Cholangioma stage 4
I’m from Australia there are no sights like this in OZ???
I was diagnosed in 1stweek in September 2011. I was very jaundiced and tired, sleeping 3-4 hrs a day.
My Liver Specialist is 2ndin charge of Transplant team in a major city in Australia. I had an external drain into a bag to see if liver was producing enough bile, it was!! Surgery was out of the question. My left liver lobe was shrunken to nothing, just like a very dried up piece of meat, right hand side was damaged and bile duct blocked with tumour. I am not a transplant candidate, surgery was a 10-20% chance of survival which was not enough for me to even consider. I was offered a titanium stent which would be placed in the bile duct and attached into my duodenum. I opted for this as it would give me the chance to research other alternatives. Also was offered chemo, which I was told was only token chemo??? I refused, didn’t want to damage my body anymore.
I have to tell you that as a child of 11yrs old, I had what was called yellow jaundice now called Hep A which is caused from an infection. Treatment in those days was a diet with no dairy, no fats lots of fresh fruit and vegies and lots of rest. My liver was of course damaged from this infection.
So when in the first week of hospitalisation I put myself on to a Hep A diet no fats no dairy & very little bread, lots of vegies and fresh fruit. My surgeon said to me “you can eat anything you want don’t put yourself through this diet it won’t make any difference to the outcome.” I took no notice of her what so ever and continued my way of eating. My liver blood pathology said Bilirubin (bile) was 485, should be 8-15, iron level 1377, so on it goes everything was extremely elevated. I had blood tests almost every day in the 3 weeks in hospital. The first day I asked my dr for a copy of the results, she was quite scornful and said your liver tests will not come down you have cancer of the liver it can’t be reversed!!!!!!!!!!!!!!! Well my daughter Louise was with me at the time and said you don’t know my mother???? I have copies of every blood test that was done and they all have been consistently coming down. My Bile count came down 200 points in the first week after the stent operation. The Dr then said oh well you will never get it down under a 100. The last day in hospital it was 55!!!!!!!!!!!!!!!!!!!!!.
Oh, and in between all this I researched naturopath’s in the city area, I was so blessed to find this wonderful dedicated man called Wayne. He had been a research scientist for the government in a Research Lab. CSIRO doing cancer research for 20 years and what he doesn’t know about cancer and the blood is not worth knowing. He turned to Natural Medicine 10 yrs ago, started his practice in Brisbane & Sydney and has been very successful due to his background & dedication. I am on all sorts of vitamins and minerals. Also AVEMAR a supplement that boosts the immune system and has cancer killing properties.
After the three weeks in hospital I was allowed to leave, but not the area as they needed to check on the stent for about a week.
My last visit to the Dr was in a wheelchair as I couldn’t walk far YET!! The dr took one look at me told me to get my affairs in order and to get some Palliative care (palliative care being nurses to look after me) as she presumed that I was dying???????? She wouldn’t need to see me again unless I felt it necessary or the stent blocked up.
I came home the 2ndweek in October. My Gp (dr) looks after my bloods giving me 3 weekly tests all of my liver enzymes are within normal range, iron level has gone from 1377 to 310, bile is 11, of the two cancer markers one is within normal range and the other has dropped from 750 to 467 in 3 weeks.
I am back to normal walking, running, swimming, enjoying my life.
The one thing everyone told me is that I am a strong person? But I have had to learn to be positive in all that I say and do, I try very hard to do this. I have had meltdowns and cried and yelled a few times but always get up and try again.
I hope my experiences give hope and help to just one person I’ll be blessed.
Cheers Jilly