experiences of having T1 Diabetes and staying hospital

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Chris93

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Relationship to Diabetes
Type 1
Hi
I have recently been in hospital to have surgery and feel that inpatient care for diabetics is not as good as 30 years ago when I was first diagnosed. When I went in for surgery I was asked to arrive at 7.15 am. Upon admission, I was meant to be put on a sliding scale of insulin and a glucose drip to help control my blood sugar levels as I was nil by mouth. This wasn't done until just before I went for surgery at 3 Pm so I ended up giving myself correction doses as even though the nurses were checking my blood sugars nothing was been done when they were rising. The surgery went well and don't get me wrong the nurses were lovely and made sure I was comfortable and generally cared well for me. I just feel like the guidelines for in-patient care for diabetics need revising. My blood sugars continued to be high even when I was on the sliding scale and the nurses were changing the rate of insulin but they weren't changing the glucose levels. so I again ended up giving myself correction doses of the insulin I had brought in from home. Once I came off the sliding scale and began to have more control of my dosage my sugars came down. My insulin was locked away which I understand why but when I asked for it at meal times the nurses were run off their feet and it was hard to get hold of them. I know the window for having insulin is longer than it was 30 years ago but it still takes 10-15 mins for it to begin to work and I find it helps my sugar levels if I have insulin before food. One of the biggest concerns was when my insulin from home ran out the nurse went to order more from the pharmacy and found it wasn't down on my medication list, which had been checked numerous times when I had arrived for surgery. Luckily the nurse managed to talk to the pharmacist and get me some. Sorry, I know this is a long message but I just think general healthcare knowledge of diabetic care is outdated, and even though they don't need to know the ins and outs of diabetes the basics need to be updated. Blood sugars can be hard enough to keep at a good level but when you add surgery, stress and I feel incorrect use of equipment and guidelines, into the equation it becomes even harder. I was just wondering if anyone else has had similar experiences
thanks
 
Yep!

Got told pre admission that I'd be in the hands of experts. I've no doubt it was true, just not diabetes.

Sliding scale - huh! Once I'd recovered enough from the op to know what was what, I could see they were fluctuating from mega high, to low and back.

A quick call to my wife and all my kit came in at the next visit, and after a bit of negotiation I was allowed to look after myself.

A cautionary warning to all.
 
I have only been in hospital a couple of times since my diagnosis and been able to take my own insulin.
It was locked in a cabinet next to my bed and I had my own key (or it may have been a combination lock) so I did not have to wait for a nurse to find time to get it for me.
I never used the sliding scale - I talked to my consultant and anaesthetist and explained how I managed my diabetes so they were happy for me to continue to do so.
I most certainly would not be going into hospital without my own diabetes kit and extra just like any other "overnight trip".

The only down side was a requirement for the nurse to wake me every hour throughout the night to take my blood sugar are write it on my chart. I say every hour but actually she decided I was doing ok at 4am and decided not to wake me (or tell me) and I was awake already waiting for her until breakfast came at 6am.
 
It's best to avoid/refuse Sliding Scale as it can be dangerous in the hands of a nurse without diabetes training. Also it's not necessary assuming you know how to use your insulin. I've had various ops in Private hospitals and never found Sliding Scale being used and the nurses assume I will do my own insulin. I always allow them to do BS tests whenever they want.
 
helli said:
I talked to my consultant and anaesthetist and explained how I managed my diabetes so they were happy for me to continue to do so.
Click to expand...
I'm pretty sure that's the general recommendation now: let the patient handle things whenever possible.
 
I wonder why they put people on a sliding scale if people are competently managing on a basal/bolus regime. I could understand that with mixed insulin and a nil by mouth situation, it would be necessary, but I doubt there are many Type 1s on mixed insulin anymore. And I accept that some people may not be competent or well enough to manage it themselves, but going in and being Nil by Mouth for an operation or whatever should not be a problem for most people surely.
Personally, the thought of handing over the management of my diabetes to anyone scares the living daylights out of me, let alone handing it over to any number of nurses that might be on duty that day or the next. Quite bad enough having to manage with hospital food!
 
Handing over my diabetes management to anyone is my worst nightmare.
That said managing my levels for an operation requiring nil by mouth is a challenge. The anxiety of the upcoming surgery makes my levels rise so I need extra insulin but I don't want to give myself too much extra as I would hypo then need to treat it and I would not be nil by mouth. On both occasions, I felt I was walking a tight rope.
 
helli said:
I have only been in hospital a couple of times since my diagnosis and been able to take my own insulin.
It was locked in a cabinet next to my bed and I had my own key (or it may have been a combination lock) so I did not have to wait for a nurse to find time to get it for me.
I never used the sliding scale - I talked to my consultant and anaesthetist and explained how I managed my diabetes so they were happy for me to continue to do so.
I most certainly would not be going into hospital without my own diabetes kit and extra just like any other "overnight trip".

The only down side was a requirement for the nurse to wake me every hour throughout the night to take my blood sugar are write it on my chart. I say every hour but actually she decided I was doing ok at 4am and decided not to wake me (or tell me) and I was awake already waiting for her until breakfast came at 6a
Click to expand...

helli said:
I have only been in hospital a couple of times since my diagnosis and been able to take my own insulin.
It was locked in a cabinet next to my bed and I had my own key (or it may have been a combination lock) so I did not have to wait for a nurse to find time to get it for me.
I never used the sliding scale - I talked to my consultant and anaesthetist and explained how I managed my diabetes so they were happy for me to continue to do so.
I most certainly would not be going into hospital without my own diabetes kit and extra just like any other "overnight trip".

The only down side was a requirement for the nurse to wake me every hour throughout the night to take my blood sugar are write it on my chart. I say every hour but actually she decided I was doing ok at 4am and decided not to wake me (or tell me) and I was awake already waiting for her until breakfast came at 6am.
Click to expand...

I had to have a sliding scale as I was nil by mouth all-day
( unnecessarily) and was under a general anesthetic for over 6 hours. but I didn't know I could refuse a sliding scale.
I have previously brought in my own insulin and agreed on self-medication with the nurses but this time one of the nurses picked it up off the side and locked it away so I'll take that as a lesson learned and keep my insulin well hidden.
 
Yes, definitely hide your insulin! I hid my back up supplies in my bag, and when the nurse asked to have them, I refused. She then gave me a key to the little cupboard as @helli mentions above but even then I kept it in my bag because I didn’t trust her not to take it from the cupboard.

I too am scared of the sliding scale. I kept my pump on for all my labours and told them that if I had an emergency C section, I wanted to keep it on too. My sliding scale fear is because a friend had too much insulin on it and had a massive hypo. He told the nurse the insulin amount would be too much but she followed her chart and ignored him. Frightening!
 
Why does nil by mouth mean you need to be on a sliding scale? Your basal insulin should hold you steady without food and bolus insulin. I appreciate that stress may well push levels up in that situation but you could always manage that with a small correction as necessary. I must admit that being under anaesthetic for 6 hours would mean that the anaesthetist or some other person, hopefully a DSN, would need to have some control over your levels during that time but things should be reasonably steady in the absence of food and with modern technology like Libre, far easier to keep tabs on.
 
rebrascora said:
Why does nil by mouth mean you need to be on a sliding scale?
Click to expand...
It doesn't
I was on nil by mouth without the sliding scale and managing my insulin as you describe.
My understanding is that the anaesthetist is responsible for tracking blood sugar levels whilst under general anaesthetic (hence, why he was the guy I had to convince to let me manage my diabetes myself). He had glucose and insulin on hand whilst I was under but didn't need it as my basal was keeping me stable enough.
 
When I was first diagnosed and in hostial due to that. When I was taken of IVs the insulin would sometimes not get to me until about pan hour or more after I've eaten.
 
I have the dual problem. Keeping my own insulin for management, and keeping hold of my Creon which I need to digest food and gain nourishment.

Haven't yet tried my CBD oil capsules in a hospital situation, I need them to reduce the spasticity in my legs, particularly at night.
 
I had an op a couple of years ago while still on MDI. I was told I'd be managing my diabetes as usual while awake, although I did have to run every jab by the nurse - she did call the on-duty doctor in when I wanted a correction dose at bedtime, but she was just doing her job correctly. I felt very well-looked after and listened to. :D
When I got home the next day, I noticed loads of little prick marks on my ear-lobes - I'd wondered how they'd monitored my BG during the op. :confused:

Sorry to hear you were battling the nurses @Chris93 with their over-zealous glucose-giving. My op was just after the first Covid lockdown had ended - the nurses were the opposite of rushed off their feet, so my experience doesn't really compare. I think I was the only patient on the entire ward at one point. o_O
 
I kept hold of my bg kit and insulin and monitored my bg myself when in hospital but I had to tell them how much I’d taken and when (this could be when they next came round though I didn’t ask permission first)
 
I'm certainly not a fan of sliding scales. The last time I was in hospital it kept me at 4 or below for days. The nurse measured my blood glucose at 4.0 at one point and said that was fine. I had to point out the my Libre was showing a continuous fall in blood sugar so shortly I'd be hypo.
It took a couple of days before I saw the diabetes consultant who said I wasn't on the right scale. In the meantime I kept having to take lots of dextrose to keep my sugar levels up (I did let the nursing staff know that I was having to do that).
I usually try to avoid sliding scales but when I came in I'd been vomiting for days and was struggling to keep my blood sugar levels and ketones down at that point.

Also, I've found a lot of confusion about recording insulin doses in hospital. There only seems to be space on the form to record mealtime doses but not correction doses. When I'd just started eating again I was dosing just 1 unit for food that I was managing to eat but still giving myself a lot of correction doses. The correction doses were rarely recorded because there wasn't a space for them on the form, only space for mealtime doses. Some of the nurses humoured me and added them.

I've also found the pre op assessment information about being first on the list hasn't always been correct.

Having said all that I did manage to.hang on to my insulin pens, dextrose and Creon and, after I'd spent a few days scanning my Libre every time my blood glucose was taken and commenting on how close the readings were, they didn't test my blood sugar much and recorded my Libre readings. Luckily it was an a accurate Libre!
 
Have to disagree about inpatient care now over 30 years ago.

Was in hospital last year for 4 days & was allowed to manage condition myself, all nurses did was record insulin doses & libre readings, 30+ years ago insulin would have been given by nurse & bg testing done by them to.
 
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