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Diagnosed with Cirrhosis/what to ask?
I was diagnosed with Cirrhosis after they did a biopsy when they removed my Gallbladder. I have an appointment with the liver doctor next Tues. and have been reading about Cirrhosis and hoping to find out what questions to ask. I'm hopeful that we caught it early and that I can control my diet and exercise and keep it under control buy honestly don't have any idea what to expect and feel a little scared. I've got a little boy 41/2 and sure want to be around for the long haul for him. I'm 46 and 15 years sober but had about 10 hard years of drinking when I was younger. I'm just wanting to ask the right questions and make sure I'm getting the help I need. Thanks in advance for any help and I wish my best to all the people fighting this.
Ben
Ben
Hector,
Thank you so much for the response. I will take a notebook and questions with me. This is all very new to me but I'm learning fast and determined to stay positive and active no matter what the out come. I look forward to following up here once I know more and develop my best plan for moving forward. Best health and good wishes to you.
Ben
Thank you so much for the response. I will take a notebook and questions with me. This is all very new to me but I'm learning fast and determined to stay positive and active no matter what the out come. I look forward to following up here once I know more and develop my best plan for moving forward. Best health and good wishes to you.
Ben
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We all felt lost and scared when we where first diagnosed with cirrhosis. The nerves and uncertainty unfortunately come with the territory of having a serious disease.
...One very important thing to keep in mind... cirrhosis of the liver is a serious condition no doubt but for most people it is a manageable disease and some even are able to reverse it. For those of us who's cirrhosis can't be managed for whatever reason and our livers fail or we develop liver cancer, one possible complication of cirrhosis, there is always the option of last resort,liver transplantation. While transplantation part of the "best of all worlds" scenario, it is a life saver. Myself and many of my friends have had liver transplants and are very grateful to still count ourselves among the living because of it.
For you it is all new so it naturally will take some time to get "used to" life with cirrhosis. As you said thankfully your liver disease was caught now rather than when it had progresses even further. Like many diseases, if it is caught early we have a much better chance of better outcome when there is more options. Also being 46 years old is an advantage. Being younger typically means a better chance of recovering your health. Most folks take 20 - 40 years to develop cirrhosis and so are in the mid 50s to med 60s. The older we get generally the tougher it is to bounce back. We see this especially in liver transplant patients.
Of course a lot depends upon the particular cause of your cirrhosis. There are many, many causes of cirrhosis of the liver. Some of the most common being alcohol abuse, hepatitis C infection, fatty liver disease, hereditary diseases. Plus there are others also. Different types of liver diseases have their own particular prognoses although there are many commonalities among cirrhosis and its prognosis as while. Only your doctor can manage your particular individual liver disease.
I would say the First Question to ask is what if the cause of your cirrhosis? A liver biopsy can determine the cause by looking at the tissue samples taken. Different causes of cirrhosis have different characteris. Depending on the cause and advancement of your cirrhosis many times there are things we can do to either stop further injury and progression of our liver disease or at least slow it down. For alcoholic liver disease of course stopping the drinking of alcohol is primary. And since alcohol is toxic to the liver anyone which cirrhosis of any origin must stop drinking. Also should someone's liver disease continue to progress and they need a liver transplant to continuing living they will only be eligible to be listed for a transplant if they have stop drinking for at least 6 prior to being listed.
So besides wanting to know what the cause of cirrhosis is you will want to know what else you can do to prevent any further damage to your liver as well as what you can do to be as healthy as you can be despite having cirrhosis.
Many of us have lived many years with cirrhosis even with advance cirrhosis with its complications of ascites (fluid retention), hepatic encephalopathy (brain/mental issues), extreme fatigue. Living an active, healthy life is very important. What is possible varies from person to person as each of us experiences our cirrhosis uniquely. You must learn over time what is best for you. Of course a lot of it depends on the progression or improvement of your cirrhosis going forward. But there are basic guidelines that we all can follow to be as healthy as possible. Most hepatologists should have advice and some how literature that explain the basic dos and don't for anyone with advanced liver disease.
Here are some questions you might want to take to your appointment.
I would suggest bringing a note book with your questions and so you can write your doctor's answers as well. Everything go very quickly during our visits and we can lose track of things.
It is always best to bring someone with you as a second pair of eyes and ears an for moral support.
Questions for the doctor:
* What caused my cirrhosis?
* How advanced is my cirrhosis?
* Will I need a liver transplant?
*What can I do to prevent a further progression of my cirrhosis?
* Will I need further tests? Blood, scans, etc.
* What treatment is best for me at this time?
* Are there any medicines I should avoid taking?
* Do I need to be screened for liver cancer? How often? For how long into the future.
* If my symptoms get worse, when and who should I call?
* What lifestyle changes should I make?
* Should I change my diet?
* What exercises are good/not good for me?
Cirrhosis is a very complicated ad long term disease. It is not something that can be fixed overnight nor understood either. It is a learning process and there is a lot to learn. At first it may seem like a steep learn curve but realize you will have time.
Liver disease very rarely changes over night until it is very advanced. We all learn to have patience when we have cirrhosis. Nothing happens quickly with the doctor as well. There will be many appointments, blood tests, scans, etc. etc. You will need to be monitored periodically for the foreseeable future. Typical for years even should your cirrhosis resolve itself soon. This is because unfortunately having had our livers damaged to the point of cirrhosis we now are more likely to have certain medical complications related to our liver disease and some of them can be very serious. So really it is a good thing to be under the care of a doctor and watched closely so the doctor can be proactive prevent as much as possible to prevent or delay certain things from happening.
I do volunteer work at my liver transplant center and sadly see folks who weren't even aware of having liver disease (men who don't go to doctors) and they end up in ICU fighting for there lives suddenly. This is not something anyone wants to have happen to them or any loved one.
While a diagnosis of cirrhosis is nothing any of us ever wanted it usually can be managed to various degrees with the help of our hepatologists and their colleagues.
Let us know how it goes with the doctor.
Hang in there.
Hector
Cirrhosis since 2008, liver cancer 2010, liver transplant 2013