Gastro specialist what to expect

[charleeeeeeeeeeeee]

Hi All,

I've finally got my referral appointment to see a specialist on Tuesday the 9th. I believe I'm booked in for a fibroscan, no sure what else. All my LFTs are normal now, but I'd love to know how far down this awful cirrhosis road I am.

Anyone know what I can be expecting them to do on Tuesday?? Thank you!

[Hidden]

Hi,

You may find our publication 'Living with liver disease' useful to read, it details, accessing the right care and getting the most out of your doctor’s appointments etc, here is the link;

britishlivertrust.org.uk/wp...

Best of luck,

BLT Admin

[charleeeeeeeeeeeee in reply to Hidden]

Brilliant! Thank you for that!

Charlotte

[Millie09 in reply to charleeeeeeeeeeeee]

Hi charleee .good news ! at last i had a fibroscan last February was my first ever appt with hepatologist. From then on it waa lots of tests; but we all differ so just see what the next step is .. never be afraid to ask your consultant questions . Im.sure they dread seeing my name on the apointments list as i never shut up lol xx good luck

[Faithfull in reply to Millie09]

I just read your reply u sure I'm not a relative,

I don't shut up ask so much that the dr confused in end but you never get a real answer as I think I don't give them a chance to answer and the looks when I come out Drs . It's how long was she look and by the time I leave I know the whole surgery there illness and how fast there mobility scooter goes .

Cabs .helplines .any call I make I'm sure it's omg who's got the short straw !

[Millie09 in reply to Faithfull]

Haha !!! Hey faithful.. how are you ..

You are so right ! I am exactly the same way in this day and age where our nhs service is struggling we still need to put our own health first. I dont mean letting others suffer .i mean standing up and asking questions we want answers to !

Good for you i say 😊

[ETW1]

Hi Charlee, I am newly diagnosed in October. Diagnosis was through blood tests, I have only since hepatologist once for confirmation. I am AMA M2 positive and having my first fibroscanin 10 days. Other than what I have told you I know very little about pbc.

[charleeeeeeeeeeeee]

This that the BLT Admin sent was worth reading

healthunlocked.com/api/redi...

What is AMA M2 positive?

Charlotte

[charleeeeeeeeeeeee]

Hey Millie, and everyone really! So I'm off to see the specialist tomorrow, I just called them and this is just general questions and they then have to refer me on for a fibroscan which will be about another 6 weeks.

So, other than asking them about what on earth is causing my low potassium and about taking terbfenidine or what to put on my horrible toes what else should I be asking?

Thanks!

[AyrshireK in reply to charleeeeeeeeeeeee]

Take a notebook, write down any and all questions you have. Obviously you want this cirrhosis question answered i.e. do you have it or not? Also, write down a brief history with any symptoms you are having at the present time.

Hubbies first appointment with liver specialist after a year of being treated locally was a general chat about health history, symptoms, medication and we worked through our dossier of questions thereafter doctor arranged the follow ups she felt appropriate. Each and every appointment we take notebook in which we detail - current medications including dosages, symptoms and/or changes since last appointment plus any questions arising.

Hope you get some answers.

All the best,

Katie

[charleeeeeeeeeeeee]

Thank you Katie, I have a little A5 notebook and have filled a page with questions already!

My mum is coming with me, but not actually to see the specialist.

Im going to ask about;

confirmation of cirrhosis,

fibroscan,

my low potassium and blood pressure,

always feeling hungry (especially on a morning),

Always cold, especially my fingers.

What the future holds,

alternitive medications and treatments,

Transplants.

Insurance, travelling.....

Please let me know if anyone thinks of anything more.

I'll let you all know ho it goes!

Charlotte xx

[AyrshireK in reply to charleeeeeeeeeeeee]

I would take your mum in. I accompany hubby into every appointment - due to mild HE issues and difficulty concentrating, expressing himself & understanding he would have struggled with his condition otherwise. I also attended every day of his transplant assessment (other than the actual tests). Two pairs of ears are better than one and it's good to talk things over afterwards as to what you both took from the conversation rather than just your own take on it - there can be a lot of complicated MED SPEAK and it is good to have that additional support.

Re. the always feeling hungry bit ask to see a dietician - we got guidance on this for hubby (i'll send you a PM) which might explain what goes on there.

Be prepared for a 'how long is a piece of string?' type answer to you 'What the future holds?' or a 'We don't have a crystal ball!' You want to make sure they are going to appropriately monitor from now on - regular scans, bloods etc.

Best wishes for it.

Sending that PM now.

Katie

[Hidden in reply to AyrshireK]

I always take my husband in with me and sometimes my sons as well!! I have a note book full of questions.

I've got an mrcp on the 28th Jan and then I see consultant on the 1st February. He said that he will decide then what to do with me!! Also, I want to know if my liver has progressed from Nash with fibrosis to cirrhosis as I'm feeling far worse than I did when I saw him beginning of December.

Please take care . Hope you get some answers soon,it's horrible being in limbo land!! Xx