"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, 23 April 2013

Transplant talk

Had my 3-monthly clinic appointment with Dr Al, my hepatologist, yesterday.

It was a joint clinic with a consultant hepatologist from the Queen Elizabeth Hospital Birmingham, one of the UK's transplant centres.
Dr El had obviously read up my case notes and was pretty sure I contracted the Hep B in Kenya, based on the genotype and the dates.  How I contracted it still isn't clear.
He backed up Dr Al's treatment plan for the overlap Hep B and autoimmune.
And then dropped a bombshell.
If the cancer comes back he would take me on at Queens for a liver transplant.  He thinks I was 'lucky' that the tumour 2 1/2 years ago was small and on the outer edge of a segment.  I may not be so 'lucky' next time.  And like O'Blimey my surgeon, he is pretty sure there will be a next time.  He said that once you get cell changes in one part of the liver it tends to happen elsewhere.  So to continue with the 6-monthly MRI scans and, in his words, if there is so much as a whiff of anything suspicious I go for transplant assessment.


  1. Wow Fiona,
    That news sounds frightening, but with a possible hint of hope attached. How successful are liver transplants and what are the possiblities of you qualifying for one when you do finally need it? Atleast they are going to keep having a close eye on you. I hope everything works out well for you and your family in this.
    Steve just completed running a half-marathon with our son Michael this past weekend. They were pleased with the experience over all, but could have done without the rain the whole time they were running. Steve's next appointment is in June with a new doctor. Our insurance changed at the start of the year requiring us to switch doctors. The new oncologist comes highly recommended by Steve's surgeon so we are looking forward to meeting him. If all goes well, we will just have visits every six months plus a yearly colonoscopy.
    Spring has finally arrived here and my tulips and daffodils are all in bloom. It is too bad they don't last through the summer months as well.
    Best Wishes,

  2. Hi Carla. Its so good to hear how well Steve is doing. I bet he his chuffed to be Running Man again.
    How successful are transplants? The longest survival rate I know of is 17 years. Others start failing again after just a few. It seems to depend partly on whether the patient has any underlying health problems that will damage the new liver like they did the old, or if its a clean start. They don't guarantee you old age, but they do give you a longer life than without.
    Twice as many people are waiting for a liver as there are donor organs. The average wait time for an organ is 3 years. With a liver cancer one would be dead by then, so what they do is put people on the list according to how sick they are. The nearer death you are the higher you go on the list - a pretty bleak lottery!
    At least with surgery you know it will be done and dusted within a few weeks and then its a matter of surgical skill and luck as to whether you stay in remission or not.
    Daffodils here too, trees coming into bud, birds nesting.
    Hope your son is doing well - the one that left home, I know you have more!