Sarah Howard
Sarah Howard has worked in the diabetes research field ever since she was diagnosed with T1D while in college in May 2013. Since then, she has worked for various diabetes organizations, focusing on research, advocacy, and community-building efforts for people with T1D and their loved ones. Sarah is currently the Senior Marketing Manager at T1D Exchange.
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If you have been hospitalized for a reason unrelated to T1D and you were conscious during your hospital stay, were you permitted to manage your own insulin dosage? Cancel reply
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The last time I was hospitalized was when I was first diagnosed so I have not had to deal with this situation yet.
I did have a colonoscopy 3 years ago and they allowed me to keep my pump on.
I have not been’ hospitalized’ per se, but have had day- surgeries ‘at a hospital’… Eye surgeries – and have had no issue managing my own insulin.
When hit by a car and hospitalized I was conscious, but did not carry preloaded syringes like I do now. So I was subjected to establishment high bg levels. Be prepared to advocate for normal blood glucose levels when dealing with most doctors, hospitals, clinics.
Wanacure–love the phrase “establishment high BG levels.” 😁
I was hospitalized as a child briefly after a tonsillectomy and I don’t remember it well. I didn’t really trust anyone other than my parents to give me my insulin back then, so I probably made things difficult for the nurses. But I also had an IV so maybe they gave me the insulin that way? I do remember getting very angry that one of them checked my blood sugar while I was sleeping. I insisted they wake me up so I could check it myself from then on.
No. I was recovering from C5-C6 neck discectomy in 1997 in the Antelope Valley Hospital in the pre-CGM days but on a Medtronic pump. Post-op I was refused test strips. DOH! How do you operate a pump successfully unless you know the BG? 😠
Finally, FINALLY, I was able to appeal to a high enough ranking official (Do hospitals have officials and referees?) who authorized the use of test strips. Test strips from my own bottle I had brought with me, BTW. No wonder so many people die in hospitals.
I haven’t been hospitalized since 1987
Had to have the neurosurgeon write an order that I be allowed to manage my own insulin, and keep sensor and pump on. Refused to be catheterized for a 2 hr procedure. They did not tell me I had been given steroids during surgery till I demanded they look at the chart and tell me — as my blood sugar was very high and i did not know why. Yes they did give me steroids during the mini back surgery for arthritis and spinal stenosis. they have since changed their policies and now a diabetes educator sees you at prep visit .
90% of the time I have no issues with doing my own management while in the hospital. That other 10% though, whoa, I had to call a doctor at home one time because the partner covering the inpatient’s that day wanted to make me take my pump off and use 70/30 insulin. It is much better these day’s though.
I was in the hospital when I had my child, so they managed my diabetes for the first 36 hours, but a day after delivery I went back to my insulin pump and for the rest of my week at the hospital.
I had back surgery and the surgeon was concerned me being coherent enough post surgery to manage my insulin pump, cgm and bg testing. This was in 2017. So nurses were taking over. I was only allowed to keep my pump on for continuous basil doses. Nurses were too busy to administer bg’s, doses of insulin injections in a timely manner, my blood sugars rose . After much discussion with nurses, and surgeon it was decided I could manage the diabetes myself…. So they let me. My husband was allowed to bring my supplies to me as well.
When I had sinus surgery in Jan 2020, the anesthesiologist was extremely knowledgeable about my insulin pump and sensor. Because of this, things went so much smoother! The team was able to handle things and administer a bolus if I needed one.
NO!! And I was furious. Sick from high bg. Everything great in Trauma Unit & Intermediate ICU. Issue on Med floor. Thankfully I was only there 3 days. Back on track quickly at home. Lodged complaint through Patient Advocate. No suggestions please. I posted experience on 1 website & 2 fb pages for T1’s. I’ve heard it all. Good, bad & ugly.
I managed with my OmniPod and Dexcom during labor and delivery, including my Csection surgery, operating my PDM from the OR table 😉👍👍
During heart stent surgery some years ago and what I assumed was going to be more stents this year, I argued for and was able to keep pump and cgm and my own control. Mainly, by just keeping it on, despite being told many times I had to remove it, and just explaining it to the anesthesiologist when I was on the table. But, for cardiac bypass, I gave in, since I knew I would be unconscious for hours, and my regular endo had argued that the hospital had a good formula for IV insulin. And, it turned out it worked really well, I was able to determine when I finally activated CGM, using my phone. But, that technique of just waiting had its problems, resulting in me beeing unable to reactivate pump as quickly as I wanted anyway, because had to wait for new one to be overnighted — had not had access to correct turn-off procedure at last minute, and my ad hoc technique to stop it from working (or, perhaps, something done while pump was at security? Maybe it DID alarm and someone was trying to turn it off?) resulted in an alarm that was only fixable by sending it in.
I haven’t been hospitalized since being diagnosed.
Back in 2009 was overnight. Next morning I passed out. Interns told me I might be bleeding internally. I said just bring me food. They brought me a bagel and OJ 😜. I told them I was going to inject (was in pens then). They came running saying I couldn’t. I said well I can’t eat a bagel and drink OJ w/o insulin. So they brought me a needle with 12 units. I said you are going to kill me and it was only then they would let me manage it myself. I’ve only had 1 surgery outpatient since then and they let me keep my pump. Time and experience does wonders sometimes. However, I was afraid with COVID. I imagined me going in unconscious without my husband or advocate allowed in. It frightened me.
When I had my first hip surgery I asked my endo to have a colleague look in on me, who didn’t know me. My sugars ranged 35-350, and the dietitian refused to send what I asked for without a lot of arguing. That was 17 years ago. When I had the second hip done, I was too sick to care. I’ve spent the last ten years lifting weights and working out. I’m never doing that again.
My physician in the hospital was not my endocrinologist. He understood diabetes, but deferred to my experience and management. After the nurse running in to ask questions, running back to the doctor to get approval for my dosage, running back to give me an injection…..there’s got to be a better way. I suggested I be allowed to manage my insulin regimen and the medical staff would record what I did. My doctor thought this was a good, more efficient use of everyone’s time and expertise, and gave the traditional Captain Picard response, “Make it so.”
A catch-22, and SO typical of a certain kind of Dr who assume they are the authority on everything but actually are still going by what they learned of T1 in one lecture while in med school 30 yrs ago
I did up until the point where my pump ran out. After that the doctor on duty would not approve the dosages I asked for before my meals. A day later, the same doctor would not release me because my blood sugars were “out of control.”
I called my neighbor and asked him to bring me my own insulin and a refill for my pump so that I could take care of it myself.
This is one of those things that has gotten better in hospitals generally but you can still have problems. A lot of them have a policy of “patients not allowed to self-administer” anything, and don’t acknowledge that this doesn’t work with T1. They can REALLY mess you up. Years ago I had no idea it was a problem until I was in surgical recovery and they were going to put me on the obsolete sliding-scale R/NPH regimen. This STILL turns up because hey, it’s a relatively rare disease and the ancient lore is still on the books–that’s all they know.
BEST ADVICE: if it’s not emergency surgery, have your physician/surgeon/endocrinologist (or all of the above) contact the hospital’s surgical Dept and clear it all ahead of time. That’s what I did recently and there were no problems. Probably would have been ok if I hadn’t, but why take chances.
Have not been hospitalized
When I got my first pump, the woman giving me training said never had this PDM to anyone else. I said why would I? That’s when she told me if you are ever in the hospital a doctor or nurse might ask for it and don’t give it over. They 99% of the time don’t know enough and can kill you. From all your comments, I see that appears to be true. The only time I was in the hospital, the nurse came in and asked a bunch of questions about my pump settings. One of the questions was worded oddly, and I wasn’t sure of the answer. At that point, she said if I couldn’t give her an answer, I wouldn’t be able to use my pump. So I took a guess. Apparently, if they get the form filled out, you can keep doing it yourself.
There was no category for no, I have never been in that situation.
No, but that was 20 some years ago and pre-pump and cgm.
After being instructed to stop ALL medications, including insulin, 24 h before outpatient surgery, I think I’m more afraid of being hospitalized than I am of catching COVID and dealing with it at home. (I explained that I wouldn’t need the surgery if I followed her instructions because I would be dead.) I don’t know if I’m allowed to post a link, but the ADA just published guidelines for diabetes care in hospitals: https://care.diabetesjournals.org/content/44/Supplement_1/S211
I was permitted to manage my insulin dosage because I had a pump, but I also had to have my BG checked by the nurse. I have been allowed to keep the pump running on basal during surgery
First off, thanks for posting the ADA article and for some great lines like “establishment high bg’s”. I answered “no” (dammit). The hsopital I have to use has a “protocol”, and they hand out copies to patients at just about every in-person appt. To wit “…hand over your umps, CGM’s, and meters…” From what I’ve been told by other patients they use sliding scale Nph/R regimen and it is questionable as to whether or not they provide insulin coverage for meals. I did have my cataract surgery outside of network (paid for it myself) and the OR staff loved my Dexcom!. As things stand, I will leave AMA if I can’t have my devices. I think my 40+ years of living – and thriving – with T1D should account for something. I do have a slight glimmer of hope after learning that many ICU’s during the pandemic were provided with CGM’s to monitor patients with D. It was viewed as a means to save PPE since staff wouldn’t have to go into the room to monitor. I hope hospitals learn how much better things can be.
I had cardiac bypass surgery and I was helped to use my pump and CGM as soon as I was able. The hospital endo was a great help.
I wasn’t allowed to manage my own insulin dosage(s) until such time as I was seen by my endocrinologist, who kindly informed the ward staff that I was in a better position to handle my own insulin dosages due to how long I’ve been taking insulin, plus the fact that I was the first person in the area that I live to have been given an insulin pump. In fact, any time I’m admitted to hospital, my insulin pump is always removed from me as many of the doctors offering treatment haven’t seen my specific pump before … some of them haven’t actually seen an insulin pump, let alone specific brands and models of them.
Your average “hospitalist” knows less about managing insulin therapy than 95% of the people on this site. I’ve had two terrifying episodes dealing with those fools and the bureaucracy they work in.
I think it helped that my A1C was 6.5 and my previous one was 6.4, which was in my medical history.
I had appendicitis. The first night, the PA would not let me use my pump. She said the nurses were not comfortable with it. I had to ask for insulin many times, and was only given 3 units for a blood sugar of 300. By morning, I had snuck my pump back on.
I was last hospitalized for appendicitis. Even though I continued to tell all medical staff I had T1D and my medical records clearly stated that, I was treated as a T2 non-insulin dependent patient. It was Labor Day weekend, my MD was never contacted and it wasn’t until after my appendix was removed and I regained consciousness that I was able to call my CDE, at her home. Very fortunately, I was more than just a case number , she knew who I was. After she called the nurses’s station and told them I needed insulin, whether I was eating or not, I received an insulin injection. My blood sugar was in the 400+ range the entire time I was there. I was not permitted to use any of the glucose management tools I brought with me. Released after three days, I was very happy to get out of there alive.
The hospital managed my insulin very well since the kitchen sent a list with every meal that indicated the carbs. The rehab center did not know what they were doing in regards to carb counting. I finally was able to get them to allow me to manage my insulin regime and I was able to keep my BG within a reasonable level.
Haven’t been hospitalized as a T1 patient
The only times I was allowed to control my own insulin and finger poking for glucose checks was when I insisted my doctor tell them to allow me to. My daughters used to look out for me when I was real sick but now that family members cant be with inpatients, Id have to be dying before Id be admitted into a hospital.
I always try to partner before going in for out or in patient procedures. I discuss is with the surgeon and the anesthesiologist before any procedure, and make it clear about my management. The have been several situation in prepping for a procedure where another nurse or NP have tried to abstract this self care and the surgeon or the annstheiologist have play a positive role in clarifying who will manage BG. The other challenge is the quality of care. This paper can help clarify the health management standard for BG in the hospital.
Perioperative Hyperglycemia Mgmt Perioperative-Hyperglycemia-Management-An-Update
My endocrinologist wrote a letter to the nursing staff telling them that as long as I was coherent that my insulin pump was to remain in place and I was to manage my diabetes myself.
I was hospitalized before my first child was born because my water broke at 34 weeks and they wanted to give baby a bit more time. I was awakened one morning to a nurse trying to inject my backside. When I demanded what it was, she said, “Your blood sugar is 200, so I’m giving you insulin.” I looked at the syringe. I needed about 20 units (insulin resistance is a real thing in advanced pregnancy), and her syringe had 40 units.
I raised a stink, and the Charge Nurse came around a few hours later and told me that she had called my Endo, who told her that I was 100% capable of handling my own insulin needs. She then “dressed down” the resident who had ordered the 40 units, during grand rounds for not checking with the endo first. That cheered me up quite a bit.
For Baby #2, I was on a pump and managed it 100%.
I chose yes, as the only times I have been hospitalized and “conscious” but NOT able to manage my own insulin is with monitoring for epilepsy seven years ago and more. My consciousness may be affected.
During many surgeries recently, my pump and CGM is preferred.
In 2016 I was hospitalized for surgery on my spinal cord. I didn’t have a cgm or a pump at the time. I would have been fine with the doctors and nurses managing my blood sugar if they had known what they were doing but they didn’t. I was put on 1/2 dose of my lantus the day before the surgery. I understand that, but after my surgery, they kept me on 1/2 of my dosage. Not only was my sugar high because my normal dose of insulin wasn’t being given to me, but I was not exercising like normal and the stress from the surgery increased my sugar level. I told the nurses a few times that I needed more insulin, but nobody took my advice. My body was shutting down as I went into DKA. Luckily a relative of mine who is a doctor came to visit me and told the medical staff that I needed medical help. Because of that experience, I now believe that an endocrinologist should be on call 24 hours a day to check on diabetic patients while they are hospitalized.
It was about 3 years ago when I had pneumonia. I had to convince them my dexcom worked well and that I knew what I was doing when I took huge amounts of insulin to cover the prednisone they had me on for treatment. I totally understood their concern but as I gave them my numbers they were impressed .
Back in 2006 I had surgery and was not allowed to keep my pump as much as I argued to do so. Since then I have been in the hospital and have argued successful to keep both my pump and Dexcom
For outpatient procedures of minor foot surgeries, cataract removal, and insertion of pacemaker. I was able to keep my pump and CGM after steadfastly advocating for myself and educating the HCP team and staff preforming the procedures.
Broke hip and was hospitalized for 5 days (surgery was delayed). They allowed me to use my pump and CGM as long as I used their insulin dosing which was way off. They were satisfied with bGs in upper 200s, which was extremely stressful for me. I told them that I could manage better on my own and would they please contact my endo for his approval. They wouldn’t budge and threatened to take my pump away if I didn’t cooperate. Thankfully, when I transferred to their rehab hospital, I was allowed control as long as they did finger pricks 4 times a day to monitor my numbers. What a relief to return to decent control.
Ridiculous. They always seem to be using a chart for T2D. Maybe requesting (demanding) that a patient advocate or hospital endocrinologist visit you would have helped. Or have a family member contact them.
It was not a regular admission, but over two admissions (both from ER, following semi-collapsed lungs) in different hospitals, ‘my’ insulins were not in the hospital’s formulary, AND nurses would not permit injections/medications not on doctor’s orders, so after they figured out I’d given one shot from my own insulin, they were furious and removed my insulins from my reach. I had to check what they were proposing to inject me with, and in the first case repeatedly argue with them about doses (checking their arithmetic on algorithms) where they were incorrect (first hospital; second they usually got it right). In the first hospital, despite my providing full detail on my regimen in writing, it took until 1/30 a.m. to get insulin glargine because nobody had put it in the orders.
Needed an emergency c-section for my second daughter and there was no time to get me disconnected from my pump and sensor. Hospital staff was happy to let me manage diabetes management throughout my stay.
I had discussed my Tslim pump and Dexcom with my neurosurgeon last year before he operated on me and he told me he would let the anesthesiologist know that I’d have both devices while in the operating room. After surgery, when I was way to groggy to take over, for the 1st few hours my husband watched my Dexcom and gave me some small bolus correction doses in an effort to keep my blood sugar 100-130. Overall, between the 2 of us, my blood sugar remained stable throughout my hospitalization and the nurses allowed us to independently manage my insulin.
Hmmm… Being a crippled tired old man never been hospitalized so no idea. (now of I’m cursed I know who to blame! am now 62)
They had me set my T-Slim to Activity mode cause they were scared my blood sugar would go low. So I averaged around 180 for the 4 day hospital stay.
Not in hospital
Hospitals are a terribly dangerous place for T1s. That said, I have done everything I can to avoid them.
Unfortunately, with age and other health issues, I have had a number of surgeries in recent years. I no longer allow sedation by protocol. I don’t need anxiety reduction by drugs for the procedures. The main source of anxiety for me in a medical setting is the lack of knowledge of T1 amongst medical providers. Kudos to the anesthesiologists who have been my allies in keeping my pump and CGM in control of my life during outpatient/day surgeries. Even when I refused general anesthesia for a shoulder surgery and insisted on local only, the anesthesiologist was on board.
I have way more trust in my knowledge and 50 years of T1 experience than any one other than my endo, who isn’t in the OR during surgeries.
Thankfully, I’ve been lucky enough to not be inpatient for anything since 1995. Sure hope that continues.
I was not hospitalized (no option for this response on the list of choices)