Hospital appointment at the wrong time

[AJLang]

As you know I have gastroparesis which makes the diabetes conto completely erratic with at least two or three tests during the night and c. 7 or8 injections most days. Carb counting is pointless e.g if I was to inject the "rights" carbs for my dinner I would have a major hypo because the food can take anything from two hours to fourteen hours to digest! It therefore takes an awful Lott of self discipline. Anyhow I've had a few weeks where the average
Bg has been 11.5😱 I've just managed to get it under control again and thought that was good because my Next HBA1C isn't until May.............therefore completely shocked when I received a hospital letter today to say that I need to do my blood tests in three weeks. Which will mean that my HBA1C will be much too high so the GP and nurse will not be happy......but they know absolutely nothing about the effects of gastroparesis

 

[Northerner]

Amanda, you do an amazing job and work very hard to keep your levels the best you possibly can. I've found that some HCPs don't even understand how someone with good control ends up having hypos or double figures occasionally, so if they don't 'get' that then it must be a real struggle for them to appreciate how hard it is to deal with gastroparesis. If they moan, then feel a little pity for their ignorance, but be certain of yourself, that you are doing your very best 🙂

 

[AJLang]

Thank you Alan. 🙂 I had stopped using the CGM for a while because it costs so much money and needs me to pay a lot of attention to it......but I'm also going to start using that again today. Think the weeks of high BGs were just because I had run out of energy for getting up in the night and doing injections before the BGs got too high. Last week I went to bed with a BG of 8 and by 3am it was 23.5😱

 

[Twitchy]

Well said Northerner!!

Hold your head up high - i think you are doing wonderfully against everything that is playing havoc with your control! I would not be shy if necessary in gently but firmly 're-educating' any so called health care professional who is judgemental & ignorant - you'llbe doing them & their other patients a favour. 😉

All the best! (((and a big grateful hug for your recent encouragement - thanks!!))) xx

 

[Twitchy]

Meant to ask too - would a pump help? I'm afraid i dont know anything much about your condition but it might allow you to use extended boluses etc & with a cgm might be a real help? Xx

 

[AJLang]

Hi twitchy thank you very much🙂 How is your eye now? My gastroparesis specialist at another hospital has suggested a pump..........but she has said that it is my main consultant who would have to make the decision. I haven't yet seen him to be able to discuss this, my appointment is in March. However neither consultant has much experience of someone with gastroparesis using the pump. It appears that there is a specialist in Liverpool who treats loads of patients with gastroparesis with a pump/CGM but I haven't been able to find out his name.

 

[Twitchy]

I know it's not the same but i have dawn phenomenon, which meant during my pregnancies whilst on mdi, i was up in the night checking and bolusing at 3am so i really sympathyse!! Dunno if it was the prg hormones playing havoc but for the same bg & same lispro correction on different days i could get wildy different results so i wasnt expecting the pump to be that wonderfully more effective, but it's been brilliant! Def worth giving a try even if the docs are wary as worst case scenario you know you can go back to mdi - best case, catch up on that sleep debt!! 🙂. Fingers crossed the docs pull their thumbs out, get talking & get it sorted for you soon - maybe you could use any increasein hba1c as evidence in your favour? It's good that they are considering it - how do you feel about it? Xx

 

[AJLang]

Hi Twitchy

Thanks for that information - although the reasons are different it sounds like your problems were in many ways similar to mine. For a long time I wasn't sure about the pump but now that I've got maculopathy in one eye I am paranoid about getting it in the other eye - because if I did I would never be able to read anything. So, for that reason, if the pump helped me to get better control then I would definitely want it - I think I have now got over all of my hangups about having wires/pump attached to me - especially as I now often have the CGM attached. I will definitely be asking them about a pump at my March hospital appointment xx The only thing that might get in the way is that my consultant wasn't at all worried about my BGs frequently going from 2 to 23 because my HBA1C was 7.5.........so if the HBA1C is higher at the next appointment this might be an advantage

 

[Twitchy]

It's a bit worrying that your doc isnt too worried about such swings- i understood that occasionally they aren't too bad but im sure i remember reading somewhere that they are not good long term for the eye (never mind how lousy we feel when that happens!!) . For what it's worth, i initially dithered & delayed about getting a pump for the same reasons as you, and i won't deny that it did feel a bit odd for the first few months...but the benefits in quality of life are such that my first question coming round from the eye op was 'where's my pump?!' - i was paranoid they might have tried removing it lol! 😱 they'd have to knock me out to get it off me these days hehe! The eye's getting there thanks- keeping it closed to do this on my phone screen, still bit tender for reading, tv etc but clearing nicely...looks like they've done a neat job! 🙂

 

[AJLang]

That's fantastic news about the eye, I'm really, really pleased. My eye consultant said that having high sugars early in the morning was a major problem.....I'm increasingly certain that it was the effects of the gastroparesis on my night blood sugars that caused on the retinal vein occlusion and then the maculopathy. I think that these problems were happening over five years ago - when I told the hospital that I was getting really high morning BGs - but all they did was change the insulin.....the gastroparesis diagnosis wasn't until four years later.....

 

[trophywench]

Right then, Amanda.

You might be aware of this lady - Samantha Cleal

http://gastroparesis.org.uk/

I just revisited her site, which isn't up to date - but she IS on facebook and might well know the answer to who the chap is at Liverpool.

A name is mentioned on her site, but if you Google him he's more on the gastric side of things than the Diabetes, if you see what I mean. And he seems to have gone private, working at the Spire Hospital on the Wirral. You may be able to contact him for his ex-colleagues name?

However you could ALSO have a word with Medtronic. They not only make insulin pumps of which I am sure you are aware! but also make the Enterra impants for the Gastroparesis - they must SURELY know who uses their products!

Last and by no means least - for God's sake Amanda - contact INPUT to find a pump-friendly Diabetes consultant. I'm no blooming expert on D or G - but if I can see how a pump might help you - and I said that as soon as I knew you had it - your current D consultant must be stupid if he can't.

{{{Hugs}}}

 

[AJLang]

Wow you've got me so much information, thank you🙂 I will follow it up over the next few days. thank you so much for spending that time looking at the information for me. I did look at the Medtronics site earlier and they have a diagram about how the pump works with gastroparesis.......it was really helpful. I will try to speak to someone at Medtronic next week.

 

[margie]

Hi Amanda

I have PM'd you with some information that may help you trace the consultant you are after.

If your GP/nurse complain about the DSN - suggest that they call your consultant who is amazed at how well you control things.