@Rphil2, I would certainly be angry, too. I think there’s an advantage being on a pump and they need your permission to disconnect it.
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When I had stents put in at Yale New Haven they gave me a form to sign saying I was managing my diabetes. Each morning a diabetes specialist came in and reviewed my insuling and BG results. Suggested basal changes. Worked very well
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@Andy1 – Sounds like that is a system that would work well for many of us. I just wish all the hospitals could change to a diabetic friendly culture. I realize that some patients just want the hospital to “take care” of the diabetes and aren’t concerned about closely managing blood sugars, but that attitude should not set the agenda for everyone.
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I wonder if there is a difference between a teaching and a non teaching hospital. Several years ago, I was treated at a non teaching hospital and they would not let me manage my insulin. I used that experience to be proactive in arranging my self management for my surgeries in the past few years. The first hospital was a non teaching hospital and I never went back. My recent experiences have all been wth teaching hospitals so it just makes me wonder if that could make a difference.
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The hospital is in control of your insulin dosages while you are there.
Ultimately, the insurance company dictates protocol by financially penalizing them if a glucose < 70 occurs.
Recall that is is only very recently (during covid) that CGMs have been considered acceptable BG measurement devices during hospital care.
Very interesting topic of conversation, Terry. Can’t wait to listen to it! Thanks for posting.
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I think this is generally true. My recent experience differed, however. I arrived at the ER with a stroke and wearing an insulin pump. The intensive care unit nurse did offer to remove my pump and “let them take care of my diabetes.” I refused that offer and I controlled my insulin delivery for my entire stay at the hospital as well as the duration of the inpatient therapy program.
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I’m glad that pump held out that long, or that you were able to get supplies. I generally have a bottle of humalog, if nothing else, so I can correct. I hide it and don’t let them know it exists, otherwise they will take it away.
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Over the past 10-15 years I had a number of planned, non emergency surgeries (appendix, gallbladder, cardiac stents.) My endo wrote a plan stating my pump and cgm were to stay on. A sliding scale was provided in case anything went wrong and I wasn’t capable of managing my own insulin. Once we were in agreement, I printed multiple copies and she posted the instructions into my electronic medical records. This worked very well. It seemed someone was constantly telling me that my pump had to come off. I would just have to say “Look in my chart for the endo’s instructions.” It was great.
The problem came when I had an injury to my left arm and it was in a cast. While in the hospital the pump infusion set needed to be changed. I couldn’t do it with one hand so I had to ask a nurse for help. I had been through a pretty traumatic accident so I wasn’t paying enough attention and mostly sleeping. Long-story-short, the cannula was bent and even though they were sticking my finger every few hours no one was actually looking at the values. I went into DKA in the hospital. Once they realized I was in DKA, my pump was removed and I was put on an insulin drip.
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I’m so impressed that your endo helped in this way. We, as long term T1Ds who have paid attention, don’t have the credentials that other medical professionals rely on to determine if any advice being offered is reliable or not. When an endo sticks up for your interest, it’s heart-warming to me. They provide the credibility that we can’t.
Your broken arm with a cast when paired with a bent cannula story is scary.
When patients complain about the diabetes ignorance of some medical professionals, this story illustrates just why that lack of competence matters. Observing consistent rising of blood glucose when it marches toward DKA may be caught and averted. I’ve done it myself, more than once.
Anyone who inserts a new cannula must be aware of the risk, however small, of the new site not starting normal insulin absorption and carefully watching the post insertion BG changes is the key.
Their removal of the pump in order to treat your DKA makes good sense. Did they allow you to re-establish pump therapy once the DKA crisis was over?
Thanks for telling your story!
I had with me a go-bag that I had prepared with all the diabetic supplies that I needed. I even remembered to take its companion baggie of insulin vials and pens that lives in the fridge. Luckily I was conscious enough to keep a watchful eye on my go-bag through the ER chaos. This is where a pre-arranged accomplice could provide a valuable service.
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Once the DKA situation was resolved they wanted to just release me from the hospital. I told them that I wanted to get back on my pump before leaving the hospital and do it first thing in the morning. I wasn’t comfortable with how smoothly the transition would go from the drip back to the pump. My body had been through hell from the hematoma, emergency surgery and DKA so I was a little shell shocked. I had to really push hard for this, but they finally agreed.
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I wonder what the rationale is. That you are not eating for x number of hours, and that you could go low? But with surgery, there’s stress, which to me would mean your BG would be trending in the other direction.
¯_(ツ)_/¯,
These conversations are very interesting to me as a nurse! I almost feel like I’m eavesdropping!
Some hospitals appear to have guidelines, while others seem to have firm policies.
I’ve had a couple of hospitalizations in the past few years and one was a standout for the worst ever. I was admitted to a hospital’s mental health ward for a week and the diabetes treatment I received was the absolute worst experience that I can remember in a long time. As well as being a Type 1 for 40 years since I was 2 years old, I have had celiac disease and live a gluten-free lifestyle for the last 25 years.
- There was no endo on staff at the hospital, which did other things besides mental health, and even though the hospital was a chain with 8 hospitals in the town they couldn’t consult with an endo in the chain. They knew where I was being seen but I don’t believe they ever consulted them on my treatment regimen.
- My regiment was considered aggressive by the regular/family MD that saw me, and they had to see if the nursing staff could work with carb counting as it seemed foreign to them.
- I had to provide my own Tresiba insulin as their pharmacy didn’t have it and I didn’t want to go back to the Lantus/Levimer insulins which I didn’t find worked well for me.
- I had to fight them all of the time for the amount of Humalog correction or mealtime bolus to take. At 206 mg/dL they wanted me to take a full extra unit for the correction! The staff wasn’t able to count carbs efficiently and so I had to argue all the time to get what I wanted for a dosage.
- The kitchen sent up dressing for a salad that wasn’t GF and I suspect had numerous options on their “GF” menu that were not GF. This poisoning as I called it took me two days to recover from. My stomach was torn up.
- I’ve been in a treatment process for diabetic retinopathy and I have been getting a series of injections in my eye. Towards the end of my stay, I had a flare-up where my eye was cloudy and I was concerned about retinal detachment. There was no ophthalmologist on staff and no one on the nursing staff or medical staff cared that my eye was seeing cloudy. For two or three days I was like this. I had to call my doctor’s 24-hour emergency line and made an appointment to see them the day I was released. Fortunately, it wasn’t a detachment but a flare-up of the retina.
- On the last night of my stay, I was low before dinner, took two apple juices and ate dinner. They were being ultra-conservative on treatment as they didn’t want me to go low again. We tested after dinner and I was in a normal range but they refused to give me my insulin for what I ate. I went to the group session for an hour, tested afterward at 230ish, and was refused to be given my meal bolus as they were having “Shift Change”. They were to notify the oncoming nurse who was to do this injection. An hour after shift change came meds time and being ignored my insulin for this amount of time made me super upset so I didn’t line up for meds. It took my nurse another hour to come to find me for the injection. By this time I was 340 mg/dL! I did get aggressive and was yelling at the staff about their lack of concern and timely attention to my known chronic health conditions. It was three hours after I ate that I was given my insulin. By this time their computer wouldn’t “allow them” to give me the meal bolus, only a correction bolus. I stood my ground and said they would either give me what I want or no insulin at all.
- After the incident of being denied my meal bolus, I requested to be woken up and tested at midnight and 0300. To help my roommate sleep this night I took my pillow and blanket to the main rec room near the nurse’s station and slept on one of their sofas. That way they didn’t wake him up with lights to do the BG check and be a reminder in their view that I needed these. Unforently they didn’t wake me up once until 0600 for a BG check. Their response was they were busy with other patients and because I was so upset the night before they didn’t want to upset me by waking me up. I was more upset at 0600 because they didn’t wake me up earlier in the night for the BG checks! I was around 60 mg/dL at this point and required some juice to correct. I angrily spoke with the staff and they stated things like “Why didn’t you come and get us when you needed these BG checks”, and “We were busy at these times with other patients”. My responses were “I only have a cheap $20 Casio watch, that will not wake me up!” and “These didn’t need to be done at exactly midnight and 0300, they could have been done around these times or even 45-60 minutes around them as I wanted to make sure I wasn’t going high or low because of the 3-hour delay in my meal bolus!”.
- I’m not looking for any sympathy with my mental health issues but I kept stating to the staff “How is my mental health supposed to get better in this place when my multi-decade chronic illnesses are being ignored!” There was no response from the staff and they kept ignoring my needs.
In summary, if you are in a hospital and able to communicate clearly, you need to advocate for yourself and stand your ground when you feel your care is not correct or is in line with what you are used to doing on the outside. Don’t take No, We can’t accommodate that, or any other deflection they give you as an answer. They should be able to work with you or they shouldn’t have “HOSPITAL” in their name!
I have had 2 experiences of pumps in hospital. Most recently February 7th I fell and hit my head and was hospitalized for 5 days. Once I was out of ICU I summoned the on-call Endo and told her that a BS of 225 was not state of the art care that I expected from Duke Raleigh hospital. Old excuse of low blood sugars (my response was “horsefeathers”) and I informed her that my upper limit was 120 and my A1C 5.5. It is in my medical records if she isn’t to lazy to read them. They relented when I pointed out 2.5 years ago at Duke Durham hospital, I was ICU in for 28 days & used my pump for 25 days of my stay.
After 38 years on a pump, I have not used a long acting insulin unless administered by hospital.
When I went in Duke Durham in 2019, an Endo PA came to see me. She said they don’t see diabetics like me. I have all my appendages, eyesight, and functioning kidneys.
I know my Basal rates are rock solid. When in Duke Durham confined to bed rest, I went 4 days without eating anything(water & black coffee only). Since I’m ultra low carb I don’t get hungry and only eat when BS gets lowish. During a 4 day period of not eating I had no highs above 120 and no lows below 75. Had I been able to move and get exercise I would have had to eat.
Obviously I insist on being a part of the decision making process. I have been successful with everyone except the cardiologists. They are to arrogant to consult.
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I’m waiting for the podcast transcript to be available so I can print it out and force the Endo dept for my health plan to read it! My biggest fear is being admitted as an inpatient to their hospital. Their policy (from the chief of the Endo dept) is for patients with T1D to give them our pumps, CGM’s and meters. Not acceptable. Their typical 4-6 fingersticks a day, combined with using R insulin and having a target bg of 180+ does not sit well with me.
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My comment above refers to the TCOYD podcast about being an inpatient with T1D.
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Definitely also include Dr. Pettus and Dr. Santos’s profile pages so they know it isn’t just two yahoos talking.
https://profiles.ucsd.edu/jeremy.pettus
https://profiles.ucsd.edu/tricia.santoscavaiola
Your comment made me wonder what the ADA standard of care was for T1Ds in the hospital. Definitely good reading for this topic.
Too bad insurance doesn’t fine hospitals for bg’s over 150 or so!
RE: CGM’s for inpatients. osted on the window of the patient’s room and staff could view the bg’s and trends. Of course the only reason hospitals were willing to give up some of their control (i.e. power) was to save on PPE since staff didn’t have to enter the patient room.
Their interest in advocating for themselves somehow benefitted us for a change. I thought that was a very interesting set of circumstances.
It’s been a long time since I was hospitalized. But I recall them running me at 250 and just feeling sick as a dog. My mom snuck me in some Humalog so I could take tiny corrections w/o them noticing, but they caught on. I remember a Doctor yelling, “If I find out you have brought insulin into this hospital, I will throw out your visitors and not allow them to come back!” My Dad started getting a little feisty when he saw the Doc yelling at my in the state I was in.
I was really afraid to go to the hospital during covid. Sometimes I wonder if my fear of being hospitalized is a little over blown, but its instinctual from accumulating so many bad experiences. I’m fundamentally terrified of IVs and they always make you have one now on admittance. I panic and will do anything to escape. It’s all around a bad situation. I’m sure I’ve told you that once I slipped from room to room, until I found a door, ran through the woods with no shoes, and leapt into the mighty Mississippi. I swam all the way across it. I saw icebergs floating next to me. I made it all the way home, but when I got home, the police were there waiting for me. I got into my neighbors apartment and hid in the closet, having only time to dump a dirty laundry basket upside down over my head to conceal myself. They found me…those bastards…and returned me to the hospital. After everything I did to escape it sorta begged the question, “Do I really need to be hospitalized?” I was quite forlorn to be returned there.
I’m not a fan of hospitalization. It’s not for me. If you make a run for it, fashion shoes from something on your way out the door and NEVER go home.
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