Having Operation, Diabolical insulin control

[Fenn]

Hi

I am home about five days from a heart bypass operation, apart from it being awful, I would like to tell my insulin story in the hope someone can avoid a very frustrating situation.

Maybe a month before the op I was contacted by diabetes “expert” at Royal Brompton hospital, when they discovered I self funded libre they asked me to connect to them and monitored me via that. They were very happy with my control and didn’t need to make any changes, they said it was very important to have good control before and post op as it helps recovery. All was well.

Until I arrived in hospital and they told me not to control my own BG as they had me on an infusion, they had me hooked up and injected two units per hour of Actrapid? (This I believe is rapid acting (I use long acting at bedtime, rapid with food)).

I have to repeat that as I can’t actually believe it, 2 units of rapid every hour, night and day regardless of food

For the two days I was there waiting for op I was in a rabbit in the headlights mode over the whole operation thing but still kept saying “can I look after my own insulin please? This will not work”.

well surprise surprise within 24 hours, high 20’s then the op happened, spent the next few days in Lala land, once I hit the ward, my BG was still in 20s,

They actually wanted to keep me in hospital a week later because my BG and the wanted their diabetes team to review my high numbers laughing but not funny, the last full day I was there I was given back control and guess what? Well it’s taken me a good few days to get a 4~6 BG sleep but I’m back on track.

So the reason for my rant, if you are having an op, please get more details about what they intend to do, the nurses are just following a pre determined plan, it’s the diabetes team that need to explain their plans, there are clearly holes? In their knowledge and in my case their general sanity and I wished I had expected it in advance.

Hope this helps someone.

 

[Brunneria]

Nightmare!

thanks for letting people know.

 

[zand]

Absolutely crazy. Thanks for the info.

I hope you are recovering now @Fenn

 

[Fenn]

Absolutely crazy. Thanks for the info.

I hope you are recovering now @Fenn

Feel like I’ve turned a corner thank you!

 

[Fenn]

I only posted because I meant for people to discuss a plan rather than have it thrust upon them, the opportunity to disagree beforehand would have been very useful I believe, but who knows, maybe I would have been ignored anyway as I was only the patient.

 

[KK123]

Hi @Fenn, thanks for posting. This is my biggest worry actually, when control of your own management is taken away, whether it's by being in hospital or being whisked off to a care home at some stage, or because mentally you can no longer do it. Whoever ends up in charge will always revert to some standard protocol, whether it be by shovelling an excess of carbs down your neck or like you in this case, messing up your usual insulin. I know it must be hard for hospitals but why do they insist on giving ALL insulin users the exact same dosage with seemingly no input from the so called Hospital diabetes experts or even by listening to the patient's history.

 

[barrym]

A few years ago I had a major op, and I was told beforehand I would be in the best hands for managing my diabetes. Well it turned out they used a regime of post event management rather than preemptive. Timings were random depending on nurse availability. So they were feeding me by tube, checking bloods about 3 times day, and giving me a big jab of insulin to catch up.

After much stress I convinced to let me do it myself. Things went better from then on, apart from the lack of any low carb food but that's another story.

Everything else about the care was faultless, and without the surgery I wouldn't be writing this. I can't thank them enough with the exception of the diabetes care or understanding.

 

[Allen50yearsT1]

Hi

I am home about five days from a heart bypass operation, apart from it being awful, I would like to tell my insulin story in the hope someone can avoid a very frustrating situation.

Maybe a month before the op I was contacted by diabetes “expert” at Royal Brompton hospital, when they discovered I self funded libre they asked me to connect to them and monitored me via that. They were very happy with my control and didn’t need to make any changes, they said it was very important to have good control before and post op as it helps recovery. All was well.

Until I arrived in hospital and they told me not to control my own BG as they had me on an infusion, they had me hooked up and injected two units per hour of Actrapid? (This I believe is rapid acting (I use long acting at bedtime, rapid with food)).

I have to repeat that as I can’t actually believe it, 2 units of rapid every hour, night and day regardless of food

For the two days I was there waiting for op I was in a rabbit in the headlights mode over the whole operation thing but still kept saying “can I look after my own insulin please? This will not work”.

well surprise surprise within 24 hours, high 20’s then the op happened, spent the next few days in Lala land, once I hit the ward, my BG was still in 20s,

They actually wanted to keep me in hospital a week later because my BG and the wanted their diabetes team to review my high numbers laughing but not funny, the last full day I was there I was given back control and guess what? Well it’s taken me a good few days to get a 4~6 BG sleep but I’m back on track.

So the reason for my rant, if you are having an op, please get more details about what they intend to do, the nurses are just following a pre determined plan, it’s the diabetes team that need to explain their plans, there are clearly holes? In their knowledge and in my case their general sanity and I wished I had expected it in advance.

Hope this helps someone.

I had exactly the same problems when I was admitted from casualty due to a gall bladder issue which needed removing. Because I arrived in an ambulance I had no spare insulin or infusion sets for my pump, which ran out the after the operation the next day day. My partner was away so couldn't bring any down that day. They put me on an IV insulin drip and didn't consult me as to how much basal was required. I also didn't have my pen injector but all the nurses did was do blood tests every 2 hours 24x7, so not much sleep for me. When my partner did visit she brought all I needed to get my pump working again. The sister in the ward didn't think I should revert to it, but I kept telling her it has been calibrated for my needs with basal rates and calculations for bolus'. The nurse had to come and change the sachet of insulin in the IV drip as it had almost run dry. I took that opportunity to get my pump working with a new infusion set. The horrifying things that happened whilst I was doing this was the sight of 2 sisters almost running to get me hooked up again with the IV. Later on I was due to leave when a blood test revealed a high potassium count from the lab. When the young doctor told me this she said I shouldn't worry because the lab probably took too long to check my blood, she would do another and test it herself immediately. When she left the sister came up to me with a grin on her face saying "well you won't be going home today!"
Luckily the nice doctor confirmed about an hour later that my potassium reading was absolutely fine which her senior also confirmed so I was able to escape at last. A truly unforgettable experience and not very pleasant at all. I'd like to add that the nurses in the ward were exemplary, the sisters however were not.

 

[JMK1954]

Just horrifying !

 

[EllieM]

I think the real problem with hospitals is if you are in a general ward but not able to control your own insulin. I've had a few operations (all in the UK before I emigrated to Australia and then NZ) and my diabetes was fine when I was in control (two caesarians, appendix and a broken leg ).

My T1 mother ended up in intensive care in 2011 with multiple organ failure and when I flew out to see her I was expecting her to be dead by the time I got there. (ICU were not optimistic about her chances). But they did an amazing job and after about a week were able to transfer her to a general/recovery ward.

At this point she was mentally aware but very weak, too physically weak to do her own injections. Of course, as she was now recovering her insulin needs went down, but the nurses were unable to reduce her dosages without authorisation, and the diabetes doctor was off for the weekend. After a night of hypos she requested a reduced dose (her normal dosage was about half of what they were giving her) but the nurses told her that they weren't allowed to do this. Her only option was to refuse either her basal or bolus. As she was too weak to eat quickly, she elected to skip the bolus, and just ate enough to stop herself being overwhelmed by the basal. Luckily after 24 hours she got the diabetes doctor back, who grovelled and authorised the nurses to give her doses as she wished, but the whole episode confirmed to me that I would not trust a normal hospital ward to take care of my insulin needs.

And @Fenn 's story suggests that the situation is if anything worse ten years later....

 

[Fenn]

Thanks guys, I know it’s very different but it gave me a tiny taste of the horror it must be for someone in a care situation, that isn’t given any trust or decision in their own care, I am a large 50 year old “tough guy” and felt completely helpless.

I should add, apart from that situation and one nurse who made a wrong turn in career path, all the staff were incredible! ICU, HDU, ward nurses, the food bringers and cleaners amazing! I’m very grateful. The cleaning due to COVID is staggering, I never felt at risk at all.

 

[jjraak]

Sorry to hear your story @Fenn
a warning to many, for sure.

and glad to hear your doing well after the surgery.

best wishes for a speedy and full recovery.