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If you have been hospitalized while living with T1D, how satisfied were you with the staff’s knowledge and care for your T1D during your most recent hospital stay?
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It has been years, but my most recent experience in the ER for a cardiac issue left me dissatisfied because the nursing staff assigned to the room I was in were absolutely clueless about how to deal with a well-educated advanced duration T1D adult on a pump & CGM. I more or less took care of myself because the nursing care was so-so.
At one point a young nurse assigned to my care came into the room and arrogantly told me to take off my pump because “we don’t want you going hypoglycemic on us”. I refused and explained to her that I was wearing a cgm that would alert/alarm if I was hyper or hypo and it was delivering insulin into my body according to a personalized algorithm. She then said – “doctor’s orders – he wants you to take off the pump.” I said to her, “Tell the doctor to come and speak to me directly so we (he and I) can discuss can how to monitor my BG and deliver insulin if I am off the pump.” I never saw a doctor the entire time I was there during that ER episode. A PA came in and we spoke about the pump and cgm – and he saw & understood that I knew what I was doing, so he was cool with me keeping my pump and cgm.
I overheard the arrogant nurse say to another nurse in the hallway outside my room, “I hate those damn diabetics on a pump – they are so bossy and non-compliant”. After I was discharged and the hospital sent me a survey to fill out about my care experience, I reported the incident and suggested they mandate their nursing staff to receive relevant and up-to-date diabetes education.
A hundred thumbs up!
Whenever I hear “Non-Compliant” I immediately know the person thinks they know about diabetes but really don’t have a clue. I inform my Endo and she gives orders that I am the only one allowed to control my pump
My husband has to treat my hypoglycemia if I am in the hospital for any reason (treatment or diagnostic.) I am amazed at how many staff members don’t really understand diabetes. I have not been treated rudely, but I find it dangerous for the patient.
The only time I was in the hospital as a Type 1 was when I was diagnosed, but there wasn’t an option for that. The question seems to be asking about experience after diagnosis, so I chose N/A.
Was in hospital overnight twice last year. Both times was able to keep my pump and CGM and manage my own numbers. Don’t know if being a nurse helped but I found just making wishes known prior to procedure was enough to have permission
I answered satisfied. They allowed me to control my pump and needs myself. I broke my right femur and was hospitalized overnight. I then spent 10 days in a rehab facility. Neither the hospital nor the rehab was familiar with T1D pump therapy.
I was in for a surgery. The nursing staff seemed to be fairly well clued in to diabetes and it’s care. The issue was the surgeon. He seemed to believe that unit of insulin per 15 carbs and 1 unit for every 50 bg points above target should work for everyone. In the 17 days there my bg went below 200 one time and above 400 repeatedly. Unfortunately the nurses were bound by his orders.
There are still pockets of this kind of ignorance–“It’s what I learned in med school in the 1970s, it oughta be good enough now.” That’s why it’s always best to involve your own GP or endo and work this out ahead of time.
I have only had day stays twice this year for knee replacements, but they let me keep my pump on and manage it on my own.
First time was 15 yrs ago and I was totally unprepared for how retrograde and uninformed the staff were about current regimens. Not even talking pump/CGM, just Lantus/Novolog MDI. I had a 3-day in-patient recovery, and had brought my own stuff, but they had a policy against patients administering their own medication, let alone setting their own dosages, and they were going to have me on that ancient sliding-scale R/NPH regimen I’d finally gotten off of after 20 years. This was in Boston at one of the premier hospitals in the world, affiliated with Joslin Clinic! I managed to dig in my heels and they reached an accommodation where I’d set up an injection and they’d administer it (which was so silly we just dropped the pretense).
Lesson learned: if at all possible, for planned surgery, anything requiring general anesthesia, contact your own Dr and the hospital and get this all worked out ahead of time. Most are quite reasonable if you do that. I think the present generation of medicos are more familiar with current treatments, but even so it’s worth making things explicit. My last in-patient also involved a 3-day recovery, but my endo and the official head of endo for the hospital had talked everything out ahead of time and made the necessary notes in my record. I had zero problems.
Fortunately I’ve never been there long enough and admittedly I try to avoid hospitals as much as possible. As well I’ve never been admitted while I’ve been using a pump which I think would be a godsend sort of speak due to the fact that I’d be controlling my rates etc. The last thing that always concerns me about our great health care system is the type of food they will provide. Admittedly that’s a real on going concern unless things have changed and are providing whole foods. Yea that’s highly unlikely.
Almost 6 years ago, I went into DKA (and I believe went unconscious) because the staff wouldn’t take my advice to give me more insulin. I was constantly above 200 and they kept giving me 1/2 of my basal insulin that I would have taken at home. I understood why they wanted me to cut down on lantus (I was not on a pump at the time) on the day of the surgery as I was unconscious the whole day, but after that I would need more than my regular amount of insulin because I was not able to move around, and being very physically active had always been a part of my regular routine. Luckily a relative who is a doctor came to visit me and warned the hospital staff that it looked like I was not doing well. I believe the hospital has improved as now I was able to wear my pump during an outpatient surgical visit
I feel for you. In Aug 2021 entered hosp via trauma unit. I was awake & aware. Hospitalist would not allow me to use my pump with bg monitor (imaging lost my cgm). The hospital protocul of test & inject every 6 hr failed to keep my bg in range. I felt sick entire time. Could not reason with hospitalist. Lodged formal complaint after discharge. After posting my experience I heard from many T1s who LIKE YOU had horrific tx in hodpitalists. This included T1s who almost died from DKA!
Post August 2021 I lodged complaint on the failure of hospitalist to allow me to use my pump. Imaging knew what my cgm was & promised to give back to me. They lost the transmitter. The hospital test bg 6hr & inject protocul was completely inadequate for keeping my bg under control. High bg entire stay. Detailed my exp on fb group page Tandem Diabetes Control-IQ Users’ Group.
Don’t get me started! I was admitted to the hospital last summer with a heart attack, and while recuperating in the ICU then a regular room, all of good practice regarding diabetes went out the window. The first thing they made me do was turn off my pump. Then, they did a finger stick twice a day, before meals, and based on the reading gave me an insulin dose. My numbers went all over the map, jumping as high as the high 300’s and as low as the 30’s. I quickly learned that the hospital did not have an endo department, and obviously the doctors were woefully short on diabetes knowledge. I managed to survive but had a very high A1C at the end of all this. For someone who just today scored a 5.6 A1C and consistently am in the 80’s and 90’s time in range, it was very damaging and I never want to experience that again.
I can totally identify with what you have said. I have given details in replies to others posts on this topic.
My appendix ruptured in December and I was in the hospital for 10 days. From past experience with hospitals, I was prepared to fight for my T1D management but I didn’t have to. While I was in the ER, the endo on staff came to see me and we talked for 30 minutes about how best to manage my T1D after I would be admitted. He then consulted my regular endo and came to see me every single day of my stay to help and tweak my numbers. He told me they have a new program (this is a Johns Hopkins hospital in Maryland) where he and a CDE hold workshops with all of the staff to educate them on how to manage T1D and how it’s different from T2. I was unable to wear my pump during the time but I was given full control of how much insulin I thought I needed for long-lasting and short-lasting doses. I went into the hospital almost in DKA and came out with much better-controlled BG levels. I was blown away by the care and attention I received! This should be the norm everywhere!
After my C-section, my need for insure resumed. Unfortunately, my BG bounced back so high, it was off the nursing stations expected range for dosage. I pleaded for my doctor to be consulted, but their solution was to withhold insulin; they told me they could not do anything that had not been specifically written for them. This had not prevented them from altering my diet since they felt I was being given food choices not appropriate for a diabetic. I took matters into my own hands and gave myself my shot. Soon, a pair of large nurses entered my room, grabbed me, and held me down while they they took a finger stick blood sample. They gave me a stern lecture as they wrote up the “incident report.”
Later that day, someone came to apologize to me, admitting that I had been correct. I tried to be gracious, but all I could think of was how lucky I had been conscious that morning.
2 months shy of 50 years ago now there was very limited knowledge of T1D so it was just morning blood draws and being told what not to eat basically!
This last time I was happy that they pretty much acknowledged that I knew much more than they did. It was annoying that they asked me how much insulin I took and didn’t have the proper place to record my basal rates and my carb to insulin ratio etc etc. They didn’t seem to realize that there were many different settings in the pump. Formerly I have had horrifying experiences in the hospital where I had to leave AMA because they weren’t allowing me to treat my highs the way I should. I went in for an undiabetes related incident and had to check out because of my diabetes without getting the other incident resolved. This is very scary because what if I was unconscious when I was admitted or unable to make decisions for myself. They had no idea how to handle my diabetes. Very scary not to have a place to go in an emergency where they could actually handle my health.
7 years ago I broke my ankle that required surgery and non weight bearing for 6 weeks, PT, and swelling which required different shoes. The hospital stay went well with sugar levels and even a menu with sugar free desserts. I was disappointed that my insulin vials were thrown in the trash but they could have given them to me at departure. What a waste of this life saving vial of gold!
I have been hospitalized twice with T1D. The first time, a newer hospital. Staff was very comfortable with me managing my T1D with my pump and CGM. They needed to occasionally do a finger stick with their meter for their records. I was able to keep my pump and CGM on during an appendectomy. Talked with endo and anesthesiologist prior to give them some details (I am insulin sensitive, had to tell them my maximum insulin limit in case of an emergency!)
Second hospital stay, old hospital, one night for “observation.” Staff was thrilled not to deal with my diabetes.
2005 last stay. Had my cde there to instruct staff re diabetes care. Mostly I took careof myself in that regard.
The few times I have been in the hospital I have managed my own diabetes care. I have to admit though I am quite concerned about managing my diabetes should inever become incapacitated. I where an insulin pump so if somebody can continuously monitor there would be no issues. Someone would need to refill the reservoirs and change the sites periodically. I have to assume hospitals are competent in the areas of diabetes management though.
I hate to tell you this but,, Hospitals are not competent in managing diabetes and they know nothing about pumps and do not trust CGM numbers.
I almost hit “I don’t remember,” because it was so long ago. My stay in the hospital was post-op for shoulder surgery. I’m not sure if I stayed over night or not. But, I remember that they let me handle my own insulin via the pump. I seem to remember some of the nurses not being familiar with an insulin pump. It was kind of a novelty.
Last hospitalization was 2014 and it was pathetic however many things have improved and I voiced my complaints to the right persons. I see now it is much much better
My answer was N/A. I have had several procedures while living with T1D, but never an overnight hospitalization. In the limited number of hours I was in the hospital the staff was open and receptive to learning about my insulin pump and CGM and allowed me to care for insulin needs on my own.
It was many years ago but everything went smoothly during my 3 day stay post surgery!
Limited knowledge and resources to deal with acute hypoglycemia.
Hospitalized for 4 days with West Nile Virus. The endocrinologist was on vacation. The hospitalist wouldn’t let me have anything to do with managing my diabetes. If my blood sugars were close to normal (which didn’t happen very often) and I was going to eat, they wouldn’t give me any insulin because…”my blood sugars are normal”. I finally tricked them into thinking I was better, which I was not, but I thought they would kill me before the WNV did. I am a RN, CDCES. It was a horrible week to say the least.
I have been hospitalized more than a few times, and (understandably) the nursing staff universally was afraid of managing diabetes, clinging to the hospital routine. Having a pump helped, because they were even more “hands off” as long as I let them take my BG for their records. I definitely felt each time that management of diabetes was entirely dependent on me, and wonder if I would die if I wasn’t able for more than short periods of time.
It was life-threatening because the ER staff didn’t access my medical records, removed my MedicAlert bracelet without reading it or calling MedicAlert, didn’t acknowledge my statement that I had T1D, immediately discarted the insulin, syringes, glucose monitor and test strips I brought with me, started an IV with glucose, gave me an injection of pain medication that knocked me out and absolutely refused to listen to my partner who continued to try to advocate for me. I lost my appendix and very nearly my life at that hospital.
Are you kidding, they withheld insulin for 36 hours on the order of the hospitalist. I had top call my endo in the middle of the night to get insulin. Dumb asses.
The hospitalist put me on a a fixed scale of insulin on the 3rd day. My blood sugar was over 400, I was suffering. No way will I ever, ever give up my pump again. I have never seen such backward BS in my life.
Ages ago, when still on MDI and the Lantus/Novolog (or Humalog) regimen had been around for a couple years I was admitted. When a nurse came in to administer my insulin I asked which one it was. She said it was both – like she was doing me a favor. I refused. You can’t mix them. I had to go up the chain of command ad finally insisted if they called the pharmacy from the phone in my room, and put it on speaker, I would go along with the pharmacist’s directions. He shouted NO!. Nowadays, the hospital I have to use (HMO) has a policy of no pump, no CGM, no meter for inpatients (this comes from the head of the Endo dept). I am scared to death. 4, may 6 fingersticks a day, prior to my CGM I was 15-20 fingersticks a day. ANd using R insulin on a sliding scale – that’s the dosing regimen.
You need to change your insurance provider. That is outright patient abuse.
The doctors always give you a ton of dextrose then they want you to eat a lot more food. They won’t let you have more insulin to cover all the carbs so I always end up with very high sugar. I feel horrible when it is high and it takes way longer to get a high down than it does to get a low up.
I refused to have them manage any of my T1 while in hospital. All they did was check my blood sugar 2 times a day I handled all else. The hospital physician supported my decision (I have done it this way since 1992) my internist at the time told me to never allow them to manage my diabetes, that they know nothing (I was pregnant at the time and in preterm labor) I’ve been hospitalized twice since then and this is how I’ve done it and the physicians supported my decision.
Was in my “ home” hospital where I work, and the nurses followed our policy to allow the T1D to keep their insulin pump on, and control their own BG, while providing own supplies, and requesting bg readings from the cgm periodically.
When I went in for day surgery, I was put on an IV drip – my BG was dropping, so I stopped my insulin pump – then it was shooting the other direction… which is when they finally mentioned that there was glucose in the drip! What? Had to get the insulin going again to keep the BG in control. Luckily the sedation wasn’t impacting my ability to assist myself. The nursing staff knew how to test my BG, as they were required to do so, but their knowledge of diabetic care went no further than that. My father has had even worse experiences when he’s been in hospital.
They would not let me wear my pump the first day. If my mother didn’t bring me extra pump supplies, they would have only given me short acting insulin.
I had great care the 1o days I was in ICU after open-heart surgery. The hospital had an inhouse endo that worked with me to get my pump and CGM restarted,
In my experience, I’ve found that a gentle approach works best when convincing the staff that things will have a better outcome if I’m allowed to continue doing what I’ve done minute by minute for most of my life. Making comparisons between who is better
informed seems only to intensify any misgivings. I try to let them know that their training is invaluable to me for all of their other skills they’ve worked so hard to come. But diabetes is my so-called “field,” and I am more than happy to share with them all that’s required to keep the BS where it needs to be, and also to let them know that if I screw up, it’s not their responsibility. I’ve been working on this theory for decades, and do believe that humans given the chance to be reasonable and human, will be. It has been scary sometimes, but well worth it in the long run.
A humorous event, if I may. Diabetic related because of increased urination.
January of 2021. Routine heart catheterization after having done the first one in 2016.
When coming out of the procedure in 2016, pain was intense because of urine accumulation in the bladder. In 2021 I directed (commanded!) that a urination bottle be placed in the bed while I was recovering.
After 3 or 4 hours, they usually release you to go home. A young (I’m a bit prejudice here) lady came bouncing into the recovery room. She was in a hurry (I am NOT prejudice here. Everyone gets in trouble when they are in a hurry.) immediately tipped the bed towards my head. Needless to say, gravity still works and the completely full urine bottle emptied all over me, the bedding, and everything else.
My only advice? Unless the house is on fire or you are bleeding profusely, never, never trust anyone in a hurry. (• `_´ •)
Because I’m Joslin-trained to take care my T1D, I questioned their ability to understand what and why I chose to retain my pump control and my diet.
lol
It was 20 years ago, and I was on MDI. I was 35 weeks pregnant and my water broke. The protocol at the time was to put me on hospital bedrest to see if could last a little longer.
A nurse had taken my bG at 4:00 am and it was 180. A resident making the rounds at 6:00 am looked at that and ordered 20 units of fast-acting insulin. When I awoke to the nurse rubbing my backside with alcohol I asked what she was doing. She told me and I nearly flew out of the bed. I demanded she test my bG again, and it was… 100. Twenty units could have killed both my baby and me.
I started yelling my head off. The charge nurse came in, heard me out, and then marched down the hall to where the residents were doing their morning meeting and dressed the doctor down in front of everyone.
I was satisfied with that outcome, but will never ever ever sleep in a hospital again.
I’m going in for a out patient procedure next week. Have discussed having a pump and having a G6 with all. Some don’t seem to understand questions like “What if I go low? Will they treat me while I’m out? Will they stop the procedure?” Not the greatest of responses from some, have to talk to the docs and anesthetist.
Although I selected a little disastisfied that does NOT apply to ALL members of staff. SOME were very knowledeable, whereas as some left me questioning whether they had chosen the correct occupation.
In my last admission to hospital, I was really rather disappointed as my insulin pump was removed from me and I was put onto a ‘sliding scale’ insulin regimen.
I requested that a representative of the Diabetes Team be brought in, who immediately amended my ward notes, informing the staff that I should be allowed to recommence usage of my pump.
All in all, SOME, I hasten to add, went ‘above the call of duty’. I ‘came round’ on one previous occasion to find a Health Care Assistant holding my hand, which I found incredibly reassuring, and on another previous occasion, where I’d lapsed into an insulin-induced coma … based on the instruction of a Junior Doctor that my insulin dose needed to be increased, whereas I’d argued that as I’d ‘come off’ a course of steroids that my insulin dose needed to be DECREASED, only to be told that he was the one ‘with a bit of paper’ (certification). (I could, and probably should, have argued that I also ‘have a bit of paper’ though mine is not in the medical field.) I ‘came round’ to find my own Diabetes Specialist Nurse holding my hand and mopping my brow. She told me that she’d witnessed something not regularly seen when someone’s blood glucose level is extremely low, and that is that I started fitting/convulsing. [I’m still in love with that Diabetes Specialist Nurse, even though she left employment with my Local Area Health Authority some years ago.]
I don’t think I’ve been “hospitalized”, but I spent several hours in an ER once after contracting a bacterial infection just before returning home from Nepal. By the time we returned to the U.S., I was feeling somewhat ill from the infection, but I lost control of my blood sugar. When I had been high for a while, I started feeling confused and couldn’t concentrate. When it reached the point that I couldn’t remember/figure-out how to operate my pump, I went to the ER. I didn’t have diabetic ketoacidosis, which was my assumption, but it was still quite troubling. They handled it well, and had me back in control after perhaps 5-6 hours in the ER.
The only time I was hospitalized was after being hit by car resulting in hip fracture. They put me on IV. My resulting bgs were a little higher than I liked (I was permitted to test my own bg. I’ve always carried a bg meter, but didn’t have my insulin vials.) Meals had a little too much carbo. I was discharged in 2 or 3 days. I think the hospital wanted me to stay in 150-200 range. Hospital administrations probably fear getting sued if a patient has hypoglycemia episode, so they go overboard on keeping bgs high, what they call “normal.” Today I carry extra syringes of glargine and extra syringes of lispro…just in case of unforeseen emergency…or opportunity for overnight romance.
i know medical professionals can’t ALL be experts in every condition but I have been SHOCKED and dismayed at how little they know about CGMs and insulin pumps. Anesthesiologists are usually the most interested and knowledgeable, but the poor nurses who have too many patients are the first ones to ask if I wouldn’t mind taking my pump OFF and letting them manage my sugars….HA. You’ll have to peel the pump and the CGM out of my COLD DEAD FINGERS!!!
I’ve been hospitalized a handful of times over my 55 years with T1D. The last was about 8 years ago and was a DISASTER. My young grandchildren know more about T1D management than the hospitalist. My endo did not have hospital access, so I was at the mercy of a hospitalist that only followed the T2D BG test policies for insulin dosing. They didn’t want me to use my pump for insulin delivery but I insisted. They refused to use my/my pump’s calculated dose and required me to dose according to their ‘sliding scale’ from a BG test (my meter and theirs). I was eating 48g of carbs for breakfast and I tested 90, so they would NOT let me bolus for the breakfast. I told them I would be well over 200 in 2 hrs, but they refused to budge. Sure enough, that’s what happened so huge dose of insulin to get it down and then a dangerous drop in BG. I was ready to be dismissed and they refused to let me go home with a BG of 75 because (‘its dangerous for you to drive’) LOL! My husband was sitting there to drive me home. As if I didn’t know how / when to treat a BG of 75 which was NOT falling. After several hours (policy said they can’t test my BG except every few hours), I told them I was walking out since they were endangering me more than my 75 BG!