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Avatar universal

Need Help on Liver Transplant Decision

Hello Friends,

I have been following the forum for quite some time. After reading the posts I get a bit of confidence and hope every time.

I had been diagnosed of Overlap syndrome (Autoimmune hepatitis and Primary Bilary Cirrhosis) in the year 2008. Since than I have been on Medication and the meds have been responding well. Currently I am on 2.5 MG of prednisone alternate day and 75 and 100 MG of Azathioprine alternate day.

Last 6 years my LFTS have been in control and Albumin levels are also normal. The blood counts are less due to the Immunorepressents I take and even they have been consistent. I haven't faced any complications till now. I had periodic endoscopy and ultrasounds and Had Banding 4 times due to large varices but not bleeding. Last six months I have been having Mild Fluid retention and started my di-uriatics Aldactone 25 MG and 50 MG alternate day.

I am leading a near to normal life. I observed my energy levels are going down slowly and feel the quality of life is going down and also had a discussion with my hepatologist a week back. He says I am clinically well and he says the quality of life is something in my control suggested that I should get evaluated for a transplant and get listed If I feel that the quality of life is really bad.

He says my Condition is not alarming but I would need a transplant for sure one day. He has left the decision to me  on transplant. As the waiting period for a organ is long I am thinking of getting listed and resist from a transplant till I really need it.

Also my queries are as follows

1.  Since I am not that very sick will a transplant help me recover fast and also have less complications if I have a Living donor?

2. I have a humble soul in my near family who is really concerned about me and has offered me a transplant. She is 46 years old and healthy but her physique is a bit on a lower side when compared with me. will that really matter? I need to consider getting her evaluated if I really plan for a transplant of course only if Blood group matches.

3. But my real concern for now is should i bite the bullet now or hold it for some more time?

Need your advice / Opinion on the same.
5 Responses
Avatar universal
My husband had a liver transplant in 2012, the result of end stage liver disease caused by Hepatitis C.  It is not an easy procedure but it saved his life.  He has had complications post transplant.

I would recommend you be evaluated for transplant and listed. Do you live in the US? if so and if you do not have a living donor, your MELD score will determine when you will get your transplant, You can always change your mind if you decide not to go through with it.  My guess is that if you are offered a liver, you will accept it, because you will be a very sick person at that point.

Good luck on your decision and I hope you continue to feel well.
29837 tn?1414538248
The question is not difficult to answer whether or not you need a liver. A good Hepatologist will know. A biopsy should tell all. If you've never had one, it's no big deal. Before my transplant I had 3. I had my transplant 9 months ago and it was the best decision of my life, otherwise by now I would net be on this earth.

There are risks, but then again, there are risks every time you get in your car and drive. The risks of getting a transplant are very few and well worth the gamble. If I had to do it again, I would in a New York minute. You will literally have a new life. A second chance. A big smile on your face. Find a good Hepatologist and best of luck...

Avatar universal
Hello Friends,

Returning after quite some time.

I am yet not listed by Grace of God. My Hepatologist has said that I need to be mentally prepared for a transplant and since my case is not alarming he is optimistic that i can do it without a transplant for some time.

I have been diagnosed with Portal Vein Thrombosis 4 months back and have been on warfarine dosage. He suggests that my portal vein can get recanulated soon and I will be off the warfarine.

Life Goes on ..with Gods Grace and good wishes.

Avatar universal
Do you have to be on meds the rest of your life so that you don't reject the transplanted liver?
29837 tn?1414538248
This Dec. 2nd will be my three year post transplant and I am very strong and healthy. As for the Prograf (anti rejection drug), I started with 10mg a day after the transplant. After a few months, I went down to 4mg daily. I am now down to 3mg daily and in July will test to see if I can lower again. My doctor has one patient on 1/2mg daily and one patient on no anti-rejection pills. As time moves on and the body becomes more adapt to the new liver, the anti-rejection medicine will be lowered.

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