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my brother has hepatitis C, ESLD, portal hypertension and ascites...what are the options?

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Posted 8/18/2010 11:57 AM (GMT 0)
hello,
i am from kerala, india. my brother, 44 years of age, is unwell. we have hospitalized him now. it all started 2 months ago when he started feeling nausea when eating. we got an ultrasound done and the doctors found a tumor of 4 cm x 9 cm. and that there was severe portal thrombosis(hypertension). he then started getting fluid collection in his stomach(ascites, i believe). now he has lost a lot of weight and his eyes and skin have turned yellow. he cracks a couple of jokes and then sleeps a lot. we make him sit a lot. ALSO he is suffering from paranoid schizophrenia(for the past 14 years brought about after severe injected drug and alcohol abuse-which probably gave him hepatitis C).
We keep him awake so that he sleeps better in the night. we have decreased his clozapine(for paranoid schizophrenia) as that effects the liver badly. but the down side to that is that he hears voices when he is lying awake in the night. he has been almost normal for the last 12 years. he has been running a business along with my sister and has travelled a lot.
he is taking cobadex(multivitamin), spironolactone 50 mg, tamoxifen citrate IP 20mg, neurobion and of course clozapine(for schizophrenia).
does this sound normal?
Posted 8/18/2010 6:08 PM (GMT 0)
Hello, mybrother, and welcome to the forum. I'm sorry your brother is so ill. When you ask if his condition sounds normal, I suppose you mean for his particular problems. The diuretic (spironolactone) is quite a low dose. I suppose the Tamoxifen is to control the tumor, but having had a large hepatocellular carcinoma myself I can tell you that regular chemo does not work for liver cancer. Treatment is usually chemoembolization and other forms of chemo that are directly injected into the tumor to shrink it. Has anything been said about doing this?

I suggest you read the information in the folder at the top of the page entitled Hepatitis Resources. You will get an idea of what to expect.

I doubt he would be a candidate for transplant, due to the paranoid schizophrenia and other problems. I really don't think you should decrease his medication for that. Cutting the dose is likely doing nothing for his liver at this stage, but is causing him to "hear voices." The poor fellow has enough going on without adding that.

Hugs,
Connie
Posted 8/18/2010 6:18 PM (GMT 0)
Being a counselor by trade I agree with Connie... I guess it's about quality of life... and the Clonapine does that... there may be another option that will work for the voices but at his age... he has probably tried other meds and this is the one that works for him... but look into alternatives... and Connie is right about the mental illness precluding him from transplant... at least as far as I know.. pretty sure this would screen him out that and the size of the tumor.. sorry for your difficulties..
Posted 8/18/2010 7:20 PM (GMT 0)
thanks for the comments.
well we have decided to check with a leading liver transplant surgeon regarding the liver. since my brother has enough financial resources we thought he may as well take the chances after all what will we do with his money when he isn't around. it should help him even if it is a faint effort.
why is it that people suffering from paranoid schizophrenia are not considered for a transplant?
Posted 8/18/2010 7:21 PM (GMT 0)
also he is trying to control the voices and my sister sits up with him to give him mental strength. should fluid be drained out to relieve his swollen stomach? will he get an infection from the fluid build up or will he get it from removing it?
he is eating about 4 meals a day(oats, pureed beetroot n carrot cooked in broken rice as also is taking ensure and a mild glass of b protein). however there is a lot of muscle wastage.

Post Edited (mybrother) : 8/18/2010 2:06:35 PM (GMT-6)

Posted 8/18/2010 8:20 PM (GMT 0)

Mybrother, it is not a matter of just having the money to pay for transplant.  I'm guessing that the reason he might be screened out due to his mental problems has to do with being able to follow directions prior to and following transplant, as there are many medications and appts. involved.  They may also take his past drug and alcohol use into consideration.  The best thing is to have his primary physician make a referral to a transplant center.  Then let them tell him or the family what is required.

Is he seeing a hepatologist?  That is who should make the call on whether he should be drained.  The fluid can become infected, but the procedure to remove it also carries the risk of infection.  I would think that Lasix together with spironolactone would be prescribed before going on to the next step of paracentesis.  I take 20 mg of Lasix together with 50 mg of Aldactone twice a week, but when I had cancer it was 40 to 60 mg of Lasix and 200 mg of spironolactone (Aldactone) daily.   I never had to be drained.

Muscle wasting is part of liver disease.  His diet sounds okay, though he could use some fresh fruits and veggies.

Hugs,

Connie


Posted 8/18/2010 8:31 PM (GMT 0)
thanks connie,
am lying awake trying to figure out what to do. and your words just seem to help. the doctors are trying to balance out sodium levels and so some diuretics are reduced and increased.
as for his schizophrenia, he hasn't touched alcohol in the last 13 years. he also listens to my sis who is monitoring him all these years. also, he has been extremely responsive to his medicines and has expressed his need to control his schizophrenia symptoms and medication well. he has been taking care of my granma and is extremely attached to her n my sis(they live together).
i really hope a transplant is an option...pl. God let it be so.
Posted 8/18/2010 8:51 PM (GMT 0)
I hope the transplant center can be convinced that he is a good candidate. They will put him through extensive testing, including psychological testing, prior to considering for transplant. It will also depend on his MELD score as to whether he is listed and where on the list he ends up.

Hugs,
Connie
Posted 8/19/2010 2:37 AM (GMT 0)
my sister, and me are the only ones who match his blood type, B+. my other 2 brothers are A+. i don't think i can donate as i have fatty liver disease(hypothyroid) and my sister is recovering(??) from MPT(malignant phylloid tumour) which manifested in her left breast which was removed. do you think they will take my sister(or me) as live donors?
Posted 8/19/2010 3:18 AM (GMT 0)
I think your sister would be out of the question. Not sure about you. Has he been referred to a transplant center yet? If not, that is your first step.

Hugs,
Connie
Posted 8/19/2010 8:24 AM (GMT 0)
hey,
will let you know what's happening. as of now trying to get an appointment at a really good liver transplant center.
Tc
Posted 8/19/2010 6:47 PM (GMT 0)
we got a report from somebody stating that ESLD, HCC is an incurable disease. is that true?
Posted 8/19/2010 10:21 PM (GMT 0)

It depends on what the ESLD is caused from.  I had HCC and no longer have it, but I am a walking miracle.  Be sure to get the best care for your brother that you can.  You can at least slow the disease process and possibly put the HCC into remission.  Did he ever have treatment for hep C?  I doubt that he could have it now that he has cancer, but take care of the cancer first...or try for a transplant.

Hugs,

Connie


Posted 8/20/2010 4:02 AM (GMT 0)
There are transplants available in a couple of countries, such as Thailand and Taipei. Money appears to be the deciding factor, so you might want to look there.
Posted 8/21/2010 4:51 AM (GMT 0)
yeah for someone sober... and stabilized for so many years ... and has the money go for it.. and yes my prayers are with you and your family..
Posted 8/22/2010 4:10 AM (GMT 0)
we had spoken to a globally reputed transplant doctor in delhi(capital of india), and he had asked us to check with 2 transplant doctors* close to our house whether the cancer had spread into the portal vein. (He said even if there was 1% chance he would do the surgery, though)
So i met the first* (reputed) transplant doctor yesterday and he said that if the tumor has entered the portal vein then it would be difficult. (my brother's CT scan shows the portal vein disappearing around the tumor, which the doctor felt was 99% chance that the tumor had moved into the [portal vein). He said that since cells could be released into the blood stream, doing a transplant would mean that there was a 70% chance the cancer would be back soon. So doing a surgery would be expensive and useless.
However, he also said that technically it was possible. So when i expressed a wish(better to die in a few weeks vs getting a transplant n maybe living longer-however much that may be) to do surgery he gave us the details. my sister is ruled out but they could consider me(they need to check out how much of my liver is available-i have fatty liver disease).
now we are (of course regretting that the option of transplant wasn't offered to us earlier by any of the doctors) awaiting confirmation from the second transplant doctor* on monday. family n friends are divided on it. (those against are sceptical!).
but how can we not do it? Miracles do happen...
Posted 8/22/2010 4:34 AM (GMT 0)
I believe in miracles... I will pray for yours... my thoughts and prayers are with you and your brother and family...

Posted 8/22/2010 4:43 AM (GMT 0)

My brother, I think the doctor makes a good point about the portal vein.  My tumor, which was in the rt. lobe of the liver, was 12 x 11.5 cm.  It had metastasized into the inferior vena cava (a large vein that comes off the liver.)  The first hospital said there was nothing that could be done.  That's when I contacted Mayo.  I was told that without treatment, I had 6 mos. or less to live.  So first I had chemoembolization, which is pretty standard for the first step in treating liver cancer.  Had to wait a couple of months to see how much that shrunk the tumor.  Then they decided to treat it with a study drug, TheraSphere, which is microscopic beads of radiation that are directed right into the tumor via the femoral artery.  More waiting for shrinkage of the tumor.  After a few more months, the MRI showed that the metastasized part had shrunk back into the original tumor and that the tumor was dead--but so was my rt. lobe.  So I had surgery to remove the rt. lobe with the dead tumor in it.

I have been cancer free for 3 yrs. and 3 mos.  They keep a good check on me with MRIs and blood work every 6 mos.   This doesn't mean that it may not come back at some point, but since it wasn't in my lymph nodes, I have a better chance of survival.

So I think you should see about shrinking the tumor before anything else.  It's true that statistically the cancer does seem to come back after a transplant.  So it's really important to shrink and kill it, if possible.

Hugs,

Connie

Posted 8/22/2010 8:24 PM (GMT 0)
we are awaiting our meeting with 2nd doctor in the next 12 hours.
meanwhile, its night time and i am keeping vigil. being online helps as it keeps me awake. We have noticed that in the last few days, my brother has moved in the direction(expected) of agitation, suddenly jumping up to go nowhere in particular and restlessness. ascites is strong.
some questions:
1) what is the process before a transplant is done, ie, do they drain the fluid out first?
2) then do they carry out necessary pre-liver transplant tests eg: pulmonary, Ct/MRI, etc for which he will be admitted into a hospital(i doubt without fluid being drained out he will be able to survive this aggressive behaviour, he is showing nowadays, in hospital. now my sister, who has some strong working bond with him because she took care of him all these years thru his schizophrenia etc is there with him, and is able to talk the situation kind of back to normal. obviously in hospital she won't be there throughout.)
3) will the aggressive/erratic/restless behaviour come down once fluid is removed? i understand that when ascites is real bad then these aggressive, erratic behaviour starts manifesting and that the schizophrenia meds dosage coming down(its not helping the liver situation so has to be brought down) will only complicate that?
4) will his condition improve, even marginally, when fluid extracted eases up on the current stress to body because of severe ascites? so will this help with him being in a better condition to handle his transplant?

Post Edited (mybrother) : 8/22/2010 2:33:08 PM (GMT-6)

Posted 8/22/2010 8:58 PM (GMT 0)
Usually all the testing is done pre-transplant. Draining fluid basically just makes them more comfortable. His ammonia could be elevated and causing the agitation, or it could be because his psych meds have been reduced. Since you are not in the USA, I'm not sure how transplants are handled in other countries, and especially a live donor transplant. Therefore, you should direct your questions to the next specialist you see.

Hugs,
Connie
Posted 8/22/2010 9:19 PM (GMT 0)
did you, connie, also have ascites and agitation. was your fluid removed presurgery or even earlier as a routine?

as for the transplant procedure(if we do go in for one), the co-ordinator lady had said that Ct scan,pulmonary(echo, ecg etc), psychiatry would be done pre surgery for both donor n patient. i will ask the lady about the fluid later when morning happens.

he was very agitated just now and i sat on the bed and held him and sang a couple of christian songs and some old classics which we used to listen to as kids. he actually sang a couple of lines with me of each song.

i read that being gentle and taking long breaths could be helpful. i tried to play coach(some memories from the yoga class i used to attend). i also read that a light massage is good so i am trying to calm him by massaging his forehead a bit. but i do get a bit unnerved by the erratic behavior. mentally i need to get strong. having 2 kids of my own has made me a little gentle(only when they are ill) but a grown man is a whole different kind of challenge.

Post Edited (mybrother) : 8/22/2010 3:30:47 PM (GMT-6)

Posted 8/22/2010 9:54 PM (GMT 0)

I did have ascites and also my feet and calves were swollen up to the point that they even "wept" fluid.  It took quite awhile before they prescribed diuretics for me.  That was prior to cancer surgery.  I was never drained.  And I haven't had a transplant.  I still take Lasix and Aldactone twice a week.  I'm trying to reduce it to once a week, but I do notice considerable swelling when I do that.  Diuretics are hard on the kidneys, which is why I reduced the dosage.  Also, I didn't seem to need as much as I was taking.  The doctors have kind of left it up to me.  I am very in tune with my body.

I was never agitated nor have I ever had elevated ammonia.

The things you are doing to calm your brother sound good to me!  I am suspecting that it is the decrease in psych meds that is causing his agitation.  It could also be a reaction to being physically ill, that he may not understand fully.  How much does he know of his condition?

Hugs,

Connie

Posted 8/22/2010 10:51 PM (GMT 0)
why did thy decide to not do a transplant?
Posted 8/22/2010 11:07 PM (GMT 0)

Because of the tumor having metastasized to the inferior vena cava.  That's why I suggested focusing on shrinking your brother's tumor.  Once it had shrunken back into the oiginal tumor and been killed...they decided to just remove the rt. lobe.  No need for a transplant as the left lobe was functioning okay.

Hugs,

Connie

Posted 8/22/2010 11:17 PM (GMT 0)
he was restless all night(its 4.45 am here) and started moving from bed to sleeping on floor back to bed etc. then he started cold sweats and shaking and when the nurse(we ate currently doing palliative in a hospital) came and checked his oxygen was low(less than 85) and so she put him on oxygen and after a lot of panic he is now sleeping peacefully with oxygen.

we really need to move fast.

did you drain your fluid and how often and at what intervals can it be done(we haven't done it so far and its real bad).
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