"There's a myth that anyone who has a liver problem has brought it on themselves" This quote is from a Crohn's disease patient living with a blocked portal vein hoping for a liver transplant (Independent 31st Oct 2010)

Tuesday, 3 December 2013

The Good, the Sad and the Weird

The sad:  My liver specialist Dr Al is leaving.  He has family in Syria and needs to go back.  For a year, maybe longer.  Nobody knows yet who will replace him.  My next appointment is the end of January, so we shall see.  I was upset to hear that, I feel 'safe' in his care.  But family comes first before patients.

The weird:  When I was in hospital in Jan/Feb Dr Al ran a whole load of extra tests, including all the letters of the hepatitis alphabet.  After 10 months one weird result came back positive: - Hepatitis E.  It can be picked up from food or water due to poor sanitation.  Dr Al says he is seeing an increase in cases in the UK.  Where did it come from?  Baffled again, unless the protective gloves I wear at work don't protect.  It shouldn't become chronic and as my liver function returned to normal after a few weeks he assumes I am clear but has taken the test again to be sure.  Hope I don't wait another 10 months to find out!

The good:  If the liver function flare in Jan/Feb was caused by the Hep E infection instead of the autoimmune, then Dr Al says I can come off the autoimmune meds .... in a year ... after another biopsy.... 


  1. Hi Fiona,
    I'm sorry to hear about you loosing your doctor. Hopefully you'll end up with someone you like. I'm excited to hear about your possible silver lining with your hepatitis results. So ??? why did it take so long to determine that your flare up may have been caused by a Hep E? Are there any risks or side affects to you being on the autoimmune meds for such a long time? I'm hoping that the last 10 months has just been a hiccup with your status.
    Steve just hit his three year mark since they removed his tumor. We have been doing the rounds of colonoscopy, CT scans, etc. The colonoscopy came out clean and he does not have to do his next one until Dec. 2015. YEAH!!! If that one is clear he will then be on a five year rotation. We will hear about the CT results next Monday when we meet with the oncologist. All the extra appointments have made life a bit crazy and hectic. I'll be glad when they are all over. I'm not sure that December with all its holiday extras is the best month to try and fit in so many doctors appointments and tests. It has made for a really crazy month. My daughter has also been performing in the Nutcracker with a local dance academy. Her last performance is tonight.
    I hope you are enjoying this special month of the year.
    Merry Christmas and all the best in the New Year.


  2. Hi Carla. Please pass on my good wishes to Steve and glad to hear he is still clear. Fantastic news. I don't know why it took so long for the Hep E results to arrive, they did another one in clinic this month, so I will be chasing the results of that you can be sure. I guess there are always risks and side effects to being on any long term meds, but often the alternative of not taking any is worse. Dr Al said he would put in my notes about coming off the meds in a year if I stay well, but of course a new doctor may have other ideas, we shall just have to wait and see. All good wishes for the festive season.