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British Liver Trust
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Second consultant meeting this week - for cirrhosis....

Morning all,

So despite being two months after the target date, my second post-hospital consultation is on Thursday and I’m getting into a flap (in a fear of stage fright way) about having everything I need on my list - most of us know how precious these appointments are and I really, really don’t want to be kicking myself after! I was admitted in March, in hospital for 9 days, and diagnosed with liver disease.

I know I’ve had ages and I don’t for a second think anyone has a checklist and of course we are all different, at different stages with different things (and none of us - that I know of - are doctors!), I just wondered if anyone had time to have a glance at what I’m asking and whether I’ve missed anything glaringly obvious. Understand if not.

Here goes....

1. Bloods - any changes, positive or negative and what any either way might be attributed to

2. Muscle mass - seems to go a bit up and down despite eating well

3. Do I just keep doing what I’m doing (taking thiamine and vitamin B and when I need it, the spiro diuretic) or is there anything else I could be doing?

4. Pain relief...a BIG one. I wake up every day in agony with extremely painful joints especially fingers and shoulders and knees, which continues throughout the day and gets worse again at night. Am up during the night, also every night using a tens machine, deep heat, hot water on joints when extreme - is this a cross I have to bear or is there less harmful but more effective pain relief than two lots of paracetamol a day?

5. Is it normal for light nose/gum bleeds to come and go?

I can’t think of anything else and I’m not looking for answers to the above, just whether there’s a key question or two that has escaped me - entirely possible! There’s so many of you on here who have been through the same thing with far better knowledge and experience than me that I’d be really grateful for any pointers however obvious they may seem. I’m getting quite nervous 😟

He’s actually quite nice my consultant - yet efficient bordering on impatient and I always feel like the Countdown timer is going (I’ve seen him a few times when I was in hospital too!).

Will write down, take a pad and a friend if my partner can’t make it...

Thanks so much and hope the week is as good as it can be for you all.

Beth 😎😬😎

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Hi Beth

With regards to No.3 I would ask about lactulose if you’re not already taking it.

Hope your appointment goes well.

All the best

Will

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Thanks Will, I have a box of it here but bought it after doing my own research (every time I cried, I could smell ammonia and didn’t know why...) - I tried two sachets in one day and was bent double with abdo pains before the inevitable 😱 but thanks I had definitely forgotten this, so on the list it goes.

Appreciate your reply,

Beth 😎

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Lactulose is generally a syrup type liquid which comes in bottles ......... maybe the sachet version acts a bit different? Lactulose has special properties that help it fix and remove toxins from the body via bowel motions, it can be a bit potent as regards frequency of bowel movement but actually in cirrhosis going to the loo 3-4 times a day is desired to get rid of excess toxins.

My hubby was put on lactulose as soon as he was diagnosed with cirrhosis to try and counteract toxin build up.

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Hi, yeah it’s the same - I just picked it up in France (it’s in individual foil sachets - don’t think they’ve had the packaging memo!) but it’s definitely a gloopy syrup mix...doesn’t taste toooooo bad but as I was still going regularly, I thought I would do without adding tummy pains to my list - but as you’ve said about the toxins, it would seem like a good idea to stick with it. Definitely worth mentioning Thurs - thanks for replying 😎

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Hi Beth,

You have come up with some great questions to ask the consultant. Do you see a hopspital registered dietitian to get some specific guidance? You could ask the consultant if they may be able to refer you?

If you need to have a chat on the helpline we are open today until 14.45.

Best wishes

Trust1

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Thanks. I have seen a dietitian twice, this was early on when I was “wasting away” and I was advised to eat all the time plus carbs before bed etc but I’ve gained and maintained 10kgs since my last appointment so am back in normal BMI range. I’m a bit baffled still about the muscle mass though so I’ll ask about that!

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You need protein as well as carbs.

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That’s probably it actually - I wasn’t so good at eating protein before diagnosis 😬

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Beth,

You really do seem to have everything covered - could be useful for those who are also a bit unsure about what to ask.

My only suggestion is this;

At the end of the consultation, repeat back to the consultant what you think you have heard, "so what you are saying is - - - "

That way, s/he will have the opportunity to correct any misunderstandings.

And the final thing is, if it hasn't been spelt out, say "what happens next ?" This way you will leave with a clear idea of what has been said and what will happen next.

Hope it all goes well.

Jim

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Hi Jim,

That’s very good advice, I’ll definitely recap and ask what’s next. I know after last time I was so baffled by it all that I had no questions and I think my consultant was baffled that I didn’t have anything to ask him (was firmly in denial then) - I’ll definitely be better prepared. It’s a shame there’s no access in between really - I’ve tried asking my GP lots of things but am always told “you really need to ask your consultant” which is all well and good if you’re next appointment is imminent!

Thanks again,

Beth

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Great advice from Jim.

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Make sure you are going to be monitored properly going forward - minimum 6 monthly scanning and blood tests including AFP (Alpha-fetoprotein).

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Beth,

Your consultant will send a letter to your GP after the consultation and you will receive a copy, so you will be clear on where things stand. Your bleeding sounds manageable but go to the dentist. Mine was terrible, bed looked like the St Valentine’s Day massacre. On point three you might want to ask if you need refaxamine, this tackles HE.

Good luck.

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Thank you, I really should see a dentist anyway (one of those things I seem to keep putting off!) so this will motivate me, it doesn’t sound as bad as yours - that sounds awful 😳

I’ll mention raflaxamine on Thursday - and look it up myself!

Beth

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Beth,

Like you I put the dentist off, which caused damage and not treatable until transplanted! Bleeding....saw a GP, no blood tests but a nice tube of cream. The registrar gastroenterologist diagnosed cirrhosis within about two minutes of seeing me. Good luck with everything, getting to the consultant is the most crucial thing at your stage, hopefully you will make great progress.

Mark

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Thank you, I hope so too. I’m definitely not feeling as optimistic as before but in some ways it’s a good thing as I’m facing it in a more realistic way. The first out patients appointment my head was firmly in the clouds! I think with pain, bleeding, etc it was impossible to stay there!

Hopefully I’ll still come out tomorrow afternoon with some positives!

Beth 😎

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I think if you haven’t already been tested ask them to do thyroid test as well as MRI for bones as a lot of the time once we have autoimmune problems others follow like oesteoporosis, arthritis etc. Also maybe B12 and Vit D tests. I know easier said than done but try and stay calm as it doesn’t help your body. Always try and get a second opinion and I think if you do forget to ask something then just make another appointment the thing is we always have more questions, new thoughts ... it’s just how we all are when we have an illness. Wish you luck and hope the pain gets better x

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Thanks so much. Interestingly enough someone who didn’t know I had liver problems said yesterday to have my thyroid checked - I was explaining about how getting dressed hurts at the moment - and I must say it hadnt occurred to me.

And you’re right about second opinions and additional appointments - I had it very firmly in my head that this was the “half yearly one chance” to get everything that had been building up out - this belief was not helped by the GP’s pharmacist not taking my calls about pain relief for three weeks...and actually we still haven’t got to the bottom of that!

Fingers firmly crossed though and thanks again,

Beth 😎

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Hi,

Have you asked about routine regular follow ups?

Mine include:

6 monthly Abdominal ultrasound

6 Monthly Gastroscopy

3 Monthly Bloods (including AFP testate - to check for liver cancer)

6 monthly appointments with

gastro/hepatologist

3 monthly with dietician (soon to go to 6 monthly, or when consultant thinks it's necessary)

I also ask for print outs of blood test results.

I find it helps and encourages me if I can refer to them, and hopefully, see the results improving.

Have you had a DEXRA bone density scan yet?

Personally I haven't dared to ask about outlook or prognosis yet. I'm still above ground, and that will do for me!

Pain relief - I was, and still am in constant pain, which I just put down to cirrhosis and osteoporosis and tend to just soldier on and hope it goes.

But I would definitely ask about pain relief though. I think a lot of it in our case is nerve related.

Hope that helps

Gary

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Massively helpful, Gary - thank you! I’ve not had a bone scan yet but I’m inclined to ask for one. The pain is so debilitating - yet like you, I’ve been soldiering on bearing the cross as it were. However I was starting to get really down about it, and thought surely there’s a better solution than crawling from one dose of paracetamol to the next when a) I’m only supposed to take two lots a day and b) they don’t really hit the sides anyway! I’ve done a lot of thinking around asking myself why I seem to be just accepting it - which is probably guilt related and thinking I somehow brought it on myself but that’s another story!

I’ll add your very useful points to my ever increasing list, I’m *almost* starting to feel sorry for the Dr...

Thanks again and if anything useful comes up that may help others I’ll report back after.

Beth

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Yep we have to be really careful with pain relief. I was in so much pain, particularly in my shoulders, I've never known anything like it! Anyway, my GP said it sounded like nerve pain (probably right) and prescribed Amytriptiline, which I knew must be effective, as it was one of the drugs prescribed for my wife when she got metastatic cancer in her spine.

However when I looked it up it was contraindicated for people with liver disease - I chose not to risk it and just to put up with the pain.

Hope all goes well at your appointment

Gary

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Hi Beth,

If you have your questions in a notebook, make sure to write the answers in it. I try to take a notebook with me for my husband's liver appts. and also mine - so easy to forget things. Plus I have no problem nagging my husband's doctor to make sure I get it right [less with my doctors LOL].

My husband is on several different meds including lactulose, he also has high blood pressure that is being treated.

A lot of things are dependent on what is going on with your body and how everything is working, as you said. I do remember that a big thing for hubby's doctor is him getting an infection - so you might want to ask about that [hubby was in liver failure in 2015 so you may be "healthier".

My hubby didn't have a lot of joint pain, so it may be good to ask your doctor about that.

I would just keep my notebook near me and write down every question I have even if I think it might not involve the liver because you just never know what might be important or spark an idea in your doctor.

Best wishes to you,

Mary

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Hi Mary

It’s funny that you say you’ve no problem nagging your husband’s doctors but less so your own. When my dad was in ITU before he died I was of the no stone unturned demeanour - yet meek in comparison with my own...like I said in a previous post my consultant is far from an ogre but I always feel like I’ve been called to detention. I need to get over that!

This morning I was first in line to give blood and took the spare time to buy a notebook which I’m about to start filling with all these amazing suggestions. Is it just me or does a brand new notebook make you feel slightly more organised?! Fingers crossed and hopefully I’ll be able to share some useful news later on.

Thanks again,

Beth

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Hi Beth,

It isn't just you - I, also, feel more organized with a new notebook - more capable too LOL.

Best wishes,

Mary

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Thank you for doing this I’ve got my second consult on the 6th so have taken some tips to ask as well

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