In Limbo

[Chaibooboo]

Hi everyone. I hope you are all well today. It has been 4 week now since I got told I have reflectivty on my liver, in line with early Cirrhosis. I still don't know exactly what is wrong with me or what the future looks like. The not knowing is so hard it's driving me crazy!! There is such a wide range of what it could be. I'm going mad with worry and can't take the waiting. Sorry for the rant. I just feel n complete Limbo and trying to hide my emotions from my 15 year old makes it harder. xx

[jojokarak]

Does your 15 year old know your under the hospital and waiting for a diagnosis? If not, I think they will know something is going on so just be honest it may feel like you are waiting for a sentence but plenty of people on here have fought the battle and won. I had to wait 9 months initially for a diagnosis and everything was threw in the pot about what it could be and to be honest I was relieved at the time I had cirrhosis with what else they were talking about. Nothing is in your control at moment apart from how you deal with each day so are you going to sit around worrying or get on and enjoy each day and then deal with whatever you finally get told x

[Chaibooboo in reply to jojokarak]

Yes my 15 year old knows they are investigating something. One day I am positive and think it may not be as bad as I think, and the next day I'm a mess. Normal I suppose. xx

[jojokarak in reply to Chaibooboo]

Certainly is hunni but just try not to drive yourself insane in the meantime x

[Ronin990 in reply to Chaibooboo]

I'm in the same boat as you. Waiting till end of November for my gastro appointment. I'm just enjoying every day as normal but go up and down like you. I'm on anti depressants now too. Be pro active about diet and everything else in the meantime. Not much else we can do.

[Identity75]

The waiting for your diagnosis is awful. I went for a few months before mine was pinned down, it felt like they were working through the big book of liver diseases and ruling one out at a time.

The liver is a complicated thing. When it goes wrong there are so many possibilities and it presents so differently in all of us. Just trust that your team are working hard to correctly diagnose you.

You’ll get there soon enough, although having a real diagnosis is a relief I’d be lying if I said that was the end of all your waiting.

Stay strong.

[Chaibooboo in reply to Identity75]

Thank you xx

[RodeoJoe]

I went 15 years and even after transplant didn't get a diagnosis. The truth is sometimes they just don't know.

However unless it's a known virus or auto immune the treatments are generally the same I.e. monitor and wait to see how things develop.

It's frustrating, and yes, it can seem like a limbo. My suggestion would be to consider that as liver disease has been diagnosed and your under observation a precise reason is likely to be academic as the treatment is nearly always the same once virus or autoimmune has been discounted.

Good luck.

[matt137]

Hey Chaibooboo.... i think we all went through the mad craziness of panic and not knowing what to do when were told something is wrong with your liver. The word cirrhosis when googled gives some extremely frightening results. I went through it aswell, and sometimes it does sneak back up on me and I have another little panic. My diagnosis was simple. Cirrhosis caused by alcohol. They did some Hep tests which were negative but that was it. But now being 12 months down the line Ive kind of understood that theres is nothing i can do about it. So why spend day after day worrying about it?! Some people live a long happy life with cirrhosis. I hope we both are one of those!

All the best Matt x

[ange1960]

I hope today is a better day for you. I know just where you are at. I'm in the same boat, waiting and worrying. It's horrible. My fibroscan and blood test results show Cirrhosis, but consultant not convinced it is..! waiting for a Liver Biopsy now. Was told on Monday that biopsy will happen within next 5 weeks, and that it is the only way to confirm a diagnosis either way. So trying to hold it all together and not assume the worst case scenario. I think I'm past the anger and panic, I was very tearful and emotional for a week or so. Feel more settled now.

Try and stay positive, Maybe be honest with your 15 year old, without over dramatizing. They will understand the mood swings/fears & emotions you are going through then. I know your instinct is to protect them, but try not to hide too much how you are feeling. You'll be amazed how resilient and how much support they can give you. Nothing worse at that age, knowing something is wrong, but not being told what is going on. Their imaginations run riot. Take care and hoping you are having a better day today

[tim90125water]

Hi, I am in a similar position, four weeks ago I had an internal bleed and the good news was they told me I had cirrhosis. I was discharged with just a diagnosis and no idea of how severe the problem was. I have had numerous tests but still no little about the results. I have found my gp to be excellent and happy to explain his understanding of the diagnosis. My appointment with the specialist is still 4 weeks away, this is normal. my advice for what it is worth is stop drinking, it can only help. Make an appointment with your GP they will have some of the information and be able to help explain it, mine also gives me extra blood tests so I can get feedback every couple of weeks rather than waiting another month.

Good luck, have all the tests, ask whoever does them to explain anything they can.

Tim

[Mel2637]

I have had cirrhosis for several years. If I had fatty liver didn't know. My blood work was always fine. I have diabetes as well. It was scary to find out I had cirrhosis and basically knew nothing about it so I read whatever I could find. I see liver specialist and blood doctor because my platelets are low. The best advice I have is do whatever your doctor says and take it one day at a time. Good luck and keep us posted.

[Sherrych]

I've been there myself and hope you get some answers soon. I've never heard of flextivity of the liver, what is that exactly!