I found entering into my late 20’s that my Lantus wasn’t working the same…so I tried splitting the dosage…had some better results, but still not like I was used to (Keep in mind, my whole life I did not have good insurance coverage and could never afford the costs to upgrade to a CGM/Pump setup). Once I finally was able to get decent insurance, I started looking into the many different Pump options and CGM options available…I also asked for help through my doctor on the decision and never really got any good advice on the choice, rather an "all will work, but some have better features than others…you will have to research yourself and decide which to go with…that being said, I would lean toward “brand X” and “brand Y” as alot of my patients are happy with them. So, after doing my own extensive research over a 3 month period of time, I finally settled on a Tslim and a Dexcom G4. It’s been a great decision and has simplified my management of T1D. I say all that to say most of us T1D’s are in the same boat with not getting much help on “big deal” items like pumps/cgm’s…most all you ever get is the typical sales pitch from the manufacturer’s trying to push there product to you. But ultimately, I have found through forums like this and doing your own research that you find out more/better information.
For me the pump is best, does it have problems and is it alot of work, yes. But I can shut off insulin for lows which is life saving and adjust it whenever I want to, do tiny boluses etc. All of this makes life more livable. i researched and found the tslim had the only system to protect against overdose which was a major concern for me. I had no clue how much work it is when I started but I’d never go back to mdi which was truly horrific.
Next step is beta cell implantation hopefully, without anti rejection meds. That would really give me my life back.
Yeah, I also love my pump. The flexibility it gives me is wonderful! If running low and need to fast, just turn it off. Going for a run, lower the rate or turn it off. Want a big huge piece of pizza, fire up my extended bolus! Love it.
But it is a lot of work. I of course don’t think about it any longer because I have been doing it for so long. It is second nature. But I am always ready for worse case scenario. Having extra infusion sets at work and in the car or on me (depending on where I am). I always have an insulin vial and syringe with me just in case. Ketone strips are always in the house, just in case. With every infusion set change, the watching of the CGM to make sure things are working correctly. Or back before CGMs, having to get up in the middle of the night if I had to do a change before bed (which was frowned on!) Basal testing, not just one day but multiple days to see if there is a pattern. It is a lot of work. But like I said, for me now, it is all second nature. But for someone thinking about it, there is a lot to think about good and bad. And I think the extra work is not always talked about.
Timely thread as I am contemplating this for myself. I am a T2 dx in 2004. Metformin, diet, and activity was adequate until I was pregnant in 2011, earlier in 2011 I also lost a kidney and its adrenal gland due to cancer. I was placed on insulin due to rising BGs and A1C and responded very well-healthy pregnancy and baby. Went back to Metformin, diet, and activity routine which worked until it didn’t. Diabetes is unfortunately hereditary and many family members have refused to take proper care of themselves so I’m aware of the complications.
I started basal insulin at the end of 2015 and added bolus insulin three months later in 2016 because my A1C and many BGs were still crap. It was nothing short of life changing but a huge commitment to stay disciplined about testing, taking insulin, eating, and everything else. I went from 11.0 A1C to 7.0-7.5 consistently. Doc suggested I’d be a good candidate for a pump, I said let me think about it as I am ok with MDI.
Formulary changes this year have been a challenge but I am stubborn and dedicated to figuring things out. I also learned about CGMs and got a Dexcom G6 in October which has improved my diabetes management. Most recent A1C is 5.9 but my total daily insulin dose is now 140-150 units between basal and bolus plus daily Victoza.
Now that I have good consistent control and understanding of my diabetes I am contemplating transitioning to a pump. I view it as a tool to be more successful at managing my diabetes, not a cure-all or fix it. I have excellent health coverage so the OOP cost will be minimal.
I am thinking about the Tandem T:Slim X2 as it works with the Dexcom G6. Any thoughts or personal experience is greatly appreciated.
The X2 holds max of 300 units although you can not get all of it usable. So if you are using 150 units per day, you probably would not be able to get a full two days.
However the infusion set and the cartridge can be changed independently of each other. So a bit more scheduling, but you could do a 3-day infusion site swap-out and a 4-day cartridge swap-out with every 2 days, you take the cartridge out, re-use it, re-fill it and put it back in.
Or something like that.
You would at least want to consider if that would be feasible or too much aggravation.
@Tim35 150u is max, it’s often less. This summer I had to switch from Tresiba to Toujeo and it wasn’t a 1:1 switch. It takes 75u Toujeo to do what 56u Tresiba did and I need about 1.5x more Humalog with the Toujeo than I did with the Tresiba.
My doctor feels that I would use less insulin overall with a pump because it’s dosing continuously and I’ve both read and heard some folks experience the same. I realize that everyone is different. I have a pretty routine schedule so I don’t think refilling a cartridge would be problematic if it’s set up to do that.
It is not “exactly” setup to do that. It is not in the manual and pretty sure it would not be “proper” procedure. So you would have to decide if you were comfortable with it.
I think it would be fine but you have the only opinion which counts when it comes to you.
When I first tried the pump in high school, they were s lot more vigilant with the training and expressing clearly how much work it was. It still didn’t work for me, all sorts of issues. When I asked my doctor about it again in 2015, I had one within a month with minimal training. I knew enough from my initial training and the internet to figure it out for myself, but it was definitely a lazier approach by the medical team. Not sure if the difference was the insurance (first time was Kaiser, second was blue shield), or my age (15 vs 29), or the decade that passed in between. It worked much better the second time though, so I think it depends on circumstances whether it’s harder than mdi or not because if it had been harder than mdi the second time I would have quit again. I heard that Kaiser no longer offers pumps, but their training is why as t saved me from lazy explanations the 2nd time.
When I saw the other kids at diabetes camp with their pumps, I was initially very scared. Not sure why, but watching them insert the pump site seemed like it would be more painful than a normal injection to my 11 year old self. And then someone got their site ripped off while rock climbing and I resolved to never wear a pump. I changed my mind.
I don’t use a pump because I am one of those people who would probably stay asleep when there was an issue with a pump site rather than drag myself out of bed to deal with it. I’m a heavy sleeper so it’s really hard for me to wake up even for high alarms, although strangely enough my own body will wake me up out of a dead sleep for lows. If I were going to go on a pump from the current offerings I would choose the Tandem X2 with G6 since I have only heard good things about it so far.
I am happy with my current regime of Tresiba and Afrezza which cuts way down on shots, lows, time spent high and just plain worry.
The first time I ever saw an insulin pump was at diabetes camp and I thought it was interesting but at the time didn’t ask any questions so didn’t see the point. Also I find it hard enough to constantly wear a CGM (but I love all the data) let alone a bulkier potentially catchier device.
For me there is no pizza or anything like that or even exercise really as it is not manageable even with a pump but the terrible lows are at least manageable and less scary now and highs are easier to manage now as well but with more the dka issues. I still do inj though and carry around everything and more with me. So I’m carrying more than with mdi. Inj is an important part of pumpimg because inset sites will not hold up to even a minimum amount of meals and corrections etc. over a certain number I inj and it helps keep bg more stable. Of course then for me I have to adjust to insulin action via inj which is much more volatile and crashy.
Since my diagnosis in 1965, I had been using the vial and syringe with N and R until 2014 when I had cancer surgery. While in the hospital, I met my now endo. After recovering from the surgeries, I made an appointment with her. She said she didn’t like the OLD insulins and switched me to lantus and humalog and put me on the Dexcom G4.
I had problems with the both humalog and lantus. I also was not counting carbohydrates. I was doing my insulin based on my blood sugars and what I ate. It was how my parents were taught and how I caught on. Nobody taught me how to do my insulin, I just figured it out. My A1C’s were only once 8 in all this time.
In 2015, I was still having problems with the lantus and humalog. In the past, took me a few weeks to get used to a new insulin. She had convinced me to count carbohydrates.
After talking it over with my endo, we figured putting me on a pump may help. So I made an appointment with a diabetes educator at my endo’s office.
I knew, after doing my own research online, which two pumps I was leaning towards. I got to look at all of the pumps, while meeting with the diabetic educator. I was able to try putting a few of the infusion sets while there. I must have spent over an hour with her.I didn’t get to bring a pump home with me. I never met with any pump manufacturer representatives. After I received my Tandem T:Slim G4, I returned to meet with the diabetic educator and she helped me set up the pump, fill up the cartridge and put on the infusion set. She was surprised that I had the CGM up and running on it.