So my first appointment with a liver specialist will be May 7. It's at a top facility in the USA. I'm so scared to hear whatever it is they are going to say.
In the meantime I would like to be proactive in trying to prolong my life if that's at all possible. My diagnosis is liver fibrosis but I have no idea what stage. It's due to fatty liver caused by metabolic syndrome. I've drastically changed my diet and haven't had any alcohol. I was wondering what else I can do. Has anyone been able to turn around a later stage of liver fibrosis?
Thanks in advance. I hope I the gutter I can come on here and answer someone's questions, I'm just not sure that I can answer many yet.
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Lara86
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Just be careful, don't go trying or playing around with any herbal remedies as some can make things worse, even though some manufactures recommend them. Milk Thistle and St John's wart are a no no. Avoid multivitamins too. I was once told that there is more iron in a damaged liver than in a healthy one, so don't go over doing it on iron rich food stuffs.
If I was you, I'd also check any other medication that I was taking and read the side effects warnings, sometimes it can say, "Not to be taken if you have kidney or liver damage".
Try not to worry. The liver is a very forgiving organ. Now your aware of our fatty liver condition you are rather fortunate, Some people never get to know the damage their doing until it becomes repairable. Once the cause of your fatty liver is known, then with a modicum of treatment your liver should make a full recovery. I'm sure that now you've learn't a lot more about this wonderful organ, you'll learn to love it and have a great deal of respect for it.
I don't have a reliable person for that. I was actually thinking maybe I should if I could record the visit. All the people in my life rely on me for that and they only 2 that can go will not hear what is being said.
I have not had a biopsy. I've been reading that it used to be the gold standard but it is also risky and invasive and they have other methods they use now. Mt Sinai is a top liver specialist and the Doctor I'm seeing has multiple 5 star ratings. Hopefully I can trust what they suggest. I'm already impressed with the fact that they requested all my labs, scans and notes be faxed prior to my appointment for the doctor to review. None of my local doctors has done that. Half the time they can't find the records of the tests they order!
I would try to record your visits - get a good recorder because voice levels can vary so much. I go with my husband and take notes, learned that from my parents. I keep a smallish notebook with me and an updated list of everything he takes prescription and not with the dosage and times: furosemide 40mg 1x am, tylenol 325 mg as needed, etc. At our visits they always check your medication list [we're in Minnesota]. Also, we found it helps to keep a list in the bac of the notebooks of the year things happened, because it is so easy to forget and in my husband's case we go to the local VA hospital too. So we have the year he had a spinal fusion, and the year he went to the hospital with liver & kidney failure and the year he broke his foot, etc. since they were all around a similar time frame.
It may be possible to get a patient advocate to be with you who could take notes, some places might have that- I'm not sure, but you could ask.
Liver biopsy is not recommended as much these days in part, I've read, for 3 main reasons 1]it only tests a very small area of the liver and may miss important things 2] there is a significant risk for bleeding and 3] ultrasound has gotten much better at viewing things and there is now a fibroscan [sort of similar to ultrasound] which my hubby has not had, but some on this site have.
I just read your post to Laura about the biopsy, surprising that my FIL doctor did want him to have a biopsy, he said this is the only way to stage or determine why he is having liver issues.My father-in-law didn't do the biopsy due to his insurance. He was afraid if the biopsy showed it was due to alcohol he would be canceled because he does have the clause in his policy. We don't know if a biopsy would determine that but he didn't want to take that chance of being canceled. After reading how invasive a biopsy can be, I am glad he didn't. I did hear that fibroscans can view the liver and give a score on the liver but not the actual cause of your liver problems I only heard that not sure. We just take one day at a time. TC
I don't think there is any way to tell if the liver disease is caused by drinking - other than a doctor asks if you drank and then puts that down as the cause. My husband's liver doctor said most liver disease is NOT caused by drinking and he wished society and the media would stop thinking and promoting that it is. My husband's probably was, but one of my grandmother's died of cirrohsis and never drank. Sounds like you guys might look into getting a different doctor - as my OB/GYN used to tell me "you pay me and you can take your money and pay another doctor" and I really liked him.
Can you get a copy of his insurance coverage and see what it says and what it covers, sometimes people think something that is not accurate. Some policies do not cover the "addiction" treatments- detox and mental health services realated to getting off and staying sober but DO cover actual illness.
Is your FIL a veteran? He might be able to use a VA hospital if there is a good one near you if he is. They are just really lousy about dealing with records
Found this online Find a FibroScan® system near me in Florida
In Florida, visit a location near you in Coral Springs, Crystal River, Fort Lauderdale, Fort Pierce, Gainesville, Jacksonville, Miami, Orlando, Sarasota, Tallahassee, Venice, Zephrhills.
I don't remember if you said if someone goes with him to dr appts. to take notes, but it can be a real help, especially later on trying to remember what was said.
Feel free to ask me anything and if I can help I'll be happy to. This site itself is very helpful and not everyone is in Great Britain, but you can't always tell.
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