stuck in a perpetual state of uncerta... - British Liver Trust

British Liver Trust

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stuck in a perpetual state of uncertainty

Rogerro profile image
6 Replies

Hi all, not really a question but I just wondered if anyone else is in a similar paddlesds canoe, I was yDiagnosed with Nash for about 3years, also diabetic and acute back pain.

Had the assessment last year, was Co sidered in need of a transplant (UKMELD score over 50) but due to high BMI not suitable for the listing at the moment. Fully decompensated. (basically a brick for a liver!) diabetes had caused problems so put on a Basal Bolus insulin regime. Weight shoots up because of insulin, start walking a new dog three times a day, repaired bycycle and started cycling regularly. Bingo, weight starts to come down. Warmer weather arrives, Ascites gets worse, odema in the legs shoots up, weight remains the same. Try to reduce quantities in diet and up the exercise, Ascites gets worse odema make my feet look like hobbit, its like walking in wellies filled with water!

End result, weight stays the same. So no chance of getting on the list to resolve the very problems that make it necessary!!!

on top of that the removal of codeine and directly put on Nefopam caused a full on Cold Turkey withdrawal that lasted all over Christmas until the new year. 😔.

Also Hospital liver department went completely " Radio silent". Local hospital arranged an ultrasound, no results but nurse doing the scan was quite surprised that I hadn't had a drain done. Showed a 7.5cm block of black nothingness above my liver. Oh, and the Doctor also told me to stop driving which has pretty much ended my own company as I mostly drive to hospitals all over the UK to fix machines in labs.

Sorry its so long, just needed to say it all without worrying my wife.

just stuck in a bottomless pit of fed-up Ness.

6 Replies
BritishLiverTrust3 profile image

Dear Rogerro,

If you [are in the UK and] would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 10am to 3pm on 0800 652 7330 (excluding bank holidays)

Best wishes

British Liver Trust

Readlots profile image

Hi Roger, I’m sorry you’re having such a hard time - this heat can’t be helping. I have two kids with diabetes and know how hard it can be to manage. It sounds as if you were doing really well with the excercise too.

Can your GP do a referral to an oedema service to help with the legs? Are you having the Ascites drained as the nurse suggested? Some of your weight might be fluid. Do you have a liver nurse at the hospital that you can talk to about the Ascites? I think you’d feel more comfortable if you had a drain and it might give you an indication of your actual weight.

Take care in this heat - it can really affect how much insulin you need - you might need less so keep an eye on your blood sugar levels.

If I was your wife I’d want you to talk to me… You’re in this together and, if she’s anything like me, she’ll be worried about you whether you talk to her or not.

All the best

Rogerro profile image
Rogerro in reply to Readlots

Hi Readlots, thank you for taking the time to reply, I think I was just feeling really low yesterday, I do talk to my wife about it but she has such a busy life and sometimes I just don't want to add further to the burden.

The heat does make a difference to my diabetes, and takes some careful watching, also the oedema in my legs has been a problem for a long time, I did all the elevated legs, elevated bottom of the bed and compression socks (I particularly didn't like those)and tablets but to no avail. Despite going through the assessment process, we were never given a number to ring to speak to a liver nurse if we had queries or issues.

But it is all just me venting, things fly around in circles inside your brain, especially if HE is in the mix, which it is.

I have never been asked if I wanted a drain, and you are right, it would be the only way to find out what my actual weight is.

Anyway, I appreciate you taking the time.

I must try to be a bit less self indulgent in my fedupness. I am sure everyone is doing their best. Take care.

Readlots profile image
Readlots in reply to Rogerro

Sometimes you just need to have an outlet , I totally get that, it’s not self indulgent.

It’s really bad that you weren’t given a contact number. Having been through a transplant assessment I’d expect you to have at least 2 numbers: the transplant support nurse and your ordinary liver nurse linked to your hospital clinic. You could try ringing your local hospital PALS team to get the liver nurse number. Or my ‘failing all else’ approach is to ring my consultants secretary to ask for advice, she usually talks to my consultant and gets back to me. Her number is on the hospital letters.

Your GP might be able to organise Ascites drainage. If you can’t get a GP appointment, ask to see a nurse. They usually go and get a doctor if they aren’t sure what to do. You do need to be seen in person.

For ascites drainage its better to get a planned appointment to go in for a days treatment. My Mum did that and had a really good experience. She also had to go in as an emergency on a ward and that was not good at all.

See who you can get hold of first. My bets on the consultants secretary…

Rogerro profile image
Rogerro in reply to Readlots

Thanks for that, funniest thing happened yesterday, after 8 months of nothing I got a letter through the post from QE for an appointment next month.

World is full of strange coincidences.

Thanks for your ideas but I guess I can get my questions all answered next month.

Take care.

bleeny profile image
bleeny in reply to Rogerro

Let us know how you get on. Good luck at the appointment - I hope you get some answers.

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