Need Help - Lever Transplant

[Charan620]

Hi,

I am 32 years.

I had some abdominal problem for 2 years and i ignored it mistaking it for Gastric problem

Got serious a few months back and got my tests done which showed my LFT levels abnormal.

Later after series of tests i was found to have Autoimmune hepatitis and Liver cirrhosis.

The Liver biopsy report shows ISHAK Stage 6 Grade 10 of Liver cirrhosis.

my question is

1. What does Ishak Stage 6 Grade 10 mean?

2. I am on steroids of 10MG a day ..is it too high?

3. Seems Liver transplant is the only solution ...but how long a person can survive w/o transplant?

4. I have my Granny who is 84 yrs old and is on her death bed..Is it possible to have her liver transplanted to me?

[mikesimon]

See: http://digestive.niddk.nih.gov/ddiseases/pubs/autoimmunehep/index.htm

"Treatment

Treatment works best when autoimmune hepatitis is diagnosed early. With proper treatment, autoimmune hepatitis can usually be controlled. In fact, recent studies show that sustained response to treatment not only stops the disease from getting worse, but also may actually reverse some of the damage.

The primary treatment is medicine to suppress (slow down) an overactive immune system.

Both types of autoimmune hepatitis are treated with daily doses of a corticosteroid called prednisone. Your doctor may start you on a high dose (20 to 60 mg per day) and lower the dose to 5 to 15 mg/day as the disease is controlled. The goal is to find the lowest possible dose that will control your disease.

Another medicine, azathioprine (Imuran) is also used to treat autoimmune hepatitis. Like prednisone, azathioprine suppresses the immune system, but in a different way. It helps lower the dose of prednisone needed, thereby reducing its side effects. Your doctor may prescribe azathioprine, in addition to prednisone, once your disease is under control.

Most people will need to take prednisone, with or without azathioprine, for years. Some people take it for life. Corticosteroids may slow down the disease, but everyone is different. In about one out of every three people, treatment can eventually be stopped. After stopping, it is important to carefully monitor your condition and promptly report any new symptoms to your doctor because the disease may return and be even more severe, especially during the first few months after stopping treatment.

In about 7 out of 10 people, the disease goes into remission, with a lessening of severity of symptoms, within 2 years of starting treatment. A portion of persons with a remission will see the disease return within 3 years, so treatment may be necessary on and off for years, if not for life."

I occurs to me that your prednisone dose could be higher if your disease is not controlled at this dose. That is something you should address with your doctor.

It is hard for me to determine the extent of your liver injury on the basis of what you report. The Ishak score can be tricky to understand.

See: http://www.natap.org/2003/Jan/012703_2.htm

"The necroinflammatory components of the HAI include periportal inflammation and necrosis (0-10), lobular inflammation and necrosis (0-4), and portal inflammation (0-4). Instead of the HAI fibrosis score (0-4), the Ishak score was used, which stages fibrosis from 0-6 (1-2, portal fibrotic expansion; 3-4, bridging fibrosis; 5-6, cirrhosis). Steatosis was scored based on the proportion of hepatocytes with fat (1+, 25%; 2+, 26%-50%; 3+, 51%-75%; 4+, 76%). "

I am confused by your doctor saying the Ishak range is 1 to 10. Regardless, if we assume that you do have some cirrhosis, and I think that is a reasonable assumption, then maybe your goal should be to control the disease with medication and carefully watch your diet and work toward keeping your own liver. People can and do live long lives with cirrhosis and you might well be one of those people.

Older donors' livers have been successfully transplanted so it's conceivable that your grandmother's liver might be a possibility. I believe the oldest liver donor was 92 years of age. I know nothing about the protocol in India regarding organ allocation so I really can't add anything more to this subject.

This is a very complex subject and I apologize for my incompetence. I think you need to sit down with your doctor and thoroughly discuss the condition of your liver, the likelihood of controlling your disease with medication and his/her prognosis as far as your life expectancy and quality of life is concerned. And then get his/her opinion of the benefit and possibility of transplantation should it come to that.
I wish you good luck and good health.
Mike

[Kande]

I think Mike has covered everything very well. He has given you good advise and great information. I completely agree with him! Thanks Mike! I can only add that we are always here for you. We all understand what you are going through. Know that you have our full support.  ~Kande

[Charan620]

I apologise for not responding to your update as i was on a vacation for 2 weeks and wanted to spend some time with my kids away from my regular routine.

Thanks for your valuable advise. It has releived me to some extent.

I was shattered when i came to know i had cirrhosis. I was diognised in January 2008 and the Prednisone dose started off with 30 MG and and now reduced to 10 MG for last 2 months. I have an appointment on 15 MAY 2008.

My doctor did not give proper response to my querries. He just said that i had someting called ANA & AMA in my blood which has caused the Autoimmune hepatitis.

I was really worried bcos from my childhood i have been told that only excessive alchohol consumption will lead to Lever problem and i do not drink or smoke.


1. Just keen to know what is that i need to enquire when i go to the Doctor next?

2. Can a O+ve donor donate his lever to A+ve ( was keen because ..i want to make sure that i have some to donate when i need. My Wife is having o+ve .I .i dont have any brothers or sisters who can donate. so just thinking of possibiliteis proactively ..as it may help when the situation arises.)

[mikesimon]

You must have a blood type compatible with the recipient or you will not be able to donate. Here is who can donate to whom:

Type A can donate to types A and AB.

Type B can donate to types B and AB.
  
Type AB can donate to type AB.
    
Type O can donate to types A, B, AB, and O.


Blood Type   Can receive liver from:        Generally can donate a liver to:
O                        O                                       O, A, B, AB
A                        A, O                                   A, AB
B                        B, O                                   B, AB
AB                      O, A, B, AB                        AB

[Charan620]

I am feeling very strained nowadays.

Even after a sound sleep when i get up in the morning i am very tired and have no interest in anything. Is this due to side affects of the prednisone?

I do not have enough strength in my limbs either. Though i ve gained some weight and my complexion has changed i am not that very active as before.

[mikesimon]

I never had that particular reaction to prednisone but that doesn't mean it cannot affect you differently from the way it affected me. I don't know why you're feeling that way. I hope you start feeling better as the day goes on. Mike

[Kande]

Charan,
I was on Prednisone for a short while after my liver transplant. I had some rejection issues early on and Prednisone was the drug of choice, to help with the rejection. I had a lot of energy while I was on the medicine. I lost 6lbs. while on Prednisone, the reason was I just couldn't stop moving. I remember cleaning my home for 16 hours. It had the opposite effect with me. My doctors told me, my reaction to the medicine, was normal. Do you think you could be anemic? That can be a problem with pre & post transplant patients. I believe I would have some blood tests done. You should not feel that weak.

[Charan620]

Hi,

NOSE Bleed Common in Cirrhosis?

Had Nose Bleeds twice yesterday.

[Kande]

Yes, nose bleeds are common. The reason is the liver makes certain proteins