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

[Ilovedavid]

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