hope for dad with cirrhosis?

Hello Community.
     I'm 22 years old and my 56 yr old dad was recently diagnosed with advanced cirrhosis from hep C that he's apparently had for a possible 35 years. A few weeks ago he was experiencing intermittent flu-like symptoms that concerned me. I pushed him to go to the doctor and he began to accummulate fluid in his abdomen that made him look pregnant. After some tests they found the cirrhosis. Two days later the fluid was to a point of extreme discomfort and his was admitted. He had 7 pounds worth of fluid removed!  He was really uncomfrotable, sick, and pale from anemia. Apparently the fluid was infected. The doctor's told us that he had gotten an infection that his body couldn't handle which was why we were able to find out about all this? He has protal hypertension and esophagael verices that he had banded right in the hospital. He is going to get more done in a week. His bloodwork is "good" they said? Bilirubin of 1.3 and no ammonia. His MELD score is 9. I have the paperwork if more information is helpful.
     We have removed all alcohol from the house and he is also on a low-sodium diet. Luckily he has always been a healthy guy...physically fit, works out often, and has been in construction his whole life. Even on the weekends he worked on our house. He's outside raking as I type this. Still staying active despite some difficulty sleeping. He is still pale looking and has lost 15 pounds. Other than that he's up and about living life. Right now I'm in shock mode...but lately I have been going crazy with anxiety. I have done a lot of research and it looks like there is not much hope for someone with cirrhosis besides a liver transplant? Is this true? Can he survive 5 years at this point? This is all so sudden for us...he's always been the healthiest, most active person I know his age. I am great at being positive and supportive around him..but inside it is difficult not to crumble. How much of a life can we lead? Can I still travel with him? There are so many things we have left to do together...I just graduated college and thought we were just starting out. I finally have time to do the things we have always talked about and then we find this...
      Can anyone tell me anything? We see a hepatologist in a week. Thank you.

[orphanedhawk]

Hi,
  I was like your dad.
In 2005, after swelling up with ascites, I was diagnosed with hepatitis C virus (HCV) and decompensated cirrhosis.
I couldn't have been more surprised having lived an active healthy life.
I was so shocked I spent a year in denial.

My ascites was controlled by a mixture of diet and diuretics.

Depending on how severe your dad's cirrhosis is, he may want to do interferon treatment. If it is successful in clearing HCV in time, his liver will rejuvenate.
I did the treatment and relapsed. And truthfully, I think the reason it didn't work was I was already so sick.  What does his heptologist suggest?

Last April I had a liver transplant and am now doing well.

Your dad can do anything he feels up to doing. I didn't stop traveling.
Just prior to my transplant, flying made my legs swell, not a good sign.

Exercise is good even if its just walking. As his liver worsens he'll experience more fatigue.

As you know, he shouldn't drink alcohol and needs to cut out sodium. Read all labels when you shop. Its surprising how much salt is in everything.
Avoid red meat. Fish, eggs, tofu and chicken are fine. In fact tofu, soy milk, and egg whites can help albumin levels.
He should stay away from processed foods and avoid inhaling pollutants like paint fumes.

Has his ammonia level been checked? Another side effect from cirrhosis is encephalopathy which will make him act goofy.

Nobody can say how long he will stay relatively healthy. I went 4 years from diagnosis to transplant but I think the interferon and neupogen may have made my liver worse but I can't know for sure.

You have time. Make sure he has good insurance.
He is very fortunate to have someone looking out for him. My experience was of slowly fading away.

Good luck,
OH

[searchingforsun]

thank you for you response...so glad to hear you are doing well.

figured out that dad's "infection" that got him diagnosed was sbp...not good =0/ ...his diet it good i too was amazed at how much salt is in everything! he has lost a lot of weight though..most of the time he forces himself to eat. at least he does. sometimes he feels hungry but tells me he feels uncomfrotable after he eats until he can start burping. he is tired but not sleeping well at night aside from a couple good nights after a long walk during the day or something. i have been reading that the insomnia could be from the beta blockers?
dad has not seen his hepatologist yet. we have the first appointment on march 29th...im anxious for it because i am still holding on to a bit of hope but terrified that that hope will be ripped away...i have been reading a few positive stories of people who were able to turn it around or keep it under control but the rest doesn't seem good at all...i am estimating him to be at CTP grade B. that is strictly based on his levels and symptoms this far.
when he was in the hospital they told us his liver is still functioning which of course is good. blood is getting through and his ammonia levels are normal. he does not have jaundice yet just anemia. i think the most frightening thing about this disease for me is that its so unpredictable it seems. from what i gather i feel that we will pretty much be living on the edge with it forever from appointment to appointment hoping for good news and then hoping that the news stays good. i am terrified he will develop cancer. i don't know how anyone can hold on to their sanity while going through this...it has turned me mad and im not even experiencing it physically. issues at home are not helping the cause...i am trying to figure out what to do about that as well...scared that if dad is stressed his condition will get worse.
aside from the weight loss, discomfort after meals and trouble sleeping (sounds like a lot but ik it could be a lot worse) he is doing pretty well. continuing on with life raking, walking the dog, planning for the future etc. it helps me to feel better seeing him like that.
if you don't mind me asking what was your meld score at time of diagnosis and treatment? dad's is 9...based on what i have read i cannot decide if thats good or bad. at first i thought it was good acknowledging that he could be a lot worse...other times i feel it's bad because it does not factor in the complications and does not help to predict your life expectancy which is my main concern at this point. i am not close to mom and dad has barely seen me grow up. i fear without him i will be alone in this world...like i will never feel the bliss of being purely happy again....just hoping for hope right now.

[orphanedhawk]

Okay, first of all I'm not a medical person but I have been through a transplant and am doing really well. I'll try to offer advice and help.

Please do something for yourself. Meditation, yoga, exercise, breathing exercises, you need to learn some techniques to help you relax.  If you are calm, it will help you deal with this difficult time.

When I get worried, I breathe deeply and slowly. I feel my belly rising and falling. Pay attention to the breath. Then see yourself in a beautiful place. I see myself lying in the sun on a soft beach. The sun feels so good. The air is clear and I hear the ocean.
Now, when you are upset, think of this place, wherever your relaxing place is.
Take a moment and breathe.
I hope this helps.

Not everyone deveolps cancer. When I had my transplant the surgeons said I had been living on 8% of my liver. I didn't have cancer.
Sure its a possibility. He could get  his by a car too.  Put it out of your mind.

Will you dad drink smoothies? If so mix fruit, yogurt and add flax seed meal or flax oil. Flax will help put on weight and its full of omega 3.
Ginger root is good for digestion. Grate a little and put it in the smoothie, oatmeal etc.

You are right about the MELD score having limitations. But nobody can predict how long anyone will live or how fast or slow the disease will progress.
By the rules, I should have been dead, but I wasn't!

Make a list of questions for the heptologist's appointment. And do let me know how it goes.

And life changes. Without feeling down, up wouldn't feel so good.
Wishing you all the best,
OH

[nygirl7]

My mom told me something the other day and it impacted me in a good way so I'm going to tell you even though it's kind of off subject.

My son went to Florida for spring break last week.  Now mind you he gets in enough trouble up here where we live so I was a nervous wreck since the second he left.  Believe me, I was a 'problem' child who had a mind of their own (how I personally got Hep) so my mom has experience with this.

She told me "Deb all the worrying in the world is not going to change anything that will happen - believe me - don't waste your energy on worry instead try to put it towards good, positive thoughts".  Well not as easy as it sounds but when I'd get really worried I tried it.  I forced myself to think of good things and you know what it did help.

Like Hawk says about the breathing - you can't let the fear of what is going on with your dad paralize you it won't help a gosh darn thing in the end and the stress will just end up making things more tense - believe me your dad does NOT want to worry about you...so the best thing you can do for him is to be supportive and learn as much as you can and then just be there for him.  That is what he needs more than anything.

My family couldn't really do anything to help me when I was going through treatment but knowing that they were there and they loved me helped me SO much.  Knowing that gave me the courage and strength to get through the bad days and nights.

When you look at someone like Hawk who just posted to you, you can see the miracles of modern medicine.  None of this is easy but it is possible.  Just try to remember that for right now and in doing that you will give your dad courage and he will give it back to  you and it's a big circle that will help you more than anything else.

You sound very smart and he is VERY, VERY lucky to have you. ♥

We wish all the best for you and your dad,
NYgirl

[IAmTheWalrus]

I am really sad to hear about your father's disease. I am sure you will learn a lot more after you see the hepatologist. He should be able to evaluate the relative risks and benefits of treatment for the HCV as well as palliative care.

I was in a similar situation a few years ago. I was probably not as ill as your father but my liver was stage 4 and I was diagnosed with non-resectable HCC. I had a liver transplant in 2006 and I am doing just fine now. I just got back from a vacation hiking around in Arches National Park with my chidren and grandchildren.

It sounds to me like your dad has a lot of life left in him. I'll bet he really appreciates having you there. My kids and grandkids were really important to me and were the things that kept me going when things were tough.

I would guess that your father would be a good candidate for transplant from the sound of it. I hope you are seeing a hepatologist that is associated with a major hospital that is also a liver transplant center. You can get information on the transplant process at UNOS.

http://www.unos.org/whoWeAre/transplantCenters.asp

There are 129 transplant centers in the U.S. There is a lot of information on the link above about rules, waiting lists, outcome statistics, etc.

Good luck to you both. I hope you stay in touch here. Like OrphanedHawk, several  here have been through the transplant process and might be of help.

Best wishes,
Brent

[orphanannie26]

hi, my mother is 55 and in the end stages of liver failure caused by hep c. she found out she had hep c a few years ago via transfusion in the 70's. interferon didnt work. her body couldnt handle it. She currently has ascities. she has fluid removed every other week approx, she has water on the brain which makes her confused (this occurs when toxins & fluids are up) she has been banded in the throat, she has open sores, scarred skin, her spleen enlarged and kidneys now affected. when she has a hepc flareup shes flu like, temp etc. she sleeps alot, her days & nights are flipflopped, shes been this way for the past year. its horrible to watch. just recently shes been getting tapped every other week (the fluid comes back faster & faster) the spleen & kindeys are also recent. this is my situation. I dont know when she'll pass. should be soon. just sharing..................

[searchingforsun]

just an update...after my dad's dad's funeral this past saturday...the information leaked to me that mom has hep c too...genotype 1 so she didn't even get it from dad! he's type 2. she either got it from a transfusion in '72 or somewhere along the line of being a nurse. we don't know the extent of liver damage she has not had any obvious complications yet like dad did but who knows. we just know her enzymes are elevated. mom had a bipolar episode that night and is finally agreeing to be evaluated. mom and dad are separating. lots going on! wish i had siblings...but no use crying over spilt milk. i'm thankful for my blissful childhood...and trying to soak in as much hope as i can come across.....

[Lady Lauri]

searchinfor.....
Wow, I am so impressed with your knowledge, research in this, all the learning you have done for your dad, let alone what a good soul you are at your age. What a lot you have to deal with at 22 yrs old, and what a caring, good daughterl you are for your parents, even having stated your were not so close to them at times. I have 3 sons, they are also very caring, giving to me, yet we are close, always been. They helped and shared in my illness, treatment, but didn't carry it all on their shoulders. It sounds like you are doing that, and as many said, I hope that you will start doing some things for yourself.
It is very true....no amount of worry has ever brought anyone an extra day of life. In fact, that stress can seriously hurt you.
I'm very sorry to hear of the current news with your mother. She may be nowhere near the stage of liver damage,cirrhosis your father is. There is hope in a transplant with him, the others above know more on that. But keep that hope. Your parents will be getting care and I do hope, even in their illness, they are caring for you in this, trying to help you in the over abundance of worry you are dealing with. It could help you to find someone outside of the home to talk to, counsel you. Please consider this.

It's late, I'd love to say more, word all this better, but just wanted to say a few words to you. The kind of person you seem to be, I don't think you'll ever be alone in the world.

As said above, please stick around here, we'd all love to keep hearing from you, updates, helping if we can.

Hugs to you young lady :), LL

[CourageToHeal]

Wow.  You are so strong.  I am confused though??  Did your Dad pass away within a month from your post in March?  Did he make it onto the Transplant list?

[Mandalion]

I am 26 and my dad was diagnosed with hep c, cirrhosis and liver disease. He did drink as well and that helped speed the process of his Hep C. We found all of this out Jan 15, 2010. They said he might not make it through the night that night. It is July 2, 2010. Dad came home and was very tired. It is like he aged 50 years. He is only 56 too. He had some really scary days and has been in and out of hospital stays. They also found a big tumor (about the size of a softball) in his portal vein. All the doctors say his time is limited. He has had trouble with veins bursting in his stomach. This disease is a living hell for him and my family. I am sorry anyone has to deal with this. One of the worst parts is that his toxins build up in his body and affect his brain. He thinks he is a different person sometimes. He controls this with a med called Lactulose. It glues him to the toilet and gives him horrible stomach pain.
I am sorry anyone has to deal with this but also surprised to hear others are going through the same thing.

[mena69]

My mom has end stage liver disease from Hep C.   She has had chronic back pain for 40 years and believes that she contracted hep c from accupuncture.  She is jaundice, her legs, feet and abdomen are swollen, she has been in and out of the hospital 5 times in as many months.  She is using krystalose to keep her ammonia levels down.  This is not always successful.  She is only 63 years old and does not want a transplant. She believes that, given her chronic pain, she cannot undergo another surgical procedure.  I see her going through this living hell....I am going through it, too...and I don't know how to help her.

[Bill1954]

I’m sorry to hear of your mom’s problems. You might discuss the drug ‘rifaximin’ with her doctor as an adjunct to the krystalose (Lactulose). It’s rather expensive, but might help reduce encephalopathy.

Bill

[mena69]

Thank you for your message.  She is actually taking that medication at the present time.

[Bill1954]

Hi again, Mena—

You might want to repost your thoughts here:

http://www.medhelp.org/forums/Hepatitis-C/show/75?camp=msc

Click on the ‘post question’ button near the top of the page, and it will allow you to open your own thread. The forum here that you posted in originally is the Hepatitis C ‘social forum’, set aside for topics outside of direct medical discussion; you might get more responses by posting in the forum I linked above. I’m sorry to hear of your family’s painful journey; it must be very difficult for all involved. There are others in there that are transplant survivors; they might be able to help you better understand what lies ahead.

Take care—

--Bill