not sure about going to see my consultant

[Etymolog]

hi

I’m up for my consultation review in July following the usual ultrasound and blood checks - but I’m not sure weather to go or not .i know that the ultrasound hasn’t changed at all and neither has my bloods but I don’t want to feel terrible again like the last time i went to see him ? I feel awful for about a month whilst I try to get myself back into how I was before the appointment. He always tells me I can decompensate in a heartbeat and then I’d have two years to live and again that I will only ever look ve for 15 years whilst compensated I don’t know if it’s worth going

[Hidden]

Change your consultant. No one should be speaking to you like that and making you feel this way.

[AyrshireK]

Your doctor is plain wrong with his life expectancy predictions and NO ONE can accurately give any genuine time frame. My hubbies consultant always told us he has patients who have had cirrhosis for 20+ years who are no where near dealths door nor transplant needy. There are folks in an AIH support group who have had it for 30 odd years and still going strong.

If you are compensated and the attack on your liver has ceased then you are doing all you can to stop it decompensating or getting worse.

You've got the PBC aspect to keep an eye on and need to keep yourself as well as possible to stop other things (like infections) from destabilizing you. But it's very possible to live a long life even with cirrhosis.

I wouldn't miss the appointment just in case further down the line you need more care (transplant potentially) because compliance with all medical appointments is one thing they look at.

Go in but in the knowledge that any talk of life expectancy is pure speculation, he probably used it as a bit of a red flag/warning of the 'what if' you didn't stop drinking. You have so that has been heeded. Any mention of life expectancy now is just speculation and frankly he's talking sh*te - so go in with that knowledge and don't let it get under your skin.

Have you got someone who can accompany you? Maybe two pairs of ears are better than one and you'd have moral support and a witness if you felt the doctor was treating you unprofessionally. Some medics have no idea home much they screw with your mind by what they may say.

(We had it first time on transplant list with some doctors saying see you next month ... if you are not transplanted by then and others saying you shouldn't even be on the list!)

If things are as bad this time then see about changing doctors.

Best wishes for it.

Katie

[Etymolog]

Thanks so much I really needed to hear this. Think I may say I don’t really want to know about life expectancy at this appointment. Yes you’re right I need to be 100 % compliant with everything to give myself the best possible chance. I think I’d like to just live my life and not worry about stuff that may or may not happen. I am really well at the moment training for a half marathon so I can’t be too bad for now.

I do have a trusted friend I will take so I don’t feel bullied again.

Sending love

[JulieWhite]

Hi. I know appointments are not easy and are scary. During Covid I had no bloods taken and as I suffered an autoimmune disease ended up needing an emergency liver transplant. Consultants were amazing and when they got to know me they recognized me as someone who worries a lot and was scared. The moral of the story is talk to the consultant. Tell him you are afraid but down the line you may need them and they will help you. So take a big breath be brave like me and go to your appointment. Keep fighting on you will make it!

[BritishLiverTrust11 Moderator]

Hello

We are sorry you have had this experience and feel this way, however would encourage you to not miss your appointment. In addition to the suggestions from members of the forum, here is a link to some information on our website about preparing for appointments, including questions to ask your doctor, which you may find helpful.

britishlivertrust.org.uk/in...

Best wishes,

British Liver Trust

[Kingbilly3]

hi, I was diagnosed with decompensated march 23, and I lived on google! My specialist said I would be dead before a transplant came up so won’t bother putting me on list which she said was a 4 year list, also told to quit drink which I have not drank over 15 month now, she said if I never went to compensated at my first 6 month scan I never will, I had my next scan other week and last week went for results, I got told same as you no better no worse, so I asked am I still decompensated she said no and have not been since my yellow skin went and my ascites which went by June 22, so all this time a been thinking I only got 2 year to live and it’s not!! Honest keep off google if that’s where you read things, but had my specilist told me sooner it compensated I would would not have been expecting to be dead soon! As long as I am off the drink I know I will be fine, yes maybe not for as long as I would like but I truly think I still have many years left in but only as long as I keep doing what am doing, I was making my self bad with worry, but to be fair I was not really told much when I took ill so I googled everything and as for decompensated your only that stage while you have the very last symptoms ie : yellow , asites , edema, I had a bleed January but even that’s not the end of the world because I got the camera regularly and got the bands, next one due august, I now feel I can plan ahead more and start enjoy life instead of waiting to die, I wish you the best of luck please feel free to message me if your worried ❤️