Hello everyone i'm Sophia quite new to this community.
My dads 52 recently recovered from hepatitis B. Hes never drank alcohol in his life but now doctors are saying he has liver cirrosos and will require a liver transplant/surgery rapidly.
Were having consultation with hospital on 15 june regarding the surgery. I've been doing research as cirrosis is a new thing for me.
I'd like to learn if this is a life threatning surgery? Speed of recovery? Peoples experience of this and what i can do to support my dad. (Apart from be really positive and help with his healthy diet)
Worried daugter.
Thanks for your help/support in advance
Written by
Justchill
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Hi justchill and welcome. There are others on here better qualified than me to advise on the transplant procedure. I think the procedure is one where surgeons now have a lot of practice, and as long as your dad has no other serious underlying health problems then the operation itself, while risky, is a better option than doing nothing. A lot of what happens afterwards will depend on the health of the transplanted liver and your Dad's general state of health.
Can I just confirm that it is Hepatitis B that your Dad has been diagnosed with? The hepatitis B virus will have been in his system for many many years before damaging the liver enough to require a transplant. I had Hep B for 30+ years before I was unwell enough to be diagnosed with cirrhosis. I was then put on antiviral treatment and have not (as yet) needed a transplant. Is your Dad on antiviral treatment for the Hep B? Unfortunately the virus can not, as yet, be cleared from the body, so nobody is 'cured' of Hep B as such, but the drugs can suppress the virus from replicating and stop it in its tracks from doing further damage.
If it IS Hep B that your Dad has, I would recommend the rest of the family are tested, as it can be transmitted to others. If everyone is clear, then your GP should offer the HBV vaccination to you and close family members.
Thanks for replying. Yes it was Hep B and my dad was on a dual anti viral treatment which finished approx 6 months ago. As part of his usual monitoring the doctor picked up higher readings in blood test plus a mri scan confirmed the cirrhosis.
He also has diabetes and high blood pressure but apart from that no real underlying health issues except the liver.
The rest of the family have also been tested for this and touch wood we are all ok.
The surgeons have said there are up to 10 procedures they can carry out depending on which part of the liver they will need to replace. Thats all the info we have at this stage.
Can i ask why he was only on a 6 month course of treatment and which anti viral drugs he was given. Are you sure it's not Hep C that he is diagnosed with, as this more typically has a 6 month treatment with 2 drugs, sometimes Interferon and Ribavirin.
For Hep B, the treatment is different. This is a quote from the current EASL guidelines on the therapy for Hep B:
"The goal of therapy for Chronic Hepatitis B is to improve quality of life and survival by preventing progression of the disease to cirrhosis,
decompensated cirrhosis, end-stage liver disease, HCC and death.
This goal can be achieved if HBV replication can be suppressed in
a sustained manner. Then, the accompanying reduction in histological
activity of Chronic Hepatitis B lessens the risk of cirrhosis and decreases the risk of HCC, particularly in non-cirrhotic patients.
However, chronic HBV infection cannot be completely eradicated
due to the persistence of covalently closed circular DNA (cccDNA)
in the nucleus of infected hepatocytes..."
If you can understand this terminology, lol, basically what it says is that Hep B cannot be eradicated (removed) from the blood/body tissue, but replication of the virus can be suppressed with treatment. Did your Dad have a biopsy after the 6 months to determine zero evidence of the Hep B virus in his liver tissue? If not, how do the docs know he is free of the virus? I am on antiviral medication (Tenofovir) for life, as if I stop taking it the virus will come back stronger than ever. Post transplant, the patient usually has to continue on Hep B anti virals, as although the new liver is free of the virus the patient's blood and body tissue is not.
PS, it sounds as though transplant is NOT the only option on the table for your Dad, if there are 10 different procedures available? cirrhosis on its own is not an indicator for immediate surgery. Many people, myself included, can live for many years with cirrhosis. A cancerous tumour would indicate immediate surgery, chemotherapy, or tranplant as options. Or such a badly diseased liver that the organ is failing would require transplant. It sounds like your Dad is not actually listed for transplant but that you and he will be discussing treatment options with his medical team when you see them mid-June?
We're not 100% sure what options my dad has under the "surgery" route. We have been asked to attend the hospital on 15 June (next week) and they will explain what kind of surgery they recommend. They have said it is complicated but will explain more at the meeting.
My dad has a CTA scan which will determine which area of his liver needs to be treated. Obviously the results will go straight to the hospital so we wont find out until next Monday. Fingers crossed for him.
Hi again. I think there must be something else going on apart from cirrhosis caused by viral Hep. As far as I'm aware there is no surgical cure for cirrhosis, you either have it and live with it, dealing with the side effects... or you dont have it. If its so bad that your liver is failing then thats a different route, more toward the transplant route you are talking about. But transplant wont cure his Hep B (unless it was Hep C he had and his 6 months treatment cured that). I'm wondering if they are talking about surgical ways to improve any blockages in his liver or his bile ducts. This is an American document, but describes cirrhosis in its different forms quite well.
My experience (every journey is unique, and that is a phrase you will become acostomed to) is my Chirrosis was so complete, my liver was failing to a life threatening degree. I came there through PBC, but I get the impression the original cause is less of an influence once the liver starts failing. My first knowledge of anything wrong was Jan 2013, by November 2014 (22 months) I was exceedingly ill and got a transplant. There is risk in any operation, liver xplant is a big one, each journey is unique(!) post transplant there are often some issues that need tweaking with medications or small follow on procedures (I have had 2 stents (bile ducts) , and will have stent replaced / removed in 2 months)
Simple answer is the chance of transplant is better than the other option, when you consider they do not offer you a transplant unless you are critically ill, people die on the transplant list (considering all transplants, lungs, hearts, kidneys and livers) so be supportive, encourage a strong will, and good luck! All will be fine.
Thanks for sharing and sorry to hear about your journey, but as you say you pulled through it! Well done!! And you're right, we're lucky they have found out something needs to be done sooner then later.
My husband and I have decided to stay with my parents and in the family home so we can be as supportive and encouraging as possible. Since being told my dad has completely changed his diet (not that he used to eat a lot of junk) and is looking to change lifestyle. So I guess willpower is there.
I was diagnosed with PSC in the 1990's and was told that I would need a transplant in another 10 -15 years or so. At the time my memory of liver transplants was that they were at the cutting edge and front page news (my memory may have been faulty or missing later evidence as science moved on).
The understanding of transplant surgery has certainly come on in leaps and bounds between then and my transplant in 2006 (at age 52) and again since then. And so has the understanding of medication to control rejection. Whilst it is certainly a "big" operation and not without risk, I get the impression that the surgery is almost run of the mill these days.
Thank you. Gosh didn't realise it literally can take years and years to get an actual transplant. Glad you finally had yours. How have you been feeling since? How long did the recovery take?
My dad is 52 so will be interesting to hear what timings the hospitals offer, or when he will have his surgery.
I feel a lot more positive after hearings everyone's feedback and how confident people are with surgery. Certainly released some internal pressure.
I wasn't on the TX list for years but with PSC there is a gradual decline in liver function until the point where the risk of a TX outweighs the risk of not having one.
I guess I was lucky in that I didn't really feel ill until after being put on the list and then was very lucky in that I got the TX within 2 months. Post TX I was in hospital for nearly 3 weeks - there were a few hiccups to sort out and then it was Easter and a shortage of back office staff meant my discharge was delayed waiting on blood tests.
Immediately post TX I felt very tired and had no energy. When I was allowed out of bed, I was totally exhausted after walking about 10 yards. And I mean TOTALLY exhausted! Had to sit down for 15 minutes to summon up the energy to walk back again. After a few days, I started to build up some stamina again.
I was off work for nearly 3 months. I was office based, a head of department that produced lots of reports I checked for content. I found that my brain wasn't working properly - I missed too many errors. In many ways my brain isn't / wasn't as sharp as it was 6 months before the TX. It didn't stop me completing a Masters degree that I had to suspend for the TX though.
I don't get infections, colds or flu although I had a serious health hiccup in 2013 which has left me more tired than before. Having said that, apart from giving up on beach holidays (the medication I am on makes me more susceptible to skin cancer), there is practically nothing I cannot do. I feel very fortunate and privileged.
If your Dad plans to return to work, ensure he returns part time and gradually builds up to full time working again. He should also consider whether he feels he is "disabled" and to make sure HR know if he does feel disabled. When asked on my return to work I said I don't know. I suffered some disability discrimination from my boss and I had to fight for some of my team who he tried to deny aids to help them perform their jobs free from pain. He told me I had no budget to buy the necessary equipment, but I bought it anyway (he wasn't happy).
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