Appointment with liver specialist what to ask so many questions

Hi all got my first appt since being diagnosed June 2011.

At my first appt was just dumbstruck as I was told it was PBC and given a leaflet to read end of appoiintment .

Want to make the most of the next appt in 23 Feb but don't know where to start as its been 9months since first.

So any tips out there so I don't waste this one ?

Thanks in advance Xx

4 Replies

oldestnewest
  • Hello Cowren. I was diagnosed with PBC Dec 2010 after going for a first hospital appointment Oct '10 and having the blood test for AMA. My GP contacted me to go in to see him Dec '10 as he wanted to give me Urso.

    I received my first appt following diagnose for Feb 2011 and had only been on Urso for 2mths by that time.

    I have to say I was not keen on the hepatologist from the first visit to see him as I had been having blood tests at intervals at my GPs surgery before diagnose and failed to find out what majority of the blood tests were for. I thought the final blood test I had at the GPs in Aug 2010 was for AMA but was never informed at the time it was for copper. The GP then said he was referring me to see a consultant. I found with the consultant at the hospital on my pre-PBC disagnose visit rather irritating as I was asking him questions and he seemed evasive. I mentioned was it possible I had PBC as I had beenr eading up on liver and problems since the 2nd abnormal LFT and GGT results at the GP earlier that yr. The pre-PBC diagnose visit was to me, a bit of a waste of time as I came home with the blood test for AMA which I foolishy thought I had had from the GP. (I did have an ultrasound in July 2010 which came back with clear bile ducts (no blockages) and a normal-looking liver.)

    My husband attended the visits with me and he too felt irritated. When we went back to the GP for the first prescription for Urso and the diagnose, my husband insisted we have print-outs of the results for the blood tests which we did get as if someone in the medical profession says you 'are low' or 'high' without a reading that is supposed to be normal you'd not have a real idea yourself.

    I got an appt for the Feb 2011, the first after diagnose and for me, given I had done my own bit of research on PBC and read PBC literature as well as British Liver Trust, I found the consultant didn't really fill me in more at the time.

    I haggled for an appt later than the 3mths he wanted me to go back simply because for me, you can be weighed, blood pressure and bloods taken at the GP surgery (which I had May 2010).

    I had my 2nd appt Oct 2011 and have to say for me, the experience of the Out-patients dept at my local hospital again was so off-putting (nurses calling you other side of Waiting Room and then disappearing behind a door plus I found the consultant no better (a voice called me from way down a corridor that was his!)) I had decided by then I wasn't going back unless I felt I needed to.

    I expressed the point from the previous 3 visits and at present I am just under the GP care.

    I'd express to you to ask for any blood results taken at the hospital to be sent to you direct rather than have to chase them up at GP surgery which take longer as I found.

    For me once I got the worry of visiting the hospital out of my mind plus knowing at present there is nothing really to be done regards having PBC the hospital doctors can help me with, I have found since Oct 2011 I have felt far better.

    Good Luck.

  • I make a list when I am going to see anyone. That way I can ask all the questions I want to ask. Also its good to take someone with you so that you can ask them what they said when you have forgotton.

  • Good advice both I will take someone and do a list I always go blank and forget key information lol x

  • Don't let them hurry you and ask if there is anyone you can contact if there is another question once you get home. There may be a liver nurse you can talk to.

You may also like...