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Posted 9/5/2010 6:00 PM (GMT 0)

Rupok, normally if all the instructions are followed completely, the cirrhosis will not progress.  However (and this is VERY important), it depends on the CAUSE of the cirrhosis.  If the cause is not treated, the cirrhosis will progress.  That is why I have told you several times that the most important thing for you right now is to find out the reason for the cirrhosis and get treatment for the cause of it.  You seem to be forgetting that and I feel like I am butting my head against a stone wall and not getting through to you.  You keep jumping to the subject of transplant when you don't even know the cause of the cirrhosis.

Hugs,

Connie

Posted 9/5/2010 6:15 PM (GMT 0)
Rupok, My husband's cirrhosis is caused by Hep C, so the damage to his liver continues even though he follows the doctor's direction. But it seems that the damage is progressing slowly with him. For that I am thankful. As far as encephalopahy goes, that I can handle. There are many other things that may be to come and that bridge will have to be crossed when or if we get there.

I agree with Connie. First you need to find the cause of the cirrhosis. For example under certain circustances a person that develops cirrhosis due to alcoholism can go on to lead a normal life if they stop drinking because the thing that is causing the damage has been stopped.
Posted 9/5/2010 7:15 PM (GMT 0)
my dear friend connie, i am yet to know my reason, preaparing to bangkok, cause in my country the treatment is over, thats why my ignorance is all about. I just wanted to confirm that things wont go wrong even if i completely follow instructions and med, cause things that i dnt what may come in front of me.And I am worried if i could get a good tratment here in my country at the time of immergency. thank you butterfly for letting me know your loved ones reason and the support to connie. now i can understand it clearly.

lets hope for the best.
best wishes
Rupok
Posted 9/6/2010 2:09 AM (GMT 0)
Prayers for you Rupok as you head to Bangkok
Posted 9/6/2010 1:27 PM (GMT 0)
hello all
now i got another question, i think most crucial for me and people like me of my age. I am now at 35, no matter, how best i follow the restrictions and diet with med, I cannot escape the progression of liver damage, so as i cannot escape from further damage, surely i cannot deny the complexities of liver damage to follow. cause once i fall in complexties, i will be hospitalized and the doc will provide new med with new rules. As much as i will be taking the drugs my body will slowly be weaker than i m at now.

Through this was way of my journey with the damged liver, i can hoghly expect to live 5-10 years more, and after transplantation if i able to survive, it would be 22 years avg. so a total of 30 years to add, that is i may live max 65 years.
Where my both grndpa and ma lived for 80-90 years, i cannot expect as such.
My loving wife is now only at 27, and she will have to bear the stress and pain all through her life expecting me to live a min of 50 to max 65 years.
how irony isnt it? I know there are lucky people who have got cirrhosis at 45 or 50 and after transplant will live more that is about 30 years...lol...
i dnt know how to face it, how to tell this to my wife.. may God give me stregth to face it, and wish to come more responses on the matter i just expressed.
Thanks
Rupok
Posted 9/6/2010 6:27 PM (GMT 0)

Rupok, maybe you should start a business as a psychic, since you seem to think you can predict the future.  Based on what?  Some Internet research?  Once again, you do not even know the cause of your cirrhosis yet.  Every case is different.  You have too little information to know what will happen in your case.

You are trying to convince yourself that you should go ahead and have a transplant.  Again, you have too little information about your case at this point to make a really INFORMED decision.  But it's your life and your money.  Go ahead and do what you want to do.  You're going to, anyway, regardless of what we tell you.

Right now, I choose not to keep this dialogue going, as it's all based on supposition.  When you have some solid science to report--the results of repeat blood work and scans or biopsy to determine the cause of your cirrhosis and what the doctor recommends--then we can talk.


Posted 9/6/2010 7:32 PM (GMT 0)
dear hep93
lol.theres no need to be that immotional.I am not convincing myself for the transplant, I am tryig to get as much information as i can get.I have become member of other cirrhosis forum too, ands also you can tell me i am an internet freak.I know hoe best i can track down what information, I need.
I have come to understand that, I have to live with my existing liver as much as i can. Neither i can restrict its progression of further damage no matter how best i folllow the rules.

Most of the patients i have talking with around the world have the cirrhosis a min of 1.5 year to 17 year without transplant, and neither any of them have escaped the complexties of progressing liver damage. So I understood i have to on on with my liver as well as i also have to be ready what next to come of the complexities to face.

Now talking about the life exectancy, in a research done by UK, HIVand hepatitis.com a topic Life Expectancy after Liver Transplantation by By Liz Highleyman


 

(This part deleted due to violation of Forum Rule #9:  9. No posts of copyrighted material.  Information copyrighted or owned by any individual or entity other than the person posting should not be posted on the message boards without the consent of the owner.)


So that was my search that what could be my life expectancy being defected by cirrhosis at my age of 35. I said people who got cirrhosis at later age of 40-50 are much luckier than me cause they have lived better longer than me, and i am misfortunate to got this diseaese so early. how old were you when you got this disease hep?

You can stop keeping this dialouge, but hey dnt leave me alone...cause I am with you too...lol


Best wishes and pray
Rupok

Posted 9/6/2010 8:18 PM (GMT 0)
LOL??? don't be emotional??? 50 year olds who get this horrible disease are fortunate?? their lives less valuable?? their moments less vibrant?? It's hard not to be emotional when dealing with the issues of life and death. All the statistics in the world... studies in the universities... are not going to color... change.. rearrange the facts... you have a serious illnesses... you do not know the cause... get the facts on your body before it's too late... your wife deserves the truth...and some preparation for that truth...you need to quit running around seeking advice from everyone and picking and choosing what you want to hear..... it doesn't matter how many people you talk to .. how many facts you gather... you are ill..and don't know the cause... period.. end of story..

My "fortunate" 54 year old man is dead... don't tell me about fortunate 50 year olds please...thank God we shared a lifetime of love in the short time we have..

Rupok... you're so busy reading statistics about liver disase and life spans... you're forgetting no one comes with an expiration date on the bottom of their feet... and anyone on any given day could be laid out flat as a pancake simply by crossing  the road.. so get the facts on your body.. speculation is just that speculation...your wife deserves the truth.. and yes I pray for you and her to have the strength to face that truth together...for it is on her that you will rely when this disease grips you.. and it will be she that will kneel by your side as you grab for life... she deserves the opportunity to be prepared... Sandi

Posted 9/6/2010 8:22 PM (GMT 0)
One can not hide behind statistics, power, wealth, status.... all these things pass away... illness is the great equalizer... everyone passes through the same eye of the needle...from life to death...quoting statistics will not lengthen your moments here on earth... knowing your illness for you body can... might...
Posted 9/6/2010 9:13 PM (GMT 0)
We had another person (fairly recently), who sounded very much like you in this forum. He had the same type of "questions." Essentially, he was looking for someone to give him an answer that he wanted to hear. None of us can tell you what's going to happen in the future. Even a dozen of the worlds foremost hepatologists couldn't tell you how and what will occur with your liver condition. But, you could have an idea of where you are, right now, if you were to be examined by a single hepatologist. Stop all of this ridiculous posturing and go see a hepatologist. If you truly want help, start by helping yourself. I agree with Connie. No more conversations until you help yourself. All this what if, what if, stuff is garbage.
Posted 9/6/2010 11:02 PM (GMT 0)
Rupok,

I have already mentioned one disease that I am extremely familiar with that can stop cirrhotic progression with proper treatment...AIH.  There are many who have been diagnosed with AIH with cirrhosis (children too) who have been properly diagnosed and put on the correct medication and who have gone on to live perfectly fine lives with NO transplant.  Get the proper diagnosis.  You don't know the cause of your cirrhosis.  All you talk about is how long you may live with or without a transplant.  You've also mentioned going to bangkok for consult...then go and insist thay do a biopsy to find out what is the cause of your liver disease.

Cirrhosis can be stopped/slowed with the right diagnosis.  Wallowing in self pity and assuming that people who are diagnosed later in life are somehow better off than you is ridiculous and a waste of negative energy.  People who are older may also not be strong enough to handle a transplant either.  And it's not to say that if you did have a transplant that in 15 yrs (IF) it failed, you couldn't have another. 

Find out what the cause is...period.  That's your next line of defense in this disease.  In the meantime...take your meds and watch your diet and TRY to avoid stress and stop inflicting more on yourself when you don't even know what's going on.

Posted 9/7/2010 3:16 AM (GMT 0)
Rupok, are you really Rupok or our other friend that refused to see a doctor? I would seriously urge you to see a doctor and find out what the cause of your cirrhosis is. There are those who have gone to live happy, healthy lives with cirrhosis, but you have to know what you are dealing with here......not just guessing and getting internet advice.

Please do your family a favor (because we know you will not do it for yourself) and get the necessary testing done to find out the root cause. Then, you can work from there

Sorry to sound so harsh, but there are many of us here who are watching our loved ones fight this disease every day of their life and to run across someone so passive is very frustrating!

Mer

Posted 9/7/2010 3:38 AM (GMT 0)
dear All

I got my 2nd EVL on 18th this month, after that i will go to bangkok. Yes, may be, I dnt know the truth of my cirrhosis yet.Iwrote my thought as a gross idea.I am a very difinite person in my life,there is no middle thing in my life, always either YES or NO its my habit. Therefore I am most grateful to my life that GOD has gifted me so many gifts that at my age, in my country and culture very few people had achieved,therefore I have got so mch love and care that I sometime 4get even i have disease. The only repentense in my life is my wife that i cannot may give her much, one year ago she wanted to have a chil so much and now i am ill. I have tried to give care to my relatives as much as i can, either elder or younger.

Somehow, sometime i even dnt feel i have my diseaese, may be tht for i am young and less experinced, and theres so much to face yet. I would say all i have wriiten here is my personal thoughts, so plz dnt get it otherwise. I know dee in my mind, that i have the courage to face death cause death is beautiful to me. I do care less about myself rather i care for others even at this time, i repent for my wife only. thats why may be you have found my writtings such. I wanna have that courage till to the end of my journey and guys pray for me.....
thnks
Rupok
Posted 9/7/2010 3:53 AM (GMT 0)
dear arneeb
please dont take it that way, why cant you think that, if i were to had this disease at the age of 45-50, I would have a good deal of time to give others more. I may not give you my personal past years, but i have always sacrificed, compromise my life for the sake of others, older or younger. I have tried to perform more that i can give. may be those 10-15 years i could have given them more, cause now i cannot. All these people are now around me, that gives a kind of staisfaction and also sadness that i may not able to peform what i have been performing all these days. Thats why i termed myself to be unfortunate, i dont mean others to be what you have just said, sorry for that. Even I am not here to share my personal details of the past , how much sufferings i have suffered all through my age of 35, but still i tried to give my best hiding my sufferings behind, even at that time I always wanted to have a diseas, so that i can leave this world ,leaving all in alone so that they can understand what i was, when i lived. The only reason now i may want to live is for those who are beside me and my wife.

thnks

Rupok Chakma
Posted 9/7/2010 3:43 PM (GMT 0)
Rupok, I wish you good luck with your next evaluation and appointment in Bangkok. I hope the doctors are able to give you all the answers you are looking for. Try not to worry so much. Sometimes one can research too much and only cause more anxiety. I found that to be true when I learned that my husband had this disease. So I had to back off for awhile. All the "what may be to comes" were getting a little too overwhelming. Try to take it easy until you have seen the doctors.

My thoughts and prayers as always are with you and your family.
Posted 9/7/2010 5:11 PM (GMT 0)
Butterfl, you have given the most beautiful reply to y urge and totally agree with you. What i am feeling was sorrow, what i have to face is the truth, that you have cleared it in a nicest way. Your hubby have the best woman with him, he can really lean on you. And thank you most for your kind thoughts. I am watching the movie casaablanca now, ingrid bergman my fav. one..the time passes by..

prayers for your hubby and you too

thnks
Rupok
Posted 9/7/2010 10:20 PM (GMT 0)
i have been reading your post and have to say im not feeling much sympathy for you.....you sound like you really arent even sure whats wrong with you. my mother is older than you and dying from this horrible disease.. she brought this on herself but does that make it easier for her or her family members because she is older than you????????? im not sure what you are hoping to find here... if you are looking for kind, compassionate, and sometimes brutally honest people, then you are at the right place..if you want somebody to diagnose you via the internet then you are oiut of luck....no one deserves this disease.... but we are making the best of a bad situation and trying to cope.... maybe with the fact you are so young, you can beat  this disease, if ya really have it. but dont lol and make comments that others who are truly struggling with this and also their family members who are here seeking support find absolutely no humor in.... i wish you luck with whatever is wrong with you...
Posted 9/8/2010 1:08 AM (GMT 0)
rupok... some of ur words are due to cultural and language differences... but there is no doubting words like "I always wanted a disease"... your words seem odd... I still take issue with Mike being labeled "fortunate".... but I think I'm done posting here also.. u have my thoughts and prayers..
Posted 9/8/2010 3:59 AM (GMT 0)
dear members and care givers

I am extremely sorry, if any of my words have given you thoughts to misunderstand me or gave you pain. What Arneeb said is true. Due to cultural and to its emotional difference, my words may seem harsh to any of you. But that wasnt my intention, anyway or never thought it to be. Bearing this disease, isnt at all fortunate at all whether my age was 35 or 60.

I just tried to say my side of story, as every patients have different case to remedy, as it will difffer case to case. So i went away with my story, whatever words were i told that only relates me and my wife. I felt sorry and compassionate to her, everyday she cries for me why it have happened to her fate. Why she had been so misfortunate, why i have got this disease so early of my age?obviously her thoughts touched my heart and gave away my story here saying myself to have this disease so early and misfortunating myself and felt grief to not being able to giver enough time to take care of her or to give her a child. My storys are my personal one only.If any one reading this should must consider me only, cause my personal thoughts are only mine.Its to none. So please do not mixup with what my personal thoughts are with yours, cause i dont know your personal story.

Thankyou  arneeb for understanding a part of me. I kind of try to lead a life spiritual, wheere my thoughts relates with my culture and society. i kind of thinker that death is beautiful as it gives the oppoartunity to know and come near God.I used to say this even when i didnt get this disease.But my only thoughts are now with my wife, if anything happens to me she will be completely alone in this world, if i ever wanna live is just for her only. I vwant to let you know that in asia famiy bonding is much more great advantage that we share. Both of our parents live in the same city but they have left our mind in heart.

i dont want to share it here cause its my pain that always gives me stress that i can ever forget.

But at the end,dear members I am one of you, I will have to cross the same river on the same boat as you all do....

I wish all the best to all of you and have a good jurney, may God bless us all

Thnks

Rupok

 

Posted 9/8/2010 1:21 PM (GMT 0)
well now that made more sense... and my thoughts and prayers are with you... oh you have much to learn about Ameerica... not all are familes are broken ones... a lot of ours are close also... but there are definitely differences...Sandi
Posted 9/8/2010 4:15 PM (GMT 0)
does every cirrhosis patient have itching symptomps, dry mouth no matter how much water you take or feel fatigue after coming home, and having diarrehoea at the same time?cause these were the symptomps i had b4 caught by this diseaese.

thnks
rupok
Posted 9/8/2010 7:25 PM (GMT 0)

Rupok, since you've posted some reasonable questions, I am happy to answer:  Yes to all of those, but I haven't had diarrhea.  Some do.

Hugs,

Connie

Posted 9/9/2010 11:16 PM (GMT 0)
Rupok, My husband has the same fears as you when it comes to his family. I was filled with very much sorrow when I learned my husband was sick. Now I've come to accept it. I try my best to concentrate on the good things and have hope for the future. Don't get me wrong. I still have days that I start to lose hope. But for the most part I try to remain positive. I'll be praying for your wife and you.
Posted 11/9/2010 1:07 PM (GMT 0)
hi Butterflythree
Thanks for your nice supports and thoughts, i pray for you and your hubby too. Its after a long time, I came here with results.

My test result came out with the findings that I have got wilsons disease, that is body is incapable of exert extra copper which had made my liver to turn cirrhosis.

I am now diagonsed with Cuprimin, legalon, ursofalk, Inderal, Diuertics, Multivitamin,trupan tablets... so many tablets to take to live well.

The doc said it may be reversed may be the coipper diposit or liver cirrhosis which one i am not sure yet, asked to revisit on januray next year.

Need to know more about diet n people with the same disease living here.

Thanks a Lot

With regards

rupok

Posted 11/9/2010 1:28 PM (GMT 0)
Rupok, I am happy to hear from you and so glad that you finally have a diagnosis. I know people with liver conditions should follow a low sodium diet and avoid red meat. I dont know anything about Wilsons disease so I'm not sure what the recommended diet is. Hopefully someone else will know.

If they can reverse the Wilson's disease it will stop the progression of cirrhosis. That is a really good thing.

Thanks for coming back and updating us. I have often wondered how you were doing.

As always, you are in my thoughts and prayers.
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