"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)

Monday, 24 August 2015

Update 2015

An overdue, very overdue, update. Prompted by a new reader from the British Liver Trust support forum on Health Unlocked. Thanks liveronmymind! 

Next month, September, it will be 5 years since my liver resection for HCC cancer. Statistically the outlook was bleak. Only 30% of people diagnosed with primary liver cancer live more than 1 yr. after surgery. 

The earlier the tumour is found and the smaller it is when found, the better the outlook.
10% of people are diagnosed early enough for a surgical cure to be the potential outcome. I was in that 10% despite having chronic hepatitis for 20-30 yrs. with no significant symptoms til the month before diagnosis. 
The best outcome for patients with HCC is transplant, 75% will survive and live more than 5 years post-transplant. Some up to 20 years. But you and your liver have to be healthy enough to cope with major surgery, and of course there are long waiting lists for few organs. Can you risk dying waiting? 
Only 15% who have a resection will live more than 5 yrs. unless like me the tumour is solo, encapsulated in a "bubble", less than 3cm, and there is no spread outside small margins. Statistically I had a 50/50 chance of living 5 years. So on September 10th 2015, I shall raise a glass of non-alcoholic fizz and toast my GP, my surgeon, myself and my family - thanks all and here's to the next 5.

It’s difficult to know what causes most symptoms/side effects now. My main symptom is fatigue. Only those with a similar diagnosis understand the fatigue. It’s there all day, every day, like swimming uphill in treacle while trying to be "normal" and do normal things like work, shop, and cook, clean, garden, go for walks or days out. Activity after about 7 o'clock in the evening is a non-starter. I fall asleep, mouth agape, on the sofa in front of the TV. Reading a book in the evening is a hopeless task (I complete my Book Club reading by listening to the book on spoken word CD in the car during the day). Head hits the pillow by 9pm and I'm gone. I can sleep for 10/11 hours and get up still fatigued. Getting up at 5.30/6 am for work shifts is a struggle.

The meds themselves have side effects. The one I take for Hep B causes lactic acidosis a condition when not enough oxygen reaches the blood cells. Makes you kinda tired, lol! Long term it also thins your bones. Hence my diagnosis now of osteoarthritis, more aches and stiffness! Luckily it does its job of keeping the HBV undetectable and hopefully inactive. The main drug for my Autoimmune is Azathioprine, and it’s a good sign that I don't get any gastric upset which sadly many do. The AIH itself causes, guess what, fatigue, aches, flu like symptoms, short term memory loss and muscle tremor.  I drop things unexpectedly and sometimes lose my balance.  Though the activity of the immune system can be controlled by the drugs and therefore reduce the liver damage, none of the symptoms of AIH are reduced by the drugs. Oh, did I mention the night sweats.

So where are things now?  I’m classed medically as being on ‘therapy’ so my GP is obliged to check my white cell count and my liver function monthly.  Occasionally the phlebotomy department who run the tests flag up a comment.  In June it was “some atypical lymphocytes present” which the GP checked with no action.  When presented to my hepatologist in clinic in July he zoned in on it and declared I had glandular fever.  How did that happen?  Looking back I could recall sore throat, swollen neck glands, feeling very hot and more tired than usual.  But I’d carried on pretty much as normal, just missed out dog walking one week as I was struggling with the heat.  Other notes on the blood tests come and go, this month its “polyclonal increase in gamma globulins” (whatever that means) which the GP has made no comment on. My IgG immunoglobulin has been around double upper normal for the last 4-5 years.

I’ve been walking the rescue dogs for a year now.  Only missed about 3 sessions I think.  Arnie, featured in previous post is still there, as is Bob, my favourite now that Ziah has been rehomed.