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 alert during your hospital stay, were you allowed to manage your own insulin dosage? (If you have been hospitalized for reasons unrelated to T1D multiple times, please select the option that describes your most recent hospital stay.) Cancel reply
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I was last hospitalized 12 years ago and by the time I was alert I was discharged!
I was hospitalized for a dental abscess, had surgery (I&D). I turned 50 and had my first root canal, ever, and it was a doozie. Luckily, my endocrinologist does rounds in the hospital regularly and gave them an instruction to leave me alone on glucose/insulin management because I could do, and am doing, a better job than they could hope to do. Unfortunately on the last day, my pump ran dry, and I forgot to ask my wife to bring supplies. When asking the attending doc for insulin, she started asking questions to apply so sliding scale system to calculate the dose. I told her my bg, my basal rate, my ISF, and carb ratio. She was puzzled. Before she asked another question I tole her I needed 12 units of lantus and 8 units of humalog. I told her to check my bg in 2 hours. She was shocked when my bg was below 110 and held steady until I was discharged.
One time I was in the hospital with heart attack and without any trouble at all the nurses were happy to allow me to manage my own insulin. This time I had to fight tooth and nail. These nurses don’t even know what a flex touch pen is much less what insulins I’m on because they only do vial and syringe with lantus and humalog. And most of them don’t even really understand the process of everything we diabetics have to put up with. Who knows better than ourselves what our management looks like, everybody’s different but they want to put you in a neat little box. I had to actually threaten them that I’d leave the hospital, because the pharmacist here wanted to force me to use their humalog and lantis which I left behind a long time ago cause they didnt work for me. I said hell no. Considering I went in with a bad case of pneumonia, they knew I meant it. Dont think it would make for good PR
In the hospital to give birth, 35 years ago. I took matters into my own hands when the staff refused to let me have insulin the day after, because my blood glucose, being over 300,, was not within the designated limits for the sliding scale.
When this became known, 2 large staff members came into my room, grabbed me by the arms, and forced me to submit to a blood test (really, all that for a finger stick!). Eventually, an actual endocrinologist looked into the matter. One of my nurses apologized.
Still makes e angry and and I would be filled with worry if I could not take action for myself.
My most recent hospital stay was in 1999 when I had an appendectomy. The care for my diabetes was so mismanaged that I ended up in the hospital for 3 weeks because they could not get my blood sugar under control and would not listen to me. The good thing to come out of that incident was that I found my first great endocrinologist and got on an insulin pump.
I later found out that the nurse that consistently refused to listen to me and do a simple finger stick got fired a couple of days before I was discharged.
When I was in the hospital for a brain tumor and kidney transplant the hospital had other to manage my insulin doses. They had a whole team of Endrogronolgist to assist. My carb ratio was in my charts, the kitchen would send a receipt with the carbs for each meal, and the nurse would give me my injection. I would assist the nurses to determine what my doses should be.
Yes, it was in combination with other medical staff.
I haven’t had any overnight stays since diagnosis 32+ years ago, but have had a number of surgeries. The last 5 I’ve been able to keep pump and CGM on…I think they’re learning
I was hospitalized for lung removal surgery, and no one asked if I wanted to manage my own insulin. I wouldn’t have wanted to manage it, frankly!
I have not been hospitalized for any reason at all since I had surgery in 1988. I was not in a pump at the time., but never let them dose me without my approval. At one time a nurse misread the instructions and wanted to give 10 units of regular instead of NPH.
One time, long ago I had to fight to get the nurse to split my Lantus and Humalog (back on MDI days). She insisted on combining them “that way you only get one shot”. I said no, the charge nurse came in. Same story. I told them I would take it their way IF, they called the pharmacist from the phone in my room, and put it on speaker. The pharmacist reemed them a new one and I was (sorta) listened to after that.
I haven’t been an inpatient since. I am hoping and praying that I am never an inpatient under my current health plan. The HMO Endo dept hands out written directives stating that T1D inpatients must turn over to hospital staff our pump, CGM and meter. The target bg is 150+ (mine is 80), they use sliding scale and do perhaps 4-6 fingersticks a day. My “hope” is that if I do need to be admitted, that it is do to an accident and I am taken to the nearest hospital – rather than the plan hospital.
My main question is where in medical or nursing school do these people learn that T1D people not only have T1D but are stupid, lazy and have a propensity to lie?
I have recently signed up with a home health care company and had to do a whole bunch of boring courses on-line (most of them I feel I have done a hundred times before). The part of “diabetes education” appeared to have been stranded of what was common, maybe around 1980!! Mixing insulin was described on one slide, and made me go through the roof!! I made comments on basically every slide in that “education” inclusive of the word “diabetic” that I can’t stand and will not accept. This is 2023!!!
Welcome to the 21st century where laziness, stupidity, and mendacity are known comorbidities with an R-squared of 1.0 and a certainty of 100%. Should we consider blood-lettings, thalidomide, and frontal lobotomies also?
Got out of the hospital for liver surgery 10 days ago. Rather well
known hospital in Houston, my grade for the endo people is F! I’m on MDI so you think that it couldn’t be easier, luckily I brought my pens with me. First they wanted to change my background insulin from Lantus to Tresiba, no thanks. Then I was denied permission to use Fast-acting (Lyumjev) because I wasn’t eating. Asked them what would happen with my sugar over 200, wait for divine intervention? Difficult to get them to take my sugar before a meal. They stated they take BS 4x per day. Told them that might work for a Type 2 but not a Type 1. Who knows what would have happened if I had a pump!
oops, make that change from Tresiba to Lantus
Once I was admitted with suspected E.coli poisoning, not confirmed, and the hospital seemed to forget I was diabetic. Another time I was hospitalised with food poisoning and was allowed to manage my dosage.
In 2004 I was hospitalized for appendicitis. Not only was I not allowed to manage my insulin dosage, my insistence that I had T1 wasn’t acknowledged until a day and a half after surgery, when, by a miracle, I was able to contact my CDE. She immediately called the nursing station and gave them hell. It still took them more than 4 hours before I received any insulin. I checked myself out the next morning. The hospital had access to my medical records the entire time .
I have been hospitalized for heart issues three times, the first time in ICU for ten days after open heart by-pass surgery. I was allowed to use my pump and CGM. In fact, the resident endo helped me calculate a temporary basal profile. The other two times were overnight after having stents installed and I was given full management of my diabetes, I just had to help the nurse do her charting.
The hospital made me disengage my pump and promised to monitor my BG. After 10 hours with an incorrect basal my BG was high and going up. No nurse or doctor was available to administer insulin. I finally reinstalled my pump and forced the hospital to acknowledge that they could not monitor my BG. After appealing to the hospital Board, after my stay, they started using CGM’s in all the wards for diabetic patients.
A couple of weeks ago I was admitted for heart issues and was pleasantly surprised that there was no real pushback to me keeping my pump and managing it but I had to sign a contract and report my dosages to them . Much better than them managing it!
During my hospitalizations for cardiac issues, my endocrinologist (who does not do hospitals) told the attending endo that I was capable of managing the diabetes. I was allowed to mange pump and CGM without any problems. For one stay, I had a pump-using T1D nurse. This was the premier cardiac hospital in the western part of my state, so their handing of diabetes may be more advanced.
There are two rules for handing the type 1 diabetic in a hospital setting. 1) Never separate the Type 1 diabetic from his or her insulin. 2) Let the expert in the room handle the diabetes.
And bring your own supplies, because the hospital will not have pump supplies, CGM replacements, or your insulin.
When I had my son I was surprised. I was waiting for the doc to make changes and when I saw her she said, nope, you are in charge to make changes as you see fit. Only thing she did was change all my settings a lot lower before C-Section and I stayed on my pump the whole time.
1 hospital 2 stays allowed to have pump. Last hospitalization in diff hosp the hospitalist wouldn’t allow me to keep it!
I wasn’t on a pump at the time (2016), but the hospital staff did my injections. I told them I needed more insulin but my advice landed on deaf ears. I ended up with DKA and was not in good shape. What should have been a 4 day hospital stay ended up being 7 days.
Because I was on MDI, they wanted to put me in a sliding scale. I had overheard that another T1 was in the room next to mine and in a pump and they let him self manage. I advocated for my I:C ratio and when I had a T1 RN, she would so me if the dosing she got was ok with me.
YES but only because I’m outspoken and pushy. I’ve had a surgeon tell me he’s never heard of “Lantus” insulin before so I shouldn’t be allowed to take it. (He regretted that, and I got my insulin dose eventually!) I had to sneak insulin doses before my first child was born because I was maintaining a 100 mg/dL and they have protocol that says you shouldn’t take insulin unless BG is over 160 mg/dL — which is nuts for a woman I’m the days/hours before giving birth because baby’s blood sugar will drop after they’re born. I told my next OBGYN crew about this and how I had to sneak insulin in order to thrive. By the time I was giving birth to second baby, my OBGYN wrote on my in-patient notes that I was allowed to manage my insulin myself. At last. I know they’re scared of insulin and severe hypos, but the way insulin is managed in the hospital is a failure across the board. The amount of advocating we have to do in order to protect ourselves is nuts.
Ginger–Humility as a virtue is greatly over rated. Keep up the pushy & outspoken. The results are far better.
I tell them I’ve been managing myself for 50 yrs and have more training than any of you. Challenge them to ask me a question I can’t answer
Great answer! 🙂
I was hospitalized when I had my three children. The first two were born at the same hospital, and I knew from the first time that my doctor had said to cut my insulin the day the baby was born (to half my pre-pregnancy level). Second time around the nurses and doctors wanted to give me the same dose as I had taken the day before (three times my pre-pregnancy dose, which would have killed me). I told them I would check out before allowing them to kill me. That was in 1978. My third child was born in a teaching hospital and that was fine. I know that teaching hospitals are much more up-to-date, but I do not live near one now, and I hate the thought of being hospitalized.
After getting my insulin pens smuggled in, I was fully in charge. Before that, I had a hospitalist decide that all I needed to bring my BG down from 308 was a large drink of water.
I had a nurse tell me that since my bs was perfect it was clear I didn’t need any insulin that day.
Yes, I was able to do my own insulin (by pump) after my c-section. However, the hospital checked my blood sugar as part of my vital checks every 4 hours, even though I had to check on my meter for bolusing and to calibrate my cgm.
I have an amazing doctor who makes things very clear to the hospital staff. I was hospitalized for a severe eye infection a year ago. The doctor told the staff, “Let her manage her diabetes. She’s been doing it for 40 years without any complications and she knows more about it than all of us combined. If you try to intervene she will bite your head off.” Needless to say I was given free reign with my CGM and mdi. They would come in and ask what my bs was and how much insulin I took for my meal so they could chart it. That’s it. Because there is nothing worse than nurses who come in with the hospital’s monitor and insist on poking your finger and injecting your insulin for you.
Voila! Your reputation is well earned. Cheers.
Amazing!!
Where do you live?
The last time I was hospitalized was about 15 years ago and it was just over night had I had emergency surgery at midnight and in the morning when the doc made rounds he was going to keep me a couple days to get good at crutches but I had been for a year on them and had just gotten off so I was released before lunch and had my long acting before surgery and they have me a sliding scale for breakfast which is what I was on at the time
I was hospitalized for an eating disorder and the inability to manage my own insulin not only damaged my physical health for a period of several days, but it scarred me emotionally and my mental health has suffered terribly for years as a result. I suppose the doctors were doing the best that they could, but being both male and T1D made the eating disorder extremely difficult to overcome because my case was so unique. I was also so highly medicated that I was unable to advocate for myself. In that regard, I have no one to blame except the circumstances that led me there and my own inability to forgive the professional inadequacy of the doctors, psychiatrists, nurses, and those that facilitated communication amongst them. It was the loneliest experience of my life and I pray that no one undergoes the same thing. If you are a male and you have an eating disorder, do not be ashamed. Especially if you have T1D. Any effort to mask it will only give you loneliness in return, i can attest to this. I have forgiven the doctors who prolonged my suffering and completely destroyed the trajectory of my life, but I will never forgive myself for not speaking up sooner. Say what you need to say. Brandywine Hospital is a prison – Joe Myers
An orthopedic surgeon didn’t want to deal with that, no urgent diabetic needs, no need to call an endocrinologist to consult.
I was hospitalised twice for appendix cancer that was only diagnosed after the first operation.
I was allocated a specialist to guide my T1D insulin but when I was conscious and functioning well enough I took over
I’ve had horrible inpatient stays. Some make me remove Omnipod pump and Dexcom G6. Last time I was inpatient after surgery my blood sugar was 500 and they ignored my pleas for immediate insulin. I had to remove IV and self discharge myself so I could get insulin and put my pump and sensor back on. Only once was I allowed to keep pump and sensor on and was assigned my own endocrinologist who monitored my blood sugars even from her home. She is now my permanent endocrinologist.
It’s been over 10 years ago that I got pneumonia. I think they gave me the insulin, but with my instructions. I tested myself often.
This is one of my biggest ‘soapbox’ topics! Endos and many PCPs no longer have hospital rights so T1Ds are at the mercy of a hospitalist that often only follows the ‘cookie cutter Type 2 sliding scale’ of administering insulin. Case I was 87 at breakfast, breakfast was 40g (I would rise to well over 200 or more with 40g and no insulin). I have morning rise as well. I demanded they give me the appropriate amount of insulin, but they said I required no insulin because I was under the sliding scale low point. Needless to say, I was well over 200 in 90-120 minutes! Then they gave me enough insulin to plummet me to below 80 again. THIS HAS TO END! Hospitals should know how to manage T1D BGs. They CANNOT apply a ‘one-size-fits-all’ treatment to all diabetics, especially Type 1s. Healthcare tends to focus their treatment choice as if all diabetics were Type 2. I wish they wouldn’t call Type2s diabetic. 🙁
I’ve never been hospitalized, do everything I could not to. Twice the doc wanted me to go, chicken noodle soup and alcohol with fabric back tape (duct tape) seemed to work. But again only called off once in 30 years (no toilet at the job site, would’ve been messy!).