Aa
Cirosis
My husband has been recently diagnosed with stage 4 of 4 cirosis, he has Hep C, and I wanted to know what the percentage of people at this stage can go on and live a long happy life? He will begin medication on April 1st. I have been doing some research on the medication but I am still confused on the side effects and how it will effect him? I know it is not going to be easy for me and my two teenage boys but I believe that we can get through this if we stay strong for him. I am also worried about whether or not I should continue working. Please help me, any input you or anyone else can give will be of great appreciation.
Great! Thanks for that info too. I'm getting ready to go spend some time up in Alaska with him. I'm actually leaving Friday and I'm going to stay for a couple months - so I will let him know.
Thanks again.
Tanis
Thanks again.
Tanis
Thank you both for your help!
That is the same place my dad just went to in Anchorage. He didn't see either of those doctors. Dr. Sagoon was gone, so he saw someone else there - I think a Dr. Thompson (not positive). He is the one that said he would have to go to Seattle for the transplant. But my dad would come to Portland because that is where all of our family lives, so he could stay with either me or my brother.
His last blood tests came back all normal except his amonia level being high. But his Albimum and Bilirubin were all at normal levels. I guess we will just have to wait and see how he feels after his two bacterial infections are gone and he goes to see his regular doctor on Thursday.
Thanks again for your help.
Tanis
That is the same place my dad just went to in Anchorage. He didn't see either of those doctors. Dr. Sagoon was gone, so he saw someone else there - I think a Dr. Thompson (not positive). He is the one that said he would have to go to Seattle for the transplant. But my dad would come to Portland because that is where all of our family lives, so he could stay with either me or my brother.
His last blood tests came back all normal except his amonia level being high. But his Albimum and Bilirubin were all at normal levels. I guess we will just have to wait and see how he feels after his two bacterial infections are gone and he goes to see his regular doctor on Thursday.
Thanks again for your help.
Tanis
THE ABOVE STORIES ARE A PERFECT EXAMPLE OF WHY WE PREACH PEGYSIS/RIBAVIRON...INSISTANTLY AROUND HERE...THE REALITIES OF WHAT COULD HAPPEN IF WE DON'T EVEN TRY THE TREATMENT,ARE DEVISTATING...
...AS WELL AS EARLY BIOPSIES,CONTINUAL BLOOD LEVELS FOR LIVER ENZYMES... ALT/AST/CANCER NUMBERS/TOXINS IN BLOOD,FOLLOW UP BIOPSIES AND C-SCANS, MAINTAINANCE TX AND ON GOING LIVER CARE...POSSIBLE MAINTAINANCE TX,AS WELL AS 2ND OPINIONS (DR.S DO MAKE MISAKES AND MISTAKES DO HAPPEN AT LABS)...WE MUST STAY ON TOP OF THESE THINGS...
I'D RATHER BE SAFE THAN SORRY...AND NO ONE KNOWS WHAT GROUP THEY WILL FALL INTO...THE PEOPLE WHO WILL SURVIVE OR THE ONES THAT WON'T...
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
TLT, i am amazed by this "new" biopsy too. i would get another one OR SOMETHING TO CONFERM that they did not screw up at the lab...also some areas of the liver show up differently on a biopsy than others...HISTOLOGY CAN BE DIFFERENT IN DIFFERENT AREAS OF THE LIVER, WHERE THE BIOPSY IS TAKEN FROM...
either way i wouldn't change the healthy eating and living.
but, all this said, i pray that your dad is the exception to the rule and that he really is healed... what are his alt/ast blood test results right now. that is an noninvasive way to detirmin if his liver is still dieing or not...
Hi,
Ok, 4 years ago my dad had a CAT Scan and biopsy. That was when he was diagnosed with cirrhosis. At that time the doctors told him his liver only had 3-5 years. I'm not sure why he didn't get on any hepc treatment at that time. He has been doing a lot of natural things like taking milk thistle and other things that supports liver function. Since January the end stage symptoms have come on quick and intense. He's changed his diet to manage the symptoms. Cut out the protien to keep his amonia level down to ease the encepathy, cut the sodium to help with the ascites, ect.... He had another liver biopsy just last week. This time it wasn't as detailed as the first one - it wasn't a CAT scan type. But when the doctor was putting it on the slide he said it was just falling apart. The doctor prescribed medication for the encepathy and told my dad he needed to be prepared to come down south to get on a liver transplant list because they don't have a program in Alaska for that. Then when the doctor called with the results from the biopsy he said that he didn't have cirrhosis and he was fine. He said to stop taking the medication for encepathy, and go back to a normal diet.
I really don't think it's that cut and dry. We've done a lot of research about this. That's how we found out about reducing the protien to help with the encepathy. His sypmtoms are really bad.
He lives on Prince of Whales island, the doctor that he just saw is in Anchorage. BeatHepC - what is the name of the doctor that your friend is being treated by?
Thanks again for the help.
Tanis
Ok, 4 years ago my dad had a CAT Scan and biopsy. That was when he was diagnosed with cirrhosis. At that time the doctors told him his liver only had 3-5 years. I'm not sure why he didn't get on any hepc treatment at that time. He has been doing a lot of natural things like taking milk thistle and other things that supports liver function. Since January the end stage symptoms have come on quick and intense. He's changed his diet to manage the symptoms. Cut out the protien to keep his amonia level down to ease the encepathy, cut the sodium to help with the ascites, ect.... He had another liver biopsy just last week. This time it wasn't as detailed as the first one - it wasn't a CAT scan type. But when the doctor was putting it on the slide he said it was just falling apart. The doctor prescribed medication for the encepathy and told my dad he needed to be prepared to come down south to get on a liver transplant list because they don't have a program in Alaska for that. Then when the doctor called with the results from the biopsy he said that he didn't have cirrhosis and he was fine. He said to stop taking the medication for encepathy, and go back to a normal diet.
I really don't think it's that cut and dry. We've done a lot of research about this. That's how we found out about reducing the protien to help with the encepathy. His sypmtoms are really bad.
He lives on Prince of Whales island, the doctor that he just saw is in Anchorage. BeatHepC - what is the name of the doctor that your friend is being treated by?
Thanks again for the help.
Tanis
dr.s don't really come to this forum. it is the patient to patient forum for support,for those with liver disease/hcv/hepatitis or families and friends of them...
perhaps you meant to post your question in the other part of med helps site... where for 15$ you can get some actual dr.s to answer your question.
either way you are so welcome here!!! i just hope you can find your husband the help he needs.
i will be thinking and praying for you...please let us know how he is doing.
perhaps you meant to post your question in the other part of med helps site... where for 15$ you can get some actual dr.s to answer your question.
either way you are so welcome here!!! i just hope you can find your husband the help he needs.
i will be thinking and praying for you...please let us know how he is doing.
Thank you for your kind response. I had hoped there was a doctor who could respond but with so many of you coping with these
problems, I probably will get the best advice from you. Prayers are always welcome and very much appreciated. God Bless.
problems, I probably will get the best advice from you. Prayers are always welcome and very much appreciated. God Bless.
Was he diagnosed with cirrhosis 4 years ago thru a biopsy? It is not clear how many biosies he had. If he did not have one 4 yrs ago, maybe the cirrhosis dx was flawed. A second opinion is good but the liver tissue is examined by a pathologist, and unless you can get that re read by another one, I don't see a change in damage determination. He needs to consider tx seriously as an option. Can he move to the mailand for that?
Six years after leaving Viet Nam (at the age of 26), my husband suffered renal failure due to malignant hypertension. He has been treated for these conditions for twenty years and recently had to be hospitalized with what we thought were end stage symptoms. It turned out his renal function was still about 25% and creatinine 2.5. The ascites, they told us, was caused by cirrhosis of the liver...something we never expected, and they also diagnosed congestive heart failure. My husband is not a drinker but was exposed to agent orange for the two years he worked in water systems in Viet Nam. I feel sure that is what has caused these problems as he has no family history and is the strongest man I've ever known. Hi is 57 now and I wondered if you hear from other Viet Nam veterans who are suffering from multiple organ failures? Also, when I asked what to expect, I was told that he has many problems and that they will address them as they present themselves. PLEASE tell me what this means. I know he is not your patient, but if he were, what would you expect to happen next? He has been home now for two months on Norvasc, Metroprolol, Amlodipine, Coumadin, Allupurinol, Furosimide and Lactulose. I can't sleep anymore wondering what kind of time we have left? Thank you for being here.
Your dad should be on treatment for hepc...interferon and ribaviron. that is the only known possible cure for the disease,and that will help the progression of the liver damage to at least slow as well. sounds like there was a mix up at a lab or something...i'm glad he's getting that 2nd opinion.
also i hope he has had a biopsy of the liver or two in order for the dr. to make these statements...cirrhosis or not, can only be determined for sure with a biopsy...
good eating and health is great but unless it's a bonified miricle it can not cure hepc. and i really doubt that eating well alone can revearse liver cirhosis... this is just not heard of...not to discourage you but, he really needs to go on standard treatment, if he can...
there is alot to the story that we don't know...it's hard to say without further info on how he was determined to have cirhosis to begin with...and why is he not on interferon/ribaviron for the virus...as to whether or not he's ever been biopsied...and how can the dr. now say he doesn't have it...
can you give us more info? it would be easier to give you some advise.
p.s we are not dr.s though...we are just fellow patients here...
let us know how he's doing and the details... i pray that he will get the help he needs...
also i hope he has had a biopsy of the liver or two in order for the dr. to make these statements...cirrhosis or not, can only be determined for sure with a biopsy...
good eating and health is great but unless it's a bonified miricle it can not cure hepc. and i really doubt that eating well alone can revearse liver cirhosis... this is just not heard of...not to discourage you but, he really needs to go on standard treatment, if he can...
there is alot to the story that we don't know...it's hard to say without further info on how he was determined to have cirhosis to begin with...and why is he not on interferon/ribaviron for the virus...as to whether or not he's ever been biopsied...and how can the dr. now say he doesn't have it...
can you give us more info? it would be easier to give you some advise.
p.s we are not dr.s though...we are just fellow patients here...
let us know how he's doing and the details... i pray that he will get the help he needs...
emmag that is so sad to hear about. i know that agent orange was devistating...i am praying for your dear husband...he is to be honored for his service to this country...i pray someone hear can give you the advice you desire...
also here is a cirhosis support group in case we don't have much info for you here...people are not arround here as much on the weekends. you may want to check your post or repost on Monday..
please let us know how he is doing...
http://www.expage.com/cirrhosis
also here is a cirhosis support group in case we don't have much info for you here...people are not arround here as much on the weekends. you may want to check your post or repost on Monday..
please let us know how he is doing...
http://www.expage.com/cirrhosis
Hi,
I'm sorry to post this question in this thread, but it also has to do with cirrhosis. My dad has hep C and about 4 years ago was also diagnosed with cirrohsis. Within the last 3 months he's had many many sypmtoms of end stage cirrohsis. (Ascites, encepathy, spider angenomas, dry heaving, weight loss, disrupted sleep patterns, the list goes on.) He's self treating most of these, he's changed his diet to a really low protien diet to help with the encepathy, he's cut his sodium and is on a diuretic for the ascites, there's many more med's he's on. So, he went to a hepatologist last week and had blood tests which all came back at good levels except his amonia level was really high, (even his viral load was ok - two years ago it was at 600,000 and now it's down to 100,000 without any medical treatment.) he had an upper endoscopy which showed some bacterial infections, so they put him on medications for those, the doctor also gave him medication to help with the encepathy, he had a liver biopsy - but now the doctor today is saying that he doesn't have cirrhosis. So, my question is - can this be possible - to have be diagnosed with it 4 years ago, have all these symptoms, but not have cirrhosis?
He's going to get a second opinion of course, but I'm just not sure how soon that will be. He lives on a remote island in Alaska so medical facilities are lacking.
Thanks in advance for any information you can give me.
I'm sorry to post this question in this thread, but it also has to do with cirrhosis. My dad has hep C and about 4 years ago was also diagnosed with cirrohsis. Within the last 3 months he's had many many sypmtoms of end stage cirrohsis. (Ascites, encepathy, spider angenomas, dry heaving, weight loss, disrupted sleep patterns, the list goes on.) He's self treating most of these, he's changed his diet to a really low protien diet to help with the encepathy, he's cut his sodium and is on a diuretic for the ascites, there's many more med's he's on. So, he went to a hepatologist last week and had blood tests which all came back at good levels except his amonia level was really high, (even his viral load was ok - two years ago it was at 600,000 and now it's down to 100,000 without any medical treatment.) he had an upper endoscopy which showed some bacterial infections, so they put him on medications for those, the doctor also gave him medication to help with the encepathy, he had a liver biopsy - but now the doctor today is saying that he doesn't have cirrhosis. So, my question is - can this be possible - to have be diagnosed with it 4 years ago, have all these symptoms, but not have cirrhosis?
He's going to get a second opinion of course, but I'm just not sure how soon that will be. He lives on a remote island in Alaska so medical facilities are lacking.
Thanks in advance for any information you can give me.
Sorry to hear about your husband cirrhosis. I also have stage 4 and was diagnosed with cirrhosis five years ago. I have not had any effects from this. I had a lot of energy before I started treatment two years ago and then it has been a little harder since then. I have done peginterferon and pegysas and will now continue with gamma interferon. I have had fatigue and can get easily irritated, so your husband should talk to your sons and explain that and ask for their help. I think you should continue to work as you need to continue your life as normally as possible and it will also take your mind off worrying about your husband.
It is good he is going on treatment as it may slow the progress of the cirrhosis down and he may clear the virus completely. He should get Hep A and B shots, an endoscopy to look for varices and an ultra sound to look for cancer every six months. His quality of life may continue for a very long time. Good luck and I wish him the best. This site will give you both a lot of information.
It is good he is going on treatment as it may slow the progress of the cirrhosis down and he may clear the virus completely. He should get Hep A and B shots, an endoscopy to look for varices and an ultra sound to look for cancer every six months. His quality of life may continue for a very long time. Good luck and I wish him the best. This site will give you both a lot of information.
Sorry about your husband being a stage 4, but he has company, me and MANY others. There is no way of knowing the future and I often wonder how long I can go on like this myself. So for me I take one day at a time. Currently I'm on a Peg/Zadaxin trial - main goal is to halt progression. As far at the sides -everyone is so very different. He will never know until he starts. He does need to do something so the sides are secondary. Don't be afraid, we all get thru it one way or another. He can be very lucky and have minimal sides. Glad he is starting on 4/1 - you will all get thru it and the very best of luck!!!
Hello, To my knowledge, I am not yet cirrhosed however I have begun a 2nd round of tx to keep from getting there. There is a site for cirrhosis support that has been posted here before. It is http://www.expage.com/cirrhosis. You may find this interesting. Good luck!!
There is no way of knowing how the sides will affect him until he actually starts. You can use the meds literature to get an overview of sides reported during trials. some sx might or not be tx related since at trials pts are to report any symptoms whether they think it is med related or not.
You can check this site for the posts of individuals on tx and the sides they are now experiencing, and you can come here when he actually starts to ask if any changes he is experiencing has been shared by others.
My PA stated some go thru no sx at all. I seem to recall that the level of liver damage can influence the sx and its severity.
Ask as many questions from his dr as you possibly can beforehand. There is a thread from this week (results of bx) that gives good advice on things to do before the start of tx.
best luck to you and your family
You can check this site for the posts of individuals on tx and the sides they are now experiencing, and you can come here when he actually starts to ask if any changes he is experiencing has been shared by others.
My PA stated some go thru no sx at all. I seem to recall that the level of liver damage can influence the sx and its severity.
Ask as many questions from his dr as you possibly can beforehand. There is a thread from this week (results of bx) that gives good advice on things to do before the start of tx.
best luck to you and your family
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