Hi, I’m Debbys partner, thanks for all the information and encouragement! Good to hear you are doing well. Thanks, Dom
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Removal of pancreas
- Thread starter Debby11
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Hi Debbie,
You asked how I decided to go ahead with the operation, first of all my Surgeon said if my cyst wasn’t cancerous already it would likely turn very soon and secondly I had watched my very dear Aunt die of Pancreatic cancer a few years earlier. It is a big operation and the first week after the operation was just a blur but I was very well looked after in ICU with one to one nursing. I was taught the basics of how to manage diabetes before I left hospital. After six months I was well enough to attend a Dafne course at the hospital which was brilliant and gave me an indepth understanding of diabetes. It took me about a year to recover my energy but I was 71 years old at the time of the operation. With regard to the Creon it soon becomes second nature that you have to take them with each meal or snack. I cut down on all fats because they are the hardest to digest. If you forget the Creon you will get very soft stools and wind pain. I, like you, kept changing my mind from one day to the next. The decision to have the operation was daunting but in the end I could not tolerate the thought that my cyst could turn cancerous and become inoperable like my Aunts. Hopefully when you see your Surgeon he will give you a bit more help in making a decision.
Take care and look after yourself,
Kind regards
Annie x
Hi Dom,
Yes, you need a lot of reliable information, I was so grateful I found this forum when I was first diagnosed. I know how hard it was for my Husband and Daughter when I was going through the agonies of trying to make a decision.
Kind regards
Annie
Hi, Debby finally had the elective pancreatectomy 17 days ago, after much soul searching! She is doing well, hopefully home tomorrow. Wonderful care at Royal Blackburn Hospital, under Miss K and her team. Hope you are well, Dom
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Proud to be erratic
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Pleased to hear about Debby's successful elective panc'y.
I needed several weeks of TLC from my wife, but got stronger and more active every day, learning how to manage my D. I was not initially encouraged to learn how to carb count and no-one explained the benefit ot doing that. So my BG was extremely erratic for many months. ThT was a mistake in my opinion. So if Debby can be encouraged to progress with that do encourage her. Start with breakfast and perhaps keep that straightforward and repetitive - then she will steadily come to start each day from a stable start point. From there gradually move on to other meals. It will take time and there will be plenty of moments when just as she feels she's got the hang of it all - something will come along and dispel that smug feeling. But just take each day as it comes. Learn a lesson if it is obvious what the lesson might be and no matter whether there was a lesson to be learnt park today and get on with tomorrow.
Do feel free to ask questions, any question. Folks on this forum are brilliant at stepping up and helping - without in any way being judgemental. Good luck and hoping Debby is discharged tomorrow.
Thank you! Yes home today, one day at a time!
Hi again, we are struggling to understand the carb counting. We have the Carbs and Cals book. But don’t quite understand how many carbs should be consumed at what times. Debby is on 10 units long acting insulin, and 6 units quick, per day. We don’t know how to match up the insulin and carbs. Glucose readings seem high in the morning, lower in the evening. District nurse and diabetes nurse are very supportive, but seem to be saying, trial and error. Any first hand advice would be appreciated. Thank you.
Also, how do I link my partner into this thread? Ta
Bruce Stephens
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@Debby11 should already be being linked in, but it looks like that account hasn't been seen since late 2022. Do they have a different one now?
martindt1606
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Hi unfortunately the initial days and weeks have to be trial and error as the nurse / consultant need to slowly flex your insulin requirements. There are many investigations / calculations that need to be worked through. Initially you will be prescribed what can only be a best guess covering the need for background insulin (long acting), your quick acting requirement - how much to inject (when you eat), and also how much to inject to correct when blood sugars are high. The carbs and cals book is just a tool to assist you calculate the carbs you eat and therefore need to inject fast insulin for. It’s good but mainly fir use when you do not make the meal. For example if you make a sandwich with 2 slices of bread you should calculate the carb content from the packet. For example the packet should have carbs per slice (so an easy calculation) or carbs per 100g so you would need to weigh the bread and calculate eg 75g would be 75% if the carbs on the packet fir 100g. Eventually you will stumble on an carb ratio along the lines of fir every 10 carbs inject 1 unit of fast acting insulin. It’s important to remember it’s only carbs, in my first solo trip (ie without my wife) I had a salad, thought this is a large plate and seriously over injected. Unfortunately it’s trial and error and you have to make mistakes to build knowledge and remember. It wasn’t until 2, years after my TP that the pieces started to fall in to place when I did the DAFNE course. This was my first experience of sitting in a room with T1 diabetics and also first time I understood that things like stress, exercise, flu…. Could also impact blood glucose levels. I would recommend that you don’t stress too much about having high blood glucose levels the team are keeping it under review and I was told initially it does help the flesh to mesh.
In my initial 4 years I was prescribed 2 different long lasting insulin’s and tried both as single injections and as 2 injections a day as well as continually flexing the fast acting. Each change would work for a while and then go haywire. I was fortunate that my consultant was treating me almost as a project and was able to put together a compelling case for a discretionary budget and got me my first pump (hoping DPD have no. 4 to deliver next week).
Stay positive and alert, question everything, and keep detailed log books the team need to know why blood glucose has changed.
Proud to be erratic
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Hello @Dom11 and @Debby11 ( Welcome home!).
Dom, by including @Debby11 in any post you write, it should automatically alert the person who registered as Debby11, with a message indicator for that person - showing within the BLUE symbol at the top right of this screen. Dom, you will have the number 4 within your blue bell, for the 4 replies sent to you since you asked the question about carb counting and how to include Debby in the dialogue. Tap on your bell to see the recent replies sent to you or to see when someone has mentioned you specifically in another thread.
That said, when I type @Deb a drop down box appears and offers me 7 possibilities of members whose names start Deb; by adding a 2nd b, @Debb now offers me 4 possibilities - but there is no Debby. So I wonder if somehow @Debby11 has a setting within Debby's account that has opted out, or not opted in to see or receive such messages? Of the 4 options at top right you (and Debby) will see a purple circle with the letter D - which is how you (or Debby) can access "Your account" settings. [The circle is your avatar in online computing naming for gamers and members of Internet forums, apparently] [One lives and learns!!].
Perhaps a moderator, such as @everydayupsanddowns, can assist - I'm out of my depth in forum tech matters. Or @rebrascora might know.
Both insulin quantities will have been guestimated from Debby's first couple of weeks in hospital. From that period they will have been refined somewhat by medically supervised trial and error (better trial and learning), in conjunction with standard medical presumptions for parameters such as age, sex, weight etc. A start has to be made somewhere.
The long acting (=basal) insulin is chemically engineered to release into one's body over a period of up to 24 hours and to cover insulin needs for any routine background event in one's daily metabolism. The liver has a glucose store which can release glucose into the blood stream for all sorts of metabolic reasons - other than eating food! There are several different longer acting insulins, each of which have different "profiles", ie how they behave in terms of release speeds and how long they endure. Some only last 12-14 hours, others longer and one actually lasts 40 hours.
Which basal insulin is Debby on and what time of day is she taking it?
The quick acting (=bolus) is specifically intended to cover meals, particularly carbohydrates which get converted into glucose by metabolism and arrives into the blood stream and affects the blood glucose levels. As well as covering food intake, bolus insulin is also used to correct BG levels when too high - but it sounds as though that has not been introduced to Debby yet. As with basal insulins there are several different bolus (qick acting) insulins - each with their own different performance criteria, or profiles.
What bolus insulin is Debby using?
Also, do you mean 6 units of quick acting per day or per meal? If per day it's likely to be a very different strategy than 6 per meal.
Either way, in principle Debby is on daily Multiple Insulin Injections (MDI) and at present the hospital discharge process has set Debby up for fixed MDI.
Matching up insulin and carbs is the key to all of this - so you're raising an excellent point. With fixed doses, Debby needs to find the optimum no of carbs for the fixed dose - per meal. Too many carbs and BG will steadily increase. Too few carbs and the insulin will overwhelm and lead to frequent hypos. Most of us adjust into variable insulin doses, to match the carbs being eaten - which also represents a more normal lifestyle. There are a lot of other factors that can affect one's BG, so carb counting and insulin matching is essential, but only part of the full picture.
A starting point can be 10 gms of carbs per 1 unit of insulin - but that very general ratio could be quite different, depending on one's age and weight and Debby should ask the Hospital HPB Department what is her presumed ratio, assuming it is not written in her discharge paperwork. Mine was - I just didn't know what I had to do with it!
Realistically, most people don't eat the same number of carbs at each meal type - I have a big breakfast, small lunch and quite varied dinners, depending on how the day has been. [Perhaps you have breakfast, dinner and tea?]
For now stick with what the hospital has told you to do.
Are the glucose readings coming from finger pricking or have they set set Debby up with a Continuous Glucose Monitor (CGM) such as Libre 2 or Dexcom One? Debby, if you have not got CGM press the hospital hard to make sure you get that ASP. It is prescribed by your GP, but although CGM is within the gift of GPs this still sometimes needs hospital specialist teams to kick-start the prescription process.
Glucose readings will vary across the day and I would expect (hope) the initial hospital derived fixed doses have attempted to take account of Debby's initial post-op BG behaviour. But there will be trial and learning, partly because as Debby heals and gains increasing mobility on a daily basis, then insulin needs will also change.
Unless you are very fortunate District Nurses and GP Surgery Nurses are highly unlikely to be knowledgeable about the finer points of insulin taking. MDI is not within the normal scope of General Practice or Primary District care. Debby, are you still under your HPB Department or have you been referred to a Hospital based Diabetes Specialist Nurse (DSN). This is essential, T3c and total panc'y needs DSN support.
For carb counting just make a start at measuring (usually weighing), calculating and recording each meal. Carbs and cals helps, as does information from the back of a packet (in the small print). From this start 'get a sense' of how many carbs Debby is consuming with each meal. It may seem confusing and tortuous at this stage, but with time it will become pretty routine and normal to assess a plate of food. Armed with the guestimated carb intake, per meal or snack, next week you can try and review carbs against insulin or at least get a DSN to help with the trial and learning of carb/insulin balancing.
I'm going to be busy all day and 200 miles away from tomorrow for 4 days. I'll monitor this thread, but won't be very active or be prompt with any responses. Good luck.
Thanks, same id
Thanks very much, some reassuring info there!
Thanks so much! Lots of info for us to take in, so much to learn!
martindt1606
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We're in thanks!
Hi, Debby has had her Libre monitor a few days now, we find the readings are lower than finger prick readings. We know the monitor isn't a blood reading, is it normal for their to be a difference? She is getting more hypos through the monitor. Thanks.
rebrascora
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Hi. Libre usually reads slightly lower than a finger prick for me but neither are totally accurate and if you tested the same spot of blood with 2 or 3 test strips one after the next you would likely see some variation. The decimal place in the readings gives you a false sense of accuracy.
If she is getting significantly lower readings (or higher) then the first thing to consider is, if she is lying or leaning on her sensor. This happens quite a bit during the night when you roll over in your sleep and the tissue where the filament is underneath the sensor gets compressed and that changes the chemistry causing the sensor to give erroneous low readings. Once the pressure is released and the tissue gradually returns to equilibrium with surrounding tissue the readings from Libre will bounce back up, usually a little higher than where they were before the compression and then settle back down. You can usually spot a compression low on the graph from the sudden dip and then similar rise and then a slight fall and back to a steady line. If Debby tosses and turns a lot in her sleep then this can make the overnight graph look rather turbulent when BG levels may have been stable, so always important to double check any lows before treating them unless she feels obviously hypo. Gradually you seem to learn not to lie on the sensor, perhaps through the same mechanism as learning where the edge of the bed is and not rolling out. Sometimes you find slightly better placement on the arm to reduce the risk of compression lows too. I don't get them any more now, so you must learn to avoid them somehow.
If the Libre is consistently more than 2 mmols different to finger prick when levels are stable ie not changing direction or rising or falling rapidly, then the sensor should be reported to Abbott who will usually ask for 3 readings with comparative finger prick results. They will usually replace the sensor if they feel it is not performing well enough.
(Edited to add the highlighted 2 words in the first line.)
If she is getting significantly lower readings (or higher) then the first thing to consider is, if she is lying or leaning on her sensor. This happens quite a bit during the night when you roll over in your sleep and the tissue where the filament is underneath the sensor gets compressed and that changes the chemistry causing the sensor to give erroneous low readings. Once the pressure is released and the tissue gradually returns to equilibrium with surrounding tissue the readings from Libre will bounce back up, usually a little higher than where they were before the compression and then settle back down. You can usually spot a compression low on the graph from the sudden dip and then similar rise and then a slight fall and back to a steady line. If Debby tosses and turns a lot in her sleep then this can make the overnight graph look rather turbulent when BG levels may have been stable, so always important to double check any lows before treating them unless she feels obviously hypo. Gradually you seem to learn not to lie on the sensor, perhaps through the same mechanism as learning where the edge of the bed is and not rolling out. Sometimes you find slightly better placement on the arm to reduce the risk of compression lows too. I don't get them any more now, so you must learn to avoid them somehow.
If the Libre is consistently more than 2 mmols different to finger prick when levels are stable ie not changing direction or rising or falling rapidly, then the sensor should be reported to Abbott who will usually ask for 3 readings with comparative finger prick results. They will usually replace the sensor if they feel it is not performing well enough.
(Edited to add the highlighted 2 words in the first line.)
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