end stage of hept c

i want to know what the end signs of hept c is. My insurance costs me 800 a month, i'm going to have to let it go so i need to know when i get really sick will i need to go to a hospital or have any medical help. I have had hept for over 20 years and my liver hurts all the time so i think i'm getting close to starting my end stage hept. Does anyone have any info to help me? thank you

[liv4GOD]

I THINK I HAVE SOME INFO. FOR YOU. ROCHE PHARA. HAS A PATIENT ASST. PROGRAM THAT I WAS ON AT NO CHARGE TO ME. THE # IS 1-800-526-6367. THIS IS FOR PEGASYS, THE SIDES NOT BAD ALL REALLY.I HATE TO SAY THIS WORD BUT REBATOL IS AVALIBLE THRU SCHRING-PLOUGH PHARA.THE # IS 1-800-656-9485. PLEASE GIVE THESE #'S A CALL THEY ARE VERY NICE AND HELP-FUL.   GOD BLESS  LIV4GOD        PS ANY HELP GET BACK WITH US

[St. Georgie-Girl]

If you are of another faith, or an athesist or agnostic - please don't be offended by what I'm about to say here, although for what ever it's worth to you, you are included. . .  I don't want to anger anyone or break any of the rules of this great forum, but I am  greatly moved to say this.  If after this is said, should any of you want me to never post here again I will understand, but here goes:

Heavenly Father -

You know the many needs of my friends here and myself.  I ask you to look upon us tonight with Your great love and compassion.  Heal our sick bodies and hearts and minds, Father.  For those in pain, please send Your comfort.  For those in turmoil, please send Your peace.  Give us strength, oh Lord, for the battles we face, and hold us close as we go through this dark place.  Our needs are many, but Your power and grace are great, and I ask you now to bless us all.

Amen    

[ral]

Sweet

Bob

[yucatanchic]

Thank you!

[Southernboy]

Hi,

Agnostic, athesist or whatever, I don't think anybody would be offended by the positive thoughts you have sent us all.  I know I am not and would like to thank you.

Steve

[Showboat]

Thanks, I really needed that exactly at this moment.  I did my 33/48 shot last evening, and in my case, I am having a very ROUGH time for the last two weeks.  Any SVRs or "oldies" know if at mid-point the sx get crazy again?  Mine seem to have gotten more intense, and I am soooooooooo tired of being tired.  I know that we all have different sx, but I just need to "cry".  Thanks for listening.  Peace

[jonihs]

This ones for you guys.  'm at a real cross-road what to say.   Thanks  Joni

[BD146]

THANK YOU SO MUCH FOR SUCH A TOUCHING PRAYER....IT HAS TOUCHED MY HEART LIKE YOU WOULD NEVER KNOW....EDGAR

[Showboat]

Thanks, I really needed that exactly at this moment.  I did my 33/48 shot last evening, and in my case, I am having a very ROUGH time for the last two weeks.  Any SVRs or "oldies" know if at mid-point the sx get crazy again?  Mine seem to have gotten more intense, and I am soooooooooo tired of being tired.  I know that we all have different sx, but I just need to "cry".  Thanks for listening.  Peace

[Showboat]

Sorry for the double post.....I am going to bed...Goodnight all. I just have no energy.

[cindee]

Hi, and God Bless You. I thought that was a wonderful prayer and we all need GOD and PRAYERS. I go to bed praying for all of my Hep C family and for many others. When times were really tough and that old Devil would put bad thoughts in my head, I would take out my Bible and open it and read! I am a Christian and there are many Christians in here. Without God and the wonderful people like you in this forum, I would have thrown in the towel! But I didn't. Never give up hope and always have faith. Like Jesus said, by my stripes you are healed. There were many times when I was on tx. that I would fall to my knees and weep before the Lord. You will be blessed for the prayer you prayed for us. Thank-You and Much Love, Cindee

Showboat, YOU HANG IN THERE! I didn't want to take my last wk of pills, I felt so bad.....but I didn't give up!!!! Hope you rest well and special prayers for you tonite!!!! Love ya, Cindee

[eyehavegr8life]

Thank you, we can never have too much "positive energy" sent our way. My prayers are for all of us!, Annette

[eyehavegr8life]

Hi Joni, I'm not sure what you're post meant, but I got concerned? Are you alright? You helped me so much during my first posting here in Dec :0) I hope it was from another thread? Positive thoughts your way, Annette

[scruffy]

I,m missing something here. Are you unable to treat the hep?

[jonihs]

I was concerned w/ the lady in the first post. Doesn't sound like ESLD, but who am I to know? thanks for being concerned though.  Love Joni

[eyehavegr8life]

whew, glad you're ok!  Annette

[ral]

Dear zzeld

Stick around and you wiil get some help. Check thru the old posts and search engines on this site and you will get the help you need.


There is hope

Bless

Bob

[scruffy]

Have you been to the doctor and tested positive for hcv? And if you do need treatment the insurance could be very important.

[Revenire]

The 30s and early 40s of tx were hardest for me. Once I got to about week 45 it was "light at the end of the tunnel" time and a breeze. I was still feeling tired and beat up but I knew that I would be done with the riba and full peg soon (I'm doing a half dose of peg for a while after doing 50 weeks of the full deal).

Hang in there -- you're near the end.

[tina b]

AMEN

[berlynn]

Showboat,...I am sorry to hear how you are feeling but definately can relate. I also have been extremely tired and my sides have increased over the last month. I wonder if it is the build-up of meds in our systems. I have alot of muscle and joint pain lately as well, mostly in my right elbow. I haven't visited the forum for a few days again.....as this was a hard week for me. I started having pains in my left side and back ....very painful..for 3 days straight so on Mon....I went to my DO cause I was afraid that I might have a kidney infection. Although there was blood in my urine...there was no sign of infection. As the doc examined me, she pushed down on a few very painful areas in my abdomen. She had me go do a CT scan on Teusday to see if I might have kidney stones...yuck!!!!!! I still haven't gotten the results yet.

Hang in there honey....we only have 15 more weeks to go then we can keep track of our PCR's together and do a dance on that ole dragons grave :) I know that you are taking care of your mom right now.... and with everything you are going through with TX.....you must be "Wonder Woman"...Your Mom is very lucky to have you and your hubby. Please though, try to make sure you take time for "you" and if your body needs rest right now.....then rest. I have found that if I don't make an effort to listen to my body and rest when it's needed....I can't be there for my family at all. That's when I end up...barely getting out of bed for 1 or 2 days straight. I know it's hard....but try to be positive.... I have found that the meds mess with my head much more now. I will make sure that I take the time to check in and see how you are doing. I'm sorry that I haven't been very available lately. We are in this together and WE CAN DO THIS!!!!!
Ask Indiana to send you the "kitty" clip...it is hilarious and will cheer you up. Take care, we can get through this :}berlynn

Zzeldacat...have you had a Biopsy? If not...I would definately reccomend it...then you will know for sure...the shape of your liver...Ther are some posts from back in December that can give you info on how to get help with your meds.Good luck, berlynn

[itsnotover]

Hi ZZeldcat ... Try http://www.lifelinkfound.org - don't know where you are in FL - this organization is in S.Fla/West Coast/Tampa however they do cover different counties. They have helped many to get transplants and are a good source of information and caring guidance. Also contact the American Liver Foundation.  Hope this helps, good luck.

[zzeldacat]

thank you for your prayers and concerns. I have been on inter feron for 8 months and it didn't work for me. the newer drugs won't work because i have the wrong type of hept.c. I'm a christian and i know where i'm going when i die. A liver transplant is very costly and we are on cobra ins. that will end soon as well as being costly. I'm 57 and now have other related problems caused by the hept.i had a blood trans fusion 36 years ago so no when is really sure how long i have had it. I'm tired alot, feel sick alot and now suffering from mild confusion. These are signs of end stage i have seen plenty of doctors and they say i should get ready for a transplant, but i feel that a younger person should get it with so much more life ahead of them.I'm only trying to be realestic about whats ahead so i can plan on what to do. My husband travels alot trying to make a living and at 53 with alot of experience he can't find a job. They want younger people. So hes trying everthing he can to start a new business and its eating up whats left of our savings.my family lives in mi and can not afford to help or come and see me thru this. so i need to know what am i facing when i start the end stage process. dr. won't tell you can any of you tell me

[liv4GOD]

FIRST BEFORE WE GET STARTED LETS THANK GOD FOR WHAT HE HAS DONE IN LIFE.AND WHAT HE IS GOING TO DO. THERE IS SOME KIND OF HOSPITAL IN YOUR AREA THAT IS STATE OPERATED. I LIVE IN TEXAS AN I GO TO HARRIS COUNTY HOSTITAL DISTRICT. AFTER 2 YEARS THE STATE WILL PICK UP THE FUNDING FOR THE TRANSPLANT. THEY ARE GETTING ME READY AS WE SPEAK,SO CHECK THIS OPTION OUT.   GOD BLESS YOU,       LIV4GOD

[mikesimon]

I have found that doctors are generally reluctant to paint a picture of end stage liver disease. The truth is it is not a pretty sight. I can appreciate your belief system and your acceptance of death, if that's what it comes to. My feeling is that it's not death that frightens me so much as it is the manner of death. And death from esld can be a difficult process for you and for the people around you. The idea of transplantation is not an easy notion to entertain and many people reject it from the start. I did when it was first suggested to me as the only probable solution. I was transplanted in June of 2000 (I was 50 years of age) and though it hasn't been a cake walk I believe my result is far better than it would have been had I not chosen this route. My advice to you is to not reject this approach out of hand. Your age would not preclude transplantation and though your view that a liver should go to one younger than you is admirable I'm not convinced that it is well thought out. Sometimes we should get in line and see what develops and if something would become available you could make a decision at that time. And in the meantime you would be monitored closely and have the best advice on medications and procedures available. That's just my opinion and I'm probably biased having undergone transplantation.

Symptoms of ESLD:

Yellow discoloration of the skin and eyes called jaundice

Itching from the build up of bile salts in the skin

Loss of muscle and strength in your arms and legs

Tea-colored urine

Gray or clay-colored stools

Mental confusion, sleep disturbance or coma

Abnormal accumulation of fluid in the abdomen (ascites)

Tendency to bleed and bruise easily

Vomiting blood or passing stools that are bloody or tar-black

Abdominal pain or fullness

Loss of energy

As I said it is not a pretty sight. The fluid accumulation can be severe necessitating periodic draining of the abdominal cavity. The bleeding can be life threatening and necessitate esophageal endoscopy on an ongoing basis or shunts to bypass blood away from the liver. This shunting procedure can exacerbate the mental confusion as the bypassed blood is not being filtered by the liver. The fatigue can be quite debilitating. The itching may be one of the most difficult symptoms to tolerate as it can become very intense. This is commonly cited as one of the most troublesome symptoms by patients pre transplant. The thing to realize is that you just don't up and die usually. There is a prolonged period of time during which you will suffer and in all likelihood require frequent medical intervention. So you will probably face hospitalization on more than one occasion. I apologize if I am depressing you but I feel you want to know what may be in store for you. My advice to you is to follow your doctor's recommendation and avail yourself of whatever services and procedures are offered. I wish you the best. Mike

[zzeldacat]

You did not depress me at all. i wondered why i had to have an esophageal endoscopy. At this time he saw no broken blood vessels. What did they tell you about the liver getting the virus back? Do you now have a normal life expency? Why would i need hospital stays? In fl. they have a medical crisses. Doctors are leaving the state and we have so many sick seniors here. I do have 6 of the sympoms that you mentioned. My dr. told me that there is no other option other then transplant and Fl. does not have free clinics.Getting goverment help takes apx 3 years and most die before then. Gov. Bush has made this statement they delay as long as possible. I was hopeing to just die quickly as i agree its the way we have to die and how much suffering i'll be facing. I guess there is no easy answers. I appricate you taking the time to respond to me its good to know someone else who's been thru all of this. sharon

[zzeldacat]

You did not depress me at all. i wondered why i had to have an esophageal endoscopy. At this time he saw no broken blood vessels. What did they tell you about the liver getting the virus back? Do you now have a normal life expency? Why would i need hospital stays? In fl. they have a medical crisses. Doctors are leaving the state and we have so many sick seniors here. I do have 6 of the sympoms that you mentioned. My dr. told me that there is no other option other then transplant and Fl. does not have free clinics.Getting goverment help takes apx 3 years and most die before then. Gov. Bush has made this statement they delay as long as possible. I was hopeing to just die quickly as i agree its the way we have to die and how much suffering i'll be facing. I guess there is no easy answers. I appricate you taking the time to respond to me its good to know someone else who's been thru all of this. sharon

[mikesimon]

Yes, the virus does recur universally in transplanted liver patients. The severity of the virus varries from patient to patient. I am treating my hep c with interferon and ribavirin and am hoping to clear permanently but the odds are not that good. I don't think my life expectancy is what it would be had I not been sick with this virus but 10 to 15 years is not unusual for a transplant patient. One thing about the liver is that it does not "wear out" as do most other transplanted organs so some people have lived for 25 years and longer but they have generally been young at the time of transplantation.
I don't know anything about the availability of medical treatment in Fla and I sympathize with your situation. I would still advise you to try and get assistance. We never really know how long we have and I feel it's better to be prepared just in case. I would think there may be federal assistance but this is not an area I am familiar with. I suggest searching the web for a transplant facility near you and make inquiry to them about possible sources for assistance. Whatever way you go I wish you the very best of luck. Mike

[lackalustre]

we sure do need prayer here i agree.   my faith in God thru Jesus Christ has really carried me thru all this. and my prayers go to everyone here.   many of us are dealing with such difficult situations.   there are no athiests in foxholes!!    
   for those interested -there is a site called ***@****.    there is a lot of sharing there from a Christian perspective.  they welcome new people.

[mikesimon]

You scared me too there for a minute. I was relieved to read that I misunderstood your post. Stay well. Mike

[jamit_a]

Thanks for your prayer! and may The Lord Bless you and Keep you all the days of your life.

God Bless,

Marcello

[new-sojourn]

What do you mean 'the wrong kind'?  If its genotypes, some cl earlier (24wks) some longer(48-72wks).  W/the combo treatment, the cl'ing rate is 50-90%, depending on genotype.

I had the varices esphocal bleeding that landed me in icu-coma, almost bled out b/c my blood had so few platletts.  Then, 3wks later I was dx w/hep c, from transfused bl during emerg c-sec.

I got to the big city across the mts, got into P-S peg-riba program, cl'd the virus in 3wks.  I have no insurance and needed my $$ for living-not doc's and Rx's.  I spent less than $3000.00.

I normalized my blood and handled all sx's thru nutrition, herbs, exercise and meditation(prayer).

Now, I went into coma and icu on 9-12-2001.  From the liver failure and esphoical bleeding, I should be dead, statistically speaking.  On the contrary, I'm enjoying a 'higher' QOL than I enjoyed for decades before dx and tx.  B/it's a struggle to not let  toxins build up.

  So, by living a very 'mind-ful' life, I no longer antcipate death.  It's all about the toxins now.

[jonihs]

Why when my liver failed, did the doc tell me he could keep me comfortable and let me go, or I could decide to change my life and have the fight of my life?

[mikesimon]

I'm sure there are drugs that would make ESLD more bearable but I don't know that "comfortable" is the word I'd choose. I guess a lot depends on the patient but having spent some time on the liver unit of a major transplant center I can tell you that I witnessed a lot of suffering. As I said the itching can be excruciatingly uncomfortable and although there are drugs that can be administered many people I have talked to recall their pretransplant days as very difficult. The ascites can be horrible. A friend of mine went into transplant surgery at 205 lbs. and after surgery he weighed 157 lbs. and it was all fuid. He had been drained several time prior to surgery so it was an ongoing problem. Should the esophageal varices rupture endoscopy banding or sclerosis is the general therapy and although the procedure is tolerable the risk of rebleed remains and must be treated with drugs and monitored on a fairly frequent basis. And internal bleeding results in a nausea of a far greater degree than anything I have ever experienced. It is frighteneing to put it mildly. And with the bleeding comes the risk of encephlopathy which can trigger quasi psychotic events - another very difficult condition. These are some of the things I experienced to a greater or lesser degree pre transplant and many of my friends had far worse symptoms. I was lucky in that I was fairly healthy before transplant. They thought they saw a lesion on my liver which they suspected was cancer and that is why I got my liver. It tunrned out not to be cancer at all but according to my surgeon my liver wa shot and it was only a matter of time before I deteriorated further and then perhaps I would have experienced what I saw others go through. And maybe some more fortunate people just expire without all these problems. I didn't see any of these folks but perhaps they were at home dying without intervention. I had a massive bleed once and came close to dying at home but that wasn't anything like comfortable believe me. I was so sick I would have done anything to feel better and I can't imagine someone just bleeding out like that but I guess they do. Sorry to paint such a sad picture but that's what I have seen and heard about. Mike

[jonihs]

I think he was just gonna keep me full of morphine till I died.    joni

[new-sojourn]

I've always wondered what that makes me.  I went into complete liver failure, almost bled out from varicies, went into a coma.  Told I had days, then dx w/hep c.  I tx'ed and cl'ed, and am now SVR since 10/02.

So, I wonder how long a SVR and ESLD is suppose to last.  Do livers re-comp?  Will the esophacal bleeding get me?  Am I still ESLD?  Will it be liver failure or a taxicab?

Or should I just go on living the best and healthiest life I now have, thanks to tx!

[mikesimon]

Live your life would be my advice. You're clear and hopefully some of the fibrosis has been reversed to the point where portal pressure won't precipitated bleeding. I'd be interested to know your liver enzymes now. Regardless you have so much to be thankful for and plenty of reason for hope. I wish you the best. Go to Amsterdam and enjoy yourself. Mike

[new-sojourn]

Funny you should mention Amsterdam.  We just booked a flat for 3mo next winter, and decided to come back on the Queen Mary2.  We took off 2 yrs to see this thru, dead or alive, and now find our super thrifty habits hard to break.
  My partner's studio work is leading to touring and I'm well enough for him to comfortably leave.  So, I'm planning at least 2yrs in advance now.  Not days or weeks.  Thank god for tx, it saved my life.  And now I can enjoy it, since I've already mended all the bridges (made ammends) and can just go on w/few regrets or 'what if' or 'if only's'.

And giving up junk food, drugs and alcohol, we save a bundle.  So I guess you could say, hep c ended up making me healthier, wealthier and wiser.

[Tallblonde]

Welcome to this board.  I'm glad you're here.  Your prayer was lovely, and very much needed.

Susan

[Tallblonde]

Please don't give up.  Pursue every possibility for assistance (medical, financial, spiritual, etc.) that's available to you.  Life is too precious; the battle to survive and thrive is worth the effort.  I'm sure you have people in your life who are counting on you to be around for a good long time.  Do it for them, at the very least.  And remember to continue coming here for suport and good advice from your friends who, to one degree or another, are facing the same challenges that you are.

Warm regards and best wishes to you...

Susan

[Tallblonde]

I just opened this thread for the first time today and was totally humbled by what I read.  Mike, I had no idea that you've been through so much.  And I see, from what others wrote, that you're not alone.  I feel like I've been selfish by prattling on about my miscarriages and my hopes for a viable pregnancy.  I'm obviously damn lucky that I'm not facing (at least for now) the kind of challenges that so many others here are facing.

My prayers are with all of you.

Susan

[mikesimon]

I have a saying that I think I made up - I never know because I plagiarize unconsciously. "There's no pain like my pain". I spit this phrase out when shortly after transplant and I was in a good bit of pain Karen complained to me about a headache then immediately apologized for mentioning something so trivial in the face of my condition. That's when I realized that it's not necessarily selfish to be concerned with your own pain because "there is no pain like my pain". I do appreciate your sympathy and understanding for what I and many others here have endured but you have valid concerns and they are important. As long as we can step back and see the bigger picture and not get totally absorbed in our own lives I think it's perfectly healthy to express our concerns and hopes and fears and pains. So don't worry a bit about it. Good luck. Mike

[willing]

this is indeed a somber thread. One of the insights I'm taking away  from tx is that it really doesn't take all that much to make life not worth living. I suppose it's socially necessary that suicide be a completely unsupported decision. However,it also seems there should be better resources available to people contemplating this choice than regular doses of morphine. Anyway, thanks for your eloquent description and congratulations on your grit.

[mikesimon]

If I am reading you right you and I are in agreement here. I had to put my dog down 2 years ago. It was so peaceful and it occurred to me that I had seen relatives and friends suffer horribly before dying and here I was with a dog who was able to exit life with grace and dignity. This is a touchy subject so I'll leave it here but I'm sure you get my drift. Mike