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Old 04-14-2009, 09:07 AM   #1
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how long can one live with cirrhosis

how long can one live with cirrhosis

 
Old 04-25-2009, 09:41 AM   #2
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Re: how long can one live with cirrhosis

My dad lived 15 years after his diagnosis.

 
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Old 04-25-2009, 01:08 PM   #3
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Smile Re: how long can one live with cirrhosis

Quote:
Originally Posted by Toonces1 View Post
My dad lived 15 years after his diagnosis.
Was the cirrhosis the cause of death for your dad or was it something
else?
And what is the course of action for "cirrhosis"? Once the liver is damaged,
does one have to go on a strict diet and limit activities?

 
Old 04-26-2009, 03:33 PM   #4
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Re: how long can one live with cirrhosis

My dad had many many things happen in that 15 years that could have killed him. He is actually still alive but in very grave condition with hepatic encephalopathy, so he doesn't have long. The first problem he had was esophageal varices (have no idea how to spell this). He actually had 3 episodes of bleeding over the course of about 10 years, and had them all banded. He has taken propranolol for this. This is a very serious condition, esp. w/my dad because he has hemophilia. I have read that the fatality rate for this complication alone is up to 30%. The important thing is catching it early so you don't loose too much blood. My dad has had anemia and has had to get blood transfusions quite often (this is how he got Hep C in the 80s). He has battled ascites (again, spelling?) for about 5 years now. He has had to make regular trips to the hospital to get IV diuretics to pull off the fluid. He usually got lasix, but that stopped working so he started bumex, which works well. About a month ago before the encephalopathy really got bad, he had about 50 extra pounds of fluid in his abdomen, and it started moving into his lungs, so he had to go to the ER to start the IV immediately. This condition can can basically make you drown, but there are quite a few medications that work well for it. My dad had very low levels of albumin, so he got that regularly via IV and it helped keep fluid off for a long time. it is very expensive, though, so you should make sure your insurance covers it if you are choosing a plan. Some doctors refused to give it to him because they said it was too expensive.

The other things that have been attributed to his liver are an increased risk of infection. He has had quite a few blood infections such as MRSA, and then the anemia. Basically, the ultimate thing that the doctors can't do anything about at all is the ammonia level, which is causing his condition right now.

He lived for about 10 years with relatively few serious problems except the varices, but the last 5 years have been one thing after another.

If you are pretty young yet and have this diagnosis, I would definitely consider a transplant. My dad was not a good candidate because of his other health problems like the hemophilia, but I would give it serious thought.

I am by no means an expert, but I have read quite a lot over the years so I would be happy to tell you what I know if you have any specific questions.

 
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Old 04-27-2009, 04:32 PM   #5
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Re: how long can one live with cirrhosis

My father lived 2 years after diagnosis, but I believe he had it much longer than that. My father's cirrhosis was brought on by a lifetime of drinking. The Doctor warned him that if he didn't stop drinking he would be dead in 2 years, but he kept on. I remember the last week of his life, he had severe yellow jaundice I knew that he wouldn't live much longer. One consolation to me was he had accepted the lord in his life.

 
Old 04-28-2009, 01:41 AM   #6
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Re: how long can one live with cirrhosis

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Originally Posted by DW123 View Post
My father lived 2 years after diagnosis, but I believe he had it much longer than that. My father's cirrhosis was brought on by a lifetime of drinking. The Doctor warned him that if he didn't stop drinking he would be dead in 2 years, but he kept on. I remember the last week of his life, he had severe yellow jaundice I knew that he wouldn't live much longer. One consolation to me was he had accepted the lord in his life.

 
Old 09-28-2009, 01:40 AM   #7
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Re: how long can one live with cirrhosis

I was diagnosed with cirosis of the liver at 20 and my liver was failing me completely 30 years later.Luckily I received a transplant and am doing great 2years later.

Last edited by bragle; 09-28-2009 at 01:40 AM.

 
Old 09-28-2009, 09:34 AM   #8
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Re: how long can one live with cirrhosis

Quote:
Originally Posted by bragle View Post
I was diagnosed with cirosis of the liver at 20 and my liver was failing me completely 30 years later.Luckily I received a transplant and am doing great 2years later.
Wow at age 20...thats scary. Do you know what caused it? Glad you are doing so well!

 
Old 11-13-2009, 03:28 PM   #9
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Re: how long can one live with cirrhosis

20 Years is mindblowing. I too am diagnosed and I can put that in my "hope" pile.

 
Old 11-15-2009, 05:18 PM   #10
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Re: how long can one live with cirrhosis

well dont give up hope I had cirosis and went for 31 years before my liver transplant.

 
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Old 11-15-2009, 05:37 PM   #11
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Re: how long can one live with cirrhosis

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Wow at age 20...thats scary. Do you know what caused it? Glad you are doing so well!
No still dont know what the cause was, but I go once a year and give a biopsy and they are doing studies.I went to Seattle UWMC to the transplant clinic and they wer great.I wasnt on the transplant list.They do liver tests to determine your meld score.The higher your score is generally the higher they put you on the list.Mine was higher than anyone on the list and I was put at #1.The surgeon came in to see me and said I had a 25% chance to live for 3 months without a transplant. Well that really made me realize how close I really was to death.To make a long story short 3 weeks later I got a transplant and was relesaed 7 days later. Please dont give up because they really can do miracles these days and I am living proof.

Last edited by bragle; 11-15-2009 at 05:40 PM.

 
Old 03-15-2010, 12:51 PM   #12
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Re: how long can one live with cirrhosis

Please help me. I am 22 years old and my 56 year old dad was diagnosed with cirrhosis a couple of weeks ago from hep c...they think hes had hep for decades and cirrhosis for years...he just randomly became ill a few weeks ago and built up fluid in his abdomen...his doctor ran tests and thats when we discovered all this...he has been asymptematic until now has been a non smoker for 12 years and very healthy...he worked out often maintained his weight ate healthy and was involved in a lot of manual labor in construction...was even remodeling our house up until a couple months ago...

i am scared out of my mind

i live at home because i graduated from college in may and have been working as a nanny to save money to move out and get my master's degree...i am an only child and my parents have an extremely unhealthy marriage...i am terrified that it will make my dad worse but i cant get him out because we are on my moms insurance and my dad has no income

the docs told us that the reason his complications came on was because of a virus his body couldnt handle and that his numbers would go down when he recovered...i dont know how much of this i believe....in the hospital he had 4 veins banded and might be getting more done on my birthday at the end of march when he goes for his endoscopy...he has not retained any fluid since he had the belly tap 2 weeks ago...he is eating healthy and has an appetite....the doctors said his numbers for the lab were good- bilirubin was 1.3 and they determined his meld score to be 9...but he had all the symptoms of end stage which is confusing me? esophagael verices, portal hypertension and fluid in belly...

please help me im searching for any hope i can hold on to...we dont have family around and my mom's mental illnesses make it difficult for me to talk to her about this because she gets angry....i cannot imagine my dad not being here for my wedding or first child...i am just starting my life and i need him..i need time to create better memories for him and to show him who i can be

 
Old 03-23-2010, 06:51 AM   #13
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Re: how long can one live with cirrhosis

Dear Toon,

I don't know if you will see this post because of the time that has lapsed. But I was wondering if the time period on your Dad was through all the stages or at what point. It was only because of complications with my gallbladder surgery that they discovered I had cirhossis. This was a shock as I don't drink, do drugs etc. But further test showed I had something called NASH which caused the cirhossis. Unfortunately at the time I had my gallbladder removed (June 2008) my liver was already at stage IV which I understand to be end stage. No one will address longevity with me. I think because they don't want me to get a preconcived notion in my head about when my warranty is going to expire. I also have been diagnosed with many of the problems you're Dad has/had. The varices, acites, etc. So 15 years or anything even close to that would be good news to my heavy heart. I sure appreciate your posting and sharing.

 
Old 03-23-2010, 08:25 AM   #14
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Re: how long can one live with cirrhosis

Dear Searching,

I found out I had stage IV cirhossis in June of 2008 while having surgery for gallstones. It was caused by another disease called NASH which destroyed the liver. Anyway, if your Dad hasn't applied for his Social Security Disability Benefits he should do so. You mentioned he is without income. When the word liver transplant was mentioned in my case my insurance company dropped me and the company I worked for terminated me. So on top of being told I was dying I was suddenly without money and not eligible for unemployment because of the phrase "are you ready and able to work." The Doctors would not release me for work. I do not know what stage your Dad is in, there are 4 with 4 being end stage. From what you said about symptoms and related problems I'm going to guess at least stage 3. If this is the case he needs to get a letter from his Doctor stating this and telling Social Security that his application needs to be filed as a TIER 5. This means that he has a life threatning/terminal illness and will expedite the application process. Even with the Tier 5 filing the application for benefits will most likely be turned down the first try. This is SS's way to weed through the non serious I think. I would recommend getting an SSD attorney from the git go to help fill out the papers. They are somewhat sneaky questions in some cases. I retained one for my appeal but if I had to do it over again I would get one from the start because there were things I was not aware of that would have helped my case. Do not retain one of the outfits you see on TV like Binder & Binder. The SS office will have a list of approved SS attornies in your area and you should choose one of them. Since I had that Tier 5 stamp my first appeal was approved, I had been told I might have to appeal up to 3 times before being approved. Normally an appeal can take up to 2 or 3 years but from start to finish I had SSD benefits in approx. 7 months. In the mean time I hustled down to the Medicaid office and applied for that and had SSI until my SSD benefits kicked in. Also I went down to the Food Stamp office and applied there. All this was difficult for me since I was raised middle class and lived a middle class life. I had no idea what to do while my world was crumbling down around me. The worse thing has been having to deal with the Charity Hospital system. While all the Doctors were sympathetic with my plight and helped with any paperwork I needed while I was making application to Social Security I noticed none of them were quite so caring that they wanted to have a suddenly uninsured, no income person on their door step. Once you get SSD benefits you have to live two years to get Medicare coverage. You mentioned your Dad was on your Mom's health care policy so maybe you won't experience the same health care problems that I have had. If your Dad drinks he should start making a serious effort to quit. Not only for his health but it will help in any appeals process and it will be a deal breaker if he needs to be put on a liver transplant list. You mentioned that your Mom has some problems, and at this point she probably has more. If she is not seeing someone for them you need to try to steer her in that direction. Mental illness and anger management problems are not a good mix. You need to find a support group so you are not going through this alone. Stress is not going to help your grades or health. And no matter how much you wish it to be different there is only so much you can do. It hurts to realize this and it's hard to realize it. I spent the first six months after getting my bad news crying about 12 hours out of the day while trying to keep from loosing my house and car and worrying about what I was going to eat. And the biggest one of all, "why me?" Me, who grew up in the 70's without doing drugs or drinking. I think I have had maybe 4 screwdrivers in my entire life (I'm 53) how in the world could I have a disease that alcoholics had? Then one day I thought all this crying is just giving me headaches and making my eyes hurt and it's deffinately not helping solve the day to day problems I was running into. I had to accept I was dying. That was so hard. It was hard to accept that even getting my SSD I am still on the edge of indigent and that the class I am now in don't make it onto transplant list. I had a serious talk with my Doctor and after much hemming and hawing finally said that even without a transplant if I stayed medication complient and had the other related problems (bleeding varices, abdominal fluid build up, kidney dysfunction etc) tended to there was no reason to think that I could squeeze another 10 years out of life. Since I'm hard headed I'm going to tack on another 5 years to that hehe. There is a lot of information available on the internet about cirhossis and Hep C. (Everyone is surprised that is the one problem I don't have, hep C) But it's going to come down to what your Dad does. He is the one who needs to change what ever bad habits he may have and he needs to go to the education classes that are offered through just about every hospital there is regarding his condition. If he does his part there is no reason to think he will not see you through your dreams and his grandchildren one day. I believe you are going to have to take care of you a bit more. I know the difficulty of having a parent who suffers from mental illness, my Mother was bipolar and I know the pain of being a child who is aware their parents don't have a paticularly happy marriage. I had a younger brother who I was in charge of a lot. I felt responsible for my Mom's problems, I felt I was responsible for my Dad's problems. I always felt everything was my fault. It wasn't until after I was grown I finally realized that I was only a kid, and that there was no way I could have waved a magic wand and made life hunky dory for every one. So think of yourself and take care of yourself!! Talk to your Dad. When the time comes and his time is coming to an end (we will hope this is far down the road) make sure you have talked to him and told him that you love him, that your angry at him that he is leaving you and that you are going to miss him. Send him some flowers. He won't be able to see them after he is gone. Talk to him about what his wishes are regarding final arrangements. Get a pre-need policy. As horrible as it sounds the worst time you can be making arrangements is at the loss of a loved one. The funeral business is just like a car dealership. They try to shame a person to buying more then they can really afford by similar marketing techniques. There is a company called Service Corporation Internation (SCI) that specializes in going in and buying established funeral homes and keeping that name. Find out what they own in your area and talk to one of their pre need counselors. Go in there with a budget in mind and be ready to haggle some. You can't do this when you are racked with grief. I realize the practical advice sounds harsh and I apologize for that. I did not mean to type for so long but I hoped this has helped you at least a tiny bit. I will keep you, your Dad and your Mom in my prayers. I wish you the best.
Sincerely, Pat

 
Old 03-26-2010, 11:51 AM   #15
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Re: how long can one live with cirrhosis

It depends on the person. What are the symptoms?

 
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