Hello everyone. This is my first post and it is regarding my father. He is a wonderful 74 year old vegetarian who has cirrhosis caused by an auto immune condition (they think!) It's a long post but I've tried to keep it succinct.
His downhill journey began 8 years ago with abnormal LFT's. After being told that they thought he has bile duct cancer, he had his first op which lasted 13 hours. 40 % of his liver removed as it was damaged along with his gall bladder.
Following the op he was told by the consultant surgeon that there was no cancer, and that had he been able to perform a biopsy in the area of the damaged liver he would not have opted to remove that area! We were told that the liver would regenerate and to eat steak....great news for a veggie! Lots of soya protein shakes later and my dad recovered slowly despite having the drain out too soon and getting septicemia in the process. He had to remain on antibiotics as he often had episodes of rigours,fever and light stools, dark urine. His LFT's remained abnormal. He remained under 2 teams at Derriford hospital in Plymouth....medical and surgical and continued to have check ups with both ( that alone can be very confusing - the number of times there was crossed wires and non communication between the 2 was frustrating.) I can't even tell you how many times my dad was told that he was a mystery. They knew something was wrong but didn't know what! All the while my dad had good days and bad days and got older.
Fast forward to November last year and my dad became jaundiced and started to lose weight. Bilirubin of around 300. Low albumin. Went in to hospital in January by which point he had lost 3 stone....he was still a mystery. Scans showed nothing, had every blood investigation going, biopsies....nothing. Then in march they announced that they would do another op as they believed that it was the roux loup that was the problem. He agreed to the op but had lost confidence in the team really. After the op his jaundice kept rising but his bowels seemed to be normal. They sent him home. He was very weak. No appetite, fatigue, no muscles left in his legs and now very wobbly.
A month later we go back for the consultant surgeon appointment and he stopped the antibiotics. 1 week later my dad nearly went into a coma with HE. We called for an ambulance only to be told that my dad was dehydrated and to drink more. The paramedic left him at home! My sister had to fight to get him admitted. He was discharged after a week and back on antibiotics. My sister and I discussed getting a second opinion and my dad agreed so we wrote a letter asking for a referral.
Whilst waiting for that my dad developed ascites and the fluid reached the lungs. He was again rushed in. Fluid drained. Further weight lost. Jaundice continued. My dad can now hardly walk but has his pride and refuses mobility aids. He has lost his independence and has to be cared for by my sister who lives close by.
In August we have an appointment at Derriford with a lovely consultant who informs us that dads fibroscan shows a score of 75 and there's nothing that can be done now. No option for transplant - he is too old. They think what caused it is similar to PBS but the markers are slightly different. Oh and by the way your liver never regenerated because of this problem so this is why you have felt so bad. WOW. His cirrhosis had been apparent since January but no one had told him! No point being referred now...there's nothing anyone can do at this stage. That appointment lasted over a hour. There were lots of tears from me and my sister. My dad was very brave. The consultant listened to us and apologised for the poor communication that had taken place and said he would feedback our concerns to the team. I feel like suing them. But I guess I just want someone to blame. How can the liver and bile ducts be such mysterious organs in this day and age?
So here we are. We hope he will make it to Christmas but have no idea how long really. They don't say do they? There's very little support and the information is found by your own research really. We don't know what will be next apart from the fact that he doesn't want to go into hospital anymore. He's had enough. Bless him.
Today he watches sport. Has protein yogurt and drinks. He doesn't really leave the house although he can walk to the back garden and sit for a while. I can't believe that his life is this now. He used to run marathons. It's so sad.
So thank you if you have read this and please comment if you have any tips or ideas that may help. If you are reading this and find yourself or a family member in a similar situation, my advice would be: get a second opinion asap. Don't wait. Do as much as possible to learn about the liver so you can ask the right questions.
With love
Helen
we don't know biopsy results yet he has to go into hospital - advice needed
liver cirrhosis ( very new to this ) 
I need help I don't know what to do 
What a day
A really long post, I’m sorry. 
