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My father has Hepatitis B

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Posted 8/12/2011 7:47 PM (GMT 0)
My dad has recently been diagnosed with hep b after a routine blood test due to high blood pressure. Over the past few months he started getting symptoms of fatigue，weakness, loss of appetite and swollen ankles! We thought it was due to the blood pressure tablets but more test results came back to say his liver was abnormal and needed to see a specialist. He started getting muscle wasting and a swollen abdomen along with sweating in the morning and short of breath n much weaker. The ultrasound indicates he has a cyst n cirrhosis n the specialist said he has end stage liver damage and decompensated cirrhosiss. He is currently taking water tablets and entecavir. I am really worried about him because he is 67 years old and has always been fit and healthy. Please can someone let me know how we can improve his health with diet and let me know if his life expectancy is coming to an end? The will bs having a ct scan next week to find out if he has liver cancer because it seems that is what the specialist suspects.

Post Edited By Moderator (Pink Grandma) : 8/12/2011 4:44:30 PM (GMT-6)

Posted 8/12/2011 7:57 PM (GMT 0)
Hello Heather and welcome to Healing Well.

I am sorry that your dad is so sick. It is clear that you are very worried about him. This forum has lots of caring people that will be able to share information with you.

Please read the hepatitis folder at the top of the threads. It has lots of information about liver disease.

The swelling of the belly is called ascites. Your dad should decrease salt intake. His doctor can prescribe diuretics to help with the swelling.

Swelling in feet and ankles is called edema. Same as the above.

Your dad should eliminate beef from his diet...too hard for the liver to digest. Increase fresh or frozen (not canned too much salt) fruits and veggies. The doctor may suggest to limit fluid intake because of the swelling...but check with his doctor. Also check to see what/if vitamins your dad should have. Also check about over the counter medications...advil, tylenol, etc. Also, your dad should not drink ANY alcohol AT ALL.

I am sure one of the moderators will be along soon to welcome you and offer support.

Please take care and post back to let us know how your dad is doing and to ask questions.

Emma
Posted 8/12/2011 8:41 PM (GMT 0)

Hi, Heather, and welcome to the forum, though I am sorry for the reason that brought you here.  Your dad sounds very ill.  Has transplant been mentioned?  Does he know how long ago he contracted the disease?  It sounds like it is chronic hep B, which has caused his liver to decompensate.  I am glad to hear that he is receiving treatment for it.  However, aside from the entecavir (Baraclude), they have to basically treat the symptoms.

Emma, he appears to be on diuretics, which Heather referred to as "water pills."

I would recommend that he have an MRI with gadolinium contrast instead of a CT scan.  Such an MRI is the gold standard for detecting an HCC (hepatocellular carcinoma/cancerous liver tumor.)  If this is positive for cancer, it is not the end of the world.  I've had HCC twice, including currently.  He should be treated with chemoembolization or a similar treatment, if surgery isn't an option.

Be sure to check out the Caregivers thread, where you will receive a lot of support from others.  Also be sure to read the Hepatitis Resources info.

Hugs,

Connie


Posted 8/12/2011 9:02 PM (GMT 0)
Many thanks for both your advice and support. I have been reading up on it for a few days and prognosis does not look promising. It seems like he has been a carrier for some time and a few years ago, the gp said he had the virus but it was under control and to cut down on alcohol. We should've kept an eye on it since then and it wouldn't have got to this stage. He cant eat much these days but I am finding it hard to think of what to cook for him.

I feel like an emotional wreck because I can't stop crying everytime I think about it and at 7 months pregnant it is harder to control my tears and do not want the family seeing me like this because we want to stay optmistic but seeing my dad looking weak and frail it is very hard.
He will be having the ct scan on private which is very expensive but the ultrasound indicates he has a cyst n nodules n an enlarged spleen so we need to find out asap how bad his condition is and do not want to wait any longer on the nhs.

Is he too old for a liver transplant?
Posted 8/12/2011 10:00 PM (GMT 0)
Heather-

My understanding is that an enlarged spleen is pretty typical for cirrohsis patients.

Can your dad drink ensure nutritional shakes?

I am sorry that you are going through this at such an emotional time for you. I can only imagine. I love my dad so much too and I would be feeling the same way you are.

Keep on being strong.

Where are you? I ask because of the NHS reference.

Not sure about age for transplant. Maybe a moderator would know.

Emma
Posted 8/12/2011 10:16 PM (GMT 0)
I have brought him complan which he can drink when he feels hungry but I still feel he is not getting enough nutrition for his body.

I am based in the uk. My dad was referred to see a specialist on the nhs (national health service) which is free but was told it could take months so we opted to take him to see a private one which is costing a lot of money as he is not insured. he said we were good to bring him in as his condition is clearly getting worse. The treatment he prescribed us already cost £500 for just 2 weeks. Lucky for my dad, he has received an appointment to see the nhs specialist next week so hopefully there will be no financial worry when it comes to receiving treatment but it is the waiting for scans n test results which takes ages so it is a bit of a dilemma whether to go private or not.

Can treatment still make him better or will it just try and stop him from getting worse? Because if he remains the same as he is now then it still does not look good.

Many thanks again for all your advice and support. It truly helps.
Posted 8/12/2011 10:42 PM (GMT 0)
Heather welcome to HealingWell. So sorry that your father is so ill. But we are glad you found us. It's great that his appointment is next week. Are you going with him? Whom ever goes with him needs to take a tablet with a list of questions for the doctors.........also to write down anything directives that the doctor says needs to be done.

I know it's hard seeing your dad this. Try to calm down......you need a clear mind to help your father fight this disease. Stay postive......there are lot's of success stories on this forum........

Take care .........thoughts and prayers..........

PS.. I am going to give this thread a title so that more people will read it.
Posted 8/13/2011 12:45 AM (GMT 0)
Heather, your dad's drinking brought him to this point. He can never drink again. The cutoff for transplant in the USA is age 70. However, in order to be evaluated for transplant, he would need 6 months of DOCUMENTED sobriety in a program such as AA. Meanwhile, the best thing he can do to keep from getting worse is to stay away from alcohol, take the prescribed meds, and eat a healthful diet, including liquid supplements. He also needs to fight for his life and not just give up.

Hugs,
Connie
Posted 8/14/2011 11:10 AM (GMT 0)
Thank you Pink Grandma! he has started his medication and feels much better because the water tablets has helped relieve the swelling and discomfort and he even went to visit the neighbour for a couple of hours yesterday. I truly hope that we are not too late and the treatment works for him! I couldnt bare it if we received more bad news!

Connie, thanks for your advice also. My dad was never a drinker and only had a glass of wine or beer once a week. He has totally stopped drinking now and we have put him on a no salt diet.

Just hope the ct scan comes back with positive news but from what the specialist was telling us it don't sound too good!
Posted 8/14/2011 7:32 PM (GMT 0)

Sorry, Heather.  I assumed from your previous post about the GP telling him to cut down on the alcohol that he was a daily drinker.  If he was only drinking a little once a week, what was he supposed to "cut down" to?  Obviously, he needs to stop drinking altogether, and hopefully he has now done that.  It will give him a much better prognosis.

Hugs,

Connie

Posted 8/14/2011 7:47 PM (GMT 0)
The silly gp who first told him he was a hep b carrier told him there was no need for medication and to not drink so much! He did not offer any information on hep b or told my dad how bad it can get. If only we knew more about the hepatitis virus then we would've been able to keep a close eye on him so it wouldn't have got to this stage. I can only assume that the medication is very expensive and gps are encouraged not to prescribe it unless patients start getting symptoms which I think is very wrong as liver disease is often a silent killer.
Posted 8/14/2011 7:56 PM (GMT 0)

Heather, GPs are not really educated about liver disease, either.  That's why we generally suggest that liver patients see at least a GI doc and preferably a hepatologist. 

What happened is past and this is now...and he's being treated.  So hopefully, he will be able to make a turnaround.

Hugs,

Connie

Posted 8/14/2011 8:56 PM (GMT 0)
Yes, we shouldn't dwell on the past and try to learn from previous experiences.

I know my mother is a carrier, should I get the gp to refer her to see a specialist also? I have recently had a blood test and it came up negative with the hep b virus, can I insist on myself, my 1 yr old son and when my baby is born in a few months time to get vaccinated? The midwife said because I came up negative then there is no need to get vaccinated...
Posted 8/14/2011 9:24 PM (GMT 0)

Vaccination is a preventative step to avoid contracting hep B.  Generally, it is reserved for those who work closely with patients or children, such as nurses or daycare workers, and also those with compromised immune systems.  However, since your mother is a carrier and your dad has the disease, you might want to ask your doctor about the vaccine series against hep B for yourself.  It is a series of 3 shots, given at intervals.  I don't think that they would want your children to have it, but I think you certainly qualify. 

I had hep B at one point in my life (probably around the same time I contracted hep C), but my immune system fought it off.  Now I have the antibody for it, so don't need to be immunized against it.

Hugs,

Connie


Posted 8/14/2011 10:06 PM (GMT 0)
In California, students entering 7th grade need to have had the 3 hep B shots.
Posted 8/14/2011 10:16 PM (GMT 0)
In the uk, you normally have to pay for it unless they think you at high risk. The doctor said my mum has the antibody to fight against it also but think I should take her for another test to make sure everything is ok.

I think less ppl are clued up about hep b in the uk.

connie, if you don't mind me asking. How long have you had hep c for?
Posted 8/15/2011 12:33 AM (GMT 0)

Emma, I think that's a good thing, really, for grade school children to be immunized against Hep B.  Perhaps one day there will be a vaccine against hep C, too.

Heather, I contracted hep C in '68 or '69, due to IV drug use during that time, but wasn't diagnosed until '93...actually the end of '92 by blood work, but I use the '93 date as that's when I had a biopsy to confirm it was chronic active.  Like B, one could be a carrier or have the antibody for it, and not need treatment.

Hugs,

Connie

Posted 8/15/2011 12:59 PM (GMT 0)
My dad has just seen another specialist who was not pleased when we told him that he had seen someone else. It seems that they have different opinions on my dads illness. The first one said my dad has end stage liver disease due to the hep b and decompensated cirrhosis. The other one is saying he won't know anything until the results of the ct scan comes back and should not have been given the entecavir so soon because it can cause more damage to the liver?

From what I have been reading, it is more likely that my dad has cirrhosis due to his symptoms as he has ascites etc... So why would the doctor say he shouldn't have been given treatment yet?
Posted 8/15/2011 7:53 PM (GMT 0)

It sounds like the 2nd doctor wants treatment based on scientific results; i.e., the CT scan, instead of just assuming that he needs treatment.  However, I rather doubt that cirrhosis will show up in a CT scan, even with contrast, as it never did for me.  What DID show up was a huge tumor that wasn't there the previous year (I was having yearly ultrasounds due to the hep C.)  When the tumor showed up on ultrasound, an MRI with gadolinium confirmed that it was HCC.  The MRI didn't reveal cirrhosis.  I had many CT scans and MRIs in the next 2 yrs. and cirrhosis never showed up.  It was only when I had a biopsy of the left lobe during removal of the rt. lobe that I was found to have cirrhosis, Grade 3, Stage 3-4.

A CT scan can show enlargement of the liver and spleen, blocked bile ducts, and reveal tumors...but cirrhosis?  Not so sure about that.

Hugs,

Connie

Posted 8/15/2011 9:59 PM (GMT 0)
I can only assume that they are certain he has cirrhosis and want to do the ct scan to determine if the nodules are signs of cancer? I can understand that the 2nd doctor wants to be certain before giving any medication...

Also my dad wakes up every morning sweating bucket loads, is it because he is hungry as he feels very weak until he has something to eat. I told him to have something to eat before he goes bed but then it would be hard to digest!
Posted 8/15/2011 11:26 PM (GMT 0)

Heather, that makes sense that they are looking for tumors.

As for the sweating, I don't know.  I have the same thing happen, but during the night.  I have to keep my AC at a low temp or I will wake up during the night sweating.  No idea what the reason is for that.  I'm past menopause, so that's not the reason.

Hugs,

Connie

Posted 8/16/2011 6:23 PM (GMT 0)
Got bad news from the specialist today with the ct scan results. He said there is a growth in the liver which is probably hcc and definitely hep b cirrhosis. Can they not tell straight away? My dad is 67 years old and I really don't think he can cope with any more blood tests and possible treatment! Don't know how I am going to get through this!

What can be done for him if he has hcc?
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