I'm sorry things seem so rough right now. Just last week I had a very inspiring conversation with a friend of mine about this same topic. I'm glad you brought this up since I think many of us here feel the same way and it's not spoken about enough in this group.
I am 41 with alcoholic cirrhosis. Recently I had a CT scan done that indicated the potential development for HCC (liver cancer). This potential along with the certainty of Atherosclerotic disease ( hardening of the arteries ) was a new development without a good outlook. It took me a while to absorb all the information I could and I only dealt with at my own pace. Finally I came to the conclusion to do whatever is necessary to change the one thing I could control- Diet. I could at least make my best attempt to prevent any further hardening of the arteries. This will also better prepare me for transplant surgery if it becomes necessary and available. Though this is a long way down the road this is something I almost overlooked, it's time to do something about the things I can change so that I can be here for my loved ones.
Search for the good in every bad even when there is little hope to be found. Stay determined and do everything in your power to change the things you can, you and your loved ones are the ones to benefit. Life is wonderful so if your life is to be shorten because of this disease live it to the fullest. Too often many of us are overwhelmed with depression and in time it is only certain to make your condition worse and this is not the way any of us would want to spend the time we have left. Also remember that there are many unknown answers when it comes to cirrhosis though this may be frustrating at times it also presents us with the chance for a miracle. So never give up hope my friend!
I am very sorry for what you are going through. I do not understand why you think you are dying. I did not even treat with interferon and it took me nearly a year to start feeling better. I still suffer from fatigue as most of the cirrhotics here do. You have not decompensated so how do you know your liver is not better? It takes time for it to recover and even more time to feel better.
I think your fear is what is doing you in.
I recently found out I have HCC. I too was very frightened. But you know, I am simply not ready to die and as far as I am concerned I will stay positive and I refuse to feed the fear monster.
None of us know how long we have. People with cirrhosis even decompensated cirrhosis can live a relatively long time.
Imagine the worst, nothingness and void and open your eyes and look around. You are still here guy, get busy living and loving.
Well put rivll! Since before diagnosis one thing has never changed, someday my time will be up and I still don't know when :)
Great responses Randy and rivll. When I was first diagnosed, then told of other issues, then told I was not a candidate for transplant...after it finally hit me, it took awhile for what that actually meant to sink in, I was very scared. After a lot of soul searching I came to the realization that from the time we are born we know we are one day going to die, exactly when we do not know. Well, even though I've been diagnosed with this and other things, I still do not know when that day will be. I do believe in miracles, miracles happen every day. Also the question came to my mind.. how am I suppose to live? How am I suppose to act? to think? to feel? That had me stumped for awhile. And it came to me, act like me, think like me, feel like me. I am still the same person. I know that one day I will die. I do not know when that day will be. Nothing has changed in my life from the day before I was diagnosed except now I am forced to see the importance of dieting, exercise and living each day to the fullest. That is kind of a blessing if you think about it. I now appreciate things that I use to take for granted. I am not going to give in just because I have this diagnosis. I have a choice... do I want to spend the time that I do have focusing on living? or dying? I chose to live. :)
From what I recall, your last liver biopsy showed f3, shortly after you treated your Hep C with triple tx and obtained SVR, you recently posted that all of your labs (INR, Creatine, Bili, enzymes were all in the normal range other than your Bili was a little elevated at one point, and you are not diagnosed with any other conditions that would damage your liver, from what you have posted in the past or mentioned to me. I do realize that it's possible that you may have progressed to Cirrhosis while you were treating Hep C or shortly after. I also realize that it's possible that you may have some other condition that could be harming your liver (autoimmune?, toxins?, vascular disorder of liver?, shunt?). I guess anything is possible. But if we stop and think about what is likely, I think the chances are more likely to be your anxiety and depression which were perhaps worsened by your tx meds. So, what does your hepatologist say? He/she should definitively say whether or not you have Cirrhosis and, if so, whether or not your liver is compensated. These things can be definitively determined by various tests. There is no need or reason for you to speculate. If you haven't had a biopsy in 3 yrs and if your hepatologist recommends it, a biopsy will say whether or not you progressed to Cirrhosis. If you haven't had labs done in the last 6 mo and your hepatologist recommends it, your labs will be interpreted by him/her and definitively say what your MELD is. You don't need to guess or speculate about it. It's clear cut. Ascites can be seen. Varies can be seen. Hepatic Encephalopathy can be diagnosed. You don't need to diagnose these things, that's your hepatologist's job. Either you have labs that demonstrate decompensation or you don't. Either you are diagnosed with varices, ascites, and/or HE or you're not. It doesn't make sense to worry about what's going on inside your body when 1) all of these things can be definitively diagnosed, and 2) even if you do have decompensated cirrhosis, symptoms can be managed and treated to keep your liver functioning as well as possible for as long as possible until the day may come that you may need a transplant. That is a lot of "it's" and "maybes". In my opinion, you are going through a very complex and very self destructive thinking process that is both obsessive and compulsive. I don't mean that as a negative or judgmental statement, just an unprofessional observation. As you know obsessive and compulsive thinking and behavior usually arises from anxiety and leads to depression. If you can reduce your anxiety and decrease your depression, perhaps you can interrupt your obsessive thought patterns and lower your fears.
Mckansas has been diagnosed with ESLD for over a year, heartinthekeyes for 2 years, svettes for 4 months, all are managing symptoms and working on transplant approval. You don't know if you have cirrhosis, let alone decompensated cirrhosis, so far as I know. Has something definitively changed?
Take heart my friend. Claim happiness.
thank you all so much for your postings.
i have to say that my last biopsy was back in 2008 wich was showing f3,shortly after i treated with soc,but did not clear, only partial rerspondet.
after this i started looking out for trials as i knew i should not wait for the pi s hit the market.
but at that time there where no trials for nonresponders in my country,so i had to wait for tela/boce to be available.
so i guess its pretty sure i progressed to f4 while waiting for the pis.
by november 2011 i started triple tx with telaprevir for 48 weeks and iam now 9 months post and called SVR.
the docs keep telling me not to worry as the say my liver will improve.but i DO worry as i feel more and more worse.i know the anxiety does not help in this situation but i feel like iam on my way to die and there is nothing can be done.
i asked my doc before 6 months for a biopsy and he said we should wait a bit as its to close after finishing tx.
they did a fibroscan wich was 10 kpa,would equal to f3 they said.but since the biopsy is still the golden standart to know where your liver is i think i dont trust the fibroscan to much alltough the doing fibroscans since 2005 and the say it s pretty accurate to confirm or rule out cirrhosis,
in the neantime my bilirubin started to raise,but its my indirect bilirubin so they think it could be a genetic defect(gilbert syndrome)
in 14 days i will see my hepatologist to discuss my recent labs and i guess i really want to know whats going on with my liver.i know a biopsy will help me to knoe where my liver is,but i starting to think the biopsy will show 99% i have cirrhosis.
i just feel so sick,i feel cold all the time feel like i have a constant flu,have to sneeze everyday several times,and i have pain in my muscles/joints wich iam sure are all symptoms of advanced cirrhosis.alltough my labs like inr,platelets,albumin,creatinine are all fine just the bilirubin is high.
for me this board is very important as my wife and family all think iam worriy to much as the doc at the transplant center told my mother last time i realy not have to worry.but how can he know whats happening with me without a biopsy.
i feel so alone with my fate.and its to heavy sometimes to carry.
thanks again for all the helpfull postings.