1a level 4 Cirrhosis questions

[nolee]

I'm going in for a Q&A session next week with GI. Very new to this program. Haven't started any tx as yet.What might the most important questions be for me to ask? I know my vl 500,000 and I kinda understand that, thanks to many of these posts (and my PCP)I am knowledgable as to the many different sx, but the cirrhosis level 4 caught me by surprise. Can this factor keep me out of tx? I WANT to kill the beast within but I'm still basically ignorant to the requirements to be put on tx. I am not seeking medical advice, just facts. Any input would be appreciated. Thanks to all! ~Neal~

[33/07]

i was diagnosed with mild fatty liver disease and most of my labs ae within normal limits. I havre most of the symptoms of someone that has severe liver disease. for years now I ignored them. i want to know how sure is a diagnosis from an ultrasound or even a cat scan for cirrhosis does anyone know. my doctors are not very helpful. it is difficult to get in to see the gi.

[cuteus]

In case you missed this where it was posted up in the threads: from
catherine194
(16-May-04) . I AM POSTING THIS AGAIN IN CAPITAL LETTERS! It is your legal, ethical, and moral right to have pain control. You can report these doctors to the state medical board of examiners. The board has cracked dowwn on docs who do not aggressively treat pain such as sending your Mom to a pain clinic with a pain management doctor. Tell him he works for you and he is not God. This infuriates me to read this. No one needs to suffer in this day and age. There is drugs like Neurotin and Elivil that are non-narcotic that can be used in supplement to a narcotic. They can put her on Fentanyl patches, MS Contin (time released morphine), oxycontin(time relased oxycodone), dilaudid, ultram, and a mild anti-anxiety med. The side effect is respiratory depression, sleepiness, confusioin, and getting days and nights mixed up but the desired outcome is make someone comfortable as possible. I know you want your Mom to live but has the docs talked about Hospice. You can still get a liver even if she is not in remission. There is no cure for Hep C unfortunately but it can be controlled as you have read here. Print this out and take it to her docs and anything else you can find to back this up. I might not be a practicing nurse but I AM a nurse and thus I will advocate for patients until the day I die. God bless you sweetheart for being such a dear and devoted daughter. Prayers.

[Showboat]

Try posting your question in another thread that is closer to today's date....(or closer to the top of the page)...Since this original thread was in February, some people many not see it, as we sometimes do not go down this far to read.....someone will see it up there....Good luck

[SisterM]

Hi All, I would like to say how brave you are.
I need your help please. I'm 20 years old and my mother has had Hepatitis C for over 15 years,she was on Interferon Treatment,that didnt work &now she is on Pegysys.She also has Liver Chirrosis (do not know what stage at)&suffers from severe pains,coughing blood from mouth&nose,water retention &inflammation of Liver.The docs are not paying attention 2this.I am going 2try Milk Thistle,Manuka Honey &Dandy lion Tea. Could someone please advise me what I should do? I am very stressed &docs dont seem to be helping. Please email me or respond to this as I don't know what to do. Time is of essence. they say she can't have a transplant yet as she still has Hepatitis/

Thanks

[SisterM]

Hi All, I would like to say how brave you are.
I need your help please. I'm 20 years old and my mother has had Hepatitis C for over 15 years,she was on Interferon Treatment,that didnt work &now she is on Pegysys.She also has Liver Chirrosis (do not know what stage at)&suffers from severe pains,coughing blood from mouth&nose,water retention &inflammation of Liver.The docs are not paying attention 2this.I am going 2try Milk Thistle,Manuka Honey &Dandy lion Tea. Could someone please advise me what I should do? I am very stressed &docs dont seem to be helping. Please email me or respond to this as I don't know what to do. Time is of essence. they say she can't have a transplant yet as she still has Hepatitis/

Thanks

[DownThisRoad]

Neil, exactly what Indiana and everyone else is telling you.  You can't get any BETTER advise about this from anyone, anywhere.  We are real people, treating this very real disease, fighting with all our might.

The most important thing that I read throughout this post/comments is you need to NOT put off your treatment.  Get started and hit this thing full force and hit it with the utmost desired power that you can find within yourself.


There have been huge success stories with this present hepC treatment meds for others who started out just exactly as you are.

You can do this!!  I am praying for you, we all are.

[madbyron]

Neal,

I admire your attitude greatly. That will be your most important ally in coping with the disease and during treatment. Not to give medical advice, there are a couple things you may want to discuss with your GI.

There is evidence that high iron concentrations are associated with lower treatment success rates and increased liver damage. See <a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12014729&dopt=Abstract">Fargon et al.</a>, <a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=14685669&dopt=Abstract">Erhardt et al.</a>, and <a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=14571765&dopt=Abstract">Carlo et al.</a> for starters. You may want to ask whether iron depletion by phlebotomy might be recommended for you.

Secondly, it's a good idea to understand the side effects that may accompany treatment and the current trends in managing them. Projects in Knowledge has recently produced this <a href="http://www.projectsinknowledge.com/init/G/1628/1628-Handbook.pdf">Side Effects Management Handbook</a> to assist doctors and clinicians in keeping their patients on treatment at optimal dosages and improving their quality of life. Some doctors prefer interferon and/or ribavirin dose reduction to the addition of secondary medications, but for type 1s with cirrhosis, staying at full dosages is important. I wish you the best of luck.

[itsnotover]

I am stage 4 cirrhosis and am currently on the Pegasys/Zadaxin trial. My hepatologist really recommended daily shots of infergen/riba, chose this route for now. Some have been known to clear with cirrhosis and even go back a stage or two, per my doctor. The way it was explained to me is that you don't get rid of the cirrhosis but you can lead a full life.  Thursday I met a woman who had TWO liver and one kidney transplant.  Couple of weeks ago I met a woman in her early 70's who just had a liver transplant eight days before. They both have made it and it was soooo encouraging to me.

So the important thing is to get on tx and remember this is not the end.  We all must keep fighting and never give up.

[reposyco]

http://www.hepatitisdoctor.com/Why%20treat%20cirrhosis.html HERE IS A ARTICLE FROM A WEBSITE ABOUT TREATING CIRROSIS I THOUGH YOU MIGHT LIKE TO SEE....GOOD LUCK....DELORES

[new-sojourn]

I'm ESLD-end stage liver disease, didn't have a clue I was sick until' i upped and dies one nite.'  Well, I made it back, floatin' around the ceilin' ain't no fun!

Anyway, I bled out 9-12-01, started tx May 2002 and cl'ed 18 DAYS later.  My sx's were managable, I was on peg-intron 3xwk and 5 pills aday for 24wks, ending in Oct 2002.  Now, 2004, I'm still here, still CURED of hep c and still considered ESLD.

So, anything up to and including death-short term-should not prevent you from doing tx and being successful.

[Indiana]

Well....at least your load is low. That is a GOOD thing.
Since you are at Chirrosis levels tx should not be just an "option" for you.....it's almost a "requirement". Your time to putter and worry about actually doing tx is really over now. It's time to ACT. You will start to feel symptoms soon as this disease progresses. Those are NOT fun. You really need to get going on trying to kill The Dragon......NOW.
First off....Don't let them put you off. You need to get on the meds as soon as you can. Set up your life for this and get prepared.
You need to get and maintain copies of ALL your blood tests and biopsy for the file that you will keep at home. Make SURE he has no problem with that.
You need to know your Genotype and what type of meds he recommends for you. If given the option, you should choose the Pegasys and not the Peg/Intron. The sides are MUCH more tolerable.
Ask about what kind of support they offer after hours and on weekends if you have a real problem that needs attention then.
Ask how they feel about Neupogen and Procrit for the anemia problems that CAN come with these meds. Those meds can help to keep you on "full doses" or the meds while fighting the anemia.
Ask when they will schedule your PCR tests. Do they do one at 12 weeks?....24 weeks?...and if you are a type 1, 48 weeks and then 3 months post tx? All these are good indicators of how you are doing.
Ask about what you can take for pain and possible itching sides. Do they recommend just Tylenol or Ibuprofin or other OTC(over the counter) meds, or will they give you more support with prescription meds?
Ask about recommendations for vitamins and such and how they feel about that stuff.
aske about arranging your "shot day" to fit YOUR best schedule and if that can be set up right in the beginning. Most of us like to do it on the weekends because of our work schedules but it's a bit of work to move it around after you start.
And last....ask for their HOME phone numbers so that when "everything" seems to be failing and the Riba has you going "nuts", you can call them at 3 AM and ***** about it all!!
Hey...it's worth a try.
Thats all I can think of for now. Others will add what I may have missed.
I wish you well as you get started down this road. We will all be here to support you.

[OkieJim]

Hey,
I just finished TX yesterday. I'm at stage 4. The question to ask is what level of chirrosis are you at it has 4 levels I believe. I made it and will not do another BX for another year and a half to see if I have any further progression. Because of the chirrosis I chose to do the TX. It was hard but worth it.

[nolee]

Presently I'm not having any serious symptoms. All I have is bx and lab results. I've been researching grading cirrhosis and can only find out that the only thing worse than stage 4 is end-stage so I at least have that(stage 4) working for me. I was just hoping someone in this forum had similiar diag. and had some insite as to what specific questions I might want to address with my GI. The best I can recall is that I had 15-20 units of blood in 1974 during surgery after a car wreck. Most likely when I contracted the virus. Now my 30 years are up and my liver functions are through the roof, overloaded with iron and the 1a w/stage 4 cirrhosis present now for 3 months. I had to change docs. in the middle of the stream so this prelim. stuff seems to be dragging on and the stress of the unknown is beginning to take its' toll (plus my job is to handle disgruntled customers which has its' own level of stress). But as any good Texan would do, I'm gonna ride-'em and rope-'em until I'm bucked off. ~Neal~

[honey1616]

Neal...I'm not an expert on cirrohosis, but I do know that there is some people at this forum with it that are going through tx right now.  I think one of the main things I would ask my dr...would be..is it possible if taking tx and maintaining healthy lifestyle to reverse it so you can continue to lead a healthy lifestyle.  Are you sick at the moment from cirrohosis?