chronic liver cirrhosis at 35 confused

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rupok
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Date Joined Sep 2010
Total Posts : 21
   Posted 9/3/2010 7:30 AM (GMT -7)   
hi
last 24.08.10 at mid night i vomited blood about half a bucket and immidiately got hospitalized, there the doctor treated me to stop vomit and given antibiotic and saline to keep the temp and blood pressure well.later in the morning i had to take two bags of blood immidiately as i vomitted a lot of blood.they diagnosed me with andoscopy and ultrasonography. by andoscopy they have done ligation, which means taking of the blood lines inside my stomach to restrict coming of more blood in the intestine.by ultrasonography they were sure of my liver cirrohis. later they did several blood tests by which they confirmed that my cirrhosis wasnt due to hepatic.that is
1.i m not diabetic
2.i m not infected by hepatitis b or c
3.i dnt hv any high blood pleasure
They said cirrhosis is at chronic stage, so they cant do any biopsy which is risky for me.therefore my belly is now swelling with water, which gives a pain inside and a very duisturbing sitution.
the doctor said i need a liver transplantation.
i would like to know people and share their experiances with me those who had the same situation like me. at the moment i m very confused abt myslf tht in bangladesg there is a very few scope for survival. i m willing to get treatment either bangkok or india.I need to know do i realy need a liver transplantation?or i can hv alternative. any help would be most appreciated.
thankx

DGinSD
Forum Moderator


Date Joined Apr 2007
Total Posts : 839
   Posted 9/3/2010 8:27 AM (GMT -7)   

Rupok,

What kind of blood work have they run?  There are many things that can cause cirrhosis.  Alcoholism, autoimmune hepatitis, Primary Biliary Cirrhosis (PBS), etc...

There are many people who are dealing with cirrhosis on this forum.  They will be able to let you know the treatments that worked for themselves or their loved ones.  You should really sit down with your doctor, if possible, to know all the treatment options you have for controlling the ascites (fluid in your belly) and slowing down any further damage to your liver.  You must not have any alcoholic drinks and limit your salt intake.  Is there a liver specialist you can see in Bangladesh?  Or at least a GI (gastroenterologist) doc?

I'm sure others will respond to your post...there are many here to offer support and advice, 


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 9/3/2010 9:15 AM (GMT -7)   
Hello Rupak and welcome to HealingWell.  I am sorry that you are dealing with this horrible disease.   But you have found a wonderful forum.  We do have lots of members who are or have dealt with it.
 
First of all we have an educational post in the Hepatitis Resouce folder at the top of our forum.  It has lot's of good information that a number of our dear members have contributed to.   So please read it.  
 
Have they started you on any meds for the ascites(fluid in the belly).   There are ways to help ease the swelling with  fluid/sodium restriction,medicine and/or procedures.
 
Take care.....thoughts and prayers.......
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.

rupok
Regular Member


Date Joined Sep 2010
Total Posts : 21
   Posted 9/3/2010 10:01 AM (GMT -7)   
dear pink grandma
its a heart touching sense for me to be able to know about you and it has lightened up my mind.As i have developed ascites the doc prescribed low sodium intake and diuretic tablet and also lactulose another is a vitamin tablet.
At this moment its crucial for me know, whether my condition is up to for liver transplantation. As is Bangladesh chance of survival is 0% and doctors here are not much experienced abt, they suggested for liver transplantation.
 
I m nondiabetic, non alchoholic, nonsmoker,nonhepatic, and i dnt hv hight blood presuure too. I have asked for liver biopsy but the doc said its too risky for me. therefore the reason for cirrohis is yet unknown. they have done tests 1.blood urine2.cretanine 3. CAT scan 4. anti hbc, hcv,hbsag5. blood CS 6.Lipase7. total protein, albumin, globulin,A:G8. Prthombine time 8. glucose,billirubin alt,ast 9. haemogram etc etc...
 
I gotta decide either i will go to bangkok for advanced treatment if my condition can be better by drug medication without liver transplantation, or if liver transplantation is must, then i gotta opt for india, cause financial matter is a great value for me, that i may not afford going to bangkok and india at a time.I also like to know what is the life expectancy after successful liver transplantation.
thnkz a lot
rupok

Post Edited (rupok) : 9/3/2010 11:16:25 AM (GMT-6)


Pink Grandma
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Date Joined Nov 2006
Total Posts : 2445
   Posted 9/3/2010 10:27 AM (GMT -7)   
Rupok,
Sounds like your doctor is giving you some of the right treatments. What kind of doctor is he?  Hepatologist, Gastroenterologist, or a General practitioner? 
Many transplant patients live long productive lives after transplant.   We have at least 2 who contribute to the forum.  But I don't know what the percentages of survival  lenghth are in India or Bangkok.
If you know the tranplant centers name maybe they have a website.  You may be able to find the information there.   Read up on them to see which will be the better choice for you.  
 
Here in the states.....the doctor usually refers the patients to a transplant center.  But it's up to the patient to do the leg work and make the appointment or decide to on whether they want to go to it or another one.  We are very fortunate here.......we have lots of choices.  
 
Just do you homework and follow your doctors orders, don't procrastinate on finding a transplant center and getting the information you need. 
 
Thoughts and prayers........   
 
 

rupok
Regular Member


Date Joined Sep 2010
Total Posts : 21
   Posted 9/3/2010 10:42 AM (GMT -7)   
Dear pink grandma

the doc who treated is a Gastroenterogist and Hepatologist.I m yet to know, what is the reason of my chronic cirrhosis?what are the tests that will identify the reason for this and what are treatments for the kind of cirrhosis to arrrest further damage?cause if liver transplantation is a must i need to do i dont wanna make it late.
thnkzzz :)
rupok

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 9/3/2010 1:44 PM (GMT -7)   
Hi Rupok,   The 1st and utmost important thing that you can do is to not drink any alcohol at all.  Not even a drop.   It will damage you liver further. 
Diet,excercise and following your doctors orders as are important also.   Have you read our educational post in the resource folder yet?  It has lot's of good information.    
 
Some of the following things can cause cirrhosis.
 
Hepatitus B or C
Alcohol abuse
Some prescription or non prescription drugs. ( Google drugs that can damage the liver )
Obesity can cause Fatty liver disease.
Sometimes it's cause is unknown ........I believe at that point is when they make a diagnosis of AIH  Autoimmune Hepatitis.  It's when your immune system attacks your liver.  (Dany ,  can you clarify if I am correct please?)
 
There are probably others..........your lifestyle can probably help narrow down the cause of your cirrhosis.
 
Take care............
 
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/3/2010 2:57 PM (GMT -7)   

Rupok, welcome to the forum.  With the vomiting of blood, it sounds like you had bleeding esophageal varices, which were banded.  The treatment and meds you have received so far sound correct.  We are not doctors here and cannot tell you if you need a transplant or exactly what is causing your liver disease or how to treat it.  If I were you, I'd ask your doctor for a referral to a transplant center.  They will then do an evaluation and testing to decide if you are a transplant candidate.  If there are no big problems after transplant, you could live a long life with a new liver, although you would always be on antirejection meds.

PG, I believe AIH is a specific disease entity and not a label attached when there is no known cause for cirrhosis.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

DGinSD
Forum Moderator


Date Joined Apr 2007
Total Posts : 839
   Posted 9/3/2010 5:21 PM (GMT -7)   
AIH is it's own disorder.  There are autoimmune markers they can test for but not everyone who is diagnosed has them right away, they sometimes develop later on.  One of the first is the ANA.  Other than that there's the Anti-LKM, SLA, ASMA and others but they aren't specific for the disease...just help in making a diagnosis.  The definitive is a biopsy.  If that can't be performed and the LFT's are elevated (and AIH is suspected) then a response to prednisone is also used to diagnose.
There are some other diseases like PBC and PSC and some others that cause cirrhosis. 
Rupok, is there a way in Bangladesh that you can see a hepatologist and also have an MRI since they are telling you a biopsy is not possible at this time?  You should ask your doctor about a transjugular biopsy.  that's what I had since my liver was damaged enough that I wasn't able to clot at the time.  I needed a biopsy for confirmation of my AIH.  So they went through my jugular with ultrasound guidance.  I was given plasma all day before the procedure to help with clotting.
Please talk to your doctor again.

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 9/3/2010 7:43 PM (GMT -7)   
Rupak... center yourself... calm down... I know it's scarey... but listen... right now the treatment you have had can get you stabilized for a bit.. my guy was stabilized for 3 1/2 years after... now... there are people here living after transplants... they can write their stories... but first things first... you will need to get more answers and a referall for transplant.. so calm down.. if that is possible.. I know that what you've just been through is very very scary... I went through that with my guy... but calm down.. do you have a family member that can help you with these decisions?? My thoughts and prayers are with you... Sandi
There is no pit so deep that He is not deeper still... Corrie Ten Boom

rupok
Regular Member


Date Joined Sep 2010
Total Posts : 21
   Posted 9/3/2010 9:34 PM (GMT -7)   
Dear Pink grandma, connie dginsd and arneeb
thnkz thnkz thnkz alot. I see a lot of people beside me which gives me strength to look for the bright side not to worry about.

I am nonhepatic, nondiabetic, nonalcoholic, nonsmoker and even d'nt have high blood pressure. I am seeing a doctor who had done first liver transplant last 10 june this year. Still the medical adavancement, technology, expertise is not that much here in Bangladesh, thats the reason I am more worried about.

Yes, connie you were right, they said i had esophageal varices and which they ligated once, i have to go through it again this month on 18th. I dont know what kind of an MRI i need to have.

Sandy thx a lot for your kind thoughts and sharings, i know what thoughts my wife is under now. I am only member who took all the decisions before, at this time for myself i have to do the same.

in this case, patients like us is there any determinants, or tests that identifys a patients must undergo a liver transplant? I would clearly like to know if its better to live with cirrhosis under control as long as drugs can arrest further development or delays the progression?or its better to transplant my liverat this age of 35, if i am capable.

I m newly married and dnt have children yet and i am worried.


for your kind information, i have stated the tests results below or i can send them through email, so if any1 can direct me a U.S. Doctor by consulting, which I amready to pay also.

1. PT(PRTHOMBIN TIME):

a. Patient: 15.9

b. Control: 11.3

c. INR : 1.41


2. Blood Urea: 15 mg/dl

3. S. creatininie : 0.6 mg/dl

4. AFP( Alpha Feto Protein) 5.59 ng/ml

5. Bilirubin under contr

6. Platelet: 87 k/ul

7. Anti-HBc : 1.51

8. Anti-HCV : 0.31

HBsAg : 0.71


I would also like to know if there are any facilities through internet i can consult with a Gastroenterogist and Hepatologist and i can be under treatment through his consultation.

And thanks for all the care and share from the group and you all

Rupok

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/3/2010 10:24 PM (GMT -7)   

Rupok, do a search for online consult.  There are a few sites where a doctor will answer your question, though you may not get an answer right away.  Normally, though, a doctor will want to see you personally before giving you any information or advice.

It is definitely better to adjust your lifestyle and perhaps take meds to control your cirrhosis rather than get a transplant.  Transplant is a last resort, and you are not really the one to make that decision--it would be up to a transplant team.  At least that's how it's done here in the USA.  The evaluation process is grueling.  They do blood work and scans, as well as colonoscopy and endoscopy and psychological testing.  Whether you are placed on a transplant list, and where on the list you would be, is determined primarily by your MELD (Model for End-stage Liver Disease) score.  I certainly wouldn't want to receive a transplant from a doctor who has only done one of them.  Seek out a large hospital that might have a transplant team.

Your labs look pretty good, but you didn't give an AST or ALT (liver function tests.)

I really feel that you are putting the cart before the horse in talking about transplant.  You don't even know the cause of your cirrhosis yet.  You should get an abdominal MRI with contrast.  That will show your liver, spleen, and gall bladder and if there are any tumors they would also show up.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 9/3/2010 11:57 PM (GMT -7)   
as was dicussed with another person from the other side of the world... in different parts of the world.. money is the determinant for a transplant... however... still... all of the other things do apply... and it would be a last resort... not a first...your doctor and transplant team would make the determinations...
listen to Connie there Rupak.. and I understand in your culture the wife maybe wouldn't be making the decision... what about male family members... or a friend that you can consult with.. need to calm down though.. and no you are not alone..

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 9/3/2010 11:59 PM (GMT -7)   
From what you are saying India has more options...if Bangkok only has medicinal options...and India probably has both..
There is no pit so deep that He is not deeper still... Corrie Ten Boom

rupok
Regular Member


Date Joined Sep 2010
Total Posts : 21
   Posted 9/4/2010 1:30 AM (GMT -7)   
connie, i agree with you,liver transplant would be the last resort. I am now only 35,after living with cirrhosis may be 5/10 years could i be able to take such a surgery?cause within this years anything may happen.

Yes, they did ALT:76 U/L, AST : 95 U/L. I dnt have any idea of these tests, can u put some light?
I am willing to go bumrungrad hospital in Bangkok, hope to see for alternate solutions.
Does anyone know, what are tests that identifies the reason of my cirrhosis?do Auto immune patients can take liver transplantation?
Thnks
Rupok

DGinSD
Forum Moderator


Date Joined Apr 2007
Total Posts : 839
   Posted 9/4/2010 9:09 AM (GMT -7)   
  • Rupok,
  • I think you need to concentrate on treating the cirrhosis for right now.  Make sure the bandings work, eat a healthy low salt diet, keep the ascites under control, etc...  I agree with Connie that your numbers aren't shocking.  Your ALT/AST are elevated but not over a 100 which causes more concern.  I know some people who have been in the 1000's and didn't end up with a transplant.  Yes, you want to keep your own liver for as long as possible.  Below is a list of possible causes of cirrhosis.  Be sure your doctors check you for all of them if they are refusing to do a biopsy at this time.  Be sure they can check everything they can through blood and MRI (abdominal) until you can have a biopsy which will be your final diagnostic tool.  And please ask about a transjugular biopsy.
  • As per autoimmune patients receiving transplant, they can but rarely is it needed.  Even when some cirrhosis is present.  They are kept under control from further damage and the healthy liver that remains, is enough.  The key is to have proper diagnosis and get the proper treatment.  The treatment for AIH is immunosuppressive therapy which is similar to that of a post transplant patient.
  • Chronic alcohol abuse
  • Hepatitis B
  • Hepatitis C
  • Cystic fibrosis
  • Destruction of the bile ducts (primary biliary cirrhosis)
  • Fat that accumulates in the liver (nonalcoholic fatty liver disease)
  • Hardening and scarring of the bile ducts (primary sclerosing cholangitis)
  • Inability to process sugars in milk (galactosemia)
  • Iron buildup in the body (hemochromatosis)
  • Liver disease caused by your body's immune system (autoimmune hepatitis)
  • Parasite common in developing countries (schistosomiasis)
  • Poorly formed bile ducts in babies (biliary atresia)
  • Problems storing and releasing energy your cells need to function (glycogen storage disease)
  • Too much copper accumulated in the liver (Wilson's disease)

  • hep93
    Elite Member


    Date Joined Jul 2005
    Total Posts : 12014
       Posted 9/4/2010 11:13 AM (GMT -7)   

    Dany, that was a very informative list!  Thanks for posting it!  So you see, Rupok, there are many causes for cirrhosis.

    I am missing most of my liver due to cancer and resection; my LFTs are only slightly lower than yours, and I have cirrhosis in what's left of my liver.  But aside from fatigue, I am doing well.  (My problems are all due to hep C, for which I hope to get treatment next year when new therapy is available.)  If the cirrhosis doesn't advance or the cancer return (it's been over 3 yrs. now), I could live a long time.

    So I want you to put transplant out of your head for now.  You first need to get a definitive diagnosis and get proper treatment.  Meanwhile, do as Dany says with low salt intake, nutrition, and no alcohol.

    Hugs,

    Connie



    hep93
    Forum moderator - Hepatitis
     
    "But that was yesterday, and I was a different person then."
    Lewis Carroll, Alice in Wonderland

    rupok
    Regular Member


    Date Joined Sep 2010
    Total Posts : 21
       Posted 9/4/2010 11:37 AM (GMT -7)   
    I think I should sum up my questions in short, so that responses could be more clear and accurate.
     
    1.) Is there any drugs, that can arrest or delay further damage to the liver or only diuretaic tab, vit tab and low salt intake is well enough?
     
    2.) If the ans is yes, than, identifying the correct reason for liver cirrhosis could help resisting the progression of further damage?
     
    3.) If the diet and the med i am recieving is well enough, than should i wait for further damage to my liver rather than transplanting it now at my age of 35, which is most better?wait or do it now, cause in Asia we dnt have to wait for liver transplantation. and I am really worried and scared of advanced complexities of my liver in future.
     
    4. What are the drugs or med that is used for non hepatic, nonalcoholic,nondiabetic patients?
     
    5. I have my MELD score is 12
    I have got some good information to share with you all
     
    thnkz
    rupok

    hep93
    Elite Member


    Date Joined Jul 2005
    Total Posts : 12014
       Posted 9/4/2010 1:43 PM (GMT -7)   

    Rupok, it may be different where you live, but in the USA there is no drug that can specifically halt cirrhosis.  They treat the symptoms (such as diuretics for ascites and fluid retention, or Lactulose for elevated ammonia) and suggest lifestyle changes to include low salt diet and no alcohol, to name two of them, which can halt the progression.

    A MELD score of 12 here would not get you a transplant.  Again, I do not know if it's the same in Asia.  Also, a transplant is not a preventative measure as you seem to think.  It is A LAST RESORT.  There are many things that can go wrong during and especially after transplant, including death.  Again, I think it is very premature for you to be considering transplant.

    Take the drugs that have been prescribed, keep a low-salt diet, and follow your doctor's directions.  Then, in a couple of months, have the labs repeated to find out if they are the same (stable), have decreased (a good sign) or increased (not good.)

    Normally, the cause of the cirrhosis is treated.  In your case, until you know what caused it, you may not be able to stop the progression.  You need further testing at this time to determine the cause of your cirrhosis.

    By the way, I am seen at Mayo.

    Hugs,

    Connie



    hep93
    Forum moderator - Hepatitis
     
    "But that was yesterday, and I was a different person then."
    Lewis Carroll, Alice in Wonderland

    arneeb
    Veteran Member


    Date Joined Nov 2009
    Total Posts : 2350
       Posted 9/4/2010 4:22 PM (GMT -7)   
    Dear Rupok: please remember we are not doctors... but this indeed is probably the most informative forum you will find in the world... on this subject.. so relax.. and listen to the wise people here... you need to find the cause of your cirhosis without that... you don't know what you're up against...and you may have other things going on that haven't been addressed yet.. anyways that's my two cents for what it is worth..you are in my thoughts and prayers.. Sandi... and no I wasn't short... or brief... oops..

    **David**
    Veteran Member


    Date Joined Nov 2009
    Total Posts : 3708
       Posted 9/4/2010 4:40 PM (GMT -7)   
    Rupok,
    First, find out how severe your cirrhosis is. Unless your liver is totally failed, don't rush into a transplant. I had one last year, but it had taken 40 years to get to a point where I was about to die. Remember, even at the finest hospitals in the world, 10% of the transplant patients die within the first year. Most transplant centers say that a "new" liver is good for 25 years. That would mean I'm good until 84. In your case, you would be good until you were 60 (my present age). Try to keep the liver you now have healthy, as long as possible. Then, someday, if you really need a transplant, get one. Get a hepatologist now. Then, when you have the right information, it's likely you'll be able to come to a sound decision. I know that one may buy liver transplants in Thailand. But, do you have the resources to buy two, if the first one fails?
    "No good deed goes unpunished."

    Butterflythree
    Veteran Member


    Date Joined Oct 2007
    Total Posts : 954
       Posted 9/4/2010 7:55 PM (GMT -7)   
    Welcome to the forum Rupok. I agree with everyone else. I think you are jumping the gun. Concentrate on taking care of yourself. You may have many years before you have to consider a transplant. My husband was diagnosed with cirrhosis almost 5 years ago. We are in the process of getting him listed for transplant. His MELD score has remained at 17 for about 2 years. We don't expect him to need transplant in the near future.
    Butterflythree
     
    There is always hope!

    rupok
    Regular Member


    Date Joined Sep 2010
    Total Posts : 21
       Posted 9/5/2010 6:47 AM (GMT -7)   
    Thankyou butterfly.I am just confused that at my age of 35 i can may take the hazards of a surgery like liver transplant, but can i do it after 10-15 years later?in Asia we may not have to wait for a liver transplant, many of the americans and europeans are now turning to Asia just for that reason, there, in 10-15 years anything may happen, shoild i take that risk?i m sorry i m new here so may be i lack a lot of experiences to come in future that i have to endure.

    david, pray for me so that i can get a positive result, and doc says good things a lot so that i can agree that without transplntation i can live well,

    Best wishes
    Rupok

    Butterflythree
    Veteran Member


    Date Joined Oct 2007
    Total Posts : 954
       Posted 9/5/2010 9:17 AM (GMT -7)   
    I'm sorry but I can't answer your question. I think the doctor's would be able to best to give you advice on this. All I can give are opinions. To be honest when my husband was at his sickest I wished that he could have the transplant right away. He also had a bleed that almost killed him and it was very scary. That was about two years ago. Now the main thing he battles is encephalopathy. That landed him in the hospital about 3 weeks ago. Since he has been home, we have been able to keep that under control. He has been doing extremely well since then. Now I am hoping that he won't need transplanted for a while to come.

    Good luck and my prayers are with you.
    Butterflythree
     
    There is always hope!

    rupok
    Regular Member


    Date Joined Sep 2010
    Total Posts : 21
       Posted 9/5/2010 10:45 AM (GMT -7)   
    dear all
    one crucial question,having a good restricted diet, ow sodium and protein intake with all the medications and by abiding by the restrictions to be maintained by the patient, could he resist the further complicacy of the liver cirrhosis in progression, dnt you guys enduring the stress and pain after abiding by all the rules by the med or doc, if the ans is yes, its better to go for transplantation.

    butterfly can you tell me after doing all that a doc told you to do, didnt your loved one fall for encephalopathy?and you knoww there are more to come in near future, can u endure these?

    plz i need answeres from all the users here

    God be with us
    thanks
    Rupok
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