Normally I use another message board, but today I found this one. Maybe you can come up with some ideas.
I'm a woman with a history of drinking alcohol. When I developed some symptoms (ascites and jaundice) I was diagnosed with cirrhosis. No biopsy was made, but a fibroscan. A CT showed portal hypertension. No varices, no hepatic encelopathy.
I stopped drinking alcohol at once. No help needed. That was over two years ago.
Much has changed since then. No ascites, no odemas, healthy weight, much more energy, better sleep. I'm extremely thankful and happy! But... As I'm feeling so good, I'm getting more and more confused by the diagnosis.
I have no other health problems, no medication, no symptoms. When I ask my hepathologist how she can see that I have cirrhosis, she shrugs and says: ultrasound looks fine, only blood results are too bad (ast 48, alt 27). When I ask my normal doctor, he says, if he wouldn't know my background, he couldn't tell.
For me, this is a problem. How can this be so complicated to find out what it is? Could it be "ash"? I'm really confused. Maybe someone has an idea.
Hi there NinaNon, welcome to this lovely small friendly site.
I know it must be a worry for you.
Feeling like you have not had an exact diagnosis.
On the plus side, just look at what you have achieved!!! Wow, I am impressed.
You were spoken to, told you had a problem and you promptly dealt with it.
Yes, I am impressed.
Not so easy for some. I am not qualified to help you with the steps going forward. All the same I applaud you, well done for your achievement so far. It’s great to hear you are feeling well.
I can assure you that there are folks on this site more able to advise you further. They will follow me.
For now, may I just say a huge welcome !
You should be so proud.
Stay strong. Stay safe.
Jaycee xx
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Thank you for your kind words! Oh, it wasn't easy all the time. The symptoms were so hard sometimes, and also the feelings of guilt. I've read a lot about the wonderful organ the liver is and sometimes tears come because I've almost destroyed it...
So, I'm not really "proud" that I was able to help my body to recover. Because let's face it, I was the one who did that damage. But then, I'm happy that I could prevent the worst. My eating habits are a problem right now. I know sugar is not good for my liver, I'm working on that.
The thing is that I would really like to know what state my liver is in as the risk of liver cancer is so high as I was told.
Bye for now!
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Hi there NinaNon, try not to allow the guilt in . My word we have enough in life to worry about and survive. Without the burden of a guilt sack. To hoist around.
Yes tears come there is fault. You have to realise that yes you did this but YES you changed this.
I for one definitely applaud you. Regardless.
It’s not easy none of it is. Still I come back to how far you have come.
They should be monitoring you now. Blood tests, scans, and endoscopy. The liver people in the hospitals are amazing.
You will be in such safe hands. I was in the Poole and Bournemouth units. Absolutely brilliant.
I was tested so regularly, they were totally on top of everything.
I had liver cancer, I was so lucky to have had a liver transplant.
Last year, so just one year into recovery.
Like I said I am no expert. I am qualified in only that I survived.
I think that living day to day with a plan of good healthy eating and good exercise can only help you. I know you must be a bit scared of what the future holds.
Our liver life’s experts, on this fabulous site will be here soon to help and advise you. Please remember that no one is medically trained on these sites.
Your doctor is the best person to get definitive advice from.
Lots of folk on here will have been through the many different varied forms of this disease. They can help with practical advice.
I can only give you love, hugs and support for the heart and soul.
Hi NinaNon, I am also a member of both forums so have looked back at your earlier posts on there and you had a diagnosis of cirrhosis due to alcohol use with the side effects of portal hypertension, oedema and chronic fatigue.
At this stage with ascites or oedema your liver would have been in the decompensated bracket. However, as you are now following a cleaner, healthier lifestyle your liver has returned to the compensated stage and your health sounds pretty stable.
My hubby was the same in that he too had decompensated cirrhosis at the point of diagnosis (his due to auto immune liver disease) and over the years since then his liver has returned to a compensated state where his has no glaring outward signs or symptoms of cirrhosis. Chronic fatigue and minor HE are his main issues together with other small niggles but no ascites, no current varices, no jaundice etc. He just gets on with life the best he can and we make the most of good days.
I see on the other forum you were questioning the portal hypertension as you had no varices - my hubby has portal hypertension and has had varices but has never had ascites or oedema so you don't necessarily get every symptom going. It sounds like you've turned you liver round to a good degree.
Just keep up the good work and hopefully you'll continue on with a stable liver and be ok. You should have an ultrasound every 6 months to check your liver and other organs and blood tests to monitor. I believe one of your doctors had you terrified about liver cancer - whilst people with cirrhosis do have an increased chance of developing liver cancer it isn't a given and doesn't happen to everyone (no where near). This is why you need such regular monitoring so that any changes are picked up and dealt with early.
Thank you very much for both of your kind and informative answers! 🙂
Yes, the recovery process is really wonderful.
And yes, there are not always good doctors, which is why I'm pretty scared of getting cancer (quote: "the question is not IF you're getting cancer, the question is WHEN.").
Then again "my" hepathologist says that I have best chances to get very old with my liver... That's quite a difference... For me as a patient it's difficult to tell whom I trust.
As this message board is focused also on being kind to our liver, are there any habits, rules, ideas you can share with me?
Welcome to this rather quiet forum. I hope you can find some answers to your questions.
I used to be a member of that other website you referred to , but left because I felt it was turning into a Facebook style page where people tend to just talk about themselves instead of offering help, advice, and support.
Anyway, going back to your post. May I ask please if you suffer with depression? I ask this because I firmly believe that there are a number of people out there (like myself) who go on to develop a drink problem with alcohol, but don't become addicted. It's a form of self-medication to try and lift the gloom in our lives, or to block out a traumatic time or experience.
So, I see you have suffered with Ascites and jaundice in the past, and it would appear that your liver has been able to recover enough to be able to preform most of it's 500 various functions. This is all good stuff. Also being able to stop drinking when you got your, "wake-up call" speaks volumes as to your commitment to want to get better.
You say that you don't have Varicies,. Normally a person who shows symptoms of portal hypertension would be expected to have a endoscopy. Although Varicies can sometimes appear on a CT scan, an endoscopy is a better way of identifying this. You appear to be quiet knowledgeable about liver disease, so I hope I'm not saying something that you are aware of.
Normally a person may suffer with portal hypertension when the scaring on the liver becomes such as to prevent a sufficient blood supply. This is when those little veins begin to develop inside the oesophagus and stomach, and as you know these become varices. Because the blood flow is restricted, pressure builds up inside the portal vein which later causes these tiny veins to burst.
It sounds like you may have had portal hypertension in the past, but it never got to the point where variceal veins were formed.
Sadly I have been through every symptom associated with liver disease. I have had, mild ascites, I had a variceal bleed (that was my wake-up call). I've had a bad case of HE which still causes me problems mentally. I've had liver tumours and a liver transplant. So, I can talk about this from a personal perspective. I have completed two online courses on liver disease (Sadly which are no longer available) and so I became knowledgeable. To this end I put together my own Alcohol-related Liver Disease website: tllp.co.uk/ here I have taken information from various respected medical websites and put all the information together in one place.
One of my biggest bugbears, (and I think I can echo your frustration here) is the lack of information we received from people in the medical profession. The way I explain this (and a lot of doctors don't like me for it) is that I explain how back in the Victorian era Doctors's were all regarded as men of science. They used words like, "How, Why , and Who". They asked questions and went in search of answers. Now-a-days it is much different. Most GP's use words like, "Could be, or Might be, Possibly be", Its is as if they just guess and try to fob us off. They no longer seem to question the science of it all. This doesn't apply to all doctors. A good hepatologist will normally take the trouble to explain things, and answer any questions. Some are grateful that you have shown an interest in their chosen subject.
So keep asking questions, and don't be afraid to speak out.
If you prefer to message me privately, then please feel free, and once again, welcome.
Yes, I absolutely agree on what you're thinking about doctors. Many just don't seem to have any real interest OR enough knowledge. My GP for example says every time I ask him a question, that he's no liver specialist and comes up with vague advice (sleep problems? Maybe try meditation. Weak and tired? Maybe try that Vitamin shots... I'd have to pay on my own).
My hepathologist is relaxed and very religious. I like her how she's comforting me, but to be honest she also seems to be a little bit confused (odemas? No, not a liver problem, talk to your gynaecologist, many women experience it) and can't really explain stuff.
As for endoscopy, I had one, and it showed no varices. I was very relieved! Even more today as I've watched the video that is on your webpage. 😬
Your webpage is really good and has lots of information, thank you for sharing all the info and also your personal thoughts!
You asked if I am depressive. The problem with alcohol and depression is the thing with the hen and the egg...
What I can definitely say is that I'm really very happy most of the time, although my life is not as it could have been. I never ever miss alcohol. I'm relieved, thankful, that it's not in my life anymore. Not consuming that poison anymore is the joy of my life. When I watched that video on your webpage, showing the drunk people, I was only like: "I hate, hate, HATE that poison!"
Today I love being clear and authentic every moment. BTW my mother was/is an alcoholic, she never left that behind, no liver damage. She has been drinking since I was a baby, which makes everything even more sad.
Now that she's old, she's only having a few drinks some nights a week. She knows if she really gets drunk, she might fall.
I'm proud that I've made a clear cut. I've left all that nasty, humiliating, frightening stuff behind me.
Although at the beginning, my liver situation was acute life threatening, I was never so scared as I was when I was drinking.
I've spent some time to think about alcohol. It's ironic: every thing that the poison offers in the beginning, turns into the exact opposite in the end. At first, I felt courageous when drinking. After a while my fears got bigger and bigger, turning into something almost absurd.
I could go on like that. Only after I've quit altogether, I become aware how much that poison changes feelings and personalty. And the changes take time. But when you feel them, it's like a miracle. Sometimes I wonder who this relaxed, humorous woman is that lives in my apartment 😁
So, I'd love to do this: what about not looking at the negative side, like how hard it is to quit, it that social events can be difficult and instead collecting some of the positive changes?
Okay, I'll start. 😊
I never thought my sleeping problems were because of alcohol - I thought I could cure them by drinking.
I thought drinking alcohol made me funny and creative. In fact, I had weird thoughts and was not funny, but miserable.
I wanted to be happy. Instead, I was very sad. I've never cried as much as I cried when I was drinking. Today, I have string feelings, and I'm not afraid of as they don't control me, I control them.
I wanted to come across as tough. I was so weak. Now I watch my body getting stronger each day, feel the energy coming back. And I'm not tough - I simply know who I am and what I'm capable of. Good way, as bad way.
I was bored and thought alcohol could change that. But I got only tired and had no interest in anything. Today I'm very curious and interested in almost everything. I think alcohol is a thief of colors - now my world has every one of them back, even the ones I don't like, but hey, I can handle that. 😉
Although I wasn't drinking vodka for breakfast, I knew that stuff is bad. And so I always felt guilty. Today, even if I'm making mistakes, I always know that on a large scale, everything is okay. That it's just a mistake.
Okay, I guess I could go on for hours, but those are the great changes, I think.
And BTW - this is my very personal opinion: I think alcohol is a poison for the human body, and not only when you're "having a problem". After all, it's a drug!
in reply to
Hi
You should be so proud of yourself. My son once said if alcohol had been discovered today it would be classed as a drug. Take care and stay safe Lynne xx
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