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If you have had surgery while living with T1D, were you able to choose the person who managed your T1D during the procedure?
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It did not occur to me to ask. I just presume nurses, dentists and doctors and anesthesiologists are qualified. I’ve had no major surgeries and no problems.
I was not able to choose, however both the anesthesiologist as well as the nurses were comfortable using my cgm and Control IQ for a 3h surgery, so I was very happy with them being open to that and how they managed my T1D before, during and after (I was able to go home the same day).
I have had surgery numerous times. I use a pump and CMG. The anesthesiologist is instructed that it will watch over my bgs during surgery and it is not to be removed. Usually they will also do fingersticks during surgery (not my choice) and will give me glucose if needed but they know they pump will adjust and handle my insulin needs.
Yes, I’ve always chosen the anesthesiologist or CNRA to do so until I’m able to; they transfer it to the recovery nurse one done in OR.
No choice. I had to disconnect my pump. The anesthesiologist was responsible for monitoring.
Over 43 yrs, have had several surgeries. 1998 not able to control anything about it, 2014 by being assertive was able to discuss with anesthesiologist and show them CGM and how to evaluate my needs, and pump stayed on. Now in our city they have protocols to cover this ahead of time. The past is gone and not worth discussing the difficulties
Not for surgeries I had >30 years ago, such as my two C-sections in the ’80’s. I haven’t had any operation that lasted even 45 minutes.
I have had a couple of surgery’s over the past 15 years. Knee replacements and bypass surgery. I always keep my own insulin and syringes with me. Hospital nurses have so many patients to take care of that they can’t bring you insulin in a timely fashion.
Having had a horrible experience in this regard during my first major surgery two decades ago, I’ve been much more proactive the couple of times it has come up more recently, and that has made a huge difference. Contact the hospital AND your endocrinologist ahead of time, and they can work out an accommodation for you so you don’t run afoul of RNs telling you you can’t dose your own insulin or any of that nonsense. Most hospitals have left the dark ages on this stuff, but it’s better to be explicit about your expectations ahead of time.
No. My surgery was not planned but due to an accident and I was taken to a hospital other than “mine.” My surgery was delayed and they wouldn’t contact my endo during the 4 days I was there. My bGs were well in the upper 200s most of the time and they were fine with that! It was emotionally exhausting for me.
Where do they get the idea that bg’s in the high 200’s is okay? The hospital I have to use (HMO) thinks that 200+ is a good target!
I refuse to allow anyone but myself to manage my pump and CGM. I have had arguments with anesthesiologists who insisted I remove my machines but I refused. If they wanted to do surgery on me they will do as I say. T1 65 years
No choice, I assume it was the staff on my floor, probably the RN assigned to my room. When I was thinking clearly, we decided on dosages together. The menu had diabetic friendly options, and I was hungry after waking up after the long fast.
Yikes! This is not an easy black or white, yes or no, answer for me. Both I have been in charge and everyone else is in charge have occurred.
I much prefer, so far as is humanly possible, that the three people being in charge of things are: Me, Myself, and I.
I’ve had a couple surgeries. One I was not allowed to keep my pump on and the hospital wanted all control. Another, I was allowed to keep my pump on and had full control (and much better sugars!)
During my hospital stay and surgery, the staff was comfortable with me managing my diabetes. I was allowed to leave the pump and CGM on. I advised them ahead of time of my insulin limits in case of an emergency. No issues.
I want to thank the T1D team who voted and provided their experiences. From all of you I get I need to self advocate for maintaini g control and connections
The surgeries I’ve had have been brief and giving over control of my diabetes to someone else hasn’t been an issue. The staff seems relieved with me and my control.
When I’ve had surgery where a local anaesthetic was used, I was in total control, but when I’ve had surgery where a general anaesthetic was used my pump has been taken away from me … even though I expressed a desire for it to be left in situ.
How long before you got your pump back?
I have had numerous surgeries throughout my life. One time the hospital picked an endocrinologist for me who I happened to really like so, after discharge, I made an appointment to see him. I went to my appointment, insurance card in hand, and the receptionist informed me that this doctor didn’t accept any insurance. I was like WTF, how am I going to pay this bill? Nowadays I think that the doctors must accept any insurance that the patient might have, back then this was not the case. After much legal negotiations I had to borrow money from my pension to reach an agreement. Turns out the doctor would have been better off accepting the money that my insurance plan would have paid him instead of being greedy and causing a whole lot of frustration for me.
If you are on Medicare, most doctors, but not all, accept Medicare-assignment. That means that they must accept what the negotiated Medicare costs for any procedure or office visit are and cannot charge you any difference. There are still some doctors who do not accept Medicare assignment and, for those, you’d be on the hook for their fees.
no but this was 47 years ago
For minor surgery I explained my pump and CGM TO THE ANESTHESIOLOGIST. For major, long surgery, like coronary bypass, I was put on drip insulin and did not resume my management for several days.
I had two cataract surgeries. They tested my blood sugar before I went in and allowed me to keep my Apple watch and phone. They would hear the high/low alarms. However the surgeries only last about 15 minutes so we didn’t expect any problems.
Maybe I am missing something here, but I don’t think this is a great question. You essentially almost never have a choice- if you are not conscious during the procedure, its going to be the person in the room administering anesthesia, and that person is assigned to you by the place providing the service. I guess you could specify ahead if you have a reasonable basis on which to do it and there is more than one choice and the center is open to this.
Nick, I answered yes, because I’ve always had a pre-op appointment with anesthesia. At that time the NP and I go over my Tandom hybrid loop system. Then on the day of the anesthesiologist along with CRNA that will be in my case (if applicable) meet with me and we go over how my pump works and what, if anything needs to be done for lows and highs. We also go over my BP range, since they are different for my post by-pass Moyamoya brain.
Not back over 20 yrs ago when I had a hysterectomy and was on MDI. For multiple day surgeries within the past 15 years (Carpal Tunnel Release, Cataract Removal, Duputryn’s Contracture) I was able to retain my insulin pump and adjust my basal delivery to prevent going low during these surgeries. My glucose levels were monitored by the anesthesiologist and I made sure they had my endocrinologist’s name and contact information. Everything went very smoothly.
Answered yes. Decades ago when I had surgery, I was able to choose. Now, I would NOT be able to choose. Hope I don’t need surgery anymore.
Of the four times I’ve had surgery, two were while I was on a pump. In those cases I explained that my pump would continue to work in the background and asked them to leave it alone. The other two times I believe the anesthesiologist just monitored me during the operation.
I was allowed to wear my pump during recent surgeries. When I was not on the pump, others monitored my blood sugar.
I just had surgery on a broken ankle Tuesday, and I tilda the surgeon and anesthesiologist to just let my lump (Tandem g6 with CIQ) run. I explained about the alarms, and they were fine with that. I woke up in recovery with my pump attached and BG 125. Hooray. For technology!
Working before hand with the anesthesiologist is key, and use the surgeon to back you up, pre/post-op is another challenge.
References… Perioperative Hyperglycemia Management: An Update: Erratum https://pubs.asahq.org/anesthesiology/article/126/3/547/19751/Perioperative-Hyperglycemia-ManagementAn-Update
I have only had cataract surgery and colonoscopy which were short enough time period where I managed my own bg. I found it to be very stressful because I had no idea what my bg would do and the person attending to me was very interested in this “novel” item (G6) on my belly. 😳 I wish we could be assured that there is one person present trained that could monitor and understand what to do if BS went low.
The last major surgery I had was an emergency appendectomy in 2004, before pump and CGM use. It was a horrible experience that became life-threatening because they neither accessed my medical records or listened to me when I said that I was a T1D. Since then the surgeries have been scheduled day surgeries, carpet tunnel and cataract. The second cataract surgery in 2019 I kept my pump and CGM. The previous two I was using MDI and had no issues. If surgery is planned, there’s time to discuss continued use of pump and CGM with the anesthesiologist, BUT, the consent forms that are required can often prevent continued pump and CGM use while there.
I had to self manage because no one at the hospital was familiar with my pump operations.
In 2009 no. I passed out the morning after my hysterectomy and interns tried to tell me I was bleeding internally and probably would need more surgery. I just said: get me something to eat. They brought me OJ and a bagel. I said I need insulin (before my pump) and I told them not to worry, I brought my own. They told me THEY must administer the insulin and we’re going to shoot up 12 units. I told them that would probably kill me. I was dressed when the doctor came in and I told him I was leaving. Fast forward to 2016. Colonoscopy. They let me leave my pump on. Told me I knew better than they did what to do. Both times they wanted me at 140 BG. Of course colonoscopy less serious surgery and faster and out patient. But one thing I learned: make sure ECERYONE involved is covered by your insurance. They told me the surgery was covered but not the anesthesia. They wanted me to pay. I told them to go jump in the lake. I fought it and won. They wanted to “balance bill” me and have me pay and it and then duke it out with my Insurance company but thank God Florida does not allow that. So, I’m not sure if the anesthesiologist got her money or not, but I didn’t pay it. So next time, everybody has to agree and if it isn’t an emergency, I’ll find someone else. It’s crap that a doctor can refuse insurance.
I’ve had three surgeries. I never have had someone managing my T1 diabetes during any of them. My experience is that Hospitals do not have a lot of medical staff that are familiar with T1 diabetes other then it’s different and more complex than T2 diabetes.
No. It never came up. I simply got their approval of keeping the pump on basal during the surgery and it was never a problem.
The night before my emergency appendectomy, the nurse practitioner in duty did not want to deal with my pump. She told me they would give me insulin at 6 a.m. With a blood sugar over 300, I snuck my pump on for awhile. I also had my mother bring my insulin the next day so I could continue in my pump after surgery. The hospital protocol was to give insulin with meals, even if you had T1D. My doctor’s office has told me if this ever happens again to say,I also need long acting insulin or I will go into a Diabetic Coma and die.”
I have had several surgeries I have been able to choose who managed my T1D except when I had surgerhy in a small community hospital where the administration wanted me to disconnect from the pump overnight while recovering from surgery. I refused and finally the administration relented .
In the 1990s I had hip repair surgery and the orthopedic surgeon who was a T1 PWD himself, arranged for the in-house endocrinologist to manage my insulin – I was on MDI and back and finger stick testing. Since then I have only had minor outpatient procedures and I have managed myself with cooperation from the MD or DPMs performing the surgical procedures.
I meant to say I was on MDI and finger stick testing back then.
I wish we had an edit button to correct typos!!!
I’ve used the technique of just keeping pump and sensor on till I get into operating room, then explaining it in there, and that worked even with stents, everything until the coronary bypass. I had been told pre-op that they would use an insulin drip during the procedure and for the first couple days after. I called my endo, who assured me they knew what they were doing, and, huh, he seemed to be right!, actually their technique worked really well (I had reattached the sensor right away, so could monitor them, and bg stayed well within normal, it was nice to be able to relax about it for a change LOL).
I answered other in that I haven’t had or needed any type of surgery for the past 54 years, how long I have been living with IDDM
Major organ removal surgery? – NO
Minor one day surgeries? – yes (it was me)
I answered yes, but really have had a couple of short procedures not surgeries. Anesthesiologist and OR nurse kept an eye on my CGM along with a very short course in stopping pump insulin if needed. As agreed with prior discussions, I had lowered my basal rates from midnight through the time of the procedure. All went well for all of us!
I was conscious when I had a lump taken off my head, so I did not have to have anyone else. My oral surgeon and I work together when I am unconscious. I lower my rate of insulin in my pump and he will test me during long surgeries.
Usually it is the anesthesiologist. As long as they know how to view my sugars and keep up with my tech, it’s not a big deal with a short surgery or procedure. I’ve never had a long surgery since I’ve been pumping.
In July of 21 I had Aortic valve replacement surgery at the Portland, Oregon Adventist hospital. I had no pump or CGM at that time. I have no idea who monitored BG during the surgery, and was on a glucose drip for 3 days, then injections of Levemir and NovoLog for 2 days. Finger sticks twice a day the entire time.
2 months later, A1C came in at 6.0.
The Adventist people did a superb job all around.
Make that 2021 – I don’t think they were doing aortic valve replacements in 211 …………………
I answered “Other.” I was too young; I don’t really remember how they handled things during the procedure other than that they had to put in my IV before anesthetizing me because my blood sugar went low. After the procedure I got upset with the nurses for checking my blood sugar themselves in the middle of the night. I insisted they wake me up every time so that I could check it myself. The only other procedure I’ve had since was an endoscopy and it was short enough of a procedure that I could check my blood sugar beforehand and again right afterwards and I wasn’t too concerned about during the procedure.
I didn’t know I could have a say in that. My major surgeries I was awake for. C-sections. So I had a plan with my endo on what to do. My endoscopy and colonoscopy I was put under, but I managed my diabetes for those procedures.
I had several ankle surgeries, for the first one, they didn’t check at all. (that surgery also went very poorly).
For the second one my endo spoke to the surgical staff in advance and let them know what to look for.
For the third, the anesthesiologist was very confused by a pump and just wanted to know what to do if it started to go low. Since i was already prepped for surgery the only thing I could think to say was treat the low and pull the medtronic off.
For the last 2 ankle surgeries my endo had me lower my basal 1 hour before to avoid a low during the procedure, she said it was far better to have it run slightly high.
I was upset with all of these scenarios because we heal best when our sugars are optimal, but the option to reduce my basal seemed to be the safest because doctors and nurses are not trained to know how to use an insulin pump, and hospitals will not allow them to monitor CGM. (here in NYC they are only allowed to finger stick every 30 minutes)
With the prospect of being in the ICU on a ventilator during the pandemic, I asked my doctor how diabetes is managed in the ICU and he told me they do finger sticks for blood sugars every 30 minutes, but since the staff are so over-worked, I bet they do not actually manage that any more. I would seriously worry about a sudden low sugar whilst healing. High sugars are less of a worry. No one at the hospital knows how to insert a CGM. However I know a pediatric oncologist on the east coast (I am in the midwest) whose department allows the closed loop systems to take care of the kids’ diabetes when undergoing hospital treatment. I would guess the parents end up do the infusion sets and sensor changes.
I marked Other because my surgeries were decades ago when choosing was not an option. During childbirth, my endo managed my T1D. During other non-T1D surgeries (none very complex), I consulted with my endo and the surgeon to determine adequate management. Not really “I choose this person….”, but I did have someone managing my condition
I’ve had multiple surgeries, most were outpatient, over the past few years and talked ahead of time with the various surgeons who were receptive to my request to use my insulin pump and Dexcom CGM. They asked me to discuss this again with the anesthesiologist and I did that each time. Not all of them were well versed on T1D, asking me to just turn off the pump! Once I explained why that couldn’t work and gave them information regarding the pump and Dexcom they all agreed it would be fine to have both devices in the operating room.
My most recent surgery was lengthy, I was hospitalized for 4 days with my husband managing my pump until the effects of anesthesia had worn off. The nursing staff were great with us managing my pump and they documented my Dexcom readings every 4 hours.
I’ve had two open-heart surgeries while a Type I (heart valve replacements) and both times it was essential that I and my wife both had input. It is ESSENTIAL to have a trusted advocate around during major surgery. The second time my wife actually had to point out to the folks attending me in the ICU after the operation that I even was a Type 1 diabetic! They were wondering why my blood sugar was so high and hadn’t bothered to consult my chart. Moreover, both times the food given me was inappropriate for a type I — they kept returning items (like sweet yogurt) that I rejected along with the next meal, perhaps because my rejection complicated their insulin calculations. The “nutritionist” actually claimed that carbohydrates were absolutely essential (apparently she did not know that proteins raise blood sugar — but of course protein is more expensive than carbs, something the airlines have known for decades). The hospital staff seemed far more attuned to Type II diabetics (the vast majority in the cardiac ward) than to Type Is. To the hospital’s credit, they actually allowed me to give a presentation to the doctors and staff after my particularly frustrating experience the second time around (which I documented in a scathing letter). I did find that my CGM did not function well in the hospital — apparently too much interference from other equipment.
I always INSIST I am the person in charge of my diabetes. If they want to do something involving the treatment, they ask me first and I decide. Period!
Other, as it depended on the dates of surgery.
More than a decade ago, I was not in charge of my T1D management during surgery and did not have the same trust in my devices to manage my BG that I do now.
Within the last 8yrs the devices have improved, all my doctors communicate with each other, and I have been able to say that I would like my devices to manage my BG, along with continual checking of my BG.
No but the person the puts you to sleep all 3 of them kept my sugers in check but also told the nurse that my sugers are high but really normal the nurses never listened and gave me so much insulin that I went very low I usually will check out eat tons of surgery snacks and eat felt much better I have to eat afterwards then everything goes normal .last surgery the nurse listened and fed me and my surgers came down to normal the nurse looked at me weird all I said my tummy was hugery still confused she released me
I had surgery 30 years ago, before I was on a pump. While I haven’t had surgery since then, I have been hospitalized and I insisted they allow me to handle my own blood sugars. I let them know I would allow the blood sugars to run a little higher than my normal so they didn’t have to be concerned about lows. I also shared my readings and allowed them to test my blood sugar.
Yes. There are almost always options. For the most part, I refuse sedation. I will be the one in control if at all possible. I don’t have medical anxiety after 50 years of T1. What I do fear is the inadequate knowledge of far too many medical professionals about T1.
For this year’s shoulder surgery, both the surgeon and the anesthesiologist were surprised that I refused general anesthesia, but went along with my wishes. Worked out great – and I actually liked seeing on the screen what my surgeon was seeing. I have found anesthesiologists to be very welcoming of my tech. It makes their job a little easier.
There are some procedures that could be damaging to the pump/CGM that would make it unsafe to have them in the OR. In those instances, I have allowed my pump to be taken off for short periods with the understanding that it will be returned as soon as the hazard (like fluoroscopy) is over.
Proper preparation prevents ppp. Advocate for yourself. Educate your providers. Be persistent and don’t let silly “protocols” go unchallenged.
I’ve been T1 for 62 years. For the last 42 years, whenever I have been admitted to the hospital for surgery or other procedures – about 10 times- I have notified Drs. & staff up front that i will be managing my diabetes. Only had one physician take issue with that, and the situation was very quickly resolved in my favor. living in a big urban area – Boston- probably helps.
I had an impacted parotid gland (salivary) and ended up in the hospital for a few days. Ultimately surgery was not needed. But after much discussion with the primary floor nurse and doctors I was allowed to manage my own insulin etc. However, the pharmacy “required” them to see my insulin pens in person and took them away for what they said would only be a half hour. 3 hours later I had still not gotten them back despite a need and many requests since the stress raised my glucose levels. Next time I will take an extra set and also tell them to come to me to look at them. I was quite horrified at little info the floor nurses and even the on-call doctor had about current Type 1 treatment and tech, ie: CGM, insulin pens, InPen, pumps, closed loop, etc. I did write letters after telling them they needed to train staff!