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If you have been hospitalized for a reason unrelated to T1D, how satisfied were you with the hospital’s protocols for managing your blood glucose and insulin levels during your most recent hospital stay? Please share more about your experiences in the comments.
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For the past quarter century, the hospitals have allowed me and my experience and expertise to manage my own BG. That included two ACL repairs, a meniscus tear repair, two separate cataract surgeries, two vitrectomies, two heart catheterization tests, and probably a few other procedures I have difficulty remembering. Mainly it involved TSlim X2 pump settings and underlying basal rates.
However. There’s always a big, giant however. In 1997 at the Antelope Valley Hospital in Lancaster, CA I had neck disk replacement on the C5-C6 disk. Post op, the martinet that brought me post op supplies refused to give me a test stip. This is prior to CGM’s being available and common place. She insisted that patients are ignorant and lazy and that only highly educated and duly authorized physicians were capable of deciding whether I needed a test strip or not.
Now I know where Nazi organizations get their willing recruits. I only wonder why such incidents continue to gnaw on me a quarter century later? Any suggestions or insights?
😎❤️! And now I understand why so many people distrust western medicine, added to its history of racism, misogyny, eugenics, forced sterilizations, use of electroshock and insulin shock to cure depression, the use of icepick thru the eye as cure for mental illness, etc. YET I’d be dead if it were not for western medicine!
I was hospitalized most recently (2017) for a replacement of an artificial aortic heart valve that had reached its sell-buy date. Even though I was in one of the best cardiac hospitals in the country (and the surgery itself was excellent) I was struck by how much poorer the service was in 2017 than in the time of the original valve replacement at the same hospital in 2004. Everyone was more harried and overworked and consequently mistake-prone. We got off to a bad start when my wife had to draw their attention to the fact that I was a Type I diabetic. It was in my file but they hadn’t noticed. I did most of the sugar level management myself but I found that my CGM did not work in the hospital (too much electrical interference I suspect) so I had to rely entirely on finger sticks (no real problem). My main problem with sugar management was the diet they tried to force on me — inappropriate as well as unappetizing (but carbs of course are the cheapest source of calories). They seemed absolutely clueless about what a Type I should eat. I discovered that they were only used to dealing with Type IIs, but even that wouldn’t excuse the food or the fact that the endocrinologist believed that only by eating carbohydrates could you get glucose to your brain! To their credit, I was so upset about my second experience with heart valve replacement that they allowed me to meet with a collection of doctors and nurses after the fact to describe my problems directly to them and suggest changes.
Eventually my hospitalizations were related to my diabetes. I was admitted 3 times for spontaneous acute idiopathic pancreatitis because I was trying to treat T1D like it was T2D because of a misdiagnosis. My sugar was never checked before I ate, only an hour after and then I was scolded for high sugars and given insulin. Note – I was eating their food on a low carb, low salt, low fat diet. Sometimes my entire meal would be protein broth or eggs.
I have not been hospitalized since my diagnosis correction and am not sure how the protocols would differ.
Since they let me keep my pump and manage my own blood sugar I was very satisfied.
I received a kidney transplant 1.5 years ago. The Univ. of Washington Hospital in Seattle is really really great. Besides having an Endro oversee my care, they would have my insulin-to-carb ratio in my chart. The kitchen would send a receipt with every meal that would list the carbs for each item. The nurse would take my BG and figure out how much insulin to give me per meal. They would take my BG multiple times a day as well. I was on IV insulin, so they monitored things very closely.
This hospital has the best care in the state. I am really glad that I have been in their system for many years.
That is great Sue! You are very lucky to have such great care! I’m wondering, will I see you at the T1 United Adult Retreat this Spring?
The dietician would not send me juice or food when I had a critical low blood sugar. They wouldn’t let me manage insulin on my own, and the doctor who was supposed to help didn’t know what to do. That was the first hip replacement 18 years ago. The second one, 16 years ago, I made sure I was solely in charge of my diabetes, meds, etc. This went much better.
I was actually quite impressed with the results of my hospital’s IV insulin protocol in May 2021 during and for a couple days after my cardiac bypass surgery. Once I was eating and back on my pump, they let me manage things.
I’ve been so very lucky. Never been hospitalized for anything in 63 years (been told I probably should’ve gone to the ER a few times?). Meant the next 5 or 6 will stay the same?
In my experience, hospitals have wanted to take control of my diabetes even though I am well controlled on my pump. The last time I was hospitalized I refused to “turn off” my pump as requested. I informed the staff that I would not remove my pump. They argued. I pointed out that I know my body better than they did. I also assured them that I would let my blood sugars run a little higher than I normally do so they didn’t have to worry about lows. I did this because I know from previous experience that hospitals do this. One nurse explained to me that the wanted my blood glucose to run a “little higher” so they didn’t have to worry about it dropping too low. This worked. They let me keep my pump and decide how much insulin to take throughout the day. It was so much better than my previous experiences!!
I was hospitalized for coronary bypass surgery four years ago and the management of my T1D in the ICU was amazingly good. In the last few months, I have had two overnight stays in the hospital for additional heart work, but I was parked in the general surgery recovery and the food and management were sub-par.
I have been hospitalized for quite a few things in the past twenty years, and hospital seem to be improving their protocols for managing type 1 diabetes, especially with the newer sensors that were allowed to take place of a fingerstick by the FDA and then the control-IQ. After those were approved, my pump stayed in place during hospital visits and surgeries both.
I was shocked and really angry that my bg went way over 200 mg/dl during recent surgery for broken ankle. Anesthesiologist and I talked for 40’ prior to surgery day and they KNEW I had a Dexcom 6 which they could have used. High blood glucose levels anytime but especially during surgery increase risk for infections and blood clots and strokes. I was so angry I discharged myself the day after surgery against advice of nurse in charge, and they wanted me to sign a paper releasing them from legal culpability in case I died.
I’m not sure my surgery for broken ankle was unrelated to T1D. Isn’t there a correlation between diabetes and osteoporosis/osteopenia?
My hospital experiences have actually been decent. During my stays after a heart attack and another with pneumonia, I was taking care of it all myself with their approval. My stay in a couple nursing facilities for rehab, was a whole different story. They know NOTHING about type 1. A nurse even told me one morning I wouldn’t need any insulin that day because my glucose was “really good “ that morning. Geez!!! Thank goodness I was with it enough to take care of it myself!
I was hospitalized twice as a young child but those were before my T1 diagnosis. Have not been hospitalized since. I’ve had some ER visits (all but one were due to severe lows). The one ER visit that was unrelated to diabetes was horrible. They never even checked my BG, I had to pull out my meter and do it myself.
I have not had any overnight stays in the past 30 years or so. I have gone in for surgeries, colonoscopies, and endoscopies as an outpatient. I have been allowed to keep my insulin pump connected. On time, I was asked to lower my basal rate by half. Overall I’ve been satisfied. No problems regarding my diabetes care.
I can say that I have been hospitalized twice for C-sections, where for the second one, the nurses were shocked that I asked to test my blood sugar and recommended what I should take insulin-wise. This is before insulin pumps (1983). Then, 12 years ago (2011), I was at a major medical center for a mastectomy. The anesthesiologist told me to take off my pump. She didn’t know what to do with it. I did – big mistake. I wound up under anesthesia for more than 24 hours as they – now a cardiology team – did every test possible because they thought I had a heart attack, which I did not. No one monitored my blood sugar, and it went up too high. Please note as well I had an appointment with the anesthesiology department a week before this surgery, where my diabetes was discussed and documented. Never take off your pump and advocate for what you need…I learned and my advice.
I stayed in the same research hospital network as my Endo. She spoke to the team, all were aware of my CGM and pump, she was on call. Except they didn’t make the floor nurses aware! So the nurses were trying to get me to take it all off, not use my CGM readings, tried to have me drink juices (?!), called me non-compliant…it was eventually sorted out, but wow, the stress. I had to keep repeating “check with the surgeon and my Endo, this is not the protocol”
Pre surgery, I was to use apple juice for a morning low. Sure enough I had a low. The apple juice wasn’t very effective at raising my glucose level. The Anesthesiologist was freaked out that I drank apple juice. Explained that glucose tabs didn’t work well for me. He made me sign a special waiver about aspirating. Th nurse that prepped me for the surgery was T1D & explained about using apple juice. I felt inches tall. They need to communicate.
I’m a Joslin Clinic patient and they leave me alone to care for my pump regulations. I live in Boston where world renowned Joslin Clinic is located.
I had 3 cervical discs replaced and spent 4 days in the hospital. I had discussed my T1D with the neurosurgeon and explained that I’d need to manage my diabetes using my Dexcom and Tandem insulin pump which he said was fine. The day of surgery until the anesthesia and sedation wore off my husband gave me a few small boluses, my Dexcom reading remained stable throughout my hospital stay. Endocrine department also consulted and made no changes. I was very surprised that so many RN’s and patient care assistants had never seen CGM’s or insulin pumps.
It was managed fairly well, although I was a bit uneasy because they removed my CGM.