My brother, age 48 has been diagnosed with Advanced Liver Disease. He has complications as a result including escites, ensephalophathy, edema, cellulitis. He was admitted to the ER just after Christmas because of an infection/wounds on each leg from cellulis/edema. His billirubin was at 6. After a week he experienced almost total kidney failure with creatnine at 3.5. He spent a month in the hospital and kidneys made a dramatic recovery and is now in a physical rehab. Billirub is down to 2.2 and creatnine at .9. He was clearminded at his admission but has become very confused w/ ensephalopathy. He cleared for a few days but after a pericentises he has become more confused for a few days, then 3 days lucid, now confused again with poor short term memory. Also his acitis is more pronouned and he has lost 10 lbs in less than 2 weeks. I took him to a hepatologist yesterday who said that the weight loss might not be necessarily bad but maybe due to fluid loss as he is on diuretics. He indicated it may be several months before we see clarity, my brother should be considered a 'work in progress'.
My question is this. For patients with this type of advanced liver disease, do they tend to bounce back enough over time to live a normal life? Doctors have indicated he may not need a xplant but it would be several months before he would be considered to safely have it anyway. Thanks.
In view of the serious situation you describe,you need to be aware that respondents on this forum are patients not doctors and thus not really qualified to give you an answer.
You do not state whether or not the condition is Hepatitis C or confirm the prescence of cirrhosis.
The doctors replies seem vague-why not transplant?Doesn't need it or not a suitable case.
Were you strong and direct when you questioned the doctor? He should have given a prognosis.
As it may not be possible to switch doctors easily at this stage go back and say you don't feel informed.
Is he in a liver unit?
Is the doctor a specialist in hepatology?
Keep us informed!
For more patient-to-patient information and support there's the liver failure support group at Delphi:
Also, the folks at Janis might be helpful:
A good free doctor-run group is:
Also, if you go to the gastro forum here, I believe doctors are also available.
As far as you question as whether your brother will be able to bounce back and live a normal life, only a doctor who examines your brother can give you an exact answer. However, there are many folks here and elsewhere who have had advanced liver disease and bounced back. The advances in this field are growing every day. Please don't you or your brother give up hope.
If you get a chance, try and report back and let us know how things work out.
Forgot to ask what is your doctor's logic in extending? I consulted with three equally respected hepatologists. Two said 48 weeks max based on my RVR. My tx doctor said extend based on my age (59) and level of fibrosis. The two 48-week fellows were both Peg Intron guys so I decided to go both with my insecurity :) and my tx doc who treats with Pegasys, which some consider a weaker drug. (Folks, this is informational only, no dog in the Peg Intron vs Pegasys fight, at least for today :) )
that is 4 combo geno 1a/b; Susan, nygirl, hca and vicki. Psychdoc cleared a while back. good luck guys!
My friend Ina is going through a rough time post tx. She has severe liver pain that has her almost in tears. She describes the pain as radiating to the shoulder blades and sort of like a stabbing in one spot of the liver area, and it("knife") is twisting in place. She sounds at the end of her tolerance. The headaches are eased by Florinol(?) but it does not ease the liver pain. She got a negative PCR, she was on half peg and no Riba at that drawing, so her fear of relapse has eased. She can't believe how bad she is feeling with all these pains coming her way. I believe she is off all meds for about 2-3 wks and the pains started when she was at half peg.
Can anyone relate to this terrible liver pain, POST TX?
Ina, (((cyberhugs))) your way!
Some of the answers are in my post above to nygirl.
Using Roche peg.Low dose RIBA 800mg because of anemia.Went down to 7.6 in spite of double dose epo.Now around 8.5-it's very tough.
Don't want to extend because low RIBA limits chances-but some evidence that severe anemia indicates good build up of RIBA serum with associated kinetic benefit.
I will decide on monday when I have consultation.
Any thoughts you have would be appreciated.
p.s weight 200lb height 6'1''
I typed something to you and don't know where it went. I did not want to type again, but since I recovered from the lost post...I don't know if my reasons for extending will help you decide, but I will share them anyway.
I also was detected at wk 12, cleared by 24, lowered riba from month 2 to 6 at 800mg. I went for 72 wks, chose the number because I was taken aback that my dr was finally conceding extension and was the first number that came to mind. It was a mix of relief and disgust to know I had 6 more months of pain to go. Since I now know that it worked, I am happy that I did. I could have cleared with 48 wks, but fear had a strong grip, and I did not want to do tx again. Longer sounded better than re treatment.
You have time to decide. good luck on that choice.
Our pre-tx stats are similar, with age, geno, pre-tx viral load, stage, etc, plus with both treating with Pegasys.
As I mentioned, two docs told me 48 weeks based on being non-detec at six weeks and one suggested 58 weeks -- his version of the Drusano rule factoring in my age and level of fibrosis being to add 52 weeks past the point of being non-detectible.
So, if you followed this doctor's formula, you would extend to 72-76 weeks (24+52) and if you followed the Drusano model, you'd extend to 60 weeks. Not sure what the two other doctors would have recommended but in my conversations with them, they both indicated that they tailored tx to when the patient is non-detec, so I imagine they would have you extend as well. Of course, you have somewhat of a unique situation given your weight and low riba dose.
Regarding the riba, you mentioned your low dose as a reason not to extend because you don't see your chances as great? Am I reading this right?
If so, I see your point, but one could also make the opposite point, I suppose. That said, yes, some evidence indeed does exist that severe anemia correlates with higher serum riba levels, in fact our Sweedish study ladies wrote a paper or two on that. Unfortunatly, the only real way to tell is by HPLC (high performance liquid chromatography) which is a blood test not available in this country.
Still, reason to believe that the riba is being absorbed well into your system and since you have remained non-detec, given age and level of fibrosis, I'd talk to my doctor about extending, depending on how you're handling things.
On riba dosing again, Some crude formulas for dosing do exist based on kidney function if you search around -- again in Sweeden. Here, everything is 'weight-based" but the Swedes have made a convincicng case to *me* that kidney function is a better indicator of correct riba dosing.
Hope the ramble makes sense but this is the best I can do at 50 weeks. LOL.
I have end-stage liver disease. My encephalopathy (which is always 100% reversible if caught early) and ascites are controlled by my medications. My situation though is not as complex as your brother's.The answers to your question(s)
can be many and varied. Only a doctor with his records in hand can give a prognosis.
Thanks Kalio1 for your response. My father in law doesn't drink at all. He got the HEP C from blood transfusion. His doc actually is considering having the HEP C treated through interferon and pegasys. But I really am not sure if he is fit to undergo the treatment. Actually his encepalopathy attacks almost every 4 months. He is totally blank and his reflexes are down.
hi my daughter was in hospital 4 months and they gave us not much hope they told us several times to expect the worse she had advanced liver disease kidney failure liver failure oesophagel varises which led to massive internal bleeding which on the third case led her to loose 3 litres of blood be ventalated and sent to a specialist hospital where she spent 2 weeks in intensive care with coma and pnemonia.today 11 months later she is apicture of health it has taking a long time and a lot of patience but looka abundle of health so yes with love hope and prayer miricles do happen i hope this message will help
Very strange Ina,,,,not sure how this got opened again and Vic,,,thats not me! haha you pretty much know my life story and believe me,,,,if my daughter was in a coma,,,,You would know! But who is Honey123????
Ya'll... That was freaky..Put me in the twighlight zone for a few, LoL!!!!! Whew!
Yea, I don't know how it revanmped either... "Used to" you could do that, but now threads expire & close out, & even if you can find one to post on & it happens to actually post... it doesn't make it reappear, & you get an error message when you try... Dooo, Dooo, Dooo Dooo!!!!
I hate it when there is somebody with a similar name, but don't know what to do about it.
What is bugging me is this thread reappearing...that dude, he gets my dander up...but what am I saying, lost all my dander during tx, there is nothing to stand up.
Ocala gal.......... Hi everybody. So good to know about this support. I start treatment in Jan. No insurance. Found an all volunteer clinic in St Pete FL. Wonderful people. Eager to get started. Any suggestions on what to do to get ready. I'm trying to build up my immune system with vitamins, exercise and lots of
Hey, welcome to the board. I live in Ocala, also. You find lots of help and support on this board, so keep hanging around. Are you using a gastroenterologist or a hepatologist? Most folks recommend going to a hepatologigst. Do you know what genotype, stage/grade, or any other info on your case? When you find it out, please share with us.
Maybe someday we can do a face-to-face. I just had the joy of meeting another on this board, as she passed through town.
Anyway, you've found the right spot. Please keep coming back, no questions are dumb.
geezzz... been awhile since I checked in... you may not see this by now...LoL
Post TX am doing fine...memory is improving all the time, but still not functioning like I used to could have, and boy oh howdy, I had no Idea that it would take this long to get over the atrophy... I have been doing some project that require physical labor, & I discovered muscles I didn't know I had... (Much less the ones I had forgotten about)... Ha! Still having Major insomnia... which makes seems to have more of a cat napping sleep pattern.. been up since 4 this morning, but didn't even go to bed till 1.... so now I want another nap... I'll sleep a few hours & then I'll be refreshed & up & running again, & so On & so fourth!
Hair is growing, but the texture has changed... It's coming back much finer!
Didn't expect to find activity down this far down on the board, but now that I've stumbled upon your post, I do want to warn you about taking 5-HTP. If you Google "5-HTP and Liver" you'll find that it's not recommended for people with liver problems.
That's great, I like to hear success stories. So sleeping seems to be the biggest problem...same here, cat napping etc.
I am going today to pick up some 5 HTP in the vitamin store. For sleeping I start with a higher dose, 100 mg. Google it, I am sure you will at least give it a try. Also good for depression, so they say.
I guess the weather on the cost is not to your liking. All winter long drizzle, drizzle.
I am having an excisionel breast biopsy next week, and I thought about you.
I wish you all the happiness in the world.
Ina, it's 5:30 AM, got to go to sleep.
Thanks, I will look into that.
Haven't opened the bottle yet, had planned to, but now I guess I need to do some more reading.
I have such a difficult time with AD's, they give me cramps, all of them. I read somewere that there are serotonin receptors in the intestine, and that the serotonin gets displaced while taking AD's...something like that.
And what do I read on my bottle from "Natures Way"...may give cramps, nausea, diarrhea.
Just don't know what to do.
Ina, I was actually following someone elses conversation about that 5HTP recently, before that I had never even heard of it... but I am glads that Jazz wrote that as that was one of my first concerns too (the liver friendly)
I'm back in Ga... been here since mid-october (family issues to contend with) but hoping to be back in Washington soon... possibly as early as next week...
I heard it was already raining there... in fact Rob said it was almost like a Ga rain there today, which is suppossedly unheard of for ya'll except about every 100 years or soo...LoL... guess that means ya'll are getting a Frog Strangler About Now!
I have heard of your drizzle rainy season though & was actually kind of looking forward to trying it out... but I would almost bet it's that cold, wet, bone chillin kind of winter, & I don't know If I'll like that at all... I mean in Alaska, it doesn't seem that cold... I have ran outside in shorts & a bathrob when it was 15 below & didn't feel that cold!!!
I sure am sorry to hear about this biopsy... & praying the results will come back good... sure seems like there are a bunch of previous/current mh folks that are getting cancer scares lately... which really concerns me, it really makes me want to stop smoking, I mean it would be stupid to go thru all this **** thus far, just to turn around & kill myself smoking... it's to the point that my guilty sub-concious bothers me so bad, that I really don't enjoy the dang things anymore anyways... Ugg... best of luck on this biopsy, I'll be with you in spirit & please let me know the results when you get them!
Thanks for the Happiness wish... I'm striving for it, I think If I could achieve the stopping smoking, & get my grandsons situation resolved, I'd be on top of the world.... but I am determined, so I'll get there eventually...LoL...
Take Care Ina, I think about you all the time, & miss you much!
To be truthful, I learned about 5 HTP just recently too, here on the board. I talked it over with 2 of our resident health nuts, and they seemed to think it was OK, as a matter of fact, one started taking it herself.
Will do some more research after the biopsy.
You know it does not ususally rain much on my side of the state. Most of the rain clouds can't pass over the Cascades, so we are often starving for water.
Right now though we have a miserable storm, and the whole state is affected. Many parts around Seattle are under water, saw that on TV today.
Did you have a lump in your breast, or was it an area?
Mine is an area, so we are doing the wire localization, and than an open biopsy.
We never talked about your cancer, I found that out from cuteus.
I just finished reading Dr. Susan Loves breast book. Lots of invaluable suggestions, plus guidance how to interprit ones own biopsy.
Stay well dear Vicky,
Sounds good to me. Let me know when and I'll be happy to meet up with you. It was nice to meet Susan400 a couple of weeks ago. We sat and talked and talked for a couple of hours. So nice to do a face-to-face instead of waiting for a response on MH. Get back to me, my "regular" email is: pasoperson AT aol DOT com
hey guys - i'm looking for you two... frank, i got a chance to speak with chevy, and would like to contact you too. sounds like both of you went thru the post tx depression i'm experiencing.... i miss you guys, i miss laughing... hope to talk to you soon...chelley
You are not checking in too often. What keeps you busy these days?
If you don't mind, what type of breast cancer did you have, and do you get proper follow up?
No sense in beating HEPc, and neglecting other important issues.
I am so busy reading the board with all that action going on, I am ready for a big long rest...should have said :the big sleep, lol
Ina... WoW, Almost missed you post, I am so scattered trying to settle in with my Grandson that I am doing a lot of that everywhere lately... BTW My Lumps were benign (but left me deformed after the biopsy) it was the area that got me!
Awe Chelle, you'll really like Franks voice... he's so soft spoken.. I miss laughin too :( I gotta tell ya that post TX depression stuff can be a real pisser, I think it's pretty normal for everyone to suffer from it to some degree!
Frank, I truly have valued our friendship, & I just want you to know how much I appreciate, love & miss you... your absence leaves a big ol empty void in my heart, Now I really wish you hadn't been asleep last week when I called... :(
LoL... I can't keep up with these lower threads... they keep changing I swear... It's like one day it's here.. the next it's gone... That or I or it got lost when the 2003, 2004 ones re-appeared...!!!
IBC... (rare, but caught extremely early due to known issues) had Radio, Surgery, then Chemo... with a short course of follow up drugs.... (would have been more happier with the 5 year course) I go for another follow up anniversary appointment in Dec. I just recently ordered the book you mentioned... can't wait to get it!
What keeps me busy issssss....I have a new travel buddy & that's why I have been pre-occupied... LoL...he's my 10 mo old grandson that I recently got temporary guardianship of... I tell ya, I had forgotten what all this job entales!!! At least it's rewarding, & mostly FUN work!!! Ha!
my mothers spleen was enlarged and her blood count kept being low. she kept going to the doctor and was even admitted for testing. untill she flew to my sisters house in washington and she started throwing up blood . did we find out what it was. she flew back home and i took her to a liver specialist and then after about 2 years of symtoms was she finally diagnosed with liver failure. chirosis of the liver. did i spell that right? anyway the doctor said she needed a transplant yesterday. and gave her six months to live. i went back to her regular doctor and he wasnt friendly at all. he said do you think that they will find a liver in six months time? he said. i explained to him in my own way not to talk to patients that way and that he wasnt god and he was just like anybody else. some doctors feel like they can say anything they want and get away with it. and even if it is their fault. my mother didnt end up gettting her liver in time. and she used to beg me everyday not to let her die. there was nothing i could do but comfort her and give her more pain meds as she needed them. i used to watch my mother sit and throw up blood by the pints. i will have to live with it untill the day i die. my point being is. dont stop at one doctor when something is going on. two you dont have to take their smart mouths. they bleed just like me and you. three. try and take care of youre liver. my mother never drank and day in her life or did she do drugs. it was her diabities that killed her liver and large tylenol intakes. at a dose. watch taking to much tylenol. and try and take care of youre diabities. i see diabetics. who are not willing to take the insulin shots. and sit and die. my brother in law is right now. i am not a trained medical exspert and im not telling anybody anything about their medical conditions. it is a opinion. and like rectums everybody has one. this was mine. thank you and god bless.
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