by A.M. Thomsen
Life with type 1 diabetes requires breathing and insulin. No doctor ever advised a patient to stop breathing, yet medical professionals have told me to stop taking insulin on multiple occasions. Such gaps in proper diabetic care become more dramatic when staying in the hospital for a non-diabetes-related emergency. Type 1s must prepare for ignorance, and be ready to spar with medical professionals to get acceptable care. This article will give you some tips on how to prepare and how to take action for better care when in the hospital.
My First Emergency Room Experience
My first visit to the emergency room in 2022 for a stroke and subsequent hospital stay required constant battles with my medical team to maintain proper blood sugars. After getting home I did extensive research, and my return trip nine months later for the same condition went much better. Hopefully, you will benefit from my battle scars.
My stroke care was excellent. The emergency doctor and staff whizzed gracefully around me. I received an intense drug – a clot buster for the brain – but it thins your blood to a dangerous level. The hospital staff must monitor you for 24 hours afterwards to make sure you have no internal hemorrhaging. Every 15 minutes through the night, the nurse tested neurological reactions and muscle strength to detect any hemorrhaging as early as possible. As the drug began to work, I could practically feel my brain opening, rapidly improving my speech and memory. Crisis averted … so I thought.
As soon as you pass through the doors of a hospital in an emergency situation, the hospital manages both your emergency and your diabetes care. Your ability to manage your blood sugar becomes tied to a large bureaucratic machine. This shaped my battles to come.
The Opening Skirmish: A Clash of High Blood Sugar Ranges
I asked my first ICU nurse, “What are the hospital protocols for blood glucose for type 1s?” He responded, “Between 200-300.”
“THAT is NOT acceptable!” I firmly stated.
Rolling his eyes, he sternly whispered, “Well, that’s what it is. Yours is 250 now. So you’re good.”
I knew the upward arrow on my CGM meant my blood glucose would soon reach at least 300 without a correction. He wouldn’t budge to allow any insulin. Still a bit shell-shocked, I didn’t put up a fight and wound up over 300. I lost the battle.
The Battle of Tresiba
The hospital offered two kinds of basal insulin, and neither one was Tresiba which is what I used at home. Fifty years of basal insulin trial and error, and Tresiba was the diabetic regimen that worked for me. Explaining that both of the hospital’s basals make me hypoglycemic unaware, I refused to take them. The hospitalist was adamant that they could not get Tresiba. The hospitalist looked at my chart. “I see your A1c is 6.6, so I know you know what you’re doing with your diabetes. Where are you going to get Tresiba?”
Luckily when leaving the house, even though I could not access parts of my brain, I swept all my diabetes supplies into a bag. I responded with a giant swoop of my arm to point at my hastily packed bag sitting on the chair across the room. “Right THERE!” Because of my good A1cs and preparation, I won the battle of Tresiba.
My CGM Offensive
Hospitals are suspicious of any medical supplies that are not theirs. Before proving that I was having a stroke, they would not accept my normal CGM reading. They had to dig in the closet and dust off a medieval finger pricker blood tester. Confirming a critical test before administering a dangerous stroke drug is fine. However, for the rest of my stay, the hospital’s protocol was to base insulin dosing on only four blood pricks per day. I regularly consult my CGM dozens of times a day, even more when something unusual is going on, like being in a hospital for a stroke. And those beautiful CGM arrows communicate the direction of my blood glucose. The arrows factor in heavily in my dosing decisions.
In the end, I achieved a stealth victory. Officially, my insulin dose was decided on the blood prick, which was sometimes three hours old. Unofficially (and after gaining the nurse’s trust) we could discuss my insulin dose with insights I provided from my CGM. Over the course of my stay, I had to convince each of my EIGHT nurses that I knew what I was doing. It paid to be courteous and respectful. Adding a few octopus impersonations during the neurological tests made them laugh and want to work with me as a team.
Taking Control of the Syringe
One time a nurse prepared a syringe with four units of insulin. She handed me the syringe, asking me to check it. “Is this correct?” she asked. Sadly I had to respond, “No, the plunger is set at 4 units, but there’s a bubble in it. Let me try.” The bubble took up 1.5 units of space. Afterwards, the nurses allowed me to dose my own syringes, which they simply reviewed. Earn their trust to work together as a team.
Sugar Siege
The dinner I ordered arrived. The menu provided details – it was vegetables and brown rice, totaling 3.5 grams of carbohydrate. It was sickeningly sweet. Despite not eating the entire meal, it shot my blood glucose from 112 pre-meal, plus insulin dosing for 3.5 carbs, to 350 with an arrow shooting straight up. The next trial was to begin.
I described the situation to the nurse as she entered the room. I said that I wanted to correct my glucose with another insulin injection. She thought about it. She stated that it was impossible because there was no more insulin dosing for the rest of the day. I told her that the 350 BG was not going to fix itself on its own. It would only go higher. She frowned at me, saying, “Sorry, nothing can be done.” She was truly sorry. I implored her for another insulin shot, showing her the CGM arrow. She was silent. Her silence ended with a strategy, “I can’t let you just take another shot. But when you took your pre-meal shot, you didn’t need a dosing correction. You’re allowed one correction, so I’ll let you use it now.” This negotiation produced some sweaty hands!
Endocrinologist Negotiations
On April 27 of this year, I had another stroke, duplicating last July’s patterning in nearly all ways. Again I swept my diabetes supplies in the infamous canvas bag. Because my research never uncovered a hospital with better protocols, we decided to give the same hospital another try.
The same stroke drug was administered and I was admitted to ICU all over again. Upon arriving at the ICU this time, I started my newly learned mantra: “I want to see an endocrinologist!” There was the usual hustle and bustle.
In the morning, the hospitalist came to my ICU room. It was a different hospitalist this time. She said to me, “I understand you want to see an endocrinologist. We contacted your clinic endocrinologist and she contacted the hospital endocrinologist, who both contacted me. The three of us don’t want you to really see an endocrinologist in the hospital, but we know why you want one. So we’re prepared to make you an offer. If you give up all three of us doctors, we will allow you to use your Tresiba, take the number of injections you want, and dose your own insulin.” Pleasantly shocked, I agreed!
Toast Warfare
There was a good food glitch in this hospital round. I arrived at the hospital early on a Thursday evening, and due to the circumstances, I had had no food since 11:30 a.m. that morning.
On Friday morning I had to pass several swallowing tests before I was allowed to order food from the kitchen. At 10:30 a.m., I was given the go-ahead to order breakfast. The food order lady told me that I couldn’t order any food – the kitchen was closed. When was it going to open up? She couldn’t tell me, she had no idea. She had no knowledge of when it might open for any particular meal. They were short on staff. What was I supposed to do? She recommended ordering all my meals now, and maybe they’d get to me eventually. The ‘eventually’ does not help maintain blood sugar the same way food does.
She warned that the food is delivered from the top of the hospital down. I was on the bottom floor, so I’ll be last. Maybe the food would arrive by late afternoon.
Describing my dilemma, she suggested that one of the nurses make me some toast.
The nurse entered the room and I told her what the food order lady said. The nurse bulged her eyes out in horror and disbelief, “WHAT?” I empathized with her, but reconfirmed that that’s what she said. Willing to help me, but understandably unhappy to do it, the nurse finally brought back two pieces of toast. It arrived by lunchtime.
Apparently the next time I am going to have to pack my own toaster with my diabetic supplies. Maybe pack a can of chicken noodle soup and a can opener too.
My Key Points to Win the Best Diabetes Care Possible in the Hospital:
- Get your A1cs and time in range under control now. A good A1c will support you in gaining trust to work with the team. The hospital won’t listen to you if you don’t have proof that you manage your diabetes well.
- Ask for an endocrinologist in the hospital. They may not know your personal diabetes regimen, but they understand type 1 diabetes. They can become a key ally in negotiating the best care for your hospital stay.
- Approximately 80% of ICU diabetics have type 2. The medical staff often apply type 2 treatment to type 1 patients, something that can be very dangerous for type 1s.
- Some hospitals strip patients of their insulin pump. Have a basic understanding of how to manage your diabetes with multiple daily injections.
- An MRI and some other tests require you to remove your CGM. Bring a replacement sensor.
- Do some research on local hospitals and their diabetes care. Hospitals are very reluctant to share their protocols, so your best source is asking other type 1s about their hospital experiences and the protocols.
- Hospitals have protocols for diabetes care, but medical staff may interpret those protocols differently. Try to get a medical professional who knows diabetes and will work for better protocols. My hospital’s protocol for glucose range is a standard hospital range of 100-180.
- I was able to use some of the medicine I brought from home. The hospital pharmacist played an integral role in insulin selection with the hospitalist. I had to use some insulin brand equivalents the hospital used. Know what works for you, be flexible where you can, and be firm with them when you can’t use a particular medicine being offered.
Earn medical staff trust by maintaining good A1cs before you enter the hospital. Advocate for yourself by asking questions and diligently searching for experienced people who will help you. Be resilient and fight for optimal care. Be a Warrior!
Additional Resources:
This is an excellent example of how many hospitals treat us type 1’s. I knew I was going in for surgery and had my endocrinologist put in my medical record how I was to be treated and to be put back on my pump and CGM and I stated that the last time I was here I had DKA with a 1460 BG and didn’t want to have any problems they got my BG so out of control I went to almost 500 and was extremely upset with the staff I told them that they hadn’t even looked at my medical record to see what my endo had put there so they wouldn’t screw up and then they did read it and apologized. You have to be your own advocate when you are hospitalized.
Absolutely Roy – thanks for sharing your experience.
I have had MULTIPLE hospital encounters since I went on a pump in 1993, and a CGM in 2009. I will give up my insulin control when you peel this sucker from my COLD DEAD HANDS! If you are conscious, the first rule is to show up with all your own supplies, including chargers, lancets, insulin AND GLUCOSE TABLETS. Keep them in the bed with you at all times. Second thing is do not, under any circumstances, let them separate you from the pump. If you have to have surgery, insist that your pump and CGM stay with you, in a sterile bag if necessary. The best person to speak to is the anesthesiologist. They know about pumps and CGMs, and most appreciate not having to worry about blood sugar. Offer to teach their interns and nurses about our technology. And always ask how many grams of carbohydrate are in that bag of Dextrose they just hooked you up to.
You are your own best advocate…and if you are going to show up unconscious, just hope they don’t kill you…
Thanks for adding your thoughts (and tips too) Sara!
How do we change these insane archaic hospital protocols. I’m type 2. I took my type 2 friend into the emergency room for what we found out later was Covid. They took her back to a room after about 2 hours. The waiting room was filled with non face mask wearing people. There was no place to isolate ourselves from others. Oh, and by the way, I have leukemia which makes me doubly immunocompromised. They took her back and did a ct scan without removing her Dexcom G6. They never tested her for blood glucose even though they knew she was a diabetic.
I’m waiting up in the waiting room after 3 hours, and I get a frantic text that said she was in some room in the hospital and to go get help for her because no one has checked on her for an hour and she has become light headed from lack of food and can’t get up to yell for help. I know my obituary is going to say killed by hospital. I have a similar story about the hospitals cancer center.
How do we get hospitals to become up to date. How can or can TCOYD advocate to change these hospitals/doctors? Help!
You could write a constructive letter to your hospital’s administration, and if you really want to get their attention, mention that you’ll be sending a copy to JCAHO, the Joint Commission on Accreditation of Healthcare Organizations.
I have had to advocate for myself when hospitalized for pneumonia, outpatient surgery, and DKA. It is always an uphill battle. I appreciate the staff and the doctors and nurses who work in these environments but I am not afraid to speak up when it comes to my type 1 diabetes. I love this article and now find that I must write instructions out for my spouse to have on hand in the event of a stroke where I cannot speak for myself. This last round of hospitalization with pneumonia was seriously bad. After 3 days I want to leave and can’t take it anymore. I am still a bit shaky but the meds and oxygen are doing their job. I ask the doctor if I can be discharged and he says that my Blood glucose was showing kind of high a few times. I say that is because the staff here is to listening to my need for insulin at certain times and especially before meals. He didn’t say a word and said well you look much better and are up and walking so I will release you this afternoon. BTW…my roommate in the hospital was 100 year old woman with kidney issues. I have pneumonia and was likely contagious! Be your own advocate and my your family aware of your needs.
Yes it’s so important to speak up for yourself, and good idea to write out some things for your spouse/family. Hope you’re feeling better, and take good care.
Back in December of 2021 I went in the hospital for removal of my thyroid and two para-thyroid glands.
I would have to spend one night in the hospital.
I packed my kit including both my Lyumjev and Tresiba. I wear a Freestyle Libre 2 CGM.
I had heard too many horror stories of hospital mismanagement of Type 1’s. I was not going to be one of those. I spoke directly with the Surgical floor Charge Nurse and made it clear that I would be managing my Diabetes while I was in the hospital overnight. I let her know that no one would be managing it better than me. My low and high alarms are set to warn me of impending highs and lows, both my pens were good to go. After a few go arounds, she finally relented and agreed to let me handle it. I assured her if I required help, I would be sure to ask. I believe proper Tupe 1 Diabetic protocols should be mandatory in every hospital and current insulins should be available in the pharmacy if you can’t bring your own.
Being in the hospital is unpleasant enough without dealing with Diabetes complications because staff won’t listen to the person that knows their body best. You…
Stand up and advocate for yourself or have your family advocate for you.
Thanks for this informative article.
Well said, Linda!
Excellent post, Ms Thomsen! It’s the first I’ve seen on this really important topic for the many T1ds (and others) it could benefit, so earns you a free membership in the “WE HATE HOSPITALISTS Club”!!…and incidentally, for doubling the club’s current membership as well. [smile]
I had my first and hopefully last experience with the breed several years ago for an unrelated surgery while I was still on an MDI regimen, so at the time, had neither the defensive awareness of ‘hospitalists’ in general nor had your CGM defensive weapon support for my resultant 4 day war with the lot. Reading about your similar experience, I was curious whether you had possibly also used this largely transparent one which I used as helpful with the bolus problem. It was to always order a hi-carb meal, then only eat as many or few carbs as appropriate to one’s glucose needs and actual insulin on-board. Fortunately, I was allowed to use my own finger-prick routine to help support ‘suggestions’ to the nurse when needed as a departure from their hospitalist’s prescribed standard 4 shots/day limits. (By the way, you can’t blame nurses when their orders conflict with your own regimen since they’re mandated to strictly follow their hospitalist’s directions…on pain of perhaps losing their license and job if deviation is discovered. So remember to emphasize the value of a suggested change and avoid mention of its violation aspect.
Since increased understanding of the ‘enemy’ is often useful to one’s defense, I’ll add some thoughts I came to conclude later on why in the world hospitals are increasingly using hospitalists without allowing patients’ own doctors participation as well. Lacking any apparent awareness by the two participants of this actually being a medical issue needing resolution, it unfortunately indicates there’s probably little or no chance of it ever being corrected. Hey, what say my two favorite T1d docs here start a movement in the medical community to first admit the situation violates their vows, and next to fix it???
Researching HOSPITALIST will serve our unaware readers (if any) the best of course, so I’ll just summarize the ‘why’ of this sometimes but clearly unhappy conflict with what may frequently NOT be best for the patient.
As with so many things in our world today, we can also blame this one on THE BOTTOM LINE! While we may often forget or not realize that hospitals are also businesses which need to be profitable to survive. So what better way then to reduce the potentially huge but undefinable liability costs involved in treating hundreds of sick patients than by contracting a transfer of most of that responsibility and liability to a group of separate medical doctors(‘hospitalists’)…in addition to realizing its accompanying cost benefits of standardizing treatment, reducing medication inventory, insurance costs, etc., etc.? QED
P.S. Had I known, I should have done what Roy did (see above), have my doctor specify in my med records the minimum medication & treatment T1d patients need if hospitalized. Not sure it would have helped without doing more, but at least it would put a fully (and yes, better) qualified professional on our side if push comes to shove, and sure couldn’t hurt. (Added to my priority do-list now as one never knows what lies ahead!)
Thanks for sharing your thoughts, Bill. It’s definitely a big ship to turn around, but hopefully things will improve. In the meantime, always a good reminder to advocate for yourself and what you need.
Excellent article and strategies. I recently had an anterior discectomy of c-4 thru c-6 vertebrae and was upfront with my neurosurgeon and had my Endocrinologist give me her written instructions to share with the hospital staff and surgeons. I took off my CGM and TandemX2 -CIQ due to possible interference with the type electronic equipment used for the procedure and the monitoring devices. In the recovery room I awoke to the charge nurse asking me to place my CGM & pump back on. I was prepared for all possible options: had brought extra CGM sensors, my pump reservoirs & sites, my unopened Humalog vial and an unopened Lantus pen and needles incase the hospital’s protocol would be for MDI. I also had my own finger prick tester with me. Oh – and applesauce cups, fruit cups and juice cans. I did have my husband enter the sensor code. I was just in overnight for observations but all the nurses in the Nuerosurgery ICU were impressed with my tools. They’d ask for my sensor reading and would be awestruck when Siri answered with the reading. Eventually they brought a 3 page waiver of liability and came se for me to sign for handling my own insulin needs! I was 100% in range 48 hours after surgery.
Wow, you’re awesome…you must have been a Girl Scout! Nice to hear about a positive experience.
With a respectful minor disagreement regarding your items 2 and 7.
2) Just because someone is called and endocrinologist (many are thyroid surgeons), it doesn’t mean they truly know how to treat a diabetic.
7) I’m not convinced that all hospitals have protocols, and even for the ones that do, I’m not convinced that the protocols are read, understood, or followed.
If there is anything I’ve learned lately it is that with fewer than 2 million T1Ds and 21 million T2Ds, even most endocrinologists have little exposure to us – especially in an acute setting.
So my story if you care to read on:
About 2 years ago I had the fortune / misfortune (you will see what that means in a minute) of having back surgery at a very highly respected major medical center; they even have a dedicated diabetes department.
The surgery was expected to take about 3-4 hours and I would probably stay overnight so I was very happy when I was told that, by policy, I would be assigned an in-hospital endo for my case.
Note to self – beware hospital policy. Every exception to the policy requires an act-of-god and sometimes that’s not the doctor!
The surgery went extremely well and I was wheeled to a room for my overnight stay. Let me emphasize, other than the surgery being a resounding success and me being fortunate to have floor nurses that really wanted to take good care of me, this is the end of the good news.
Policy and in-experienced doctors soon weighed in. By the time the endo placed the insulin order I was a couple hours post-surgery, it was 12+ hours since I had eaten, and my BG was in the mid-200s. My normal, immediate correction would have been 10u and then manage every 30 – 60 minutes after (I get very insulin resistant above 200). The endo, being “afraid [I] would go low” only authorized 2u of Humalog.
A low carb meal was delivered because policy said I needed to eat. Now my BG is pushing 300. By policy my meal carb ratio shall be 1:10 (my real ratio hovers around 1:5). By policy I’ve already had my correction, my low carb meal is about 20g, so I get 2u instead of the 10u that I ask for! I take my new 2u and eat almost nothing opting for water instead.
Soon, recognizing that I am visibly showing signs of hyperglycemia, the nurse has her supervisor in my room. She is on the phone begging my endo to order more insulin because my CGM says that I’ve now been at 300+ for a while and it keeps going up.
I’m told the endo says the risk of going low is too great so I have to wait for the next finger stick (policy) before anything else happens.
By now I am at 325+ for probably 2 hours (I can’t remember the last time I was above 300 for more than 30 minutes), the nurse has the doctor on the phone again and puts me on the phone! We have a very blurry argument about my treatment because I’m getting confused. I think I said something like “are you trying to kill your patient?”
The endo finally relents and orders a blood test to see if I’m going into DKA and guess what – I was!
The Endo offers to hang an insulin IV. I talk the endo’s initial rate up from 1u/hr to, I think it was 3 or 5u/hr AND I got them to violate policy to do finger sticks every 15 – 20 minutes. Even that victory was short lived since the policy could only be violated until I was no longer a DKA risk, i.e. under 200.
Since that time, I have found that ADA, Scripps Hospital, UMass and some other facilities have some excellent treatment protocols published online. Now I am not afraid to insist that my doctor/hospital has something similar (and I want to see it), otherwise I very strongly insist that I am in charge of my own diabetes care.
Unfortunately a common situation, and one more example of why things need to change in the hospital setting. Thanks for sharing your experience and the places/orgs with good treatment protocols others can research as well.
I have learned, the hard way, to have my insulin entered into the system as PNR, which means “as needed”.
On a hospital stay about six months ago for gastro issues, someone cancelled ALL of my insulin, including basal. I insisted on seeing a doctor to have it reinstated. It had been cancelled because I hadn’t been eating much before my admission, so some bright spark decided I wouldn’t need insulin. Sigh. Getting it reinstated and as PNR worked. My first hospital admission where I didn’t have to battle for meal and correction doses (after the initial battle).
I had overlooked the food issue. After a few meals where I didn’t get any bread to have with my soup I discovered I’d been put on the so-called diabetes diet. The hospital used the ancient exchange system and apparently my bread was a no-go. I was in because I was dangerously underweight due to the gastro problem. I needed that bread. Next time, I’ll be sure to ask for a dietician to put me on a different diet.
Hospital nurses can only do what the computer tells them to do. If you have a problem, insist upon seeing a doctor. It doesn’t need to be an endo. Just persuade the doctor to change your treatment in the computer system.
Thanks Lee…appreciate you sharing your experience and what worked for you!
A quick PS. After I discovered why I wasn’t getting bread, I got around it because I was mobile. Every day, I left the ward and went to the coffee shop downstairs to buy a bread roll. If you are bed-bound and need carbs, ask one of your visitors to get some for you.
Also, I was on a drip for the first few days that had a few medications in it. I was having to pee desperately every hour. I mentioned it to one of the nice young doctors who came to see me. I told him I had found online that one of the medications (can’t remember what it was) could be causing the frequency.
He went away for a while. When he returned he told me he’d consulted Dr Google and that medication didn’t cause frequent peeing.
I told him that I’d also consulted Dr Google, which said it did.
He pulled his phone out and after consulting it for a few minutes he said that Dr Google said if you have diabetes that medication will make you pee more frequently.
I had to finish the drip I was on, but after that the particular med was not added to my next one.
Thank you, Dr Google,and the nice young doctor.
Wow! That is wild…extra points for you for being your own advocate (and a great Dr. Google Physician Assistant!)
I’m a Type 2 on MDI after a tumor was removed from my pancreas in 2019. I fell in May while out of state on vacation and suffered an open fracture of both the radius and ulna requiring surgery. After 4-5 hours, I checked my CGM and called the ER nurse telling him I needed insulin. He told me I would need to talk with the hospitalist who was very busy and not available. I had insulin with me so he suggested I just take care of myself. I had surgery 12 hours later and they did a finger stick to make a decision about my dosage. After surgery, they told me they had to follow their protocol. The night shift does a finger stick at 5:30 am and after breakfast around 10 AM, a nurse appears with both long and short term insulin. After a difficult conversation with the charge nurse, I was told that I had to conform to their regimen of using “the chart” to determine insulin dosage and finger sticks done at the convenience of the staff. I determined to get out of there as soon as possible. I needed sleep but was afraid of having a hyper or hypo episode. I took as little pain medication as possible so I could monitor my blood sugars by how I felt without a CGM. Before I left the hospital, I needed to attach a new sensor, and because of my injury, I needed the help of a nurse who had never seen a Libre sensor application kit, and she seemed genuinely interested in how a CGM works. I know that they were only doing what they were trained to do, but there has to be a better way!
Agree…thanks for sharing your story, Carol!