So I've been trying to proactively research what else I can do and I was trying to get information about transplant lists in the USA. I can't even get information. What I'd like information about is live donars. If you have someone who volunteers how do you find out if they are a match? Is it just blood type? Or is it more involved? If all that is good what is the surgery like for both parties? And then what? Does the recipient receive antibody meds for the rest of their lives other donations?
My ultrasound and CT scan showed liver fibrosis but I have an appointment with a top specialist in NYC next month. My Endocrinologist gave me those results and did not order any other tests. They just prescribed weight loss and diabetic meds. No referrals or staging or biopsy or anything. I feel it was a very serious diagnosis with a very haphazard treatment. So I'm not leaving it to my local doctors.
It may sound like I'm jumping ahead with looking into transplant info but it took so long to get this diagnosis. My General practioner told me I was healthy! I've been complaining of pale stool for 4 years. I have no idea how much damage there is and they haven't even referred me to find out! I feel like I may not have as much time as I think and need to get a head start on things. And from what I'm reading, this very difficult in the USA. And this can all progress very quickly. I'm just so upset and frustrated right now. And looking for answers
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Lara86
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It sounds as if you are possibly in the early stages of liver disease with more than enough time to turn things around. Do you have any reason to believe it is worse than your physician is indicating? As far as live liver transplants there are only a few transplant centers in the U.S. that perform them and the procedure, although around since 1989 or so, has limited data based on the relatively low number of transplants done in comparison to deceased donor transplants. The patient still has to be listed with UNOS and the donor must go through an extensive evaluation to make sure size, structure of liver, blood type etc are compatible.
I'm hoping I'm in an early stage and there's time to turn it around. I'm praying that the specialist will tell me that.
I have lost faith in my local doctors. I've been having multiple red flags for 4 years. I've been to 2 different gastroenterologist. The second one told me pale stool is normal. It's malabsorbtion and he did and upper endoscopy. I had a CT scan 3 years ago that showed fatty liver but it didn't show what they were testing for (adrenal tumors) so I was advised that my CT scan was negative but liver was fatty, watch my diet. I had no clue it could ultimately lead to cirrhosis! No one ever connected fatty liver, pale stool and intermittent elevated enzymes?
My Endocrinologist hadn't even looked at my ultrasound until she was in the exam room with me. That was where she was shocked to see what my liver looked like. And then the insurance still didn't want to cover the CT scan.
So, yes, I'm hoping and praying that it's at an early enough stage to turn it around. But I've been wasting 4 years running back and fourth with doctors who only want to treat the common cold and simple diabetes. I feel that I need to get a jump start on my research. I need to have plan A,B and C lined up because I don't know what's next. I had never even heard of liver fibrosis up until that moment in that exam room. I don't want to be that unprepared again.
Forget the States, we have a small home out there and I spent one night in Hospital with acute bronchitis. £11,000 and six months later I was finally reimbursed by my insurance company. My husband is dying of liver disease and beyond a transplant but his specialist at the London Bridge Liver Centre mentioned that India is good for transplants which is great if you are still fit enough to make the journey.
I live in the states, waiting lists are long here for livers I have a few friends waiting in very poor health. But you need to get more information as you can live forever with fibrosis, as long as it isnt progressing to end stage that will put you on the transplant list. A liver biopsy is the gold standard here to stage your disease and diagnose what you have and dont have. I would seek a biopsy with a liver doctor there first you may never get to end stage liver disease and need a transplant. Good luck to you let us know what you find out.
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