So, thought I'd share my new endo - pump experience...and the saga (my saga..ugh!) continues. Was supposed to restart POD on Tuesday, got there early, pump nurse said she wanted to wait, wanted to make sure I was indeed TRAINED on Omnipod, had to call rep...ah, OK...'yes, i've been trained'. So, we did Thursday, go in early 7AM, get POD on, up and running, she goes over everything (very thorough..OK..here we go).
Then, Endo comes in and gives me an hour plus 'speech' on dangers of insulin pumps, etc..and starts telling me all these horror stories. I conveyed and reassured that I'm very aware of both the power of insulin and an insulin pump, blah, blah, blah. Then he says, "So, we require a pump buddy (it's also listed on the pump sheet they gave me), someone who will come in for at least a week, check on you, check your blood sugars and look after you while starting pump...someone who can be there for you all hours of the day/night." Hum...OK, well my husband is in London right now for at least 3 weeks. Below is listed on their insulin pump instructions:
"You must have a 'pump buddy' who can test your blood sugars and help prevent or take care of blood sugar problems. A 'pump buddy' should check on you often in the first weeks of starting pump."
They call and actually validate that someone is actually doing this pump buddy task. So, I'm back to old endo and hopefully finding a pump nurse. This is ridiculous. I have a CGM. Again, I realize 'safety' issues, no one wants to keep me (us) safer more then me (us)..but some endos' fears of lows just becomes ridiculous...and they should not put fear into their patient's either. ugh!
Are you serious ? A pump buddy ? Hey Sarah, if you lived closer, I'd be your pump buddy. But I doubt very much they actually wanted another PWD to try and keep you safe at night. I don't understand why you need a pump buddy to check your blood sugars ? Can't you do that yourself, doesn't the dexcom do that for you ? I sat down with my CDE on Wednesday and we went over my pod settings since I have changed them all since she first set it up. My target blood sugar is 85 all day and all night. She kind of freaked out until I explained how the pod would never allow me to get anywhere near my actual target of 100. It is programmed to not allow you to go low. I also pulled out a copy of a normal, non-diabetic CGM test that shows a "normal" person spends 5.2% of their time below 70 mg/dl, but NEVER goes above 180. She countered with her accounts of 3 patients who had seizures when they had severe hypos and 2 patients who hit trees with their cars when low. So I said 5 patients in how many years ? Hypo-phobia is literally paralyzing medical professionals ability to help us help ourselves to maintain normal blood sugars. My visit with my CDE seemed to go far better than yours though because at the end she said you obviously know what you are doing and I am not going to change any of your settings. That you had an endo talk to you for an hour about anything is quite remarkable though, it's a pity nothing useful was said.
I had exactly the opposite experience, omnipod, brand new pumper: When it arrived in the mail, against my "team's" wishes, I programmed it and slapped the damn thing on. By the time my CDE (also the O-pod educator in the office) was able to meet with me -- 3 weeks later -- I was a veteran.
I even taught her a few things about the pump she didn't know.
I certainly wouldn't advise anyone else to do this. I only did it because I am generally a total tech geek, read the manual PDF twice before I got the pump, had been working on all the settings parameters already for the prior two months as part of refining MDI, etc. etc. etc.
My point here was not to brag. Rather, it was to illustrate the wide range of patient capabilities, and how woefully inadequate the one-size-fits-all approach is to these things.
But, in the end, I don't blame the health care industry.
ah, thanks clare. I don't even have that many lows and yes, I have a CGM and handle my lows...but this was just over the top. Again, I felt like I was being talked down to. They didn't even want me to go lower then 100. OK, that's fine for a pump start..I'm OK with that for right now. Anyway, I left the office and pump nurse and I talked afterwards via phone and I said, 'this isn't an option for me right now...and I can test my own blood sugars...I think I'll see someone else.' Endo called me this afternoon...but it's too over the top. Unless a child, why would an adult need someone to be checking on them, what if someone lives alone, we have to be able to function with this disease autonomously without them putting the fear of god in us.
That is SO awesome about your blood sugars. I was gonna reach out to you and discuss again your pod experience..so glad you posted. you encourage me everyday, as I know I'll get better control once pumping. good job, clare! :)
yeah, blame lawyers..ha. you're a type 2, no? our bodies (type 1's) run differently and we're 100% dependent on insulin. it's not the tech part of any of this, the pod (even revel) are very user friendly, i have no problem with the 'mechanics' of the pumps. I can also be very insulin sensitive and have some weird stuff happening in middle of the night, etc...so I welcome someone to follow me and guide me. thanks.
Sarah - How frustrating! As if someone has to tell you, a grown woman with thousands of hours of experience with insulin and T1D, that insulin is powerful and dangerous. Why was this whole idea of a pump buddy sprung on you as a last minute delaying tactic?
I agree with Clare, that your endo seems paralyzed with hypo-phobia. He has an unreasonable fear of hypoglycemia. Doesn't he think that we diabetics understand that insulin can and does kill diabetics?
It's ironic that he gets that endocrinologists are woefully unprepared to actually give us all the training that's required to administer insulin well. And it's not just the fact that there's not enough hours in his day.
At some level they must sense their inadequacy in the art of insulin use. All the textbook formulas and action curves of various insulins must be modified to work in the real world. Our sensitivity to insulin can change throughout the day in response to a complex interaction of many factors. It's a dynamic game where the rules can change in an instant. We must pay attention and act accordingly.
Life is hazardous. Insulin can kill. We all must make peace with this threat so we can move on and live life. We need insulin to live. We will make mistakes. And some of those mistakes will be serious. But if we remain paralyzed in fear, we'll never learn what we need to learn.
so WELL said, Terry! yeah, i should have been told this (their pump requirements) prior to putting on a POD, wasting a pod and 100 units of novolog - thank goodness I have good insurance. I almost feel like they do this not only to protect themselves but to put the 'responsibility' back on us, which, in reality it is. Agreed, we know insulin can kill but we as type 1's have no option, without it we die anyway. I thought their role was to teach us to 'respect' insulin and this disease we have, be aware, etc...but not to scare us all the time, what's the point? I am frustrated. Then this endo asks me to give him a 'hug' while I'm leaving his office, totally pissed off. It's like, guide me through this but leave me alone in a sense too. They need to also not blame the patient (not me specifically but in general) because they're damn well aware how, as you say, changing and ambigious type 1 diabetes can be and IS!
I know that endos, CDEs, and pump nurses all want what's best for us and at a minimum, keep us safe. Maybe I'm a bit touchy about this but I would not react well to a medical professional telling me that they were not going to change any of my pump settings. I see medicos as consultants; they make suggestions, I implement as I see fit. I am the final and only arbiter for my pump settings. It's very personal for me; no one else has any skin in the game!
Diabetes is unlike most other diseases. It is the patient that makes the moment-to-moment endocrine decisions. The doctors are just not available to help in that way. We see them three or four times a year. If they take a patronizing stance and speak down to us, don't they see how irritating this is? We are not children!
In my case, I have over 250,000 hours of first-hand experience dosing insulin in the real world. How many hours of professional experience does the typical endocrinologist have? Including medical school, internship, residency, specialty training, professional meetings, and all their clinical hours. It would take them 125 years to equal my direct experience! My first hand experience is one step closer to reality than all their book learning and talking to patients.
I know that most medical pros just want to help us do well. But they need to treat us as equals, not subjects.
again...so well said, terry! I'm really starting to dislike any type of medical interaction, at this point, especially D-Endo related. I sometimes just feel like telling them to "F OFF"...cause I'm the one doing this everyday (we all are) and have never had an A1C over 6.7% except when diagnosed, of course. And stop telling me to test 4 x's a day and then telling me I'm not testing enough...what the heck! I'll test as much as I want, what I'm comfortable with and what gets me through the day and night and gets my blood sugars down. My goal, to have as close to 'normal' blood sugars (where I feel like a functioning healthy human being - and NO that's not in the 180's or 200's) as possible without too many lows. I'm not keeping blood sugars high to appease their fears.
I would think that if the lawyers were to blame, *everyone* would "need" a pump buddy but I've never heard of this anywhere else. I have to think that it's the doc. I'd be intrigued by an hour appointment but I agree the pump budddy sounds over the top. Good luck with all of this, I hope it doesn't get in the way of your pumping!
I agree completely Terry and my CDE is extremely reasonable to deal with and actually the whole visit was quite positive. Having only started pumping in late May there are still many things that I don't instinctively know. We are not your "run of the mill PWD" though. The patients our CDE's and endos see are not motivated, not working their butts off to maintain normal blood sugars, and are getting complications. My CDE told me about a 20 something girl she had just visited in the ICU, 3rd time in DKA in 3 years and the 30 something lawyer with a wife and 2 kids and an A1C of 9% - on a pump but doesn't check his blood sugar. She asked me if I could help her with a presentation she was doing for primary care physicians about how to treat PWD because there is such a shortage of endos the majority of newly dxed PWD are only being treated by their primary care physicians who are woefully unprepared to help and teach. I understand how incredibly hard it is to treat PWD and she realizes and respects how much time and effort I invest in keeping myself healthy. But again the nagging hypo-phobia is hard to vanquish.
there have been pump deaths due to pump malfunctions so I guess there are a lot of liability issues involved.. but doctors are usually pretty well protected from liability
They're not protected, they're insured. There was a case in Seattle, I think the decedent's family settled for $3.8 million. I can't find anything about it right now as it was a couple of years ago but I recall from reading about that online (probably here...) that the settlement was split between the hospital and Medtronic. Not really a good case to try but I'd certainly raise the specter of "user error" if I were looking at something like that. It can be a very fine line I think.
I agree, BUT part of the reason we aren't the typical patients our doctors see is because the medical establishment sets low expectations and teaches them to be pretty crappy. I mean the ADA class telling type 2s to eat 50-60 grams of carbs per meal, and that it is okay to drink soda and eat cake as long as you stay without that goal. Cripes I haven't had a can of sugar soda since the day I was diagnosed.
Well said. On the Joslin clinic sheet that I used to get from the endo after a visit up top it was listed your A1C for this visit was ______. This value reflects your average blood sugars over the past two months. The range for a person without diabetes is 4.0-6.3%. Most people with diabetes have values above this level.
HgA1C 5.5 - 7.0% excellent 7 - 8% good
8 - 9% fair
>9% consistent with high blood sugars
So I basically aimed for anything less than 8 because I figured that was "good to excellent". There is such a lack of information and so much bad information that it's a wonder any of us is living a happy, healthy life.
I have set my own expectations now mostly because I have to be accountable to me and they are a bit more stringent than just "good" enough.
pump nurse didn't turn auto off feature on. again, anything can happen, we can't be afraid of all this stuff, ya know. i, however, would never start or wear a pump without a CGM, that's just what I feel safe with.
I wonder if Endos really don't like managing or dealing w/type 1's, not personally, but the 'disease' itself. I guess I have been fortunate in a way that they have been 'generous' with their time w/me, but that's what they're paid for too. Again, they need to give us credit, none of us wanted or wants this nasty disease, we didn't ask for it, would certainly give it back anytime, any day. It is up and down, unsteady, unreliable, uncertain, unresponsive and many other things..but that's the profession they decided to work in, ya know. I'm just about ready to slap on a pod and do it myself but just don't want to get myself in trouble..ugh! Onwards and upwards I guess. I'm glad we have this site, grateful to all of you type 1's who help us keep our sanity...ha! :)
Ah thanks Shawnmarie! I guess I'm not quite in the ballpark as it looks like they're still trying to find out what Medtronic paid. That's quite a bit of money although I also read about a verdict, now appealed, where the estate of a mom who was electrocuted won $109 million from a jury.
Re the endos liking us, I think that they would say the challenge is in the reporting. I try to log my food a lot, as much for my pantsometer as the glucometer, but it is always challenging, I run into something yummy with a bunch of chopped up stuff in it, chili or something and totally just guess, or look up Wendy's chili and just use that.
When I got my first pump we had to go into a pump class for three days. It was in a hospital setting and we learned all about the pump, nutrition, testing, counting (then it was exchanges), and we wore the pump with saline before we ever went in there. Then some years later a trainer came to me which was great as the pump was quite different. My newest pump which was not so different required passing an online test system that verified I'd learned all the pump functions and got a passing grade or I would not be able to get the supplies for the thing. I have never heard of a pump buddy and think that might be a bit extreme,but I do think that knowing all of features, functions, are ever important. I have seen time and time again where folks don't know that a question can be answered by looking in their own pump manual. Does the POD have one?
I thought that you already had some levels of pump training since this is not your first run with the POD and you use a CGM. And yes for sure we are the owner of responsibility for the pump use and being trained to use the thing. I would never blame my providers for my mis-use of any of my D products. A CGM is not a requirement, I have done well for a long time without one and have no complaints with checking the old fashioned way.
I have never worried that my insulin would kill me. If your doc does not respect your ability to manage your diabetes then I would find a new one. If you are struggling to manage your diabetes then maybe the reason is solid. The hug....not so much!
